BGB Master Completed

BRAIN GO BOOM!
A book as remembered
.
by a giant, ruptured
brain aneurysm survivor
Brain Go BOOM!
Author/Survivor: John Cooper
John Cooper, RN
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Brain Go BOOM!
Author/Survivor: John Cooper
Brain Go BOOM!
Copyright ©2015 John Cooper
All rights reserved.
This book is protected by copyright. No part of it may be reproduced, stored in a retrieval
system, or transmitted in any form or by any means, electronic or otherwise, including email
forwarding attachments, mechanical, photocopying, recording, scanning or otherwise, without
the prior written authorization of the author.
ISBN# 978-1-4951-5248-1 (eBook)
Warning:
This book is best read with an open mind. It may cause the reader to cry, laugh or possibly
devise their own ideas on how to help others. Helping others may lead to high states of
euphoria which is considered to be highly beneficial to the reader’s wellbeing. BOOM!
Disclaimer:
Neither the information in this book, the author, nor anyone mentioned within this book is
intending to use the information as a substitute for the medical advice of physicians or for selfdiagnosis
or treatment.
Readers who decline to consult a medical professional assume all risks of any or all injuries. The
reader should consult a physician in matters relating to his/her health and particularly with
respect to any conditions that may require diagnosis or medical attention.
This book is a work of non-fiction. I have tried my best to recall events, locales and
conversations. After much research, it was recommended that I refrain from use specific names
in order to maintain anonymity. In some instances, I may have changed the names of individuals
and places; I may have changed some identifying characteristics and details such as physical
properties, direct quotes, occupations and places of residence. Thank you for understanding.
ISBN# 978-1-4951-5248-1
(eBook)
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Brain Go BOOM!
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This book is dedicated to my daughters.
To my oldest daughter, M, for giving me the inspiration to write this book;
to my youngest daughter, L, for understanding that daddy has a boo-boo in his head.
This book is also dedicated to my wife, Laura, for her unconditional love
and for believing in me; for believing in us!
I love you all, to infinity and beyond.
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Contents:
Mission Statement
Chapter 1: “Now boarding anyone with special needs or children under 5 years of age.”
Chapter 2: The Brady Bunch Helicopter
Chapter 3: “Hey hon, it’s me. They want to do surgery. They’re going to have to take part of
my skull off. I love you. I’ll be alright.”
Chapter 4: The Angel and Johnny Cash
Chapter 5: Big, Beautiful, Blue Eyes
Chapter 6: Cleanup in Aisle 4...Oops, I Did it Again
Chapter 7: Proud
Chapter 8: Now Paging Doctor Robot
Chapter 9: “That’s What Friends Are for...Keep Smiling, Keep Shinning”
Chapter 10: My African Princess
Chapter 11: Am I Having Another Brain Aneurysm?
Chapter 12: “Eleanor, stop buying that Tidy Bowl for the toilet, it’s turning my balls blue!”
Chapter 13: The Race is on With Apollo Ono
Chapter 14: Sugar with Some Rocky and Water Bottles
Chapter 15: No Children Allowed in the ICU
Chapter 16: Time to Pack up and Go Corky
Chapter 17: My New Dwelling
Chapter 18: The Schedule and the Shower
Chapter 19: Walking and Putting Pieces of the Puzzle Back Together
Chapter 20: Finally, I Get to See my Girls
Chapter 21: Visitors Die Down; But it’s Hoagie Time
Chapter 22: I’ve Got my Walking Papers…RED LIGHTS
Chapter 23: Home
Chapter 24: Now Home, New Life, New Rules, and New Challenges
Chapter 25: Church
Chapter 26: The Driver’s License Center (DMV)
Chapter 27: The Party—It Couldn’t Have Come at a Better Time
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Chapter 28: Keeping On…Groundhog Day
Chapter 29: “Let’s Talk About Sex, Baby”
Chapter 30: Squirrels!!
Chapter 31: “On the Way to Cape May”
Chapter 32: Johnny’s Getting His Skull Back
Chapter 33: Yellow Lights
Chapter 34: Driving Miss Daisy Never Went Like This
Chapter 35: DABDA: Denial, Anger, Bargaining, Depression, Acceptance
Chapter 36: “Does your cell phone work? Can I borrow it?”
Chapter 37: Let’s Pause for Station Identification
Chapter 38: “Oh Johnny Boy”
Chapter 39: 18 Month Plateau: “That is where you will probably be for the rest your life.”
Chapter 40: Disney Cruise: “Why is Daddy Crying?”
Chapter 41: SSDI
Chapter 42: Aneurysm Support Group
Chapter 43: “Where is Johnny at?”
Chapter 44: The Role Reversal
Chapter 45: “You Need to Write a Book, John”
Chapter 46: Why is it so Complicated to Give Back and Pay it Forward?
Chapter 47: I Had No Idea
Chapter 48: Botulism
Chapter 49: Changes
Chapter 50: Funeral Songs
Chapter 51: Losing Weight, Popping Tags and Concussions
Chapter 52: “99 Bottles of Beer on the Wall”
Chapter 53: My 4 F’s
Acknowledgements
Resources
Closing Note
About John
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“I am on my way,
I can go the distance,
I don’t care how far,
Somehow I’ll be strong.”
(Disney’s Hercules movie)
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M
Mission Statement:
y original objective in completing the complex task of writing a book after surviving a
giant, ruptured brain aneurysm was to share my version of what happened with only my
family and friends.
As I became further engrossed in reliving and writing my story, I began to realize the great
injustice to me, and possibly others, if I didn’t share this beyond my family and friends,
especially to those who had suffered any sort of brain injury. I am one of the lucky ones;
perhaps this story will speak for those who are not able to or for those who cannot write about
their story. Everyone’s circumstances differ and my purpose became clear: to shed some light
to other families and friends who may not understand what their loved ones may be
experiencing.
The first two-and-a-half years after my surgeries were pure hell! Did it get better? The answer
to this can be found by reading about my journey. I was eerily hesitant about hanging out my
dirty laundry and personal information, but something clicked inside: “This is as real as it gets,
John. It’s not all about you, so share it and put your pride aside.” This book represents my
recollection, opinions and personal view of what happened to me and my family after my brain
injury. Love it or leave it, it’s what happened.
The scope of my objective unexpectedly expanded during my several thousand hours of resting.
Commercials for the Wounded Warrior Project aired. I cried during every commercial and felt a
deep sorrow for each survivor’s story.
I came out on the better end of a brain injury, but why? BOOM! This was my opportunity to
pay it forward. If I offer my book at no charge and, instead, encourage readers to make a
donation to the Wounded Warrior Project, my mission will be complete.
I hope you enjoy reading it. I encourage you to join me in supporting our wounded heroes by
making a donation to the Wounded Warrior Project. Will YOU pay it forward? I believe you
will.
God speed and happy reading.
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Chapter One:
“Now boarding anyone with special needs or children under 5 years of age.”
L
ooking back, I can’t tell if things are clearer, hazier or if I have blocked out certain events
to maintain my own sanity. The past five years have been a complex culmination of the
torments of hell, coupled with some of the most euphoric highs I have ever experienced. If
gingerly mixed into a pie, with the most expensive and exotic ingredients the world has to offer
and baked perfectly at 325 degrees for thirty minutes by Wolfgang Puck himself, no one would
dare take a bite of this disaster—and I mean nobody!
It started off with an early flight home from Orlando to Philadelphia on January 25, 2010,
from “the most magical place on Earth.” You’ve got it, Walt Disney
World.
We are Disney fanatics. My parents live near Orlando and my
mother works for Disney. My wife, Laura, and I and our two daughters,
L age two, and M age eight at the time, ended our fabulous vacation and
kissed my parents goodbye. But, let me backtrack a minute. On the first
day of our trip I had an eerie premonition that this was the last time I
was going to see my father. He had been fighting several health issues
over the last couple years and for most our trip, that strange feeling had
consumed me. It overtook my emotions and I found it very hard to say
goodbye to him that day.
As we boarded Disney’s Magical Express bus at Disney’s Saratoga Springs Resort & Spa
and left for the airport, I wasn’t feeling quite myself. I contracted a bad stomach bug with
diarrhea on that last hot, humid, sticky day and chalked it up to that. And, as luck would have
it, Laura and L were sick too.
On the plane, Laura was sitting across the aisle from me vomiting into the small plastic
air sickness bag while L sat on my lap doing the same. When she missed the bag, the residual
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vomit slowly traveled down my legs like warm, slow-moving lava. If it wasn’t for the super
absorbency of my bulky, white, cotton socks it would have oozed its way into my sneakers.
They soaked up the thick, vitreous solution from my daughter’s upper bowels quite well. I felt
horrible and wished that I could switch places with her so I would be the sick one. I kept
rubbing her back and wiping her face while trying to hold her hair back from falling into the
vomit-filled bag—the danger zone.
M sat at the window seat with a look of fear, disgust and angst. She turned away to look
out the window, put her earphones in and played her la, la, la, this isn’t happening game. She
cannot tolerate the site of blood, boogers or vomit. I, on the other hand, was swallowing my
Imodium AD pills like Tic-Tacs to hold back my lower bowels from exploding.
I heard that loud and familiar ping. You know the one; the ping that notifies flight
attendants that the plane has descended below the 10,000 foot altitude indicating we would soon
be reaching our final destination. This is when they tell passengers, “At this time, we ask that
you please turn off all electronics, fasten your seatbelts and place your tray tables and seats in
their upright positions.”
Shortly after that ping, I felt something squish in my head, followed by a horrific
headache and nausea. I did everything in my power to hold back my vomit. I performed deep
breathing exercises and tried to distract myself all the while rubbing L’s back to comfort her. I
was about to cross the line of what had probably never been seen before in aviation history. I
had to take control of what was about to take place. I kept my focus on the dark blue, carpeted
bulkhead wall with the Westwest logo on it. I kept thinking, “You can do this John. We are
descending and it won’t be too much longer.” Fifteen minutes, two bags of my daughter’s vomit
and a pair of vomit-saturated socks later, Laura knew something was wrong. She could see it in
my face. “You just go. I’ll get the bags and the girls!”
BOOM! I bolted off the plane’s walkway like Carl Lewis in the 1984 Summer Olympics
and frantically made my way into the men’s bathroom at the Philadelphia (Philly) Airport. I
kicked open the last stainless steel stall door like a SWAT team member and spewed an ungodly
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amount of projectile vomit. It felt like Hulk Hogan was driving a railroad spike with a sledge
hammer into the right side of my skull. For the next ten minutes, I spewed nothing less than,
what seemed to me, a consistent forceful flow of 100 PSI projectile vomit. My obvious goal was
to hit the toilet, but I hit the toilet, the floor, and even the walls. It was everywhere! Not even in
my college- or club-going days did I manage to leave so much carnage in one place.
Think it’s done? Not even close my squeamish readers. With all of that exerted pressure,
I had to quickly change gears and sit down on a toilet for some much needed diarrhea bursts
from the lower G.I. bug I had contracted earlier. I quickly jimmied over to another stall because
there was no way in hell I was using the first stall that I had already decimated. I don’t know
how I held it in while I was vomiting! I quickly jumped up, ran back to the original stall and
continued with another violent vomiting spree for another five minutes. I bounced back to the
other stall again, undid my pants and sat for yet another session of lower bowel bursts. What a
hot mess! As things finally settled down, I cleaned myself up and started to exit. A man about
my age, 39ish, looked at me then yelled out, “Yeah, you can come in. I think he’s all done!” I
told him, “I wouldn’t go in there if I were you.” I was embarrassed and humiliated at the time,
but that was the least of my problems compared to what was next. When I left, I looked around
and tried to find a janitor so I could tip him a $20, but couldn’t find one. Remember this is the
Philly airport.
Laura loaded up the kids and bags in the car. I insisted on driving home because I am
bullheaded, but at that moment I felt better, too. We were driving on Route 476 towards the
Turnpike when very slowly and insidiously I started to go blind. Darkness slowly started to
close in from the outer edges of my eyes until my vision was dangerously limited. It was like
looking out of a yellow #2 pencil eraser head. I was already in the process of pulling over and
stopping when things went completely dark!
I told Laura, “I just can’t see. Can you drive? Just let me lay down; don’t worry about it.
I’ll be fine, I just need to rest.” She was frantic as she continued to drive home. She called her
mother and asked if she could come over to our house and help out. Forty-five minutes later, as
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we pulled into our driveway, I opened my eyes and somehow my vision had returned. It was
undoubtedly blurry, but it had returned. My head, however, was killing me.
As Laura emptied the luggage from the car, my mother-in-law was there to help get the
kids settled in. That was the moment she started wearing, what we now jokingly call, her
Wonder Woman Cape. She would wear this for quite some time and still does today. She is the
best mother-in-law anyone could ask for. She is more like a friend to me than anything else.
I refused to go to the Emergency Room (ER), as I had convinced myself that this was a
severe migraine coupled with a stomach virus, so why go? I considered myself to be a sensible
and reasonably educated individual. I graduated college as a Registered Nurse (RN), but not for
one fleeting moment did I think the worst. I thought “Man up sissy pants and just take it.” Most
nurses I know would act the same way. All of my medical knowledge and training went out the
window.
I didn’t sleep that night and somehow ended up on my bedroom floor in the fetal position
and made sure I hopped up before Laura could see me. Growing up, I remembered seeing a
movie around Easter time when Jesus was being nailed to the cross. The Romans pounded
spikes into His hands and feet. I was living this pain, but on the right side of my head. The
feeling of that pounding spike being driven into my skull was more repetitive and the pain’s
intensity was steadily increasing beyond belief. For some reason, I related my pain to the torture
that Jesus experienced. By no means am I trying to compare myself to Jesus. I am merely
giving my personal and excruciatingly painful interpretation of the pain. When a painful surge
came on, I just kept thinking about Jesus and the cross. That pounding and driving pain was
unforgiving.
I finally heeded Laura’s advice and saw my doctor. I told the doctor that it felt like there
was a vice grip with a spike attached to it and it was being cranked down tightly into my skull.
She diagnosed me with a migraine, prescribed Fioricet for pain, and sent me on my way. (By the
way, she is no longer my doctor.) “Good. I’m right, it’s just a migraine.”
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At this time in my life, I was a sales rep for a database software company based out of
San Francisco, CA, and my territory stretched from New York City to Washington, DC with
some 135 named accounts. It was a good-paying job with high stress, minimal sleep, and a
packed travel schedule. That day, I was scheduled to be on a conference call so while driving
home from the doctor’s office, I called in. Because I was extremely hypersensitive to light,
especially the sun, I had to completely cover my right eye as I squinted out of my left eye to
drive home, all while listening to what my client in New York City needed from me. My boss,
Bob, said “John, you have to get this sale wrapped up to ensure we get it counted in for this
quarter.” “I will,” was my reply.
Over the next few days, Laura and other family members pleaded for me to go to the ER
and I flat out refused to comply with their requests. I put several calls into my doctor and,
unfortunately, the office nurse repeatedly pushed me off. Despite my insistent requests to speak
directly with my doctor, the nurse would not patch me through. All I wanted was an
authorization to go to the ER because I was under the impression that my health insurance
coverage required one. After all, it’s only a migraine, right? I think it was after my fifth call,
with no returned calls from my doctor, that I gave in and told Laura, “After I take a shower
tomorrow morning, if it’s not better, I promise to go to the emergency room.” This was
Saturday, January 30 th . Mind you, I flew home from Florida on Monday January, 25 th —5 days
earlier.
That Saturday was also the same day of our annual Ancient
Order of Irishman’s Irish Pub Crawl. My best friend, Matt, and I
organized the event in Philadelphia. However, that would not happen
for me that day. I kept thinking about the Pub Crawl the year before
when Matt and I set up a little surprise for the guys. We coordinated
our estimated time of arrival with one of the bar owners. When we
were about fifteen minutes from arriving, we called the bar and asked
the owner to prepare our surprise. We wanted the guys to see
something special upon our arrival: 55 pints of perfectly poured pints of Guinness! Everyone was
blown away and couldn’t believe their eyes. It was a beautiful sight.
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The next 2 1/2 days were a bit scattered and sketchy, but please keep in mind that this
book is written from how I remember and how I am recalling the events.
Sunday, January 31 st , 2010, I showed up at my local hospital, Hospital D, and was
immediately sent back for a CAT scan (Computerized Axial Tomography) of my head. As they
laid me down flat for the scan, the blood rushed to my head; I was screaming bloody murder. I
felt like I was in a medieval torture chamber. They completed the CAT scan and before I knew
it, I was whisked away in a loud, bumpy, speeding ambulance to Hospital A. They heavily
medicated me and my memory faded in and out. I was out cold. When I woke up I was more
stoned than Jimmy Hendrix at Woodstock.
I remember that someone shaved my pubic hair before they inserted a catheter into my
groin area. They inserted it into my femoral artery and injected a dye to perform the MRA
(Magnetic Resonance Angiogram). They were checking for leaks or ruptures, as the dye travels
through the arteries. Any abnormalities are picked up on a computer screen. I recall hearing
someone say, “Oh shit!” BOOM! The “Oh shit” they were referring to was from the horrific
image they saw on the screen. There was a giant rupture of the right portion of my MCA
(Middle Cerebral Artery) causing an immense amount of bleeding in the subarachnoid space in
my brain, known as a SAH (Subarachnoid Hemorrhage). The blood was no longer contained
within an artery. It was uncontrollably leaking around the limited real estate of open space
available within in my brain. This, by the way, was the root cause of my projectile vomiting and
my horrific thunderclap headaches; commonly referred to as the worse headache of my life.
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Chapter 2: The Brady Bunch Helicopter
I
recall looking up at the underside of two long helicopter blades, one of which drooped down
over me in its stationary position. There are, obviously, more than two blades on any
helicopter, but that’s all I saw. I was carefully wheeled into the helicopter where there was a
strong, heavy fuel odor that lingered (probably from its flight in to pick me up) which smelled
like an old car’s exhaust. I was heavily medicated and I knew that things were not looking good.
I wasn’t scared; I should have been, but I wasn’t.
Someone asked me, “How much do you weigh?” I was thinking, What, is this thing not
going to hold me? “I weigh about 215 pounds and I’m about 6 feet tall.” Did they need to know
this for weight distribution or something? The next thing I recall is taking off as the helicopter
vibrated and shook. I associated it with those vibrating beds I heard about in those cheesy, cheap
motel rooms back in the 1960’s and 1970’s. I had never been on a helicopter nor had I ever
taken any heavy narcotics and been tightly strapped to a gurney. This wasn’t how I wanted to
experience my first helicopter ride. I didn’t know how long the trip was going to be.
During this first part of my journey, while looking at the clear blue sky through the wide,
large back door window, I thought about my life; or I should say, my life thought about me. I
experienced vivid flashbacks. It was as if I was shooting a film and watching it through the
viewer.
My flashback started off with me, my parents and my sister shopping at Sears on
Roosevelt Boulevard and Adams Avenue near my childhood home. If we were well behaved or
didn’t get lost (like me hiding in the large circular clothes racks so my parents couldn’t find me
versus actually getting lost or kidnapped) we got a soft pretzel on the way out. The pretzels were
always soft, warm and salty.
Then, I was at my Nanny Kelly’s house on a Sunday morning, smelling the stale cigarette
smoke and fresh coffee brewing in the kitchen while she told hilarious stories that would make a
grown man pee his pants.
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Then, I was rolling Hot Wheels on the linoleum floor in the basement at my Pop-Pop
Cooper’s house on Thanksgiving Day with my cousins Ronny and Chris.
Then, I was seeing myself at twelve years old, playing on my
Uncle Bob’s baseball team, successfully stealing and sliding into
home which helped us win the Devlin League Championship Game 4
to 3 at Summerdale Field.
I next flashed back to that same day when we received a ghastly
phone call from my Aunt Alice that my cousin, Tommy, was in a bad
car accident. He died shortly thereafter. I loved Tommy. He would
spend several hours repainting Hot Wheels with me and taught me
about life through his eyes. I remember his Playboy collection being
quiet amazing. Tommy was a sincere and loving individual. I miss
him. I wondered if I would soon be seeing him and my other family members that died. If my
family and friend’s faces at the hospital were an indication of this, I would have guessed, Yes, I
would be seeing them soon.
I was abruptly awakened from my
flashbacks as the nurse on the helicopter loudly
said, “We’re almost there.” I thought, “Where is
almost there?” and then dozed off. In what
seemed like an instant, I was on the roof proposing
to Laura.
I then flashed back to the delivery room of M’s birth on October 22, 2001 at 9:41 pm.
Natalie Merchant’s “Wonder” was playing in the background. (Incidentally, she was born at
Hospital A where I just flew from.)
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Next, I was standing with Laura and holding M in a car seat carrier in a large, cold,
vacant house, but with a great open floor plan. We bought that house and made it our warm and
loving home.
After that, I was at L’s birth saying, “I am your father” in Darth Vader’s voice, while
holding her for the first time.
I pictured my whole family at Christmas and remembered how my girls used to sleep on
my chest when they were infants. I wondered what my kids and wife were doing at that moment.
The helicopter jolted and woke me up. We veered to the left and right several times and
the tail tipped downward. I was looking out the back window and remember thinking, “Holy
crap! I am going to fall out!” It felt like I was in the back seat of the Brady Bunch station wagon
going ninety miles per hour. I recall looking down and noticing some familiar Philly landmarks.
I saw the copper and slate peaks atop the roofs of several churches in the Port Richmond area. I
can see it as vividly today as I did back then, even though I was under copious amounts of
medication.
We decelerated, hovered and teetered right to left from the
gusty winds. As I felt my heart pounding through my chest, the spikedriven
pain in my brain intensified with each quick blade rotation. The
nurse said “We’re here,” and the back door of the Brady Bunch
helicopter flung open. They rolled me out onto the frigid, gusty
rooftop of Hospital J. I peered down and through the metal grate
catwalk and saw the street about ten or fifteen stories below me! I felt like I was going to roll off
the rooftop. I thought, “This would be one hell of a way to die, rolling off this damn roof
strapped to this gurney. Jesus, I hope these guys are holding on tight.”
It was the beginning of February and the wind fiercely whipped around me, but it was a
beautiful, sunny, clear day. The frigid air pierced my nose as I inhaled, even with the oxygen
mask on. They expeditiously rolled me into an elevator, then across the street and into another
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building. (I recently visited Hospital J and walked through an alleyway to
take a shortcut. I stopped dead in my tracks. My jaw dropped and this
flashback hit me square in the face. I remember going through these doors
as if it were yesterday. It was the ambulance entrance for patients that are
flown in by a helicopter.) I remember shivering and, from what seemed to
me, the staff was upset that the doors weren’t opening quick enough to get
me in there.
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Chapter 3: “Hey hon, it’s me. They want to do surgery. They’re going to
have to take part of my skull off. I love you. I’ll be alright.”
“J
ohn you have a giant, ruptured brain aneurysm. We are going to have to go into your
brain and clip the bleeding artery. We have to remove part of your skull to do this
(Craniotomy). Your skull won’t be put back in right away because of the swelling afterwards.”
I asked the doctor, “How bad is it?” He hesitantly shook his head up and down and with a
smirk-like frown I think he said, “I’m not going to lie, I’ve seen better, John.” My own brain
was literally killing me. In my heavily medicated state I said, “Sure go ahead! Let’s do this.” I
looked around and I didn’t see my wife, or anybody for that matter. Where the hell was
everyone? This is some major stuff here!
Generally, aneurysms are measures by millimeters. When they
are giant, they convert or refer to them in centimeters. I had 50
millimeter by 40 millimeter giant, ruptured brain aneurysm. If you
are wondering what 40 millimeters looks like inside of a brain,
imagine a Grade A large egg; it is approximately 30 millimeters in
length. Now crack that egg and…BOOM!
BOOM!
4 cm x 5 cm
(picture to scale)
4 centimeters = 1.75” and 5 centimeters = 1.97 inches
The doctor handed me my phone and helped me call Laura with the preset number under
my favorites. I told her, “Hey hon, it’s me. They want to do surgery. They’re going to have to
take part of my skull off. I love you. I’ll be alright.” Laura was frantic and insisted that she talk
to the doctor immediately. I can’t remember much right after that. Unbeknownst to me, while I
was in the helicopter, she and the rest of my family were making the painstaking, frantic drive
from Hospital A to Hospital J with a copy of my MRA, CAT scan and other tests. The Brady
Bunch helicopter was just a hell of a lot faster.
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Once Laura arrived at Hospital J, she looked very upset—sad, yet, stoic. I looked deep
into her big, beautiful, blue eyes; one second it seemed that she was thinking about all of the
good times we’d had and the next second about how was she going to explain to our daughters
that daddy has died. It’s ironic when you feel horrible for a loved one that is feeling frightened
about your own condition. Of all the moments up to that point, psychologically, that devastated
me the most. I couldn’t do anything to comfort her.
A while later, friends and family began coming in to see me. Frank, a good friend of
mine, came in with a fake Irish shamrock tattoo on his arm and told me rub it for good luck.
That mattered to me because it mattered to him; you could see it in his tear-filled eyes. They
came in one after another, like a 1950’s revolving bank door. Then I started seeing family
members I hadn’t seen in a very long time. They came in and were rubbing my hands and arms.
They were crying and wishing me good luck. I could see the fear in their eyes.
Wait a minute! I may have been heavily medicated, but I knew what was going on. They
were all coming in to say goodbye to me. I was beyond livid. I think it was my poor cousin that
I told to “Get the f*** out of here!” The people who followed got a similar message: “You’re
coming to say goodbye to me, as if I am going to die!” I remember tearing up while repeatedly
saying, “You’ve got this John. You aren’t going to die, Coop. You are not going to die.”
The next thing I remember was waking up the following morning. Just as I was thinking
more optimistically about this life changing surgery, a bearded, Middle-Eastern doctor with a
turban wrapped around his head walked into my room. I’m talking Taliban member, minus the
AK47, but the same accent and appearance. (Okay readers, give me a break here. I was heavily
medicated, my family and friends were doing the funeral march over me and things, quite
frankly, weren’t looking good.) I couldn’t believe it. I asked him, “What are you, the barber?”
Ironically, he was there to mark my head so the surgeons would know the incision and extraction
areas for the surgery. (Funny, it looks like the joke’s on you, Johnny.) He got out his marker
and applied a couple X’s on my head as to where the neurosurgeon would drill and saw to
remove my skull and try to repair the giant, ruptured brain aneurysm. So he was a barber of
sorts. Soon after, I was taken down to surgery.
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Chapter 4: The Angel and Johnny Cash
W
ho would’ve imagined that I was going to have one-on-one time with both an Angel and
Mr. Johnny Cash?
My angel visited me first. She was
magnificently beautiful. I gazed upon her standing
at the foot of my bed. Her voice was very, very
familiar. I knew her voice. Her hands were soft,
warm and appeared to be young and wellmanicured.
She wore a whitish-yellowish, long,
flowing gown. A blinding bright, sun-like glow
surrounded her from the behind. Her face was
masked by that same glow, which made her unrecognizable. I knew her voice and yet I still
can’t place it to this day. Her gown was blowing inward towards me, but I did not feel a breeze.
I could see myself in the hospital bed looking down and then I was back lying in the bed. She
gently ran her thumb up the soles of my feet and her fingers on the top of my feet several times
while repeating in a soft gentle voice, “Everything is going to be okay, John, everything is going
to be okay, John.” I asked myself who was she?
Once, she completely lifted me off of my bed. She said nothing else during this; neither
did I. I didn’t speak at all. I have never experienced such a high level of tranquility. She then
quietly said, “I have to go now; everything is going to be okay, John.” While facing my
direction, she slowly glided backwards to my right side and disappeared. I’ve never felt so
alone yet peaceful at the same time. I was left with several unanswered thoughts and questions.
Was my time on Earth coming to a close? Moreover, would I be staying here, wherever here is,
and will everything be okay, John?
I was sitting upright in my hospital bed and was awoken by Johnny Cash singing “I Hung
My Head.” He sat on a rolling stool to the right of me about two feet away. He was dressed
sharply in black with the top two buttons of his collared shirt undone. A frosty bottle of
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Budweiser sat next to his left foot and a Marlboro Red cigarette hung from the left side of his
wrinkled lips as he sang to me with a clenched, but welcoming, smile.
As with the angel, I was in complete awe. The bright, yellow sun was shining in from the
windows on my right but, unlike the angel, I could see him perfectly. He reached over and
firmly grasped my right hand and told me, “Everything is going to be okay, John.” Catching on
to the pattern here folks?
Sketched by my good friend, Tommy Sullivan
He slid his hand out of mine, reached down with his left hand
and lifted up the Budweiser; he took three long, satisfying gulps. He
then placed his hand on his wooden, chrome-accented guitar and started
playing, “When the Man Comes Around.” As Johnny finished, he
strongly patted my right hand, stood up and said, “Everything is going
to be okay, John.” He then walked backwards to my right, while facing
me, until I could no longer see him. I’m not sure if it was of any
significance, but when they left, neither my angel nor Johnny
Cash had their back to me. They also disappeared to my right side. I became worried. I had
been visited by an angel and now Johnny Cash is playing this particular song to me. So does that
mean I’m going to die and go to heaven (I hope)?
I don’t know the significance of these visits, but what I do know is that these encounters
bear more writing about—much more, in fact. I can only hope that my abridged version has
described it well enough for readers to understand. It would take me entire book to fully
describe those amazing encounters. If you aren’t familiar with the songs Johnny Cash sung to
me, I recommend looking them up on YouTube.
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Chapter 5: Big, Beautiful, Blue Eyes
A
s my eyes slowly cracked open from my Rumpelstiltskin-like sleep of my ten-day
medically-induced coma, masses of people convened at my bedside. It was a madhouse.
Doctors, nurses, students, lab techs, phlebotomists, x-ray techs, neurologists—you name it, they
came to see me. The first question I remember being asked was “Do you know where you are?”
I answered, “I’m in a Disney hospital.”
I knew who I was. I knew I was married and that I had two daughters, but I didn’t know
where I was or what the hell was going on. Place? Date? President of the United States? No
clue! The days prior to all of this when I first saw my primary doctor had never happened to me,
yet why did I think I was in a Walt Disney World hospital? Like a complex and confusing
puzzle, I am still trying to put those missing pieces together. Some events are vividly clear and
other events are totally erased. It’s as if those days leading up to the aneurysm bursting never
happened. I remember dribs and drabs, but most memories of that family trip to Walt Disney
World are nonexistent.
I looked around and didn’t see any familiar faces. I had the wherewithal to do a quick
nursing assessment of my situation. I could not move my left leg, my left arm nor my left hand.
With my right hand I identified a nasogastric (NG) tube placed in my nose for feeding, a
ventilator tube in my mouth and down my throat to force oxygen to my lungs for breathing, a
Foley catheter in my penis to drain my kidneys, a central IV line for fluid intake, and wires that
coming out of my skull. The pain was nothing like a vice grip or railroad spike. Instead, it was
more like somebody had dropped a bucket of golf balls on my head.
Through the tightly wrapped gauze dressing circling my head, I felt a large depression in
my skull. Slowly sneaking my pointer and middle finger under the dressing, I could only feel a
thin layer of skin, then my brain. It felt like ground meat through cellophane at a grocery store.
I was dumfounded. It felt unnatural. (Why do people depress packaged, ground meat with their
fingers before buying it? Is there a grocery store secret to that?)
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I was pissed off! I knew I had a living will. Why are they doing this to me? I was not
going to live like this. I grabbed the NG tube with my right hand and yanked it out. For those
that don’t know, the end of an NG feeding tube catheter is anchored into the stomach with a
balloon of saline solution about the size of a small Super Ball (similar to the ones I used to get at
the Five and Dime and bounce down my driveway of my childhood row home in Philly). As it
came up, I had to pull really hard to get it past the back of my throat, nasal cavity, and then
through my nostril. My eyes teared in pain, but they were more like the tears created when you
are choking on something. I admit it was a quick, self-inflicted asshole move, but I wanted to
get my point across—I was not going to live like this! I think I made my point clear.
The next thing I remember is Laura appearing in front of me. Finally, someone I knew! What a
sight! Her big, beautiful, blue eyes were a welcomed site. Her smile was synonymous with her
tears and everything began to look up. She stoically stood and looked down at me, as if it was
our wedding day. With nothing but pure love beaming out of her big, beautiful, blue eyes she
said, “I love you, John.” I can hardly remember anything she said after. She tried to fill me in
on everything that had occurred over that ten-day stretch of being in a coma. All I remember is
her saying, “I love you, John.” I tried saying it back, but I don’t know if she understood what I
was saying with the ventilator tube in my mouth. I was getting annoyed that she couldn’t
understand me. I thought to myself, “Alright Coop, let’s get up so we can go home now. I just
have to get this ventilator tube out next.”
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Chapter 6: Cleanup in Aisle 4...Oops, I Did It Again
L
aura and my nurses were elated when I awoke from my slumber, but not so happy when I
yanked out my feeding tube. I kept pointing to my ventilator tube trying to indicate that it
was next. I was not going to live like this. I recall Laura informing the respiratory therapist that
I was a Registered Nurse. At this point, I wanted to know the vent settings. He assured me that
it was on the minimal assist setting and that it would be removed very soon. “Please don’t try to
remove the tube yourself!” he said. Patients like me can be a nightmare for the staff. And so,
that nightmare began.
I felt my stomach gurgling and bubbling and was very uncomfortable. I pointed to my
abdominal region and I tried my best to lip to my nurse that I needed a bedpan. I was ashamed
that I needed one, but that was my only option. My stomach was cramping up and I was in pain.
I don’t think I had a bowel movement since before surgery, which was almost two weeks ago,
and I wondered if I had I had one in my coma. Keep in mind that I had all of that tube feeding
running through and building up inside of me. There was a bunch going in and nothing going
out. It was a recipe for disaster. I thought, Please understand my lips and get me a damn
bedpan…please!
Instead of a bedpan, a flamboyantly-friendly respiratory therapist came floating in on his
tippy toes; let’s call him Jeff. He reminded me of Jack from the TV show Will and Grace. He
was hilarious, caring and very talkative. He arrived with a small collection cup to obtain a
sputum sample from the deep, cavernous depths of my lungs. That was not the damn bedpan I
asked for! As a nurse, I had collected hundreds of sputum samples via the trachea. I always
hated it. After squirting a few cc’s of saline solution into the trachea tube to break up secretions
in my patients’ lungs, I would watch my them clench every muscle in their body as they gasped
for air. The solution went directly down into their lungs before suctioning. Now, the tables had
turned—I was the patient. After the saline solution shot down into my lungs, Jeff started
suctioning me. It felt like Mike Tyson was punching me in the stomach while a Navy SEAL was
holding me underwater. My head felt like it was going to burst as he suctioned me but,
BOOM!—my ass did instead!
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Although seldom discussed, it is a rite of passage for a man to crap himself at least once
in his life. I just happened to perform this act in a hospital bed. It was truly a religious
experience. It was almost better than sex. Scratch that—it was better than sex. Embarrassing?
Hell yes! Instant relief? Hell yes! My poor nurse cleaned me up and gave me a dynamite bed
bath. I felt horrible for her but good for me. Laura had come back in after this episode and the
odor died down a bit. She talked to me for a little while, but I soon found myself needing to go
again. I kept pointing at my stomach, but she couldn’t understand me (damn vent tube!). She
finally understood and went to get the nurse who came in and said, “Oh, don’t worry, you don’t
need a bedpan. You just went.” Well, the second wave came along just as fast as the first wave
and, like the Britney Spears song goes, “oops, I did it again.” This may sound mean but I didn’t
feel bad about the second mishap. After all, I did try and signal to her that I needed that damn
bedpan again.
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Chapter 7: Proud
T
here stood my beautiful wife. During one of the top three snow storms in Philadelphia
recorded history, she walked back and forth eight blocks away, through the 25”-30” snowcovered
sidewalks. I think approximately two feet of snow was dumped in one day alone. Mind
you, Laura is only five feet tall.
At one point, she said the taxi services were shut down, and people couldn’t shovel and
remove the snow fast enough from the walkways. After the snow was partially cleared, she was
able to drive in and out of Philly which, at best, is one hour each way on a good day, just to be
at my side. On top of being a mother, she was communicating with all of our friends and family
members, paying our bills and handling everything that occurred during that tumultuous time. I
can’t begin to imagine everything she went through. She occasionally fills me in on some of the
things and I am bewildered as to how she kept it all together.
So, as I said, there she stood in front of me for the first time. She looked as beautiful as
ever; not showing any doubt or hurt over what I had just put her through over the previous tenplus
days. She actually said, “I am so proud of you.” I didn’t get it? I thought, Proud of what?
I just pulled out my NG tube and crapped all over myself. I didn’t understand. God, I love you,
Laura. I tried my best say, “No, I’m proud of you. I love you,” but I wasn’t sure if she could
read my lips with the ventilator tube in my mouth.
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Chapter 8: Now Paging Doctor Robot
M
y ruptured brain aneurysm was surgically repaired by, what is known in the aneurysm
industry as, clipping. I know this because #1, the doctors told me, #2, I read the post op
report and #3, I watched a video of the surgery. Call me morbid, but I wanted to know what
was done to me.
After “the barber” shaved my head, the neurosurgeons gently (I hope) pulled back my
scalp and then drilled and sawed into my skull (Craniotomy) with a Dremel-like tool.
Approximately twenty-five percent of my skull bone was then removed. To locate the exact
location of the ruptured artery, they carefully (again, I hope) moved part of my brain and
inserted 7 Titanium clips to the ruptured artery. The objective of the clips is to isolate and
prevent further blood flow to the affected artery. In addition to this, they had to reconstruct part
of the artery using bovine intestines and then deflate the aneurysm. After the ten-hour surgery
was complete, I was put into a medically-induced coma to, essentially, give my brain a rest for a
while. The removed skull bone was not replaced during this procedure, as there would be post
surgical swelling of my brain. Skull replacement surgery would have to be done six to nine
months later. Videos of my type of surgery can be found online, but I highly recommend not
viewing them if you are squeamish or have a predisposition of fainting.
On the second day after waking from the coma, I lay motionless in my hospital bed; it
was still dark outside, but probably early morning. From my left field of vision, I saw
something quickly moving towards me. My Angel and Johnny Cash were on my right side, so
was bad news headed my way because something was coming from the left? I couldn’t believe
my eyes. I remember telling myself, Just go back to sleep John, it will go away; then thinking,
Holy crap, it’s getting closer! It started talking and it even knew my name! Okay, someone get
me the hell out of here, STAT! (I’m sure just about everyone has heard this word “STAT”
before, yet some people don’t know its true meaning. In nursing school and Navy Corps school
I learned that its origins are Latin and stand for: Sooner Than Already There; hence, “Get me
the hell out of here, STAT!”)
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It then started talking to me: “Hi John, I’m Dr. Osen. I performed the surgery on your
brain.” It was a rolling, moving robot with a monitor where its face would be. The “face” was
that of my neurosurgeon, Dr. Osen on the live monitor. A camera was positioned on it so he
could view me from wherever he was (which was not in my hospital room!). He was talking to
me live via a remote feed; however, no one was there to explain that to me. I thought I had
crossed over to the third dimension or that I was on Candid Camera. Our short conversation
consisted of him asking me several close-ended questions about how I was feeling. I responded
with a right handed thumb; thumb up for yes and thumb down for no. Then the doctor robot
turned 180 degrees and, with its back to me, quickly rolled out into the hallway. I found out
later that the doctors used this deceptively frightening robot to remotely check in on their
patients. That was some scary stuff my fellow readers.
(I envision the docs recording their patient’s reactions and making their own “funniest
videos.” At the end of each year, at an undisclosed location, they probably crack open a good
bottle of forty-year-old scotch and watch their videos for a fun-filled night of laughter. Doc, if
you’re reading this, can I have a copy of my reaction?)
Later that day, my friend, Billy, came to visit me at the hospital. I told him about the
encounter I’d had earlier that morning. At that time, I guess he appeased me and went along
with it because he later told me that he cried that night because he thought my “brain was fried
and I was a goner.” However, some days later when he was visiting me, he saw that same robot
I had described to him, plugged into the wall down the hallway. Needless to say, he was
joyfully relieved that my brain wasn’t totally ruined.
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Chapter 9: “That’s What Friends Are for...Keep Smiling, Keep Shinning”
B
illy, my best friend since I was twelve years old, was always calm, cool and collected in
tragic situations. He could also open up a can of whoop ass, when needed. He was the
second person I remember seeing, and he looked completely drained. He had the deep, dark
circles under his eyes to prove it. I was thinking that I looked better than he did and I hadn’t
even seen myself in a mirror yet.
The night before Valentine’s Day, he went out and bought a card for
me so I could give it to Laura when she visited the next day. He, along with
my other best friends, Matt and Frank, were supporting Laura and doing what
good friends do—just being there. They were there for me and my family at
the drop of a hat. Billy, Matt and Frank drove down to the hospital after work
to make sure I wasn’t alone at night. Laura made sure I wasn’t alone.
Matt fed me my first meal after they removed that damn trachea
tube for the ventilator. I think I had turkey with sweet mashed potatoes. It
was absolutely delicious. I had taken food and several other things for
granted, and have since learned not to. Walking, driving, giving a great
big hug to others and spending quality time with my family. I had never
felt so vulnerable or helpless, but none of that mattered to them.
Remember Frank with the fake shamrock tattoo? His smile was
priceless when I first saw him. It was like a Jesus, do you know what you put
all of through, then a Jesus, I am so glad you are alive, kind of a smile. I am
very lucky and fortunate to have such great friends and brothers.
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Chapter 10: My African Princess
I
forget her name but I remember her smile. For one reason or another, there was a
complication with my central IV line and they had to remove it and insert a new one. After
several failed attempts by several nurses and doctors, I lay exhausted and pain ridden in the
hospital bed with four or five additional needle holes from the failed attempts. I was beat and
some of my veins had collapsed at that point. The staff was in and out, trying everything
possible to get a new line started—tourniquets, slapping my arms and even my legs and feet, all
in an attempt to find at least one good, viable vein.
You know that moment when you think you can’t take anymore? That was this moment.
Then, a familiar face with a great big smile walked into my room. She knew I was exhausted.
I’d seen this resident at least a dozen times and we talked frequently. She had told me her story
of moving from Africa in hopes of completing her lifelong dream of becoming a physician. She
carefully inspected all my veins and located a viable one on my left arm. After she injected
Lidocaine, a local anesthetic, around the site and inserted the new IV on the first shot, she put her
hand in mine and smiled. I said, “You are my African Princess.”
As she was leaving, she asked if she could get me anything. I said, “I could really go for
a root beer. I probably can’t have a real beer, right?” She shook her head no and I nodded off to
sleep. The next thing I heard was the gentle metal clang of a root beer can being placed on my
bedside table. She smiled and said, “I couldn’t find the Pennsylvania root beer that you wanted.
They only had A&W at the store.” I graciously smiled and said, “Thank you.”
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Chapter 11: Am I Having Another Brain Aneurysm?
W
hat the hell is going on? The fierce pain was back! My head felt like it was going to
explode!
“Somebody please help me!” The staff, looking overly concerned, were running in and
out of my room. Doctors and nurses quickly surrounded me. I asked, “Did the surgery not
work?” Dr. Eyebrows said, “Mr. Cooper, what is your pain level from 1-10?” (Mind you I
have a very high tolerance for pain. I walked around with a ruptured brain aneurysm for over
seven days before I went to the hospital.) BOOM! “It’s a 10! What the hell is going on doc?”
“Mr. Cooper, I think you are having vasospasms.” I thought, Oh crap, this could be the end.
Vasospasms are a life-threatening complication which sometimes occurs after my type of
brain surgery. To that point, I was like a survivor of a plane that made a crash landing into the
middle of the Atlantic Ocean. I survived it, but then that same plane was filling up with water
blocking the exit aisles, jamming the doors closed and I can’t get out. That’s how serious
vasospasms are. They are a common side effect after a ruptured brain aneurysm. This
complication was explained to me and my family and was a mini refresher course from my
nursing days. The blood vessels in the brain can go into spasm causing the blood vessels to
constrict, which could cause a stroke, permanent brain damage or even death. Kink the middle
of the hose while someone is trying to wash their car. You know what happens; but, this was
happening with the decreased blood flow in my brain.
Dr. Eyebrows had four or five students with him, as this was a teaching university
hospital. The excruciating pain came on fast and furious with an insidious cycle. To me, the
vasospasms seemed to last about twenty minutes or so, but I wasn’t looking at a clock. The
doctor and the students performed a quick neurological exam. Some of the students nervously
looked concerned as they observed the numerous monitors which were beeping, chirping and
repeatedly sounding off their ear piercing alarms. It was nonstop chaos.
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Out of the blue, Dr. Eyebrows asked one of the students, “Which cranial nerve is
responsible for vision?” Are you kidding me? I felt like I was dying and he was having a quiz?
It was like an episode seen on the TV show Scrubs. At that moment, I visualized a chart I made
back in nursing school for my exam on the twelve cranial nerves. I thought the students weren’t
answering quickly enough so I answered for them. “The second cranial nerve controls vision.”
If it wasn’t for the alarms going off, they probably could have heard a pin drop. The doctor
looked at me baffled and smiled. I said to him, “You got to help me out here doc.”
Somehow, someway, John the nurse awoke with precision and confidence. Now, for all
you nurses out there reading and critiquing this, I can’t remember that exact conversation
verbatim, but it sort of went like this:
Me: “Doc, I need blanket-tey-blank drug IV.”
Students: Looking at me as if I was maybe a drug addict or as if I were working with
Jessie from “Breaking Bad.”
Student: Blah, blah, blah…something about the “increase in intracranial pressure.”
Me: (slow, confident, intrepid—like Walter White): “IV blanket-tey-blank drug for
pain, blanket-tey-blank drug to help decrease my intracranial pressure, and the second
cranial nerve controls vision!”
With one eyebrow up in the air, Dr. Eyebrow looked down at me, both perplexed and
impressed. I couldn’t hold it anymore; I was in too much pain. I gave in and told him, “I used to
be a Registered Nurse.” The light bulb went on over his head and he smiled.
He winked at me and said to his students and my nurse, “Well, you heard him.”
I don’t know what he ordered for the vasospasms or what he actually did; I do know that I felt a
hell of a lot better rather quickly. Over the next few hours the vasospasms subsided, and within a
day, they stopped completely and never returned. I know he had probably ordered something
even before he walked into see me, as vasospasms are a frequent occurrence in the neuro ICU,
especially in cases like mine. Regardless, he fixed me up. Thanks Doctor Eyebrows!
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Chapter 12: “Eleanor, stop buying that Ty-D-Bol for the toilet, it’s turning my
balls blue!”
A
few days had passed when two physical therapists and a young, recent graduate nurse
came in to take care of me. They strapped a temporary protective helmet on my head,
washed me and wrapped me up into a Velcro harnessed suit. It was similar to that of a cocoon.
The suit had hooks and carabineers. They attached them at several pivot points on the suit and
connected me to a ceiling hoist so they could elevate me out of bed and into a reclining chair
next to my hospital bed. As they hoisted me a few feet in the air, something was definitely
wrong. You know when something is wrong and you just know it? I felt a cool breeze in an area
where there shouldn’t have been a breeze.
There I hung, suspended in the air—a 215 pound grown man cradled in a Velcro suit a
few feet above ground level, from the ceiling, getting ready be lowered. I knew what was
wrong. I yelled, “My balls!” and immediately started laughing, as I was reminded about the
story of my grandfather Kelly. I had to share the story with everyone.
When I was younger, I overheard my Nanny Kelly, a woman who
could make a grown man pee his pants, telling the story about how she
turned my grandfather’s testicles blue because she bought blue Ty-D-Bol
to put in the toilet. In his mumbled and grumpy voice, he told my
grandmother, “Eleanor, stop buying Ty-D-Bol for the toilet. It’s turning
my balls blue.” I inherited his low-hanging testicular man sac. I couldn’t
stop laughing, and laughing was rather painful to my brain.
So, there I hung, like a kid’s Mexican piñata, with my testicles swaying to and fro. They
were ready, at any moment, to be crushed by my own weight if I was lowered to the chair. The
young, new, shy and timid graduate nurse was looking up at them from below. This must have
been trial by fire for her. She attempted to gingerly push, readjust and relocate them back into
the Velcro suit before I was lowered. I can only imagine what the hell that looked like.
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Around that same time, visitors walked by my room. They were quickly redirected and
instructed to come back in about five or ten minutes. I only lasted for about an hour in the
bedside chair, talking to my visitors—I was wiped out. The good news was that my testicles
were safely nestled and secured in their proper place. Getting out of bed was one step closer for
my long awaited discharge. I’m sure that my testicles were put into my nursing plan for all
future hoists. Similar to a “fall precaution” sign posted outside of a patients room but mine
probably read “Ball Crush Precaution.”
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Chapter 13: The Race is on with Apollo Ono
T
o that point of my stay at Hospital J, I was only allowed Tylenol with codeine for pain. I
was told, “We want you to be neurologically aware. We don’t want to give you anything
stronger, as it may mask other symptoms.” What other symptoms? A week ago several doctors
manhandled, manipulated and moved my precious grey matter around like a tossed salad. They
poked, prodded, sliced and inserted seven large metal clips directly into my brain. Then to top it
all off, a quarter of my skull was removed. These jokers can’t give me anything stronger for pain
relief? “No, I am sorry we can’t.” Okay then, that’s the answer. Imagine that!
It was a special day; the day I received my official white,
oversized, protective helmet. What a hideous looking thing it was. I
would have to wear this until my missing skull bone, some six to nine
months later, was surgically reinserted via a procedure called a
cranioplasty. When the nurse first put the helmet on my head, I
endearingly said, “I love you Becca” and she appropriately replied, “I
love you Corky,” a reference from the eighties shows Life Goes On.
Ironically, it was the same nurse that had dealt with my “Cleanup in Aisle 4…Oops, I Did it
Again,” incident mentioned earlier. We had a good relationship and laughed frequently. She
was aces in my book.
I was told to wear it, with the exception of being in bed, at all
times. I could only get out of bed with the assistance of that special
pulley lift attached to the ceiling and the Velcro jumpsuit, so I wasn’t
overly concerned about it.
The left side of my body was extremely weak; I could feel pain
but was next to useless. The rest of my body was also very weak from
being in the coma. It was even a challenge to hold a TV remote with my
good hand. One night, the TV was on and I heard one of my favorite songs—the Olympic theme
song. It was the 2010 Winter Olympics and Apollo Ono was warming up for a speed skating
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race. I peered over at my new white helmet on the window ledge about eight feet away and
looked down at the glimmer and shine of the cold looking white floor. This is where the serious
delirium stepped in. It’s called: I.C.U. delirium. My short definition of it was that I needed to
get ready for this race.
I must race Apollo Ono. He had his helmet, so I must get mine. I repositioned my
hospital bed to its maximum upright setting. With all of my might, I pulled myself up with my
right arm into a sitting position and pushed my right leg onto the floor. I was determined to get
ready for the race. I pulled my left leg over with my right arm and with everything I had left in
me, I tried to stand and get out of the bed to obtain my coveted helmet for the race.
When out of nowhere…BOOM! I was abruptly tackled from my left side and pulled
back from my rear of my hospital gown by two people. I was merely seven-and-a-half feet from
my coveted racing helmet when I was stopped cold and denied. People were yelling at me and
all sorts of commotion ensued. “But I must race Apollo!” I hollered again and again. “Not
tonight, John.” The nurses must have administered a sedative because I did not race Apollo Ono
that night. I was a delusional spectator watching him receive his bronze metal and revel in his
victory; a clear and obvious victory which was meant for me. This speed skater/spectator cried
himself to sleep while staring at his new helmet on the window ledge, a mere eight feet away.
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Chapter 14: Sugar with Some Rocky and Water Bottles
I
was within the confines of my room but I was never alone. There was always someone
coming in or going out: visitors, nurses, a roving robot doctor, specialists, the cleaning
people, the meal delivery people. And I always had the background noise of my TV and music
or the occasional “ping” from a text on my iPhone. My room was spotless and the staff was
terrific! The 36” (or larger) high definition TV was definitely appreciated.
Back when I was suffering the immense pain from those torturous vasospasms, I cursed
loudly, like a truck driver with hemorrhoids driving on a pothole littered road. I was in horrific
pain. I recall asking my nurse, “I need a word to say because I don’t want to curse like this.
What should I say?” She looked baffled and replied, “I don’t know, pick out a spice. Try saying
cinnamon.” I tried it and it didn’t work. As a large spasm hit me, I grasped my sheets and
grunted, “Sugar, sugar, sugar.” That seemed to work so, okay, that was my new pain word. A
few minutes later, another big spasm hit me. At the same time a large African-American
cleaning lady came in to empty my trash cans. I gasped, and grunted again, “Sugar, sugar,
sugar.” She endearingly looked at me, smiled and said “Oh, thank you, Mr. Cooper. You have a
great day now.”
Anyone who knows me knows I love the movie Rocky. As a kid
growing up in Philly, it goes without saying that we Philadelphians love
rooting for the underdogs, all the time, every time. I became that underdog.
I knew had to start doing something to get stronger. My physical therapists
kept telling me that when I grew stronger, I would be released to a
rehabilitation facility.
My buddy Matt was visiting that day and I asked him to play the Rocky movie which was
a permanent fixture on my iPhone. I also asked him to fill up some empty water bottles. He
obliged both requests and I started my Rocky routine to rehab. I started with arm curls using
those water bottles as he helped me. We progressed to leg lifts and heavier arm curls. I did this
repeatedly, day after day, on my own and with Laura and my friends. I think Laura may have
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thought I was crazy while another part of her knew that she was getting her never-give-up
husband back. When I didn’t have visitors, I repeatedly played the theme song to Rocky,
“Gonna Fly Now” with my ear buds in, my water bottles close by, doing leg lifts, arm curls and
praying to Jesus on the cross.
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Chapter 15: No Children Allowed in the ICU
D
ay in and day out, I was given the same answer to my question of “When can I see my
girls?” “No children are allowed in the ICU.” Looking back, it was a blessing in disguise
but it didn’t make things any better. Not seeing my daughters pained me. We had our daily
speaker phone conversations, but it could never compare to seeing and holding them. During
one call, I remember both my girls and I were crying. They wanted to see me; they wanted their
daddy home. That call was cut short. I tried to end the conversation on a happy note, but it
didn’t work out well. I was miserable and depression was planting its first seedling inside of me.
This was shortly before FaceTime was available, so there was no way for me to see them. I
could have a live conversation with my roving robot doctor, but not my daughters. I was able to
see pictures of them from Laura’s phone but, again, it’s not the same as seeing them in person.
I would have never wanted my girls to see me so weak, vulnerable and defeated. It was
screwy how I wanted something to happen so badly, yet not wanting it to happen at the same
time. When visitors came in and told me how cute they were and how they were doing, I would
boil up inside; I was not there and they were. One particular day, I felt extremely bitter towards
Laura, of all people. I knew she had just spent quality time with them a few hours before visiting
me. Here was the best woman in the world, trekking back and forth, juggling all of those
challenges and I was pissed off at her because no children are allowed in the ICU. God, I
missed my girls. I just wanted to hug, kiss, tickle and wrestle them.
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Chapter 16: Time to Pack up and go Corky
I
was finally cleared for discharge to a rehabilitation hospital. I had a choice of a few different
hospitals, but my family collectively chose Peat Rehab due to its high ratings and proximity
to home. Peat is rated as one of the top ten rehab facilities in the country. How lucky was I? I
had the best neurosurgical team, along with one of the best rehab facilities. That scenario helped
this rooting-for-the-underdog-Philly-kid.
As they were packing my personal belongings, my charming I-love-you-Becca-clean-upin-aisle-4
nurse came in and put a big piece of medical tape with the name “Corky” on my
helmet. Nurse Becca and I laughed our asses off as she endearingly applied the nameplate to my
helmet. Sorry Corky, but in these situations everyone tries to latch onto some form of laughter,
even if it is at other people’s expense. Obviously, we would have never acted or spoken that way
in public, nor was there any malicious intent.
I saved the “Corky” tape in a journal which Laura had been keeping by my bedside. She
wrote in it daily. Everything related to my hospital stay was in this notebook for me to read:
doctors who came to see me and their prognoses, nurse names, my setbacks, my complications
while I was in the coma, the vasospasms, any progress I made and, most importantly, my healthy
awakening from the coma. Visitors even wrote messages for me while I was in my coma,
sleeping or having off days, like racing Apollo Ono.
It was bittersweet leaving Hospital J and going to the land of the unknown. It was a
frigid, dark, early evening. I must have gotten the rejects from the ambulance company to take
me to my new, temporary home. There was a very large, very overweight, white male with a
pedophile-like mustache. His accomplice was young African-American girl who looked like she
could’ve been a backup singer for the ‘90’s R&B girl group, Salt-N-Peppa. As she was trying to
navigate my gurney into the back of the ambulance, I could tell she didn’t want to mess up her
nails. Fortunately, I had asked for my nominal pain medication, Tylenol with Codeine, before
the ride and I’m glad I did.
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The journey from Hospital J to Peat Rehabilitation Hospital is quite simple. You take
Broad Street North, make a couple of turns and you’re there. Not this driver. The backup singer
took the longest route possible through the half-plowed, snow-ridden streets of Philadelphia.
She loudly pointed out where her grandmother lived and where she went to high school. Mr.
Mustache attempted to strike up several conversations as we went flying over the backstreet
snow mounds during her trip down memory lane. My head was killing me. I looked Mr.
Mustache dead straight in the eyes and asked, “Do me a favor, hop in the driver’s seat and go
North on Broad Street for me, will ya?” Wait for it…wait for it... BOOM! Miss Backup Singer
started laughing and, in a valley girl accent, said, “I can’t believe it. I’m lost.” Mr. Mustache
slowly rose from his deeply imprinted vinyl seat, grunted, held onto the grab bars, and began to
redirect her. He slowly returned to his molded seat and responded to my request, “I’m not
allowed to drive right now. I have a medical condition.” Great! To get my mind off things I
asked him to tell me a joke which he butchered! I don’t think I’ve ever met an overweight guy
that couldn’t tell at least one good joke. I wanted to take off my helmet with the “Corky” label
and put it on his head; instead, I laughed and tried to make him feel good which also made me
feel better, as well.
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Chapter 17: My New Dwelling
M
iss Backup Singer and Mr. Mustache rolled me into my new dwelling. It was like going
from the Ritz Carlton to Motel 6. A strong aroma of bleach lingered in the dimly lit
hallways which were cluttered with wheelchairs and walkers. What the hell did I get myself
into? They pulled me into my new bedroom and positioned my gurney next to the bed. Out of
nowhere, my new my roommate yelled, “I’ve got shit on my balls!” What? He repeated this
loudly, several times, as I was being moved from the gurney onto the bed. Maybe he and I had
some sort of testicular connection? Great, I am in hell! About five or ten minutes later, a nurse’s
aide came in to clean him up.
This was the evening shift, so I understood that there are less people around to help out.
Many times I’d been in that type of understaffed scenario as an RN, but this was not the
welcoming party I expected. Laura and my father were already there because, unlike the Brady
Bunch helicopter, they beat the ambulance driver who had taken her nostalgic tour of
Philadelphia to the rehab. I nearly had a nervous breakdown and did not want to be left alone.
However, within a day, Laura pushed all of the right buttons and I was moved to a new room,
without a roommate.
Day two comprised of rigorous evaluations from the physical, occupational and speech
therapists. They came in one after the other. I was physically, cognitively and emotionally
overwhelmed. I felt like Santiago, in Hemingway’s Old Man and the Sea; out of luck and
struggling to pull that damn marlin onto his boat in one piece.
A therapist arrived to evaluate my cognitive deficits. She asked some basic questions like
the time, day, year, and president of the United States. I aced them because Hospital J asked the
same questions several times a day. Then, she asked more complex questions. “Can you spell
the word world backwards?” I couldn’t do it. “John here is some pennies, nickels, dimes, and
quarters. Can you tell me what each of them is worth?” BOOM! I was only able to get two of
them right. They placed a pile of change in front of me and asked me to add it all up. I couldn’t
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do it. “Can you put these coins in order of value from least to highest value?” Nope, I couldn’t
do it.
Had my second grade memory been erased with this aneurysm? Maybe that roving robot
from Hospital J reprogrammed my brain while I was sleeping? Or was it a temporary or, worse
off, permanent brain damage? I didn’t feel stupid—for the first time, I was struck with horror.
Was this the best I’m going to be moving forward?
Physical therapy came in next and reviewed their plans on how to help me walk again and
get me back to living the best way I could. My mind was still preoccupied with the simple fact
that I didn’t know the value of coins, that I couldn’t figure out how to add coins and that I
couldn’t spell world backwards. Three people hoisted me into a wheelchair and rolled me down
to the open gym area. I quickly assessed the room and compared myself to the other patients. I
created three categories: that patient doesn’t look too bad, holy crap, that patient is royally
screwed, and dead middle, which was somewhere in between. Not being able to walk, count
coins or take care of myself, I put myself in the third category—dead middle.
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Chapter 18: The Schedule and the Shower
B
y the third day, the doctors and therapists had nailed down a comprehensive and concrete
rehab schedule. I had to adhere to their daily care plan and they weren’t very flexible in
deviating from that plan. I felt like I was in Navy boot camp, but now I couldn’t walk or
comprehend the things that were once simple to me. I had to get the hell out of there. The
therapy schedule was posted in my room on a white board. It glared at me and haunted me; there
was no escaping it:
Wake up
Wash face
Brush teeth
Try to wash my undercarriage area
Eat breakfast
…all while in bed.
I would quickly eat breakfast, not only because of the steamy, soggy elements on the
platter, but also because I had physical therapy scheduled in the open pit arena. Next I’d take a
wheelchair ride down to occupational therapy, and then directly off to speech therapy. This
process took about three hours, after which I was rolled back to my room and put into bed for a
very brief break. Again, I was hoisted back into the wheelchair and taken back to occupational
therapy for another longer session. By the end of this session, I was burned out. But then it was
time for lunch and I was rolled into the open area to eat lunch with everybody else.
With each day’s passing, I carefully observed the room. I didn’t stare at those with more
devastating injuries with disgust or angst, I felt more blessed and more fortunate when compared
to own my list of complications and problems. I knew that many of the patients were worse off
than I was. I prayed for them and still continue to do so. Seeing them day after day, it was hard
to not pray for everyone there.
Following lunch, I would go back into the physical therapy pit for another rigorous
session, then on to another speech therapy session, and then back to my room for some down
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time. After this, it was dinner time and I, again, was hoisted back into the wheelchair and taken
back down to the open eating area for dinner.
When I was rolled back to my room for breaks, visitors were allowed to come in and see
me, which they did, so I didn’t really get a break. They could also join me while I was eating.
Close family members were even allowed to attend the therapy sessions. My brain needed more
rest in this place, which never really happened. Rehab is about pushing and motivating patients
to go further and get stronger. I did not miss one therapy session. No matter how butchered I
felt, I didn’t give up or surrender myself to give in.
Upon completion of dinner, I could go back to my room for more privacy with my
visitors. I think their philosophy was that they didn’t want patients eating lunch or dinner in their
room by themselves. They didn’t mind breakfast, but they wanted patients out of their rooms for
lunch and dinner. They were the rules. I was getting annoyed at all of those rules, yet I was not
about to buck the system. The miniature seedlings of depression that started back in Hospital J
were beginning to take hold.
One particular night, it was time for bed and I had a crummy headache. I was allowed to
take half of my normal dosage of codeine—15 milligrams. As I was dozing off, a soft-spoken
black nurse’s aide with a Caribbean accent came in and asked me, “When was last time you had
a shower, John?” “I haven’t had one since before my before my surgery,” I replied. She asked,
“Would you like one?” I couldn’t reply fast enough, “Hell yes!” She and two other people
hoisted me onto a white PVC rolling shower chair and we headed down to the shower room.
It was the first time that a constant flow of water had cascaded over my body in weeks.
Up until then, it was lukewarm bed baths. The nurse’s aide had the shower head on the most
gentle setting and made sure the water didn’t directly hit my skull. As the warm water trickled
down and pooled into my crotch area, I looked down and I couldn’t believe it, I was starting to
urinate right there in the shower chair. It was the most relaxed state I had been in since before
the aneurysm and I couldn’t have been more embarrassed. She didn’t make a big stink about it
and instead said, “Oh, this happens all the time, John; don’t worry about it. Really, don’t worry
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about it.” I asked her if I could have just a few minutes by myself with the warm water hitting
my body. She agreed and closed the curtain.
With my head hanging low, I cried to myself and thought, What has brought me here?
Why had this happened to me? I wished that I had just died. A few minutes passed and she
made the fake knock-knock sound on the curtain. She soaped me up, rinsed me down and dried
me off. I was rolled back to my room and hoisted back into bed. I couldn’t believe that a simple
shower would bear such an impact on me. I know it wasn’t just the shower. A part of me
actually wanted to throw in the towel as I continued asking myself, What has brought me here?
and Why did this happen to me?
As I lay in bed, I stared at my schedule for the following day. I was filled with anger, rage
and more disbelief. What has brought me here? The seedlings of depression were no longer
mere seedlings; they were insidiously starting their next phase.
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Chapter 19: Walking and Putting Pieces of the Puzzle Back Together
A
fter a week of the daily, rigorous physical therapy, I finally stood on my own two feet
without the assistance of others. I further progressed to not using a walker or the handrail
in the hallway. I was really chugging along and exceeding the
doctors’ and therapists’ expectations, as well as my own.
Every night in rehab, I continued my Rocky routine, as started
in Hospital J. I would push myself ten times harder than the
previous day, determined not to give up! Although, the
additional exercises made me extremely physically and
emotionally drained, they also made me stronger. I was
making my come back!
1 st day of standing and
walking without assistance
One particular day, physical and occupational therapy combined my daily tasks at a
therapy session. I was directed to walk down the steps, go to the gift store, buy some mints and a
drink, and then bring back the correct change. I made the journey with my legs but somehow I
came back with the wrong drink, the wrong mints and the wrong change. I went up an extra
flight of steps because I couldn’t remember which floor I was on. It had massively stressed me
out. Yo dummy, how could you forget which floor you left from? Hell, at least I walked it, but I
was scared. Was I going to be walking aimlessly around like this in life?
Looking back, that was an excellent day, but I was emotionally, cognitively and physically
drained. I beat myself up for getting the wrong drink, mints and change and for going to the
wrong floor, but I was proud that I walked the steps by myself. I still don’t know how I received
the wrong change, but it recently dawned on me that it was probably because I purchased a
different name brand of drink and mints. I was one step closer to getting out of there!
Later that day, my parents came to sit with me through one of my therapy sessions. The
occupational therapist tasked me with the activity of copying, sorting, and stapling a stack of
papers. I could tell that it was something she needed for her job. She was multi-tasking at my
expense during the therapy session. I had a brain injury, but wasn’t totally clueless.
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I looked at the four stacks of papers, put them into the copy machine and made twentyfive
copies each. I handed them to my dad and asked him to sort them. After they were sorted, I
gave the stack to my mom and asked her to staple and restack them. Good, job complete! The
therapist peered over and said, “What are you doing John?” I replied, “I’m doing what you
asked me to do.” She explained that she wanted me to do every single step of that task by
myself. I rebutted by saying, “In my previous employment, I would have delegated and assigned
tasks like this to others so I could concentrate and complete more pertinent tasks.”
I think her lesson plan failed with me that day, but I believe she was equally impressed
with my thought process. I knew I couldn’t have copied, sorted, stapled, and stacked everything
the way she wanted it, but I sure knew how to use the resources around me to get the job done. It
was then I identified a reoccurring pattern: I was only able to grasp and correctly complete about
fifty percent of the tasks that were asked of me. That was better than nothing at all, but I
wondered if I would ever get back to one hundred percent?
Following that, my occupational therapist scheduled me for a trial session in the ADL
suite the following day. ADL stands for Activities of Daily Living. The ADL suite resembled a
mini apartment. I had to make my bed, take a shower, make coffee, make toast and use the
stovetop to make scrambled eggs. If I passed this test, I would be yet another step closer to
being discharged! Making the bed was no problem. I had been in the Navy so I did my military
corners—you could’ve bounced a handful of quarters off of that bed. Anyone who has served
our great country would have been impressed with the final result. My left hand was still very
weak and got in the way but I wasn’t going to let that stop me. The shower was a little shaky. I
was still very unbalanced, so I got wet, washed the essentials and quickly got out. It had to be
less than two minutes.
Fresh brewed coffee sounded good at this moment. I gathered the necessary things to do
this, or so I thought. BOOM! I had forgotten the coffee filter and wet grounds scattered the
coffee maker and across the counter. The coffee began streaming from the coffee maker to the
counter and pooled down onto the cold, white, tiled floor. There was only one clean towel and
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one washcloth, so I resorted to using towels in the soiled linen container. I quickly grabbed three
large towels that had been used by the prior patients and cleaned up the mess before anyone
came in. It was disgusting. I had to use dirty towels left over from previous patients, but I was
not going to fail that mission. I scoured my hands like never known to man, discarded the
coffee-drenched towels and moved onto scrambling some eggs. At that point, I was on E (for
empty) and running on fumes. I resorted to my mom’s recipe for scrambling eggs in the
microwave. There was no way in hell I was going to use a stovetop after the coffee fiasco. I
would have burned down the joint.
My mom was the typical Irish-Catholic mother from Philly. She could burn water. She
couldn’t cook, with the exception of her bread crumb topped baked macaroni and cheese. She
redeemed herself by being a great baker. Her chocolate-chocolate cake and chocolate chip
cookies voided out any cooking deficiencies. Along came the unveiling of the new and magical
microwave oven. Our first one resembled our old 1970’s RCA television with the two big dials
and the simulated wood, veneer outer shell. My mom cooked everything in that microwave!
Pardon the flashback; let’s get back to the scrambled eggs.
Scrambled eggs, you can’t screw this up, John. Crack the eggs on the countertop, split
them apart and…crap! Some small shell fragments got mixed in, thanks to my left hand which
was not cooperating with me (and to this day still doesn’t cooperate with me). Stir up the eggs,
pop them in the microwave and on to the toast. Ironically, the toast was perfectly done and not
burnt. I finally sat down at the small, round table and slowly peeled open the foiled lid of the
plastic orange juice container, which I had almost spilled, thanks to my uncooperative left hand.
As my occupational therapist walked in, she said, “Wow things look really great in here
John!” She walked around and evaluated the ADL suite with Laura. She went into the kitchen
and came back out to me.
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Therapist: “No coffee? I thought you liked coffee, John?”
Me: “Yes, I normally do. I’m just not in the mood for it today.”
Therapist: “How was your shower?”
Me: “Great! It was quite refreshing.”
Therapist: “Did someone help you make this bed?”
Me: (I was damn near offended) “No ma’am. I was in the Navy.”
She optimistically mentioned that things were looking great for me getting discharged
sooner than planned. She discussed more activities she wanted to see me to complete later that
afternoon. As she continued talking, I smiled at her while slowly eating my crunchy eggshelllaced
scrambled eggs. With all of my might, I tried to mask and muffle the crunchy,
reverberating, echoing sound from within my mouth. Laura looked over at me when I hit a big
shell and we subliminally and jokingly smiled at each other. It was our little eggshell secret.
Later that afternoon, my therapist handed me a pamphlet and asked me to call the phone
number on the back and order 500 brochures for the hospital. Once again, she was multi-tasking
at my expense. I read through the brochure and started to laugh. The brochure she wanted me to
order was aptly named, Sex after a Stroke. I laughed and said, “How come the people pictured in
this brochure are all like 75 years old?” This also happened to be the time that when my parents
were visiting me. They were looking at me and laughing. We were all laughing together. “Why
aren’t any young people pictured here?” Thank God the brochure didn’t have any overly explicit
pictures, just vague ones, but they were scary enough to make me contemplate how sex was
going to be when I got home.
I continued critiquing the brochure. I couldn’t imagine having sex the way they were
describing it or pictured in the pamphlet. Hmmm, sex after a stroke? According to the brochure,
it sounded dangerous and exciting. If overexerted, it could also be deadly! I couldn’t wait get
the hell out of there and try it! I humorously thought to myself, Hey honey, hold on before we
begin, I have to look at the sex brochure to see if we’re doing it the right way.
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Chapter 20: Finally, I Get to See my Girls
M
y wife walked in, “How would you like to see the girls
tomorrow?” I nearly jumped out of bed with
excitement. I could not wait to see their beautiful eyes and
faces and hug them, touch them and hold their hands. Then a
big dose of fear and reality stepped in. I was concerned about
the way I looked with my big white helmet and I was still
confined to a wheelchair most of the time. I was allowed to
walk during physical therapy sessions, but all other times I was
wheelchair-bound. Laura and I discussed it and how it may
startle them if we met in my hospital room. They were too
young to process or understand that environment, so we decided
that we would meet in the cafeteria.
My heart was overfilled with joy when I saw them.
When they looked at me, I thought as if they were looking and thinking, I think this is daddy,
but I’m not sure. This looks like some guy as daddy, but he’s in a wheelchair with a big white
helmet on his head. When I smiled, it all changed; they knew it was their daddy. At first they
had a hard time keeping eye contact with me. That’s understandable because this wasn’t the
daddy that was always running around acting crazy, tackling, tickling and hugging them.
I hugged them tightly and kissed them both. I didn’t
care that the helmet got in the way. But at the same time, I
couldn’t help but feel like they were looking at a shell of a
man which once resembled the person they called Daddy. I
never wanted to see my kids so badly, yet I never wanted
them to see me so badly.
It was a hard day and an even harder night. When I went back to my empty hospital
room to try and sleep, I started thinking about how life would be when I got home. My girls
would have to see me with my helmet off and my skull looked like someone had carved out
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twenty-five percent of my head. Like at the deli counter: “Number 39!” “Yeah, I’ll take 1½
pounds of the John Cooper skull special, sliced thin.” It was quite scary looking. I was
dreading the thought of how this would play out when I got home.
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Chapter 21: Visitors Die Down; but it’s Hoagie Time
T
he longer you’re in a hospital, the number of visitors and the frequency of visits slowly dies
down. Visits are replaced with a quick call or a text. It’s just how life is. I can’t blame
them nor am I complaining. I just knew I needed to get the hell out of there. After seeing my
girls, I said, “Screw it, I’m going for a walk,” so off I went. I heard my name loudly being called
from behind me and I felt like running, but I had nowhere to go, nor did I have the ability to do
so.
The nurse said “John, you aren’t allowed to walk without someone being with you. You
must be in a wheelchair unless you’re with a physical therapist or a nurse.” She asked me, “Who
said you could do this?” I told her, “Dr. Cooper discharged me from the wheelchair and I am
free to walk the hallways myself.” She ran back to the nursing desk, opened my chart and
couldn’t find this so-called Dr. Cooper. She quickly caught on and wasn’t overly impressed. I
was pretty beat from walking the hallway, so I gave up and took my seat in the wheelchair. She
nearly shoved it up my ass when she pushed me back into my room. All the while, she was
huffing, puffing and cursing under her breath. I know she was extremely mad at my actions. If I
would have gotten hurt, her ass would have been on the line for my stupid act of defiance. Dear
nurse, if you are reading this, I’m sorry.
Around dinner time, my buddy, Billy, came in. In the
hallway, a thirty-year-old male patient was yelling “HOAGIE!”
This patient had also been loudly yelling “MEEEEEE,
MEEEEEE, MEEEEEE” every night for the past week;
however, now it was replaced with “HOAGIE.” It wasn’t necessarily how loud this patient was,
it was how he pronounced it. I dare you to yell this word out loud for five seconds: HOOOOOO-
GEEEEEY!
He repeatedly yelled it for five to ten minutes. Come to find out that his mother had
brought him a hoagie and I’m guessing it was his favorite by his verbal reaction. His mother
said, “Oh shut your damn mouth. I gots you your damn hoagie. I’s gettin’ it open up for you
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right now, so button up.” I think he only said it three more times, then everything went silent.
His mother either hit him or shoved that whole damn hoagie in his mouth because we didn’t hear
from him for the rest of the night. Ironically, Billy and I were both getting hungry for a hoagie.
We laughed our asses off that night and still do today when recalling that time. Occasionally,
we call each other and leave a voice mail message saying nothing but “HOOOOOO-
GEEEEEY.”
It was the funniest day at rehab, with the sex brochures being a close second. Think
about that the next time you have a HOOOOOO-GEEEEEY! May Jesus bless you, Hoagie Man.
I hope you are doing well and continue to keep you in my prayers.
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Chapter 22: I’ve Got my Walking Papers…RED LIGHTS
T
he night before I was discharged, I couldn’t sleep. The adrenalin ran through my veins
with pure joy and excitement—I was going home! As I prepared to walk out of there, I
packed and repacked my things three times that night. After my last repacking, I lost my balance
and almost fell. I caught myself by grabbing the bathroom door handle, but it was a quick and
brutal reality check of what was to come. I found that when I was tired, I was weak and my
balance was less than stellar. It’s still like that today. While pulling myself up from the door
handle, I said, “Enough packing, dummy, get into bed before you hurt yourself.”
I awoke to a sunny and clear day. I was going home today! I slowly got changed and
patiently (who am I kidding—it was more like impatiently) waited for the piles of paperwork that
were headed my way. I refused to eat one more steamy, soggy breakfast, so I skipped it that day.
Soon after breakfast, Laura arrived and in came a doctor and a nurse who reviewed the
monotonous forms, including my discharge plans. It was a daunting task for both Laura and I. I
was getting mentally fatigued, anxious and extremely frustrated. Frustrated like the person that
has thirty six items in the quick checkout line designated for fifteen items or less, then
haphazardly digs through her purse saying, “Hold on, I think I have $0.97 in change, let me
look.” Tick tock, tick tock. Alright already, let’s get the hell out of here! The stack of
paperwork was comprised of a detailed, long-term treatment plan for additional outpatient
speech, occupational and physical therapy. I was not looking forward to any of these. My new
brain just couldn’t comprehend it all and I just wanted to get home. I didn’t want to think about
the weeks or months that lie ahead of me. I said my goodbyes and thank you’s and gave tight,
meaningful hugs to the doctors, therapists and nurses.
They were the best at Peat Rehab—top notch! They have a complete, comprehensive,
caring and professional staff. I’ll never forget the compassion showed towards me when I had
my first shower. I was extremely fortunate to have completed my therapy there. They provided
me with the crucial building blocks needed for a successful recovery.
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With my final signature complete, I was good to go. I stood up to leave and proceeded to
walk out on my own two feet, as I had planned to do since the first night I got there.
Wait for it…BOOM! A hospital protocol foiled my plan. “You must be escorted out of
the hospital in a wheelchair upon discharge,” was a voice I heard from behind. This may not
sound like a big deal to most, but it was an emotional blow that took the wind out of my sails.
Begrudgingly, I sat down in the wheelchair and was escorted to the front door of the hospital. As
soon as the double door slid open from the center, I stood up and quickly and unsteadily walked
the twenty-five feet to the car and jumped in. The escort tried to get me back into the wheelchair
before I got to the car, but I won! I was like a Corky Carl Lewis headed towards my car. As you
can imagine, Laura wasn’t happy with this anarchistic uprising. However, in my eyes, I did get
to walk out of the hospital on my own two feet. That sweet, small victory was mine.
As we pulled away from the hospital and headed home, I was flooded with good and bad
emotions. I couldn’t wait to spend time with my girls and be in my own home, but numerous
what ifs were going through my head and my anxiety was going through the roof. Just writing
about it stresses me out. I held Laura’s right hand as she drove us home. She calmed my nerves
and assured me that, “We are going to get through it.” Notice, she didn’t say, “You are going to
get through it.” She said we. I could see how happy she was which, in turn, made me happy. It
was an emotional, seesaw of a ride home.
We approached a red light; it was a standard, red traffic light. What does one do at a red
light? You stop, look at your mirrors and look out your windows at the cars to the right and left
of you. You check out your surroundings and wait for the green light. At least, that’s what I do.
I was looking forward and I could feel the heat of the driver’s stare in the car to my right. It was
like a laser cutting through ten inches of titanium. He disgustedly looked at me as if I had
leprosy. I quickly turned my head and nervously looked forward with my oversized white strapon
helmet.
Reality quickly set in. I’d been in the rehab hospital with traumatic and acquired brain
injury patients. Most of us had worn those big white protective helmets—that was the norm.
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We would pass one another in the hallway and nod; sort of secretly saying to each other, “Yo,
what’s up helmet head?” “Yo, what’s up with you?” Out in the free world, I was going to be the
target of many insidious gawkers. This was my new normal. I refer to them as “RED LIGHTS,”
and I was going to have one hell of a challenge ahead of me.
I thought to myself, Please turn green, please turn green, please turn green! When the
light finally turned green, I closed my eyes and strongly wished harmful and diabolical
happenings upon the driver of that car. If I had a voodoo doll, it would have been burned and
torn to shreds; to hell with the pins! I don’t ever recall having such a strong hatred towards
another human being. I felt a genuine and unadulterated hatred for that man and thought he was
a disgusting human being. Would I ever be able to move on and get over this?
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Chapter 23: Home
P
ulling in, I remember seeing my girls homemade Welcome Home
Daddy! signs, along with the purchased party-store-version which
the adults had put up for my special homecoming. I was overwhelmed
and flooded with emotions. It was the best feeling in the world to hug
my own girls in my own house, but reality quickly set in yet once again.
Upon this first real big hug at home, my helmet was in the way. I
couldn’t get close enough to them. I couldn’t get an honest cheek to cheek hug. There aren’t
enough words to describe my disappointment and anger. I knew there were going more
disappointments ahead of me, but I was finally home with my family and that’s what mattered
most.
When putting this chapter together I thought it would have been longer and with more
memories, but I just cannot remember much about that day. I was either under too much stress
or I must have blocked out some occurrences during that tumultuous time. I talked to my
psychologist about it because this was really bothering me. She explained that evolutionary
biologist’s research had suggested that patients tend to remember negative thoughts during a
traumatic or life-changing event in order to protect themselves from similar, future events. She
further explained that more mental effort is required in recalling good memories. So in my
current state of mind, while trying to remember and write about it today, I find much solace in
that reasoning.
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Chapter 24: Home: New Life, Rules and Challenges
O
nce home, a lengthy list of can’t do’s was bestowed upon
me. As you may have noticed by now, I don’t like being
told what to do; and better yet, what not to do. Being an
anarchistic in so many aspects of my life, my attitude has
caused me to fail but it has also played an important role in my
success. When combined with my motivation and drive, it’s
Me, the anarchist, back in the ‘80s
either a big win or a devastating failure. My addiction to never give up sometimes carries
deceptive and devastating consequences which, at times, has brought me crashing down to my
knees. However, I will never give up!
Here are a few items I can recall of my Can’t Do List:
No driving
No straining
No bending over
No lifting anything over 20 pounds
No getting out of bed without my helmet on
No drinking beer / no alcohol consumption
No long periods of watching TV, using the computer or being on the phone
Mandatory rest periods: 5 – 7 per day for at least 30 – 45 minutes each
Let’s see how I do.
No driving. I think it was about a week since I had gotten home and cabin fever had set
in. As a man, I needed to drive. I needed to get out without someone chauffeuring me back and
forth to therapy. The perfect day presented itself, as Laura, my kids and mother-in-law, Grace,
weren’t home. Since discharged, a family member had always been at the house to help me
make it through the day, as I was not yet self-sufficient.
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I needed to get out, but where should I go? I could only think of one place. The Mart.
Could this be the store where I blend in with others? (Because I am not able to use certain
people, places’ or things’ proper names, I’ll give you a clue of which store this is: the first part
of the Mart’s name is not a ceiling or a floor. It’s more or less the place what you hang pictures
on…on a ****. Put this word in front of Mart and you’ve got it! Please say you got that clue. If
you have a brain injury, I’ll let it slide.)
I hopped in my silver Honda Accord and started her up. I felt like a man again. I was
thinking that maybe it wasn’t the greatest idea, but I had to do it for my own sanity; I had to get
out by myself, alone. It felt great driving my own car. As I made my way towards the Mart, I
approached a red traffic light and then, BOOM!, another RED LIGHT. This time I was
prepared. As I looked out my driver’s side window, there was a man staring at me with a
disgusted look. I revved up my engine, and with my tongue hanging out my left, lower lip, made
a crazy-looking face. After the light turned green, I removed my foot from the brake and took
off like a bat out of Hell. Damn, that felt great! It was total retribution from the first RED
LIGHT encounter on the drive home from rehab. I became engulfed in a lengthy, full-belly
laughing episode. I felt alive! The crazy and funny Johnny is coming back!
I slowly pulled into the Mart’s parking lot, exited my car and walked into the store. I
can’t remember what I purchased but I enjoyed walking around. Remarkably, not many people
looked at me with disgust. Most looked at me with compassion and some sort of understanding.
I was taken back and blown away at the same time. Even before I walked in, I had prepared
myself for the worst. Part of my anxiety of the trip had been smothered out from the RED
LIGHT encounter just prior to my arrival. Was this my new, public safe haven? Or perhaps I
had turned into one of those Mart Martians. You know, those crazy pictures of guys dressed up
like women or the morbidly obese women wearing clothes that are six sizes too small.
I went to the checkout line and the cashier kindly smiled at me. She asked, “Why are you
wearing a helmet?” Because of her sincere voice and kind demeanor, I had no problem telling
her my abridged version. She stopped dead in her tracks. Her eyes started to tear and she
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reached for some tissues. “I lost my father to a brain aneurysm. I’m so glad that you made it
through.” She put my items in that spinney bag thing, handed me my receipt, then came out
from behind the counter and gave me a strong, sincere, heartfelt hug. It was unbelievable! I
thought, Okay, this is turning out to be a great day.
I walked out of the store to my car and put the bags in the trunk. As I was getting in, I
forgot about the damn helmet and BOOM! I banged the right side of my head. Yes, the affected
right side. If not for the protection of the helmet, I would have just received my last hug ever! I
knew I shouldn’t have gone out in the first place and that bang reminded me of how vulnerable I
really was. I kept my eyes straight on the road the entire ride home, even at the red traffic lights.
I made it home before anybody knew I was gone. I was so drained I could barely move, but I
also felt alive.
No straining. You would be amazed at how much you strain throughout the day and
don’t realize it. I was still getting painful headaches for which I took codeine. The major side
effect of codeine is constipation and when you’re constipated you strain and when you strain
with twenty-five percent of your skull missing, it is quite a unique and eerie experience. One
particular day, as I was bearing down, it felt like the right part of my head, which only had the
skin as a barrier between my brain and the outside world, would partially expand outwards. I
placed my hand over my missing skull area when I strained in hopeful expectation that it would
hold things back from dislodging or popping. I don’t know what I was thinking; I just knew this
couldn’t be good. Stool softeners were a complete failure. I thought, Screw this; I knew I
needed to move up to the heavy artillery—the almighty blue, shiny pill—the laxative.
Thankfully, the blue, shiny pill was the solution and the straining subsided. Then came Double
Jeopardy.
No bending over. I am a big proponent of sanitary wipes (aka butt wipes). I firmly
believe that when your butt is thoroughly clean, you simply have a better day. While fighting the
constipation demons, I recall, one particular morning, dropping a package of my precious buttcleansing
wipes on the bathroom floor. They bounced off my foot and slid across the floor. I
looked down. “Really? Come on!” After about ten minutes of straining, all while attempting to
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hold my brain in with my right hand, I stood up and bent over to pick them up. I was at war with
myself and my brain didn’t like it. I nearly passed out before sitting back down on the throne. I
finished my business, washed my hands and barely made it back to bed where I was rendered
useless for the next few hours. That was the kind of stuff I hadn’t expected to deal with every
day. Why would I have thought about it before? However, this particular situation and my
newer circumstances made me think differently.
No lifting over 20 lbs. Lifting mimicked the same results as straining. As I alluded to
earlier, I have an anarchist personality, so it goes without saying that I pushed it a little.
However, when I did, it felt like a water balloon was coming out of the right side of my skull. I
was pretty cautious about not overstepping that boundary often.
Mandatory rest periods, 5 – 7 per day. Now here’s the pièce de resistance…a bad storm
had rolled in and shattered our outdoor glass table top on our deck. The old John would have
said, “Well let’s just go buy a new table—a better table! Hell, let’s go buy a whole new set and
donate the rest!” The new John’s brain wasn’t working so well, so I had to the deal with what
we had. I took out the shop-vac and cleaned up the thousand pieces of broken glass on the deck
(no bending, no lifting, no straining—pfftt, no problem). However, after completing this task, I
was completely drained and had to rest for three or four hours. During that rest, my brain just
wouldn’t turn off and I came up with an idea to fabricate a new tabletop, but I wasn’t sure how to
execute it. The issue was that my brain wasn’t the same as it used to be. I used to be able to
plan, execute and complete tasks like this lickety-split; however, it was a whole new ballgame
and I wasn’t quite ready to play in that game.
Put them all together and… I just could not get this idea out of my head so about two
days later, I began implementing my idea. I had found several 1” x 2” x 8” strips of wood in my
basement and put my brilliant plan to erect a new tabletop into action! I eagerly thought, This is
good. Your brain is starting to work better, John. My plan was to frame out the table and put
the wood strips on top. I would then secure the wood strips to the frame, then sand and stain
them to make it look as if it were a new teak table top. Let me reiterate: I was still thinking and
acting as if I was still the old Johnny, but I was nowhere near it. The old Johnny took over with
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his anarchistic, fast and furious actions. The you can’t tell me what I can and what I can’t do
Johnny. So on a sweltering ninety degree afternoon, I started assembling my newly devised
tabletop. I strained, I bent over, I lifted wood over twenty pounds and even took my helmet off
because it was so damn hot out. As I was inserting the final screws and applying the final coat of
stain on that God-forsaken tabletop, I drank three cold beers. I never cursed so much in my life.
Upon completion, I inspected it and proudly puffed out my
chest like a cave man that had just started a fire. I was proud of my
accomplishment. These therapists were wrong, “I can get back to the
way I once was before!” What did that victory offer me? In retrospect
I can say not much; I was physically, cognitively and mentally
annihilated for five days. I liken it to competing in an Iron Man
Competition with two flat tires during the bike portion, flip-flops
during running portion and wearing a snow suit during the swimming
portion of the race. Looking back, as this is always so easy to do in life, I shake my head and
wonder, What were you thinking John? Laura bought a new table two weeks later. That’s all I
have to say about that.
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Chapter 25: Church
W
hen I awoke from the coma, praying to Jesus on the cross was one of the first things I
did. I prayed to Him first, in thanks for sparing me my life. And secondly, to give me
the strength and ability to overcome what was ahead of me. I prayed several times a day,
especially late at night when I was alone. During the horrific vasospasms, I remember saying,
“Jesus, why have you forsaken me?” This, I believe, goes back to my childhood and the movie I
watched every year before Easter where Jesus was nailed to the crucifix. (Again, I must reiterate
that it is not my intention to compare myself or my pain to Jesus.) The pain was that real for me.
I prayed vigilantly every day.
I prayed in fear and I prayed in anger. I prayed every night in the ICU at Hospital J and
at Peat Rehab while staring up at the ceiling and trying to count the holes in the tiled ceiling
panels, which was enough to make anyone go mad, yet alone a brain injured person. I made the
pact that so many often do: “If you get me out of here, Jesus, I will go to church every Sunday.”
I prayed and I prayed and I prayed.
I was now home and it was time for me to hold up my end of the bargain. I was
confident that church would be a safe haven, even better than the Mart. My gracious neighbor
offered to drive M and I to mass with her family. Overly self-conscious about my appearance
with the big white helmet, I attempted to compensate by being sharply dressed.
I chose to sit in the last, small pew in the back of the church with my daughter, as it only
held three people and offered a miniature closed environment—an easy escape route as certain
noises and situations made me anxious. If need be, I could exit expeditiously.
The first mass I attended, I looked up at Jesus on the massive cross and tears filled my
eyes and quickly rolled down my cheeks. It was an extraordinarily spiritual and powerful
moment. It felt like there was no one else there except for my daughter, Jesus on the cross and
me. I had seen Jesus on the cross thousands of times before but it had never impacted me the
way it did that day. I was stumped, but at peace. As mass went on, RED LIGHTS started staring
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at me and, before long, it was time for communion. M had not received her first communion yet,
but I had always taken her up in front of me to have her blessed by the priest.
As I walked down the aisle to receive communion, BOOM!, there were RED LIGHTS,
RED LIGHTS and even more RED LIGHTS; in front of me, behind me and all to the left and
right of me. M was seeing, feeling and living my pain and humiliation; what did I do to deserve
theses looks? I felt like saying to anyone that looked at me the way they did, “Shame on you,
shame on all you bastards.” I didn’t stop or turn around, but tried to smile and look straight
forward as we continued our journey down the aisle to receive communion. As M and I walked
back to our small church pew in the back of the church, more RED LIGHTS stared and gawked
upon my daughter and I. I wanted to yell, “Keep my daughter out of your ugly looks and
thoughts. Go to Hell!“
We went to our pew and I said my final prayer while staring at Jesus on the cross. I
wasn’t crying that time; I was shaking my big white helmet head back and forth in disbelief. I
told M it was time to go and we left. We waited in the parking lot, on the other side of my
neighbor’s minivan. I figured that it would provide a good height barrier from any additional
RED LIGHTS coming out of mass. I did continue to attend church, but haven’t been back to that
particular church since. Can you blame me? In time of needing support, I got RED LIGHTS
and feelings of condemnation.
I see things more vividly now. I pray at home every night with my daughters. We pray
for everyone that is less fortunate and more fortunate than us. We even pray for those RED
LIGHTS because they are less fortunate than us. I do pity those that think just because they
show up on any given Sunday, put their money in those little white dated envelopes and think or
try to act like they are good people, that they will automatically be granted a free pass into
heaven to meet Jesus. I’m not sure, but I don’t believe it works that way. I feel sorry for them.
Mind you, not everyone in that church was cruel, but there was a remarkable amount of them. In
my eyes, anything more than one is unacceptable, excluding children.
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It infuriated me because although I wasn’t raised in this particular church, I was raised in
this faith. I was raised to help people and go out of my way to make people feel special. I
believe Jesus knows me and sees what I do to help others and when I do show up at the pearly
gates to see St. Peter and meet my Maker and Savior, I won’t have a small, white dated envelope
with cash in it. Instead, I will have my acts of kindness, love and compassion stretched across
my chest. And I can only pray that I’m able to continue to do good for others so I am received as
well as I am describing myself above.
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CHAPTER 26: The Driver’s License Center (DMV)
G
o figure…during my helmet-wearing days, my driver’s license expired. I didn’t want to
get it renewed with my helmet on, but I had to if I was going to drive. So off I went to get
my new picture ID taken. Laura drove me to the DMV that day. After entering the building, I
hesitantly took my number and waited for my turn. Several minutes later, an older woman at the
brink of retirement called my lucky number. She looked as if she should’ve been wearing a
freshly ironed flowered apron at home and making a nice warm homemade apple pie versus
being here. She reminded me of my Nanny Cooper who, unlike my mother, was a great cook in
my eyes.
As I handed my numbered card to her, she looked up at me and said in a sweet and honest
tone, “Oh, did you ride your bicycle in here today?” I couldn’t be mad; I just smiled. But in my
mind I was thinking, Yeah, I rode my frigging bicycle up here to get my driver’s license renewed.
Really? I could tell she was a genuine, sweet woman, so I explained the abridged version of
what happened. She respectfully asked me step back about five feet and instructed me to sit
down to get my picture taken. “John, will you be wearing this helmet the rest of your life or past
the next time your license expires?” “No ma’am. The plan is to get my skull replaced in about
six months and not wear this helmet.” “Okay,” she said, “you are going to have to take the
picture with the helmet off because your picture license lasts for a few years.”
As I removed my helmet, I temporarily forgot about
the massive piece of my missing skull. The kind woman
snapped my picture and, for the first time, I saw myself with
my skull missing. It was like a horror film poster. I looked
disgusting. I wanted to punch the screen. I was grossed out.
With the newer technology they could retake my picture
several times which I had asked to be done. I had the option to choose the best picture but I
didn’t want if any of them. Was I turning into my own RED LIGHT?
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I wanted my skull back. I wanted my old life back. What has become of me? Choose
whichever curse word you want; I wanted to scream it out loud ten times. In the shower at Peat
Rehab I felt sadness but at the DMV, my bottled up rage was near the point of eruption. Laura
and the pleasant, grandmotherly-looking-picture-taking-lady choose the best picture with the best
smile for my new license. She sealed the new picture which felt like it was sealing my fate. This
would be another constant reminder of what my life had become and what I had turned into.
With a warm smile, the kind of smile you can see through someone’s eyes and deep into their
soul, she sincerely said goodbye and wished me good luck.
On the way home, I sat in the car staring down at my horrific driver’s license picture
sitting upon my lap. I did everything I could to not cry or to not violently smash the dashboard
in with my fist. Laura and the homemade-apple-pie-picture-lady were very supportive of me;
but the more I looked at that picture, the more I started to loathe myself and question Why was I
saved? How come I didn’t die from that giant, ruptured aneurysm? If this is how I’m going to be
living from now on, I don’t want any part of this life.” All those emotions had reached a boiling
point. It was a dark period for me. Those seedlings had started to spread at a high rate of speed.
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Chapter 27: The Party Couldn’t Have Come at a Better Time.
I
n a time where total darkness surrounded me, a blinding light suddenly appeared.
Unbeknownst to me, my family and friends were putting a special event together which I like
to refer to as my 40 th Birthday Party. Simply put, it was amazing! They had a band, auction
items, baskets of goodies and various activities for everyone in attendance. I couldn’t believe
how many friends and family members were involved in putting it together.
For the first time since being home, I didn’t feel uncomfortable
wearing my helmet. I did feel a little sad here and there because I noticed
that some people were looking at me and saying to themselves, I feel so sorry
for you, Coop. A lot of people who I hadn’t seen in a long time had
concerned facial expressions. I probably would have reacted the same way if
I hadn’t seen a friend or family member in a long time and then, BOOM!,
they were wearing a big, white helmet and had suffered brain damage. That
must have been a little shocking to them. I was a tired-looking, slower-walking and slowerthinking
Coop which was something that people weren’t accustomed to.
I ran into people I hadn’t seen in weeks, months and even years. Some were there
because I had worked with them, some were friends and some were family. Some were even
people who I had somehow touched them in their life. Everyone had a drink in their hand and
smiles on their faces—including me! It was in that moment I thought to capture the names of
everyone who came to see me so I could remember. I grabbed a black Sharpie marker from one
of the tables and sat down to rest.
I was completely overwhelmed, emotionally drained
and mentally whooped, but there was no way in hell I was
going to leave. My body told me it was time leave, but my
heart said No way! I just needed a break. I didn’t want to
appear weak to anyone, so I succumbed to sitting. Most
people had never seen the beat-down, tired and post-brain-injury-annihilated Coop. I took
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several deep breaths and as people came up to talk to me, I asked them, “This is a special night,
do you want to sign my helmet?” My confidence exploded like a dormant volcano. A
formidable line formed for people to sign my helmet. This was intoxicating because as they
were signing it, we were sharing stories from our past. Some stories made us cry, but for the
most part, we laughed our asses off having true and sincere full belly-laughing episodes. That
blinding light had temporarily put my darkness to rest.
The next thing I know, I’m hearing, “Where’s Coop? We need
Coop up here at the microphone.” My buddies, Billy and Matt, had a
few, very nice words to say about me. Everyone cheered and hollered,
“Speech, speech, speech. Coop, Coop, Coop!” The band got involved
and then Rocky theme song, “Gonna Fly Now” came on. I was
pumped up! They handed me the microphone and I exuberantly sprung
to my feet.
Looking out over all of my beautiful family and friends, I could
only think to say, “Thank you so much for everything. My only hope is
that everyone makes at least one new friend before they leave here
tonight.” I did my best to hold back my tears but when I looked out, I
didn’t see a dry eye in the house. Hell, that wasn’t my intention. My best
friends, my wife and my family came up and hugged me tightly and
within seconds, we were all crying like babies.
I saw my godmother, Aunt Pat, whom I hadn’t seen in a long while. She had flown up
from Florida to attend the party. I was totally drained at this point of the evening, but I wanted to
talk with her and I’m glad I did because it reinforced my belief in the power of prayer. My aunt
was a respiratory therapist in a hospital and she told me of a woman who was a custodial
engineer who had been praying for me. I was exhausted, near brain dead and thinking to myself,
Do you know how many times I’ve heard this tonight? I was extremely thankful for all of the
prayers but I was quickly fading out. This, of course, was not my normal caring thought process,
so I thought again to myself, Okay, let’s get on with the story, Aunt Pat.
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During the same time of my giant, ruptured brain aneurysm, there was a horrific
earthquake in Haiti. Thousands of people died and even more were left homeless. This poor
woman who my aunt worked with had lost her son and many other family members to that
earthquake. However, she heard about me and started a prayer chain with her family in Haiti and
beyond. She had been praying vigilantly for me. I broke down in tears in front of my Aunt Pat
and everyone who was around me. My heart was light and airy, yet heavy, like boulders
recklessly tumbling down a steep, wet mountainside. Here was an anonymous woman from a
third world country that had lost everything near and dear to her and she and her large prayer
group were praying for me. Why me?
It was in that very moment that the why me meanings were changing. The past few
months it was a woe-is-me-why-me? Right then and there, it turned into an honorable-mentalwhy
me? It was a very humbling moment in that crazy, fun-filled night. I cried and hugged my
aunt and told her, “I will pray for this dear woman and her family.” I asked my aunt to thank her
for all of their prayers well wishes.
As the evening went on, friends and family continued
tagging my helmet with messages and signatures. At one point,
I recall the lights slowly dimming and a hefty, beautifully
decorated birthday cake with an edible flag of Ireland on top
was presented to me.
It was then plastered with forty bright, flickering candles. The
band started and everyone followed suit in singing the birthday song. I
think Laura and friends helped me blow out the candles because if I did
it myself, I probably would have had another aneurysm with all that
straining. My friends then handed me a birthday envelope with a
special gift enclosed. Not many will have the opportunity to experience
the amount of love and support I received that evening. The party
couldn’t have come at a better time.
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I felt like George Bailey at the end of the movie It’s A Wonderful Life where Clarence the
Angel wrote a message inside the angel’s copy of Mark Twain’s The Adventures of Tom Sawyer:
Dear George,
Remember no man is a failure who has friends.
Thanks for the wings!
Love, Clarence
A few weeks later, as if this weren’t enough, my brothers at the Ancient Order of
Irishmen held a second birthday party for those that couldn’t attend the first one. As I reflected
upon each of those events, it was almost like attending my own funeral. Many people wonder at
least once in their life, Who would show up at my funeral? I was pleasantly surprised, amazed
and very thankful for having been given the opportunity to experience it firsthand. I know that I
had survived for some reason which was still yet to be figured out; however, I stopped
questioning myself daily. Just like Dory from Disney’s Finding Nemo, I knew that I had to keep
moving forward and “just keep swimming, just keep swimming.”
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Chapter 28: Moving Forward…“Groundhog Day”
W
ithin a week of being discharged from Peat Rehab and for several months following, I
attended rigorous outpatient therapy back at Peat Rehab (I still continue certain
therapies there). They consisted of physical, occupational and speech therapy. They even threw
in a psychologist. I guess it was like a tire sale package deal: buy three, get one free. (By the
way, I never understood that. Buy three tires, get one free? Who the hell buys three tires? You
buy one, two or all four tires. I know and understand the marketing concept, but I find it to be
annoying. I am not impressed with that type of inadequate dummy marketing. I digress…let’s
keep the story going.)
As I was unable to drive, Laura drove me forty-five minutes to and from therapy, two or
three times a week. She would pay close attention and took a copious amount of notes. She
stayed on top of me and made sure I was doing what was suggested by the therapists. That put a
major strain on our relationship. Before the aneurysm, we were equal partners. Now she was
tasked with playing housemaid to me and my brain injury, in addition to holding down the fort
while parenting our two daughters, paying bills, working full-time and being a great mother.
Without my big, beautiful, blue-eyed wife, I would have never made it as far as I have.
Therapy could only get me so far. Laura took it further by pushing and supporting me.
She wanted to see me succeed. She needed me to succeed. I attended a seminar on brain injuries
to learn as much as I could. They discussed that the divorce rate following a brain injury was
well over forty-five percent within three to five years. This is in addition to the forty percent to
fifty percent of the present divorce rate. So, roughly five out of ten will get a divorce. From
those five remaining, two or three will get divorced due to the added stressors put on a marriage
from a brain injury. I am happy to report that we are still married today because she never gave
upon me; she never gave up on us. Do you know how strong a person has to be to overcome
those odds? I do!
I didn’t notice any noteworthy improvements. I noticed a few things here and there, but
not much. Every time I headed down to therapy, I felt like Bill Murray in the movie Groundhog
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Day. Everyone kept explaining to me that in my type of recovery, “If treated like a race, you
must treat this like a marathon, not a sprint. Improvements will be seen over longer periods of
time, not shorter periods of time.” That didn’t sit well with me. I was, and still am, a goaloriented,
Type A, bullheaded, anarchistic son-of-a-bitch. When people said “no” to me, they
obviously didn’t know me. I wanted that damn helmet off and my damn missing skull bone put
back in my head. I didn’t want people doing things for me anymore. I wanted my wife and my
children to have a real man, not a half of a man. I was sick of all those RED LIGHTS. That
“moving forward” and, “just keep swimming” philosophy was adding more weight on my fast
moving downward spiral.
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Chapter 29: Let’s Talk About Sex, Baby...
S
o how was it going to work out? I knew for sure I wasn’t going to reference the pictures
from the brochures I had to order at Peat Rehab. It was just like riding a bike but without
the helmet. There was no way in hell I was I going to have my Corky helmet on for that! Since
it had been such a long time, it lasted about as long as this chapter. It was absolutely fantastic!
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Chapter 30: Squirrels!!
I
t was a tranquil, sunny Fall afternoon in the Cooper household and I was sitting in the living
room with Laura and our daughters when we heard a strange scratching noise coming from
the dining room. We all looked at one another, bewildered, as if to say, “What is that noise?” I
turned around, looked into the dining room, and there he was—BOOM! “Squirrel,” I yelled!
We all jumped up at once! I went one way and lunged
towards the windows in an attempt to scare him out of the
house. Laura went the other way and opened up the front
door. The girls were frantically screaming and jumping up
and down with fear (so was I, but on the inside). In a flash,
the squirrel darted up the steps and ran into M’s bedroom. M and I bolted up the steps, entered
the room and tried to scare him out and back down the stairs so he could exit the front door.
(Mind you, all the while our black-tie Persian cat, Guinness, just sat there and stared at the
squirrel running up the stairs.)
“Alright squirrel, it’s you or it’s me. This is my house!” As I lunged towards him, he
shot down the steps, skipping every three or four steps and raced out the front door. In doing so,
that little bastard pooped a dozen or more little, dry squirrel pellets all over M’s bedroom. I
thought, What the hell just happened? I felt like Clark Griswold in National Lampoon’s
Christmas Vacation movie when the squirrel lunged out of their freshly-cut, farmed Christmas
tree. As we cleaned up the squirrel poop, we scratched our heads and laughed uncontrollably
retelling our own version of what had just occurred.
Then the eerie pause ended our laughing session. “Do you hear something?” “Yes, it
sounds like something is scratching behind the walls or up in the ceiling.” Damn, more
squirrels? We couldn’t see them, we could only hear them.
I quickly made a call to my buddy, Billy, and my Uncle Bob. Within 24 hours I had three
squirrel traps. Bob figured out where they were coming in and installed wire mesh to deter their
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reentry into my domicile. I set the traps up on my back deck with peanut butter crackers and the
next day, I hit the jackpot and caught three. What the hell do I do with them now? I have three
trapped, pissed off, vicious squirrels.
I was raised up in Philly and I‘m not a nature guy by any stretch of the imagination; I’m a
street kid. I respect nature and I recycle and all of that good stuff, but I’m no nature boy. When
I go fishing and catch something, I cut off the hook and put a new hook on the line so I don’t
have to reach inside the fish’s mouth. It’s just not my thing. However, performing manual heart
pumping on someone after their ribs were cracked open (when traditional CPR didn’t
work)…that was a walk in the park for me. Those squirrels were a completely different skill set
for this city boy.
So what was I to do? I called up Billy and Uncle Bob again who both instructed me to
release them a few blocks away from the house. Still not being allowed to drive, no one in my
house minded when I went for my short drive to release them (heck, nobody else wanted to do
it). It was my miniature get out of jail free card to drive a car and drop off some squirrels.
They were angry little creatures of God, not the nice, cute-looking creatures I saw every
morning running up my trees and having fun. These captured varmints were growling at me like
little chihuahuas on crack cocaine. I quickly and squeamishly put them in my trunk, drove a few
blocks away and released them. Day after day I caught squirrel after squirrel. Were the same
ones coming back? I needed to be sure. But how?
The brain-injured, Philly kid in me had a brilliant idea. After catching the squirrels and
while they were still in the cage, I’d spray-paint their tails. I had a bright, fluorescent orange
spray paint in the garage which was really marking paint used on roads. It wears off quickly on
the streets, as far as I knew, so it should eventually wear off the squirrels’ tails, right? My next
couple squirrel catches were sprayed with the fluorescent orange spray paint and released a few
blocks away. And, to my amazement, the same squirrels came back! Those orange-tailed
creatures found their way back to my house! I was dumbfounded. A few more phone calls to
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Billy and Uncle Bob and it was agreed they needed to be released further away—a lot further
away.
About a mile and a half away from my house, there’s a park with a lake. Over the course
of the next three weeks, I would collect my newly trapped, growling squirrels, spray paint their
tails, load them up in my trunk and drive them over to the park for a quick release—and I mean
quick. I would open up the cage door, throw the trap down and watch their bright orange tails
magically disappear into the woods.
I lucked out. In all my releases, no one ever drove by or observed my demented activity.
I would slowly and cautiously scope out my release site area. When my brain gave me the all
clear order, I set them free. Imagine what would have happened if a Park Ranger was observing
a grown man wearing a big, white helmet, pulling out caged- fluorescent-orange-sprayed-tailed
squirrels from his trunk and releasing them into the woods while squeamishly dancing and
yelling “ew, ew, ew,” like a scared little five year old. That would’ve been one hell of a mug
shot.
Thankfully, the squirrels never returned. Word must have got out in the squirrel
community: “You best not mess with the cage-wielding, white-helmeted man.”
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Chapter 31: On the Way to Cape May
C
ape May is one of mine and Laura’s favorite little getaways, especially when we were first
dating. At one point in time we even contemplated buying a house there. Our very first
getaway there I sang one of my favorite Frank Sinatra songs, “That’s Life,” to her and an 85-year
-old woman at the Cool Mug Saloon. A few years later, we walked out of that same bar and
found an older woman sitting on a bench, clearly upset. Ironically, she was reading the front
page of The Philadelphia Inquirer which informed everyone that Frank Sinatra had died.
Everyone, including myself was in disbelief and clearly devastated. We’ve had highs and lows
in Cape May and the lows never cease to stop us from going back.
I received the delightful news that on August 20, 2010, I was scheduled to have my
cranioplasty surgery. This surgery would put my skull plate back in and eliminate the need for
the helmet. We also scheduled our family vacation with our friends to Cape May, NJ that
August. We thought it best to take vacation prior to the cranioplasty surgery due to not wanting
the sun beating down on my incisions or sand from the beach possibly getting in them and
causing infection. We also weren’t sure what the recovery from cranioplasty surgey would be,
so we booked vacation for the beginning of August. I was excited to finally get the chance to get
away with my family and close friends, Frank and Dawn and their daughter, E.
A few months prior to our vacation, I had been hospitalized back at Hospital J to rule out
transient ischemic attacks (TIA). TIAs are mini-strokes caused by a clot. The difference
between a CVA and a TIA is that with a TIA, the blockage is transient or temporary, which may
indicate a person’s likelihood of having a stroke in the near future. The odds were stacked
against me and statistics don’t lie. The chances of me suffering a cerebral vascular accident
(CVA) within five years post-ruptured aneurysm were astronomical.
TIAs are sort of like the check engine light on your car telling you that something is
wrong. Some of the doctors who saw me at Hospital J thought these TIAs may have been
seizure related, so they increased my anti-seizure meds. Increasing my meds or not, it wouldn’t
have mattered. In my eyes, what was about to happen was inevitable.
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We headed down to Cape May, New Jersey, which is a great family-oriented seashore
town. While on the beach, I encountered many RED LIGHTS and did my best to ignore them;
but for a few, I looked over at them and made the crazy-looking face. They looked back at me
scared. For some demented reason, it made me feel better; like I had better control of how I
would allow others to perceive me. It may sound a little sadistic, but I felt like I had better
control over the starring matches.
Wearing the helmet on the humid ninety degree beach felt
like having a large plastic bag wrapped around my skull with a
thick wool winter hat over top of the plastic. The uncontrollable
and profuse sweating left me feeling like a squirrel that had just
been sprayed by a skunk. Sometimes it smelled horribly rancid
and I would use my sanitary butt wipes to freshen and clean up my
skull and the helmet. (I firmly believe that when your butt is
thoroughly clean, you will always have a better day. That
philosophy also applied to my sweat-covered skull and helmet.) I
did not want to miss any part of the vacation with my girls, so I succumbed to sweat and smell
and sheer exhaustion of going to the beach each day.
This way of thinking, however, was about to take a toll on me. One night on vacation, I
woke up around 4 am to go to the bathroom. Something wasn’t right, as I was bumping into the
walls on the way to the bathroom. Standing at the toilet, I looked down and noticed I was
swaying left to right, urinating all over the floor. I couldn’t keep my balance. I brushed it off
and thought I was just extremely tired. I did my best to clean things up and headed back to bed,
but truthfully, I was scared, confused and in clear denial. My blatant disregard didn’t make any
sense.
Hours later, I awoke and things still didn’t seem right. I got up out of bed and limped to
the bathroom. I noticed the left side of my body was numb, my left leg was dragging and I could
barely use my left arm. It felt like someone unplugged the left side of my body. I looked in the
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mirror and couldn’t smile normally. The left side of my lip wouldn’t rise when my right side
did. When I tried to flare my nostrils, only the right side responded to my insistent, voluntary
command. My left side had left me.
I went out to the living room and everyone knew that something was wrong. Dawn, who
is a great nurse, and everyone else wanted to call an ambulance and were insistent I go to the ER.
However, I wouldn’t listen to them. As a nurse, and under normal circumstances, I would have
gone to the ER as soon as possible, but my brain denied me of the much-needed logic and
thought process to do so. Instead, I fought everyone on going to the hospital. I did my best to
put up a front that my left side was fine. However, Laura, Dawn and Frank were onto my game.
It was several hours later from when I first went to the bathroom and noticed something
was wrong. I was still arguing about whether or not to go to the ER. I finally gave in and
everyone agreed that Hospital J would be my best chance. We loaded up the car and headed
back to Hospital J in Philly. However, I continued to fight them before we left and the whole
way there. “I’m fine,” I kept saying, “We don’t have to go. Let’s finish our vacation.” The
event was a big blur to me. The “I’m fine” was very, very far from fine. How far? Let’s call it,
from Earth to Mars far.
Upon arrival at Hospital J, I was triaged at their ER, immediately put in for a CAT scan
and my neurologist and neurosurgeons were called. From my nursing days, I knew that due to
the long period of time that had passed, tissue plasminogen activator (tPA) treatment would be
useless.
The American Stroke Association: tPA works by dissolving the clot and improving blood flow to the part
of the brain being deprived of blood flow. If administered within 3 hours (and up to 4.5 hours in certain
eligible patients), tPA may improve the chances of recovering from a stroke. A significant number of
stroke victims don’t get to the hospital in time for tPA treatment; this is why it’s so important to identify a
stroke immediately.
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Laura and I waited in a room in the ER for the results of the
CAT scan. Finally, the on-call doctor appeared to deliver the results.
Wait for it…wait for it… BOOM! I had suffered a significant stroke
(CVA) to the right portion, the basal ganglia area, of my brain. It
affected my logical reasoning and emotions, along with my left side
motor control and movement. Not only did the stroke affect my
scheduled cranioplasty surgery date, more importantly, it would have a
definite impact on the rest my life. But how?
When arteries are clipped, they form clots. The cause is not definitive. Regardless, I had
a clot which caused a stroke. When clots form and break away, they wreak havoc at their final
destination. With an ischemic stroke, there is a high likelihood of lifelong disabilities or, worse
off, death. I was lucky enough to survive, but the diverse list of lifelong disabilities has impaired
me forever. The basal ganglia is responsible for motor control, regulation of body movement,
higher level cognitive functioning such as memory, reasoning, organizing, planning and mental
flexibility. More times than not, a stroke in this area can lead to unannounced episodes of
laughing, crying and very often depression.
Was this the beginning of the end for me? I reflected on the events of the past eight
months: in January, I suffered a Subarachnoid Hemorrhage caused by a giant, ruptured brain
aneurysm. And now in August, I just suffered an Ischemic Stroke, possibly from a clot that
formed and dislodged itself from one of the aneurysm clips inserted ten months earlier. Out of
the one hundred billion estimated brain cells that I was gifted with, I can’t begin to estimate how
many of my brain cells were killed. They are dead and no longer able to do their necessary jobs
as a result of this stroke.
The American Stroke Association: The typical patient loses 1.9 million neurons each minute in which
stroke is untreated.
The scheduled surgery for replacing my missing skull bone was put on hold, and I was
told that I would need to wear that white, oversized helmet even longer than originally planned.
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At the time, I felt that not having the cranioplasty on the scheduled date was a major bump in my
cobblestoned road to recovery. Long-term it was just a pebble. The gapping sinkholes were not
too far ahead of me.
We had a terrific time in Cape May, minus the stroke. To this day, I still love going there
and since the stroke, we’ve been back several times. I refuse to let an unfortunate occurrence at
a certain location control my destiny. I say to hell with all of that bad, superstitious stuff that
people live their life by. Frank died and then I had a stroke. In my life, the Cape May name is
associated with both of them and who cares? I like Cape May and so does Laura. “On the way
to Cape May, I fell in love with you…”
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Chapter 32: Johnny’s Getting his Skull Back
I
had the date: October 25, 2010 at Hospital J. This time was a little different, though; I had
time to sit and think about it—another brain surgery for the second time that year. I don’t
care how anyone worded it, I was going to have two brain surgeries within ten months of each
other. Think about that for a minute and let it set in… They were going to shave my head and
make another large incision and, as my brain was open to air, they would be manipulating my
precious grey matter and then reinserting my skull bone, all while carefully working around the
seven newly-inserted aneurysm clips. (It’s important to note that Hospital J was keeping my
skull plate “refrigerated.” It was regularly inspected and checked by Hospital J staff. As I
understood it, it was housed with other skull plates that were to be replaced on other patients.)
Not only did I have time to think about this second
surgery, there were aesthetic concerns, too. Because my
aneurysm was what they called a “giant” aneurysm, it was
clamped with very large clips. Two of the seven clips
slightly protrude out of my temple area about a quarter of an
inch, so the concern was if the skull plate would fully cover
the protruding clips. This wasn’t any old Lego play set we’re
talking about here boys and girls. And with my recent stroke, I was starting to think that Lady
Luck wasn’t on my side.
On Friday, October 22 th at 4:00 pm, 3 days before my scheduled surgery, we received a
call from Hospital J. We excitedly took the call, assuming we were going to be told what time to
show up at for Monday’s surgery. Wait for it....wait for it... BOOM! The call went something
like this: “Mr. Cooper, we’re calling to inform you that unfortunately we have to cancel
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surgery. We won’t be able to use your skull bone, as it’s become infected with strep.” I don’t
remember much of what was said after that and handed the phone to Laura. No shit! What the
hell was I going to do? I need my skull bone put back in and I need it now! I was frustrated,
mad and befuddled. I was angry that mine had become infected, but I just wanted them to find
another one and put it in!
As all of this was happening, we were in the process of changing our health insurance
provider and only had about three weeks before my policy changed. I didn’t know what kind of
hoops we were going to have to jump through to make surgery happen. My brain couldn’t
compute what was going on, so Laura hopped right on things and made several calls. There was
so much to be done in order to get a synthetic piece made for my surgery. She lined up the
insurance company, Hospital J neurosurgeons and nurses, the CAT scan scheduler, and probably
many others.
The CAT scan was vitally important so they could obtain the exact dimensional
measurements for the piece of my missing skull bone. From there, a specialized medical
fabrication company would have to make my new synthetic replacement skull plate. They
informed me that the new synthetic skull plate would be much more durable and stronger than
my original skull bone. We technically needed a referral before we could schedule the CAT
scan. However, when the hospital asked Laura about this, she said, “No, we don’t need a
referral,” and she was able to get the staff at Hospital J to move fast. The CAT scan was
scheduled for the following Monday (the date my surgery was supposed to occur).
I thought, This is a good thing. It’s brand new and more durable, just like my new deck
table. Things happen for a reason so stay positive, John. Both the nurse who disclosed the bad
news and Laura handled things expeditiously and got everything needed for a quick resolve. She
was nothing less than exceptional. She rocks; nurses rock!
We were told that synthetics plates can take a week to ten days to create. However,
between Laura and the Hospital J nurse, they were able to get it casted within three days! My
new replacement skull plate was created and my cranioplasty surgery date was scheduled for
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Friday, October 29 th —4 days after my original date. With only two weeks to spare before my
new health insurance policy took effect, we were back on track.
Imagine if you had part of your skull taken out. Wouldn’t you want it back? Maybe I am
deranged or just brain damaged, but a part of me wanted it. I imagine I would’ve sprayed it with
the fluorescent orange marking paint for the squirrels, glued a picture of a RED LIGHT on it,
shellacked that son-of-a-bitch, put it in a picture box frame and thrown that picture frame box in
a tote, sealed it with five rolls of duct tape and neatly kicked it into the furthest back area of my
attic and locked the door. However, even upon my numerous requests, they would not give me
my old skull bone back.
The day of surgery had finally arrived. I showered,
got dressed and looked in the mirror for the last time with the
missing twenty-five percent of my skull. I looked at myself in
disgust and also with pride because I had made it that far. I
carefully donned my big, oversized, white Corky helmet for
the last time and Laura drove us down to the hospital. They
checked me in and soon after I was put on a gurney and administered an IV with a sedative.
That was extremely helpful because I had an impending feeling of doom lurking over me. I told
Laura, my parents and my Aunt Deb (who had all come to see me through the surgery), “This is
just a walk in the park. I’ll see you guys in a few hours.” I didn’t want to appear nervous or
afraid. I wanted them to see the happy, strong-willed, Johnny’s getting his skull back guy. I was
terrified and made my best attempt to keep both them and me at rest and telling myself that
everything is going to be okay, John. I was rolled into the operating room where my
neurosurgeon was waiting for me. She smiled and put me at ease. I was then down for the
count.
I awoke in recovery and remembered seeing Laura, Dawn and Frank. I felt the obvious
pain and once again I was SBH. (Stoned by Hospital). I was never a big supporter of narcotics,
but that blanket-tey-blank drug was some good stuff, my friends. I see why people get hooked
on it. I looked up at all of them and said, “Oh my God, we have to get some of the stuff and do it
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all together. This is so cool. Ask the nurse if you can have some too, so we can all experience
this together.” I was in a euphoric, comfortable state.
This was the true Jim-Morris-from-the-Doors-in-the-desert kind of experience and I
didn’t want it to end. Deep down, I knew that it was the end of my old life and from that point
on I would have to resume working on my new life, or what people were calling my new normal.
I had a new life, but it was littered with disabilities that people could no longer see without my
Corky helmet.
“Just enjoy the ride and relax tonight, Johnny.” Ah, blanket-tey-blank drug… I received
the last dose of the good stuff and was rolled up to the neuro-ICU where I was kept under the
watchful eye of Nurse Ratchet. Every hospital has one, even the great ones. A robust wave of
pain quickly descended upon me; I needed some blanket-tey-blank drug, STAT! Wait for
it…wait for it…BOOM! “I’m sorry, we can only give you codeine because you want
neurologically intact. Anything stronger could mask other symptoms.” You’ve heard that oneliner
before, haven’t you folks? I’m back in the same hospital in the same neuro-ICU and they
have the same protocol. I knew it was going to be one hell of a painful night. If that was going
to be the case for the next few days, I thought I might as well be at home in pain.
I woke up the next morning, put my best game face on, talked to my neurosurgeon and
strongly pleaded my case for my immediate discharge, citing the higher incident rates of
nosocomial infections. She agreed. I looked great and was asymptomatic. If there were any
risks, she wouldn’t have discharged me so quickly. I was both surprised and elated for the
discharge approval.
When Laura arrived, I told her, “I’m going home right now. Let’s get ready.” She was
not as happy as I was and was extremely mad at me. She felt I needed further monitoring in case
something went wrong. I tried to sell her on the idea by saying, “Hey babe, it’s me. What could
go wrong?” She was overly concerned and not at all happy at what I had done. She had every
right to her feelings just as I had every right to think I needed to be home.
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I was given my discharge papers with instructions as to how long to leave the dressing
on, how to take care of the wounds and sutures and what to look for in case of infection. The
discharge instructions also had the same precautions from ten months earlier:
No straining
No bending over
No lifting anything over 20 pounds
Mandatory rest periods: 5 – 7 per day for at least 30 – 45 minutes each
A few days later Dawn and Frank came over and Dawn, being a nurse, had the honors of
cutting off and removing the tightly wrapped dressings around my head and the remaining gauze
over my large incision site. I had expected far more edema/swelling after surgery, but besides
my swollen head and my black and blue right eye, I looked pretty damn good! No more caved in
skull, no more helmet! Corky has left the building! For the first few days following the surgery,
I would frantically look for my helmet before getting out of bed. Helmet no more—Johnny’s got
his skull back!
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Chapter 33: Yellow Lights
No more helmet.
No more schnooks.
No more RED LIGHT’S dirty looks!
I
was blown away at what was happening. With my new, enormous scar and no helmet,
people started looking at me differently. They looked at me with compassion and their facial
expressions appeared as if they were thinking, Damn, he must’ve been in a bad car accident or
had a bad fall. Every once in a while someone would ask, “What happened to you?” and I
would gruffly respond, “You should see the other guy,” just to mess with them. It was
dumbfounding to see people’s perceptions and assumptions of me without that helmet. While
wearing the helmet, about ninety percent of the public wouldn’t approach me, yet alone ask what
happened. I was happier and started to smile more, but often thought about those individuals still
wearing helmets which brought me down a little. I knew their pain. I lived their pain.
Just a few months earlier, those RED LIGHTS stared at me as if I had leprosy. Now I
was bald with a huge scar on my skull and the same type of people were turning into YELLOW
LIGHTS. As with a yellow traffic light, I noticed that people were approaching me with more
caution and compassion. They weren’t slamming on their brakes as the RED LIGHTS had done.
I recall a few acquaintances that made the RED LIGHT to YELLOW LIGHT transition
right before my eyes. It blew me away at how shallow people could be. Don’t worry assholes, I
forgave you. Hate begets hate; it only holds me back from being a better person. I would be as
bad as them if I didn’t forgive them and move on with my life. I welcome those YELLOW
LIGHTS with open arms and looked forward to the opportunity to turn them GREEN!
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In no way, shape or form is this book meant to tell you what to do or how to live your
life. I am sharing my raw, true life experience to the best of my recollection of events and my
hope is to make anyone who reads this aware of being a RED LIGHT. I encourage you to
always show compassion to others, even if you don’t want to or think you don’t need to.
Whether you meet someone at a traffic light, a walkway, a hallway, a Mart, an elevator,
anywhere, do your best to show compassion because you never know what kind of battles they
are living!
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Chapter 34: Driving Miss Daisy Never Went Like this
S
till unable to drive, I was chauffeured around three times a
week, back and forth to my therapy sessions. But unlike
Miss Daisy, I sat in the front seat of the cars! I was fortunate
enough to have transportation and was able to switch rehab
facilities to one closer to home. I continued my speech,
occupational and physical therapy at Hospital D, which
happened to be the first hospital I went to with my bad
headache. My brothers at the Ancient order of Irishmen had
supported me from day one and continued to do so by driving me to and from therapy. Matt had
an oversized, framed get-well poster made where my brothers wrote their own messages on it.
Matt presented it to me after I awoke from my coma in Hospital J.
My brothers provided roundtrip transportation to my much needed therapy. I didn’t like
being chauffeured around, but I was very thankful for their support. When I was first
hospitalized, they came over and dropped off meals for my family and made sure my walkways
and driveway were shoveled during that two-plus-foot snow storm. They made so many meals
for my family that someone had to bring over an extra freezer to store it all in my garage. Their
bountiful support was mind blowing. Do you see how lucky I am? They’ve been there for me
during the good years and the not-so-good years. And no matter what, they’ve stood by me!
One particular therapy afternoon, I came out of
Hospital D where I had just had a sub-par therapy session.
It was just plain, old crappy. I climbed up into Jack O’s
big, red truck and started dropping F-bombs and cursing in
pure frustration because I believed my progress wasn’t
going as well as I thought it should. Startled, he looked
over at me and slowly pointed to the backseat of his truck.
BOOM! His two-year-old grandson was sitting in a car seat right behind me. The little boy
stared me dead straight in the eyes and looked at his grandfather as if to say, Hey Pop-Pop, who
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the **** is this guy? In all the times that Jack O had taken me to therapy, that cute little bundle
of joy was never back there before. Well, that day he was. I couldn’t apologize enough. I
thought that one of my repetitive, ranting curse words would be one of his grandson’s new
favorite words to say. I was mortified. Jack laughed and confidently reassured me that
everything was okay. “Don’t worry about it, Coop.”
Jack, Denny, Jim, Jerry, Donny and Matt are the type of people that others strive to be. I
wasn’t the most stellar person when it came to remembering people’s names before the
aneurysm, and after the aneurysm this deficit was amplified tenfold. There are so many others
who helped my family and I during this time and I, unfortunately, can’t recall all of their names.
However, unlike my angel’s face, I do know all of their faces. My Ancient Order of Irishmen
brothers continued their regular rotation of driving Miss Daisy to therapy, and I always checked
the back seat before opening my mouth.
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Chapter 35: DABDA: Denial, Anger, Bargaining, Depression, Acceptance
A
little over a year had passed since my aneurysm burst. I was continuing with therapy,
however I did not see much improvement. The constant repetition of, “If treated like a
race, you must treat this like a marathon, not a sprint. Improvements will be seen over longer
periods of time, not shorter periods of time,” was getting old. I couldn’t see it and I never gave
myself any credit for things that did improve. I didn’t cut myself any slack and when I did build
up a small amount of confidence, someone would inevitably say, “Wow, I haven’t seen you in a
while, Coop—you look great! Are you back to work yet?” I would shamefully drop my head
and reply, “No.” Others would take it a step further and say, “Well, you look great! So, why
aren’t you back to work yet?” I wanted to punch them in the face and knock them out cold
which is the complete opposite of how I live my life. At first I felt as if I was over explaining
my brain injury. Then I felt as if I was making excuses for me not being back to work. They
weren’t excuses. They were NOT excuses.
After a while of this question being asked, I began to rudely answer, “This isn’t a frigging
broken leg I have here. Why don’t you do some research on ruptured brain aneurysms, strokes
and the multiple complications and disabilities that people like me deal with on a daily basis?”
That response didn’t help them or me. Some people just couldn’t get it. When they challenged
my answers, I turned into a complete jerk. I felt they weren’t asking me; I felt they were
challenging me. When that occurred, I remember trying to make them feel like an ass because
they were taking the conversation further than then they should have. Ignorance was not an
excuse, nor was me being rude to them. It was all new to me and I didn’t know how to handle it.
Simple partial seizures were occurring more frequently and we couldn’t get the right dose
of medication to straighten them out. After each seizure, I would be wiped out for two or three
days. I was going in circles like a merry-go-round spinning a hundred revolutions a minute. I
was doing my best to hold on, but I crashed and fell apart fell apart. I slowly went back to
smoking and having an occasional drink here and there and, in a flash, I was smoking and
drinking heavily. I realized the seriousness of smoking and drinking as heavily as I was, so I
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started a prescription medication to help me quit smoking and was also prescribed a new antiseizure
medication at the same time.
We have all seen and heard the medication commercials where they state, “People taking
this medication may experience suicidal thoughts. If you experience this, stop taking this
medication immediately and notify your doctor.” A big part of me always thought that was a
bunch of bull. I thought it was just another disclosure to protect the pharmaceutical companies
in case, God forbid, something would happen at the hands of one of the many XYZ
pharmaceutical conglomerates. I’m not knocking them; most of the medications have saved my
life. But a small piece of me wants to knock them because, unbeknownst to me, both the
smoking cessation medication and my new anti-seizure medication had identical side effects
singularly. When the two were put together along with my brain injury, BOOM! All crap hit the
fan. The two medications were at war with themselves and with me and my damaged brain and I
was on losing end. That volatile mixture had me devising plans that I would never imagined
before. These thoughts weren’t good thoughts. I just wanted out of this world. I choose not to
describe my plans but, to be fair, it wasn’t a situation where I would have involved a cop to help
me carry out my mission. I wasn’t going to ruin their life because I wanted to end mine.
You might be asking, You’ve come so far. How could you quit now, Coop? What about
everyone around you? What about your daughters and wife? You may be thinking that I was
being a selfish bastard. I don’t know what you are thinking as you’re reading this, and I can only
convey to you that I was living in a dark, painful and fiery mess of Hell. It was the type of Hell
which I wouldn’t have put the most despicable person from death row in. The only people that
bore witness to my heartbreaking, downward spiraling pain, were my wife, mother-in-law and
her husband because they were there with me on a daily basis. Many others thought I looked
great therefore I must be doing well and should be back to work. Not even close!
I needed help and I didn’t like asking for help so I tried my best to bottle it up and hide
my pain from everyone, including myself. That didn’t work out too well. I had to go
somewhere before I took that step—the step that no one returns from and there’s no going back.
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Chapter 36: “Does your cell phone work? Can I borrow it?”
L
aura was instructed by my doctors to take me to a local clinic for an immediate evaluation.
We checked in to Clinic H and sat in the waiting room with other families who were
waiting with their loved ones to be seen. Out of nowhere the dead-ringer twin sister of Kramer
from the Seinfeld show walked in. Her hair was all sorts of disheveled. She clumsily glided into
the room talking to herself as she scanned the room. Then she spoke; she asked a man across
from us, “Does your cell phone work? Can I borrow it?”
His face said, No, as if in some strange way he knew it wasn’t a good decision; however,
he hesitantly and slowly handed his phone over to her. She quickly jolted and darted out of the
room like the squirrels being released from the cages. If there were ever such a thing as a slow
motion robbery, we had just bared witness to it. I’m sure we all assumed she was going to make
a call but she returned about five minutes later with no phone in site. “Where is my phone?” the
man asked. She didn’t answer; she just looked at him as if it was the first time she had ever set
eyes on him.
Perplexed and in utter disbelief, we all sat looking at each other but mostly had our eyes
on him. He looked pissed off but kept his cool. I give that guy some much deserved credit. He
went out and returned five minutes later with his phone, shaking his head. “She gave it to
somebody else.” All of us were shaking our heads, smirking and quietly giggling and wondering
what the Hell had just happened. Holding back and trying my best not burst into a loud
boisterous laughter, I could barely hold it in. Little did I know that that moment would be the
last time I would laugh or even feel the urge to for quite some time.
It was my turn and I was evaluated and admitted for treatment. After being evaluated, a
doctor prescribed a new anti-depressant medication which he wanted me to start immediately. I
was instructed that I would need to stay between three and five days initially so they could
evaluate the effectiveness of my newly prescribed medication. I was then taken back to a wing,
similar to a hospital setting, and was immediately introduced to my roommate. I should have
called him my cellmate because this facility was more like a jail. We remained in constant
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lockdown mode while confined to our rooms between meals, smoke breaks and open roomed
therapy sessions. My roommate was a gentle giant with an innocent and sincere smile, but he
carried with him a deep, dark, brown set of troubled eyes. For some reason, I felt I could trust
him. The staff checked my bag for contraband and Laura was asked to leave. Visiting hours and
phone call times were strictly enforced. Their rules were about as flexible as a solid six-inchthick
titanium rod. They didn’t bend unless you had a laser on you. My last words to Laura
before she left that night were, “I love you. Now get me the Hell out of here tomorrow! I’m not
playing around. Make it happen. I love you.”
After settling in my room, I strolled down to the common area for dinner and noticed a
familiar face sitting at another table. It was Kramer’s twin sister—the cell phone lady! What the
Hell am I doing here on this wing with her? It was obvious that we had completely different
diagnoses. My quick nursing assessment told me that she was schizophrenic. If we were in
Disney, I would have been a sad Mickey Mouse; she would have definitely been the gluesniffing
Goofy. Okay, John, don’t judge. Let’s see how all of this plays out. Did they just throw
everybody in to the same fishbowl here, I wondered? My guess was that’s exactly what they did.
I’m no mechanic, but if you are putting something together and there are more nuts than screws,
you’re going to have a big problem. I was screwed and they were nuts. Many of you may think
I am being a little overly judgeMENTAL. If you were there, you would undoubtedly take my
side.
In the dining area, there was a cut out section in the kitchen wall area which was
connected to an area where patients could obtain extra food between the scheduled mealtimes.
As I walked into the dining area, a patient ran in out of nowhere, dove in and flipped over the
wall and into the kitchen area. He quickly devoured two bowls of Fruit Loops and a half loaf of
bread as if he hadn’t eaten in a week! His caveman feasting episode lasted less than ten minutes.
When he finished devouring his meal, he exited just as quickly as his Oscar-nominated entrance.
He was like a seagull on the boardwalk in Wildwood, NJ, diving in for a dropped French fry then
quickly flying away and crapping on everyone below. Like Flash Gordon, he was in and out
before I could fully comprehend what the Hell had just happened. A multitude of questions
flooded my mind: Was he locked up in a secured, secluded room like the gimp from the Pulp
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Fiction movie? Did they only let him out to eat? What the Hell is going on in here? All I knew
was that I didn’t like this place.
The days that followed were pure Hell. The only time patients were allowed outside was
when the smokers went out. They had designated times for smoke breaks and everyone kept a
vigilant eye on the clock while waiting for a so-called professional staff member to holler,
“Smoke time!” I went out and smoked as many cigarettes as possible within the allotted twelve
to fifteen minute “smoke time” break. The staff, who I believe were fulfilling their own nicotine
needs, were even out there. I smoked for comfort measures as well as the ability to get out of
that Hellhole, if just for a few fleeting moments. I was the first one out and the last one in as
they slammed the double locked door shut behind me.
I found it ironic and counterproductive considering that the side effect of the one
medications I took to help me stop smoking was the partial catalyst for my admission to Clinic
H. Those drug interactions, along with my insidious fully grown depression seeds upon
admission, were at full bloom. They were weeds that had taken over my life’s garden.
Cigarettes were a hot commodity; however, I didn’t have anything to negotiate with
besides my good looks and charm. I’m joking, but maybe I’m not. Laura and other friends
refused to bring cigarettes in for me. I understood their concern after having the aneurysm and
subsequent stroke but that still didn’t stop me from getting cigarettes. At one of those smoke
breaks, I noticed the exterior barb wired perimeter fence facing a rear parking lot where workers
parked. There were no surveillance cameras in that area, as they were mainly directed at
emergency exits and entrance points. I devised a surreptitious and manipulative plan and
convinced several patients that I would come back after being discharged and repay them tenfold
for letting me bum smokes from them. I told them that I would park my car, signal to them and
throw their new packs and cartons of cigarettes over the fence during one of the many designated
smoke break times. In my mind, it was a well thought out plan; like something out of Hogan’s
Heroes. My Pop-Pop Cooper would have been proud of me. Mission accomplished! I had an
unlimited supply of cigarettes for the remainder of my stay. Now, let’s get back to Hell.
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On the second or third night, it was time for the regimented, “Lights out and bed check.”
I couldn’t sleep so my roommate and I quietly talked. Quiet like when I was a kid at a sleepover
party and the parents told us it was time to get to bed. The conversation slowly led up to why we
were there. He threw a debilitating zinger of a story at me about his childhood and growing up
in Mexico. I slowly started pulling the sheets upwards towards my eyes. The incomprehensible
description of his horrific battering, beating, and abusive childhood was almost impossible to
take in. I couldn’t believe that another human being would ever treat someone like that! I
cannot write about all of the stories and graphic details, but I shall disclose one story in
particular. After watching his mother get beat to a pulp, his father moved onto him. His hands
had been tied and after beating him senseless, he was locked in a dark room for days where his
only so-called hydration and nourishment were self produced in a bucket (#1 and #2). His
father’s actions would go against every Geneva Convention Rule established for holding a
prisoner. His father made Hitler look like the Pope.
I was brought to tears and felt a horrifically sad and inconsolable pain for him. I tried my
best not to let him hear my quiet whimper as we dozed off to sleep. I couldn’t believe what he
had endured and suffered by the hands of his own father. Crying myself to sleep that night was
not comparable to when I cried when I didn’t get the opportunity to race Apollo Ono. That night
was real; it wasn’t ICU delirium. I won’t write it, but to properly close off this chapter of the
story, I wanted to write the F word in caps a hundred times over. This, along with his other
horrific stories are burned into my brain and soul—permanently. I will never forget him or his
stories.
The next morning, he and I headed down to the dining area for breakfast. A female
patient was attempting to pick me up and lure me into her room for some morning sexual
healing. I confidently but respectfully denied her request. Later that day, she flipped and
freaked out. She cleared off all of the tables with her clenched fists and screamed things that
didn’t make sense. She proceeded to punch patients and staff members in the face and began to
slowly move closer and closer to me. Was I next because I had denied her earlier morning
sexual healing request? I quickly recalled that I could not get hit on my head, especially the right
side of my head which was facing her. The two aneurysm clips that protrude out from my right
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temple by about a quarter of an inch are deeply set into my brain. I cannot bang or get hit in that
area because I could suffer further brain damage or die. Yeah, that’s all I needed.
The staff was utterly useless against her flailing arms and her Bruce-Lee-Kung-Fu
moves. My roommate knew about my head from our nighttime discussions and was keeping a
watchful eye on me as she slowly inched closer. The Philly-street-smart-kid in me was
temporarily paralyzed. I sat there eating a mouthful of Fruit Loops (quite ironic, Fruit Loops).
She was closer than I wanted her to be. He slowly moved up behind her and gently gave a strong
bear hug while lifting her up off of the ground. The staff finally stepped in and aggressively
administered some sedative shots. It was like something out of a movie—a very bad movie. She
quickly succumbed to the medicinal effects of the shots and was dragged back to her room.
This guy was a gentle giant. I was glad that we were roommates, but even more so, I was
glad that we got along and he was on my side, constantly watching my six, looking out for me.
He didn’t smoke, but he joined me outside during the smoke breaks. One smoke break, a patient
was aggressively moving towards us. I told him, “Looks like trouble may be brewing.” He
turned around, looked at the patient dead in the eyes with an aggressive stance and that no good,
slimy bastard quickly backed away and slithered into a different part of the smoking area.
Maybe that patient saw that I was different and wanted to take advantage of me? Maybe he
wanted me to be a part of his deranged smoking clique? Who knows; all I know is I had my
giant, Mexican bodyguard, my roommate, the gentle giant with the innocent and sincere smile.
The increase in the anti-depressant medication was showing a dramatic improvement so I
thought, Let’s get the Hell out of here! Each time I was permitted to talk to Laura, I told her the
same: “Get me the Hell out of here. Get me the Hell out of here, now!” I felt like Gene Wilder
in Young Frankenstein when he went into the locked chamber to calm down his Frankenstein
creation. The doctor wanted me in for a few more days of in-patient monitoring but thanks to
Laura, she convinced him that she could do this at home. If she didn’t press the issue, I would
have gone crazy in that place. The following day my discharge orders were put together and I
started packing up my bag. I had a few magazines which Laura had brought in for me. I handed
them over to my roommate and you would’ve thought I gave him $1,000. He acted as if he
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didn’t deserve them. I shook his hand, gave him a great, big, strong hug and walked out of there.
I was walking like one of those speed walkers down on Kelly Drive in Philly who look
absolutely ridiculous. (Why don’t they just jog or run? What’s the point of it?) I was out of
there!
I think about my roommate frequently and I pray for him often. I pray that he has found
a healthier, more supportive environment to live in. As for the packs of cigarettes by the fence,
no way in Hell, did I go back! That was one time in my life I didn’t regret going back on my
word, but I would have definitively gone back if they were for my roommate, the gentle giant.
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Chapter 37: Let’s Pause for Station Identification
I
was mortified for what I had almost done. More importantly, I was ashamed for what I had
put Laura through. I needed to pull myself up from those ashes and change the flow of my
unintentional, self-inflicted, turbulent tides. You may see by now, I wasn’t big on asking others
for help, but there was no way in Hell I was going back there, so I started asking.
We now pause for a brief message about depression:
Since depression is a non-contagious illness, society often gives this disease less
recognition than it deserves. For people who have never suffered from depression, I now realize
it’s difficult for them to understand. Some may view what I went through as being a sign of
weakness and that my lack of energy and loss of ambition were me just being lazy; however, a
person with depression cannot control these behaviors. Those words were not in my vocabulary!
Depression is a treatable disease.
My case isn’t much different from most people with depression, especially after a brain
injury. Even my rehab psychologist didn’t identify my depression. To his defense, I was not one
hundred percent forthcoming during our sessions, most likely because of my pride or the damage
to the basal ganglia area of my brain which controls these emotions. More than likely it was my
pride. Even to my own psychologist I didn’t want to show any signs of weakness. Adding to it
was the adverse reaction of the two medications I was taking. I have since learned to
immediately inform my physicians of any medication changes. Case in point, my medications
had adversely affected each other causing my ferocious, downward spiral. I can’t entirely blame
the medications but I do know the underlining depression mixed with those two medications
almost caused me to take an end to my life. Even after figuring the out the medication aspect of
the depression, my mental health still needed resuscitation.
I did some research about depression and found that in the US alone, it’s estimated that
one of ten people are afflicted with some varying degree of depression. The 2015 U.S. census
report states that are approximately 320,740,000 people living in the US, making it ten percent,
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or approximately 32,074,000 people, who are depressed in one way or another. I’m no rocket
scientist, but this sounds like an epidemic! Which is another term that lends itself to further
explanation.
Something is considered an epidemic only if deaths are caused by a communicably
spreadable disease such as, the flu or Ebola. When the deaths exceed 7.7% of the afflicted
population, it is classified as an epidemic by the CDC. So technically I can’t use the word
epidemic—how about sizable?
When people succumb to depression, again, a treatable illness, most are ashamed. Why
does main stream society look at depression any differently than a giant, ruptured brain
aneurysm or an amputated leg? I think that most of us are selective with our compassion, similar
to our prejudices. In a better world, the compassion and care for someone suffering should not
be determined by their diagnosis, just as I believe no one should be judged by their race, color,
religion or sexual preference.
Unfortunately, there are no definitive solutions for this, but understanding and learning
more about others could be a great starting point. Hell, we have numerous research options
available to us and I propose we start using our phones, tablets and computers to educate
ourselves; so I’m calling you out! Instead of over posting on social media about paying too
much for a meal or how your family pet is smarter than everyone else’s, why not make a plan to
invest seven minutes a day to research something you have no knowledge on? I challenge you to
incorporate this into your daily To Do list.
I would also like to see some basic social stigmas change, such as society breaking the
habit of loosly using exaggerated psychiatric terms and making ASS-umptions. It may sound
like a very large task, but I promise you it’s not. I’m not going to write out an all-encompassing
plan for this, but I can suggest how to start: Use the words mental health versus shrink or nuts.
During my physical, occupational and speech therapies, my goals were accomplished
over longer periods of time with a team approach from the therapists. I have learned how to
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better adapt to my acquired psychological challenges and can proudly say that I’m seeing two,
not one, exceptional mental health doctors. One helps me with my high-level cognitive deficits
while the other is helping me with my anxiety, depression and increasing my mental flexibility to
improve my views, attitudes and reactions to others.
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Chapter 38: “Oh Johnny Boy…”
S
ummer flew by and 2011 was quickly approaching its end. Since I had several seizures
from my ruptured brain aneurysm, as well as the subsequent stroke, I was earnestly
searching for a new neurologist closer to home to help battle those insidious attacks on my brain.
Finding an exceptional neurologist is easier said than done. We didn’t want a good neurologist,
we needed the best. We finally found a terrific, compassionate, knowledgeable and
understanding neurologist named Dr. C. He is still my doctor and has been the most
instrumental physician in my recovery.
On Halloween night, I walked the neighborhood with my girls and the neighbors out
back, the ones that took M and I to that first mass. No one knew what I had gone through that
summer and I wasn’t going to start flapping my chops about it. I was not comfortable in
divulging any details and, quite frankly, I was still ashamed of myself. It wasn’t until I decided
to undergo the fulfilling task of writing this book that I felt confident enough to divulge my
story. Most of my close acquaintances and family members didn’t know the full extent of the
Hell that I/we were living in until they read the unedited version of this book.
Thanksgiving Day dinner, 2011 at Aunt Carolyn’s and Uncle Wayne’s home had finally
arrived. Aunt Carolyn’s dinner makes Emeril Lagasse look like a first day burger flipper at a fast
food joint. We look forward to this day all year long.
Upon arrival, in good standing tradition, the men retreat downstairs with a frosty beer in
hand, talk guy stuff and watch football. We eagerly await the summoning call from the ladies
that the feast is ready. This year was no different. As we sat down at our assigned seats and
reverently listened to Aunt Carolyn’s sometimes-long-but-oh-so-meaningful prayer, I waited for
the let’s dig in signal from her. After the “N” in Amen was uttered, the Viking mind-set stepped
in and we would quickly load up our plates and pass the platters to the right. However, this year
there was a pause after the prayer. Aunt Carolyn said, “Not yet.” Moans from the hungry,
Thanksgiving day crowd went something like, “Why? C’mon! It’s all right here in front of us.
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What’s the holdup?” We were ready to dive head first into that beautiful medley of culinary
perfection.
BOOM! Aunt Carolyn had put together a little song and sang it at the table. Instead of
“Oh Danny Boy,” it was “Oh Johnny Boy!”
I was blown away and I cried like a child; then ate like a stevedore! What is a
Stevedore? My mother-in-law, Grace, throws words like this around all of the time, expecting
everyone to know what the Hell they mean or what they’re in reference to. When we all look at
her befuddled, she slowly explains them as we look at her with one eyebrow up, not knowing if
it’s true or if she’s pulling our leg. She’s got one up in our family for an expansive vocabulary,
and we all love her to pieces. Dear readers, if you don’t know what stevedore is in reference to,
ask around. I want you to feel my pain.
Falling back a chapter, this dinner and song confirmed my station identification; I knew
where I was and realized where I needed to be.
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Chapter 39: 18 Month Plateau: “That is where you will probably be for the
rest your life.”
F
rom the first day of awakening from the coma and the eighteen following months, Laura
and I were told, “You should see a vast improvement within the first eighteen months and
then you will plateau and flatten out. That is where you will probably be for the rest your life.”
Was I expected to give up after eighteen months and accept the statistics? I was not fond of
statistics but considering my prior experiences, I developed a new found respect for them.
The end of that eighteen-month plateau period had met its deadline. Should I just come
to terms with how I was and accept it? Accept the notion that any future attempts for progress
would be futile? There was no way in Hell that statistic was going to be applied to or associated
with my name!
When the world says “give up”
Hope whispers, “Try one more time.”
(Ariel, Disney’s The Little Mermaid)
That statement was ingrained into my new, not-so-improved brain. A large section of my
old brain refused to accept it. I just needed to convince my new brain to come along for the ride.
Statistics don’t lie, right? I was trying to look into that magical glass ball for some much needed
answers, so I engrossed myself in research and searched for similar cases to find any direct
correlations of my case to others. I wanted to better prepare myself for the post-eighteen-month
future deadline. One particular article stood out and although I can’t remember where the article
originated from (thanks to my brain injury), it mentioned: after a person suffers a (SAH), a
Subarachnoid Hemorrhage, there is a 50% chance of a stroke within five years. I already had a
subarachnoid hemorrhage caused by my giant, ruptured brain aneurysm or hemorrhagic stroke.
I’d already had an ischemic stroke, which is when a blood clot blocks part of a vessel in the
brain. So, what was the starting point to begin from for my eighteen-month plateau theory? The
first stroke or the second one?
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When I was about ten years old, my father’s best friend, Mr. M, had a massive stroke.
We frequently visited him at Peat Rehab which, ironically, was where I received my
rehabilitation treatment. It was under a different name at the time, but the same exact facility
(although I don’t recall hearing the “HOOOOOOGEEEEEY man” back then). He had an
ischemic stroke which reduced his mobility, speech and quality of living by about eighty percent.
For over twenty-five years, he kept chugging through life and continued to be a great father and
an important contributor to the church in my old neighborhood before passing away. With my
continued therapy, I still think of him as I pass the outside windowsill seating area where I used
to quietly sit wait to leave. As a young boy, I was scared and now even more scared attending
my own therapy. While his strength gave me the courage to push forward, I was fearful of my
future, at least from my researched findings.
That doomsday cloud followed me daily. After the aneurysm, BOOM!, I became a part
of that statistic and had another stroke. I was extremely fortunate that my second stroke did not
affect me as gravely as Mr. M. Even though I was dealing with several complications from the
second stroke, I knew deep down inside that I had just gotten another free pass. It was like
catching two balls at a Phillies game. The odds that I would survive and be able to live the
quality of life I was living was astronomically against me, but somehow I lucked out.
I sincerely believe that Jesus on the cross performed yet another amazing miracle. I am
left with several debilitating deficits, but I’m here, I’m not giving up and I won’t stop believing!
I believe he saved me and I must do something bigger than myself to show my gratitude. I
wasn’t spared, I was saved. I believe!
A refection of my ability to fight the eighteen-month plateau
theory could never be seen more clearly than on this sign. I am more
fortunate than most; hence, it’s why I’m sharing my memoirs. I
continue to fight and strongly believe that things will get better for
me, while also refusing to believe in that eighteen-month plateau
theory: “This is where you will probably be for the rest your life.” I
have successfully surpassed that period. If you are in a tough bind,
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don’t give in or give up. Learn to ask for help and don’t stop believing in yourself. I have
surmised that when you stop believing in yourself, others will follow suit and stop believing in
you as well.
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Chapter 40: Disney Cruise: Why is Daddy Crying?
A
fter my aneurysm, my first plane ride was back to Walt Disney World of all places. We
were going down to visit my mom and dad and hit the parks. The big surprise was that
they also surprised us by scheduling a three-day Disney Cruise on the brand new Disney ship,
the Disney Dream.
The takeoff and flight went fine; then came the “ping” upon our decent into Orlando. I
felt sick to my stomach and my heart began racing as I stared at the carpeted bulkhead wall with
the Westwest logo, once again. I was thinking that just a mere twelve months earlier, that “ping”
was the sound I would associate with my life-changing event.
As a side note, this was just one of the instances, the “ping” on an airplane, that
contributed to my Post Traumatic Stress Disorder (PTSD), and for which I sought treatment.
Another instance is when I feel like I’m back in the ICU on the ventilator after awaking from my
coma. Although I feel I have a better handle on my PTSD, it continues to haunt me.
Laura held my hand and asked me, “Are you alright?” My lips said, “Yes,” but I felt like
I was about to burst at the seams and fall apart. Just land the plane. Why is it taking so long?
Land this damn plane already! At that moment, I hated that plane. We touched down, gathered
our carry-on luggage and made our way off the plane. The last time I did this I was running off
the walkway like Carl Lewis urgently seeking a bathroom. I exhaled an enormous sigh of relief
and we went on our way to my parent’s house.
The next day, we embarked onto the Disney Dream with high expectations. We were
hoping that this would be our first vacation without something crummy happening to me. Our
last Disney vacation I had the giant, ruptured brain aneurysm. The trip to Cape May resulted in a
devastating ischemic stroke. Christ Almighty, no more; please let things settle down.
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Along with my acquired brain injuries, quirky and
annoying episodes started to occur. Uncontrollable, emotional
episodes of crying and laughter would happen to me. It first
surfaced during this trip while watching the Beauty and the
Beast show at Disney’s Hollywood Studios. There was a
seven- or eight-year-old handicapped girl sitting across from
me. Her voice screeched with happiness and excitement at the show as her arms went flailing
around (it looked like she was having a seizure, but she wasn’t). I looked at her with
compassion, sorrow and understanding. Many others looked at her and her parents like RED
LIGHTS. I wanted to confront them, but I couldn’t during the show.
BOOM! The singing on stage mixed with my emotions for her and her family brought
me into a burst of tears; the kind where your lips are pursed and a big explosion of air
unexplainably shoots out. Some people looked at me. My daughters asked Laura, “Why is
Daddy crying?” She gave them the simple explanation of, “Daddy just gets more emotional
now,” which they seemed to accept.
A few weeks later I saw a commercial about Pseudo Bulbar Affect (PBA). The
commercial went on to explain how certain people may experience involuntary and sometimes
uncontrollable episodes of laughter or crying after suffering a stroke or brain injury. I have
identified certain songs being one of my major triggers for my crying episodes. I believe it’s
because my family constantly played music while I was in my coma. Or, perhaps, I associate
certain songs with happier moments before the aneurysm and stroke. Or, it’s just the irreversible
brain damage. All I know is that I look like a blubbering idiot when it happens.
The National Anthem is another song that brings me to tears, as Veterans are asked to
stand and salute at sporting events. I proudly stand at attention saluting our flag during the
anthem and hope the outburst doesn’t occur, but it always does. I can’t miss the anthem. I
believe that if I miss it before the game, I should just go home. It’s not worth watching the game
without honoring our flag first; I’ve always felt that way. I can’t even sing one of my favorite
songs anymore: Frank Sinatra’s “That’s Life,” without bursting into tears. It even happens at my
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daughters’ school events or when we attend a play or a show. M now jokingly looks over at me
when an emotional part of a movie comes up. She humorously awaits my inevitable whimpering
crying episode.
As for the laughing episodes, it’s hilarious. I was given a new hearty, bellowing and
sometimes screechy new laugh with this PBA. My new laugh sounds like I should be in the cast
in the movie Revenge of The Nerds. The good news is that it seems to be contagious. I think
most people are laughing at my new laugh versus what we were laughing at in the first place.
Even if it’s at my own expense, I enjoy making others laugh and I welcome these episodes
without any regards to my pride, but I haven’t accepted the crying episodes yet.
While in Disney’s EPCOT, I went on the ride, Mission
Space. It was a phenomenal experience for me! Laura,
however, was not happy that I had gone on that ride, let alone
without her. A month after our Disney trip, I had a follow up
appointment with one of my neurosurgeons who revisited the
list of activities I could and could not do. No straining, no
lifting over twenty-five pounds, no contact sports, refrain from
all activities that could cause me to inadvertently bang my head, and by all means necessary,
protect the right side of my head. Laura asked about rides and told her about my Mission Space
escapade. The doctor emphatically stated, “You may only go on rides designated for children up
to four years old!” The protruding two out of the seven aneurysm clips must be protected at all
times. If hit hard enough, it could be BOOM!, lights out for Johnny.
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Chapter 41: SSDI
I
have to do what? Apply for Social Security Disability Insurance? I needed government
assistance? I didn’t want any part of it, but it was a necessary evil. I was mortified,
humiliated and had no sense of self-worth. “Now I have to rely on something other than myself,
to provide for my family?” I felt that it was evil. Evil is a powerful word. I use the word evil
because I felt like I was being pushed back into that eighteen-month plateau theory corner and
told to just give up and take a handout from the government. My pride was slowly being ripped
from my tightly-gripped hands and ever-so-fragile soul. I was just going to be a governmentissued-disabled-check-collector.
I was just going to be a number, another statistic, and I am not
fond of statistics.
After a lot of research on SSDI, we discovered that historically, the first application is
almost always denied, as it was for me. Upon receiving the denial notification, I became enraged
with such a deep-seeded anger, while still deeming it evil. “Do they think I’m faking things
here?” I felt like I was back in the scenario, when people asked me, “Are you back to work yet?”
However, many months later, the second application was reviewed and a court date was
scheduled for the review of my case.
Unfortunately and fortunately I was approved. My friends, Billy, Matt and Frank, drilled
into me that the whole Social Security Disability Insurance program was established for someone
like me. They continually reminded me that I worked hard my whole life and have paid into it.
It was hard for me to accept that my significant brain injury now kept me from working, but they
consistently told me to “just go with the flow.” So, there you have it. I’m still not proud, but
have since resigned to the fact that it is needed. I am extremely thankful that I was approved, but
I still have problems with being on SSDI. My long-term goal is to get off government
assistance, find a new career and get on with my new work life—when I am ready and capable of
doing so.
The looming question in my mind was (and still is), When will I be able to go back to
work? Hell, it seems that if I am capable enough to write a book, I should be back to work,
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right? Wrong. My days vary: I can have two consecutive good days, then, BOOM!, I’m wiped
out for the next two or three days. I still continue to need several rest periods throughout the
day. I do my best to actually shut down and rest and to keep it on a routine schedule but between
doctor appointments and life itself, it’s sometimes impossible to rest when I want or when I need
to. Most of my physicians are forty-five to sixty minutes away. The drive down, the waiting,
seeing the doctor, relaying information to them, taking in what they tell me and then driving back
home can sometimes take three to four hours per visit. I am not so much physically tired as my
brain just doesn’t want to be there for me and my cognitive abilities become severely affected.
And, as I said, when I don’t rest, I pay for it with lack focus, decreased energy and the inability
to function and complete the simplest of tasks. Without rest periods, I am like a big blob of Jell-
O with two legs aimlessly walking around and bumping into walls. In a nutshell, when I don’t
rest, it’s as if my brain were a car battery, broken down on a back country road with nobody
driving past me for hours to help.
It’s taken a while for me to come to terms with my new life and realize that there is only
so much I can do. Life isn’t routine for me anymore and things fall apart right before my own
eyes. It frustrates the Hell out of me, but I am working with my mental health professionals and
other doctors on ways to improve this. I, along with some help from my brain, am doing the best
I can. I am feeling less helpless and more hopeful and optimistic—I won’t stop believing! I am
not a victim that was merely spared; I was saved and I will continue to fight as a survivor for as
long as I am here on this big, blue and green globe called Earth. I have to because I ain’t
quitting!
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Chapter 42: Aneurysm Support Group
I
was happy to learn that Hospital J had a monthly brain aneurysm support group meeting.
Even though it was about an hour ride from my home, I wanted to be part of a group of people
that understood what I was going through. I drove the hour-long ride down to Philly and
attended my first meeting. It was much like the movie version of an Alcoholics Anonymous
meeting. It quickly became my turn. “Hi, everyone. My name is John. It’s been twenty-four
months since my last aneurysm. I had a giant forty millimeter by fifty millimeter right, middle,
cerebral artery (MCA) ruptured brain aneurysm in late January of 2010. Dr. Osen performed a
craniotomy, repaired the ruptured vessel with seven large MRI compatible clips. I was in a
medically-induced coma and suffered vasospasms. About eight months following that, I suffered
a stroke to my right basal ganglia area. I am a Taurus and I like poetry, sunsets and long walks
on the beach.”
I received baffled looks and laughs which is what I was shooting for. I wanted people to
find some sort of humor in our survival. Survival? Up to that point, I was living as a victim and
allowed the aneurysm to define me. Why Me? Why Me? Why Me? A switch turned on and I
started to strongly believe that I was saved for some reason. I had to choose one or the other. If
I was merely spared, I would continue living in the hellish, bubbled life as a victim. If I was
saved, I would be a survivor. Thankfully, Jesus on the cross saved me and I am a survivor.
Every once in a while, Jill, the coordinator, would invite different disciplines of the
medical staff to our monthly meetings. They provided information from their vast array of
experience and specialties in dealing with brain aneurysms. Jill is a truly dedicated nurse and a
very special person. Did I mention nurses rock?! At one particular meeting, a neurosurgical
nurse was the guest. She confidently answered most of our questions, but also said something
which left me upset, perplexed, as well as satisfied. She said, “A neurosurgeon once told me that
since the time of cavemen, our beautiful complex brains have always been encapsulated and
protected by the hard protective cranium/skull. Once it is opened up to air and manipulated
during surgery, things are changed forever and the patient will never be the same as they were
once before.” She also mentioned that “it is worsened if the patient had a brain bleed or SAH,
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because once blood hits brain tissues, it’s a whole different ball game. Blood is actually very
caustic, not while it’s contained within an artery or vein, but, when a rupture occurs and blood
surrounds brain tissue, it can cause further, irreversible damage.”
It was the most powerful and simplistic explanation I had heard to that point.
Individuals cannot be thoroughly evaluated for any particular baseline figures before a rupture
occurs; so no one can thoroughly identify all of their changes. It’s impossible. Why? If an
individual is at the verge of rupturing, or has already ruptured, they would most likely be in
surgery or they would die before they could even be tested. There’s no time to waste because
it’s a life or death scenario. For me, most changes are noticed by my family and friends. I notice
them, but still refuse to thoroughly accept them. I am an anarchist to my injured-governing
brain.
If you had asked me during the first eighteen to twenty-four months following my giant,
ruptured brain aneurysm if I would do it all again, I would have definitely opted out and not
gotten the surgery. I was living in Hell and didn’t know how to cope with my new normal
lifestyle. I agreed to the surgery because of the excruciating pain and my heavily medicated
state. I was a victim and I didn’t want to die. It may sound absurd, but the neurosurgical nurse’s
comment gave me hope when I was experiencing bad days. It gave me a strong and compelling
reason to not further beat myself down into the ground.
The support group meetings went well and I have made many new friends. These
meetings also allowed me to realize how fortunate I am. Some survivors have it worse off than
me. I became a survivor because I had an excellent support system in Laura, family, friends,
Jesus on the cross and this motley crew at the support group meetings. Someday soon I hope to
be that factor in someone else’s life. These groups of individuals with their own unique
scenarios are simply amazing and deserve everything good the world has to offer them.
Months later, a group of student nurses attended the meeting. They wanted to address the
anatomical and physiological aspects of the post-aneurysm patient. The student nurses were so
engrossed with the science of it and not the actual patient. I listed for as long as I could then,
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BOOM!, I lost it. I interrupted everyone’s analysis and opinions then broke out with an
emotional and boisterous call to address the mental health concerns of patients. I cried as I
shared my experience with them. I described how my psychological needs were overlooked by
the medical community. “If I was bleeding, everyone here would know what to do. My mental
health had been profusely bleeding and it was overlooked. I hope when you all become nurses,
you will remember this meeting. Please advise and push your patient, their family members and
doctors to get a mental health consult sooner than later. Thank you for letting me add in my two
cents.”
If anyone is unfortunate enough to fall victim of a life-changing event, I highly
recommend the assistance of a mental health professional. If there is an electrical short in your
house, you call an electrician before a fire occurs. When your check engine light goes on in your
car, you take it to a mechanic. When the glass tabletop shatters, I strongly recommend that you
buy a new one. Being proactive is vitally important. The student nurses were both receptive and
understanding. Even future nurses rock!
At the meetings, we shared our traumatic, sad and riveting life-changing stories. People
described their anger, their fears and their dislikes of their new normal. Through tears comes
laughter. Through pain comes strength. With the meeting room filled every third Wednesday of
the month, I feel at home. I throw jokes around like I’ve known everyone for years.
I informed the group that, “I try arrive to the meetings fifteen minutes early. I eagerly
wait in the parking garage to take my own hysterical attendance report. I can tell who’s going to
the meeting because they press the lock button on their keychain six or seven times: beep beep,
beep, beep, beep, beep! We reassure ourselves while pissing off the world around us. Most of
our short-term memory works like a vacuum cleaner when trying to reach that last piece of
carpet and it turns off, then on for a quick second then off again. Obviously, the chord is barely
in the socket, just like our short-term memory. On that note, why don’t manufacturers make that
damn chord longer? After our meetings, we head back to the parking garage. Unfortunately,
some of us can’t remember what level we parked on (mostly me). Brain injuries can be funny
that way; but you can almost be sure our car doors will be locked.
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Chapter 43: Where is Johnny At?
F
rom outside my first floor bedroom, I consistently heard, “Where is Johnny at?” I was
taking about five, 45 minute rest periods just to make it through the day. After the brain
aneurysm and subsequent stroke, my brain needed rest. This is commonly referred to as
Neurofatigue. I will need them for the rest of my life. My brain tells me when I need to stop and
rest. Unfortunately, it’s usually at the most inopportune times and usually occurs when I am
pushing myself in attempts to achieve more. I don’t know when or how to stop. Laura and I call
it squirrel syndrome. I am running circles around the house, not completing the original task I
set out to do. Add to this the character, “Kramer” from Seinfeld. I come in busting through the
door, looking all sorts of disheveled, searching for the glass cleaner, paper towels, a screwdriver
or whatever is needed for the project I’m involved with. More times than not, I forget what the
Hell I was working on in the first place. We aptly refer to this as “The squirrels have partnered
up with Kramer!” When this happens in the morning, I usually forget to insert the coffee filter.
The coffee-ground-infused-liquid spills all over the counter and down to the floor. I never catch
it in time because I’m running around doing something else. Sometimes it’s hilarious to watch
when the squirrels partner up with Kramer; other times it’s not.
When I did find time to rest, I ASSumed that anyone around me thought I was being lazy
or using my brain injury as a crutch. I still feel like this, but I am trying to retrain my brain to
listen to my and body vice versa. My good days are phenomenal. My bad days consist of me
constantly making excuses for why I am fatigued or why I couldn’t accomplish the simplest of
tasks. They are not excuses! At times I feel that many people, including some family members
and friends, still can’t thoroughly see it; or maybe they can’t thoroughly accept it. If that’s the
case, are they making an excuse?
This is a part of my new normal. This is my new life. Will it get better? I have to
continually remind myself that I have irreversible brain damage; some things will get better and
some things will get worse. My dead brain cells will never return—never! I am slowly starting
to accept this fact while still vigilantly battling my own worst enemy—me. With the help of
Laura, I remain optimistic and continue to improve on better planning and scheduling. Many
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times Laura has looked at my written schedule and said, “Really? Do you think you should clean
both bathrooms, vacuum the whole house, and then help coach soccer tonight? If, and only if,
you feel good, try to wipe down one bathroom, rest, only vacuum the living room and get a good
rest before soccer. I am serious, John.” On the days I am feeling like an anarchist, I overdo it
because the squirrels have partnered up with Kramer. I am usually rendered useless for a couple
days following. I know my limitations but I sometimes feel the part of brain which tells me stop
is buried six feet deep and nonexistent.
Even to this day, I wait until my wheels fall off before taking the initiative to rest; at that
point I am a bastard to deal with. It’s like walking through the Magic Kingdom at 2:30 pm with
three toddlers that haven’t had their nap. A full-blown and monumental meltdown usually
ensues, but I often keep pushing through because I want to go further and get better. I thought
by doing more it would help me achieve my goals quicker. That strain and added pressure was
not working well for me, nor my family. During this time, every task I performed depleted my
energy reserves and I would lose focus.
I began to notice that when I was more focused it was mainly because I had more energy.
However, I also noticed that within two hours of awakening my low gas light would come on
and I’d be running on fumes. I tried several medications to increase my energy, which should
have increased my focus; I was a cooperating living lab rat, of sorts. One medication that was
prescribed for me was to assist motor control and help increase my focus. I believed it worked
because I didn’t rest as much as I should have. That prescribing doctor retired and my newlyassigned
doctor wanted to try something different and prescribed a medication commonly used
to treat attention-deficit hyperactivity disorder (ADHD). Holy crap! I became a supersonic
Kramer squirrel, but with focus.
I felt like the old Johnny. I was up, zooming through the house, cleaning and fully
completing tasks. If anyone had recorded me, it would have looked like a movie on the fast
forward setting. One day, on the coldest day of the year, I noticed that three new trees had
grown out of control outback of my home by the deck. They started as little seedlings but
quickly grew into a mess. Because of the new medication, I had an overabundance of energy
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and was insanely focused. I grabbed my ax and saw and worked diligently chopping down the
three trees and trimming them down into small stacks to be recycled. After chopping down the
first tree, I looked down at my phone and noticed the nineteen degree wind chill factor on my
weather app. Then, BOOM! I stopped momentarily because I realized I was having a brain
seizure.
The brain seizures I experience are called simple partial seizures. They do not involve
me flailing around on the ground or losing consciousness, but do affect the left side of my body.
At onset, my left hand gets a tingling sensation then goes a little numb, similar to a stroke. I had
become accustomed to these, as infrequent as they were, and as a nurse I knew to always time
them. If they lasted more than twenty-five minutes, I would call my doctor or go to the hospital.
All of my seizures generally lasted twenty-one minutes.
Okay, one tree down and two to go. The new medication kicked me into overdrive and
bypassed Common Sense Boulevard. Some things aren’t so common for me anymore and they
don’t make sense either. I was overly focused but failed to understand the extremely dangerous
consequences. That part of my brain was severely damaged.
After a short break, I chopped down the second tree and sawed it into smaller pieces.
BOOM! I had my second seizure. That, too, lasted twenty-one minutes. With two of the three
trees cut down, I took a small break then sorted and finished stacking the braches. I moved onto
the third tree. I was shivering and drained but still energetic and focused enough to complete the
task, or so I thought. I chopped the third tree down and sawed the larger pieces into smaller
ones. Wait for it, wait for it…BOOM! I suffered my third seizure. I didn’t stop. I pulled the
last stack out to the curb and finally retreated into the house to defrost my almost-frozen toes and
hands.
I did it! Yes, the old Johnny is back! Similar to building that damn tabletop, you might
be asking What the hell were you thinking, John? I can’t explain what I was thinking or why I
didn’t stop; I was blindly excited. I still have a problem with identifying my limitations. As far
as limits go, a brain injured person has a speed limit around twenty-five mph in a fifty-five mph
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zone. That day I had been doing around seventy mph. One seizure for every tree and I never felt
more alive. The old Johnny was coming back! Bad news: seizures aren’t good for the brain, and
I knew that. I have a very impulsive brain now. To many people it may appear that I am
blatantly disregarding my brain’s own security system, but I’m not. It is just one of the many
complications associated with the injury.
I wanted that new medication to work at any expense. I was yearning for that old me to
reappear; that go-get-em-never-give-up-S.O.B.-anarchistic-Type-A-never-saying-no-to-someonein-need-smiling-Johnny.
Yet once again I failed to keep all of my doctors informed of this new
medication change. At some point, a finite amount of common sense finally kicked in; that’s
when I called my neurologist, not the prescribing physician. He immediately advised me to stop
taking the supersonic-Kramer-squirrel medication and increased the dosage of my anti-seizure
medication.
It was a terrific dream day turned into a horrific nightmare. I thought there was a newfound
hope with that medication. The next few days I was completely annihilated. I tried to get
back into that new normal mindset by taking several rest periods and trying to listen to my brain,
but I was slowly being pulled down by the grotesquely dark, slimy hands of anxiety and
depression. The realities of living with a severe brain injury were lurking over my every move.
I needed to do a better job of paying attention or I would be back hanging out with Kramer’s
look-a-like twin sister, bumming smokes and eating Fruit Loops.
So, where is Johnny at? I was doing some serious soul-searching and trying to heal. I
needed to identify the more important things in my life; however, identifying and acting on them
didn’t (and still don’t) work well for me. They seem to be in two separate filing cabinets. One
cabinet is always locked and the files in the other cabinet are not in alphabetical order and are
haphazardly scattered about.
I identified that the most important things were being a better husband and father while
coming to understand that my family was more important than me trying to get the old Johnny
back. Instead, there is a new Johnny with a new normal. So, where is Johnny at? He is resting
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and realizing that he will never return to the person that he once was. He needs to rest to figure
out who the new Johnny is and this requires a fair amount of help, patience and rest to do so.
Below is a poem written by a strong aneurysm survivor, Shannon Fry-Jones. It
accurately captures how many brain aneurysm survivors feel about their old and new self. Thank
you for allowing me to share your poem, Shannon. I appreciate it.
How can I explain to those
who could never understand
the person that I was, is gone
this is who I am.
Previously quick to answer
any questions one put forth
so slow with my answers now
I fear I’m losing my self-worth.
The core inside of me remains
loving, good and kind
but the easy-going rest of me
has been left behind.
The memory of an elephant
Used to be inside my mind
this new me forgets everything
and is always running behind.
They say patience is a virtue
I used to have this trait.
It shines through on occasion
but the new me hates to wait.
My mind was always clear
solving problems without fault
the other self took over
and my brain seems an empty vault.
Anger was slow to rise
in the person I used to be
Anger boils and rages
Inside of this new me.
No one can see the confusion
Behind the same face that they adore
But until there’s wreckage in their brain
the only understanding me before.
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Chapter 44: The Role Reversal
I
went from breadwinner to bread eater in my house. I have worked nonstop since I was
twelve years old. I mowed lawns, shoveled snow and detailed cars. I did everything I could,
legally, to make a buck. At fourteen, I worked in my uncle’s factory, which wouldn’t happen
today with all of the new labor laws. While I was a Corpsman in the Navy Reserves, I was going
to nursing school and working full time as a nurse’s aide in an emergency room.
To make extra money, I subjected myself to some quirky things. I signed up for
Centrifuge testing. It was exhilarating and it paid well. After several sessions I think they took
me up to 5.5 G’s while monitoring my vital signs. Years later, I would have never imagined that
my life would be spinning out of control like that centrifuge. I was President of the Student
Nurses Club and by my last semester, I picked up a part-time bartending job on top of everything
else. It wasn’t all about the money; it was more about fun and happiness. Whenever I was
happy and having fun, I was successful; it was an added bonus that I made good money doing so.
I never considered it working or just punching in on a time clock. I made the best of any
situation or predicament I found myself in.
I loved working. I gauged my success not solely by my income, but with my happiness
in the occupation. I took some bold chances and risks by switching my career paths several
times. Why would I switch careers so often? Why not? When I wasn’t happy or felt like I
wasn’t moving in the right direction, I would take a chance and venture onto newer endeavors.
Between ages of twenty-one and thirty-nine, I held the following jobs/titles: Navy Corpsman,
Registered Nurse, Steamfitter’s Union, Warehouse Manager, Construction Project Manager,
Realtor, and Software Sales. I may have forgotten one or two, but I was very fortunate with the
chances I took. Some were calculated moves and some weren’t and they always worked out in
my favor; I made them work out. I poured my heart into everything I was involved in. My
tenacious drive and fear of failure fueled my determination to succeed. I believed in myself and
people believed in me, especially Laura.
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BOOM! Just like that, I lost control of being in charge. I was no longer the breadwinner
and, at first, I felt like a complete and utterly useless person. It proved to be one of my most
challenging career switches. Being a good parent and husband became my career and Laura took
over my breadwinner role—and I didn’t like it. My days of waking up and traveling, scheduling
meetings, making forty calls a day and putting dozens of proposals together were over. My days
now consisted of waking up and being responsible for something much more important—my
daughters. I was the official stay-at-home parent. The pay sucked but the benefits were
undoubtedly worth it. No company could ever match those benefits. I lost the battle, but I didn’t
lose the war.
It took some time, but I fortunately realized it didn’t change the person I had always
been. I am the luckiest man alive. I finally have an opportunity to spend quality time with my
daughters. On the other hand, I didn’t feel like I was being a good role model to them because I
was constantly drained and needed several rest periods a day. I still feel like that on many days.
I wanted my girls to look up to a father that was a hard working, successful man, not an
unemployed, disabled dad who took five rest periods and popped over elevenpills a day.
The role reversal took some getting used to, but I had to dive in head first and take care of
business. It was one of the best things that ever happened to me. It opened up my eyes as to
how fortunate I was and how I survived by being saved and wasn’t merely spared. I wanted my
girls to see that I wasn’t just a stay-at-home-dad. I wanted them to see a strong survivor; a
loving and compassionate father who cries at songs, commercials and movies. I was not the old
daddy nor would he ever return. As Frank Sinatra said, “That’s Life.” I had to learn and teach
myself that the new daddy had the opportunity of being better than the old daddy, it may just be
in a different way. I needed to believe that it was the case; I needed to continually believe in
myself.
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Chapter 45: You Need to Write a Book, John
S
everal friends and family members told me I needed to write a book and share my story. I
couldn’t wrap my brain around the idea. Me write a book? I didn’t think that my story
differed from other survivors of a traumatic life-changing event. I’d never written a book before
and wouldn’t even know where to start. Why should I throw all of my dirty laundry out for
everyone to read? I shelved the idea and wasn’t particularly interested in writing a book…
…Until M came home from school with a book she had written. The sturdy-bound book
was a collection of short stories she had written throughout the school year. The school binds it
and laminates the cover; it looked professionally put together. I was blown away by with her
talented writing skills and her dramatic, in-depth, detailed stories. Reading her book motivated
me and gave me the incentive I desperately needed to start writing Brain Go BOOM!. Thanks
babe, you are my sunshine!
My goals for this book have changed. My original goal was to only share my story with
my family and friends. Then my goals expanded to wanting to share my story with other
aneurysm victims and their family members to help victims realize that they were saved and
they, too, could be survivors and not live as victims. During my numerous daily rests, I would
see countless commercials for the Wounded Warrior Project. Every Wounded Warrior Project
commercial produced blubbering outbreaks and tears from me. And then all of a sudden it
became obviously clear as to what I wanted and needed to do next.
I don’t have fantasies of Brain Go BOOM! selling a million copies or being on the New
York Times bestseller list, as this is my first self-published book (or will it?). With my limited
funds and inability to keep tabs on publication, sales, tracking and distribution, my mission was
simple: have people donate directly to The Wounded Warrior Project.
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Chapter 46: Why is it so Complicated to Give Back and Pay it Forward?
M
y goal is to help raise $10,000 in donations for the Wounded Warrior Project. Reaching
goals after a brain injury is a major milestone; at least, I consider it to be. I created a
website for Brain Go BOOM!, and there I wanted to emphasize that all book proceeds would go
directly to The Wounded Warrior Project. I contacted the organization directly, explained what
I was trying to accomplish and inquired about how to forward the proceeds of my book towards
the organization. It was a lot trickier and more complicated than I thought.
With my brain injury, it was a bit overwhelming trying to decipher all of their terms and
conditions; however, it became apparent that I would need to adhere to their well-established
guidelines. I had to tip-toe around a bit so it would be clear that they weren’t endorsing the
website or the book, which they are not. I then had a plan to create a donation fund of some kind
but, once again, there was too much legal red tape and hoops to jump through (I also lack the
skills I once had in properly managing money). I scratched my head, racked my injured brain,
made several phone calls and sent several emails. Then, I finally made contact with the
appropriate person within their organization. She explained to me the many reasons why I could
not execute my plan the way I originally thought I could.
I was getting frustrated and wanted to yell out, “Doesn’t anybody realize I have a brain
injury? Please let me help you!” I finally realized they were, rightfully so, doing their job and
protecting their organization. Every day people wrongfully use organizations for their own
personal or financial gain and that’s a damn shame. Perhaps they are the same people that have
money in their white-dated envelopes waiting to meet St. Peter at the pearly gates. Well, I’m
not one of those white-dated-envelope-carrying people. I needed to find a way and I would find
a way. To me no means: the answer to your request may not be obvious. I was going to find a
way!
At that moment, the fictitiously large, bright, white light bulb brightly appeared over my
head and the Philly street-smart kid came alive. I will offer my book for free, while encouraging
my readers to make a donation. And, thanks to my First Amendment Rights (passed into law on
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December 15, 1791) my Freedom of Speech and my Freedom of Press, which includes opinions,
would allow me to break through this barrier. So, my opinion is that the Wounded Warrior
Project is a tremendously helpful organization and its members will greatly benefit by your
support with your donation.
The Wounded Warrior Project is in no way associated with nor are they endorsing me or
my book, Brain Go BOOM!. I am not using their organization to promote my story. I thankfully
received permission to post one of their custom banner links on the website which will take you
directly to their website so you can make your donation. So, please, make a donation.
Once the dust had settled, they were extremely understanding and very helpful, even
helping me with the proper legal verbiage that I should use on the website. I can’t thank them
enough for their assistance. They are good people to work with. Again, my opinion is that many
of their members will greatly benefit from your support with your donation. I am confident that
YOU will pay it forward. You can go to their website or go to www.braingoboom.com and click
on the banner ad they have provided for me.
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Chapter 47: “I Had No Idea”
I
forwarded the first forty-four chapters of my book to some family members. To my surprise
and dismay, their verbose reply was, “I had no idea.” Behind the scenes, they had no idea
what I had gone through and what Laura had to do to keep our family together. To their defense,
how would they have ever known? We never broadcasted our problems to others. I was
confused because I thought everybody knew or had some kind of idea about the Hell we were
living. Well guess what folks? Not many people knew.
We lived in our war torn trenches and most days we were low on ammunition. Laura
was constantly with me shooting all of her ammo. At times, she even had to shoot them at me
because I had pushed her past her limits; the limits of which General MacArthur would have put
up his white flag and surrendered early off in WWII. Laura, on the other hand, pushed forward
and demanded more ammunition and demanded more cooperation from her brain-injured
husband. We were losing a lot of battles, but she believed that we could win the war.
She was not going to give up on me. She was not going to give up on us. Laura was
always Watching My Six. She reminded me daily of how important I was to her and our
daughters. I heard several stories about spouses packing up and leaving under far less
circumstances. I’ve even heard about a wife cheating on her husband because her husband
would never return to his pre-injured self. Laura never threw that white towel into the ring with
this Rocky. Now ask yourself: do you think you can dig deep enough and do that for one of
your loved ones for five years and more? Think about it. I can only hope your response is yes.
It takes a very strong person to endure that daily beating of mind, body and soul while
successfully holding down the fort, working full time and being the best wife and mother she
knew how to be. She is a terrific mother and has taught our daughters so much during this. I
can’t mention the list, as it would require me to write a separate book about them all. My
friends, family, and even me, as I write this, had no idea. Numerous people called me their socalled
hero for surviving and never giving up. Conversely, I’m just the survivor that benefited
from my wife’s heroic and selfless sacrifices over these past five, grueling years. She is the true
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hero of this story and deserves the highest award, the Medal of Honor, for her dedication and
commitment above and beyond the call of duty for any wife, friend and mother. I, myself, have
no idea (and may never know) the fullest extent of the sacrifices she made for the victory of this
war. We both have the scars to prove it, but Laura is the one that ferociously went on the
offensive and advanced our position.
The brain injuries made me my own Prisoner of War, but Laura devised several escape
plans for me throughout the years. I still can’t comprehend some of them and they frustrated the
Hell out of me, but they have motivated me to devise my own plans of action to becoming a
stronger and more productive survivor. In a military unit, there is always someone that falls
behind. Usually they aren’t admired and others don’t want to be associated with them. More
times than not, there is one or two within that unit that will go out of their way to ensure their
success because they will need to rely on each other. They don’t know when or where but
eventually they will need each other.
Sometimes things click and I learn from my mistakes. Unfortunately, there are still the
days where I’m stuck in Groundhog Day mode and can’t seem to snap out of it. I make
repetitive mistakes and apologies (or what others may call excuses) on a daily basis. They are
not excuses. I am S L O W L Y relearning the things that were once a part of my pre-injured
brain. Are they mistakes or the results of my brain damage? Anyone with a brain injury can
attest that most of them aren’t mistakes. They are the frustrating results of things gone bad after
suffering a brain injury.
I am proud to say that I am less than that of being my own Prisoner of War and more like
that of a strong wounded survivor in his platoon working on the ultimate escape plan. When, not
if, when we completely make it out, I am sure many more people will continue to say, “I had no
idea.”
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Chapter 48: Botulism
D
uring an occupational therapy session, two-and-a-half
years following my stroke, the therapist noticed
something seriously wrong with my left hand. My reaction
time and coordination varied tremendously compared to my
right hand. This slowly progressed into me not being able open it
fully. It then quickly progressed, starting to cause my fingers to
grip inward. As the months passed, my hand started to cramp more
frequently, so bad that the nails of my 3 fingers (my pinky finger,
ring finger and middle finger) were cutting into my palm. It got to
the point where the pain felt like a constant Charlie Horse. I just
chalked it off as a side effect of the stroke and convinced myself
that I should be happy that I was still alive. That was easier said
than done because the pain had trumped my pride.
Pictures taken March, 2015
While attempting to make light of the painful condition, my daughters and I named my
left hand Gimpy or The Gimp. It was a far cry from what we used to call The Claw. When The
Claw appeared, it meant it was time for tickle matches. I used to open my hands up and put them
over my head and say, “Look out for The Claw,” then quickly lower my hands and tickle them.
My left Claw was dead and the girls couldn’t understand what was happening with it.
Gimpy was, and still is, painful. I am often embarrassed walking around with it. Mind
you, my left hand is incredibly strong, I’ve just lost my fine motor skills. What does this mean?
Tying my own shoes, buttoning a shirt, tying a tie, buttering a piece of toast, opening packages,
doing my girls’ hair and typing on a keyboard are arduous tasks. On bad days, these tasks are
impossible to complete which intensifies my anxiety and depletes my energy reserves.
A considerable amount of the original writing of this book was done by using my iPad
voice dictation. I then made the numerous adjustments and revisions by hen-pecking the rest of
the book with my unaffected right hand, as Siri didn’t fully understand my Philly accent. (I hope
that someone creates an app that understands Philly vernacular.) I was referred to a hand
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specialist and it was explained to me that I had dystonia. “John, it is an involuntary contraction
of your muscles. Instead of, let’s say, a thousand involuntary messages being sent from your
brain to your hand in one minute, you are having something like ten thousand messages being
sent which is causing your fingers, hand and wrist to contract and turn inward.” Why?
That stroke to my right basal ganglia area of my brain was the root cause. It affected my
fine motor coordination and functioning. It was a delayed domino effect of sorts. The sequence
is as follows: subarachnoid hemorrhage caused by a giant, ruptured brain aneurysm, seven clips
surgically inserted to repair it, clot may have formed from a clip, clot breaks away causing a
stroke in right basal ganglia area, depression rears its ugly head, then an overabundance of neural
messages are sent to my left hand.
A new challenge was born: dystonia. This challenge was put on my plate, but I couldn’t
butter the toast on my plate. Where was that name derived from? Dystonia…maybe it’s the
name of long lost city near the Finger Lakes. I’d like to think so. This brain injury gets me off
track and I think about stupid things like that every day.
My hand specialist is one of the best on the East Coast. He recorded some basic hand
tests and took several notes. “What can we do here, doc? It’s annoying, cumbersome and most
importantly painful. Can you just go in to sever and cut out the nerves? My left hand is useless,
besides for carrying grocery bags.” His suggestion startled me, “Botulism injections.” Huh?
Was I in a plastic surgeon’s office? I know that all of my conditions have aged me a bit but did I
look like I needed Botox?
“The Botox injection will provide temporary relief, up to about 3 months, by blocking
those extra messages being sent from your brain down to your hand.” “Okay, sign me up!”
After playing tennis with my insurance company, the ball landed in my court and botulism
injections were finally approved. Some of those injections have worked while others haven’t
worked at all. The process is quite intricate, as my doctor has to identify the exact nerve while a
needle is in my arm, hooked up to a low voltage device which sends small pulses of electrical
signals to locate the correct nerve that is causing Gimpy. When located, the Botulism toxin is
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injected. It is like threading the smallest thread through the smallest needle without glasses.
When he hits the right spot, the dystonia is put to rest for about three months. It is amazing and
so is he. It was a great relief to me and Gimpy.
Here it comes…BOOM! Soon after I started getting the Botulism
shots in my arm, I noticed the dystonia had moved South to my left foot
and my big toe would uncontrollably flex upward.. “You have a
hitchhiker’s toe.” It’s called hitchhiker’s toe because that’s exactly what
it looks like; instead of a thumb, it’s my toe. With this new challenge I
unconsciously began walking on the outside of my left foot, as the
dystonia in my food was copycatting that in my hand and the intermittent
pain simulated a Charlie Horse. Add another item to my new normal.
Pictures taken March, 2015
These new normals and changes are a daily reminder that I have suffered a giant,
ruptured brain aneurysm and stroke, especially, when I am having a bad day. I do my best to
remain positive and stay on track because I believe there is a light at the end of the tunnel.
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Chapter 49: Changes
A
s a Navy Corpsman and Registered Nurse, I consider myself to be a prepared person. I
have always worn a belt in case I unexpectedly need a tourniquet or for self-protection (if
held by the non-buckle end, it turns into a weapon that can be swung towards bad guys). I would
carry a small knife in my car and always carried a pen in case I needed to perform an emergency
tracheotomy. I know this may sound a bit overboard, but that’s how I was; I was always
prepared. I lived life thinking that if something were go wrong, I would be prepared for those
unforeseeable circumstances. However, I could have never prepared myself for a giant, ruptured
brain aneurysm and stroke. I would have never imagined having two brain surgeries, being in a
coma, seeing an angel, not knowing how much a quarter was worth, learning how to walk then
wanting to end my own life.
After my aneurysm, my over-prepared trait was amplified tenfold. I was told by several
physicians and at my support group meetings that certain personality traits are amplified after a
brain injury. Some were good while others weren’t. If a person was jerk before a brain injury,
they could become a bigger jerk after one. The trait most notable in me was being over-prepared
and my over-the-top protectiveness. My family’s security, along with me over analyzing the
uncontrollable events that lay ahead of me had consumed me, and my family was concerned. I
knew I had zero control over them but I was not going into battle without ammunition.
I became neurotic about my home security and my family’s safety. I considered buying a
better, newer gun and putting it in my safe, but I knew that wouldn’t be my best choice for the
reasons stated in earlier chapters; I just wasn’t ready for that. I over-prepared and to this day still
have more booby traps set up than most people could ever imagine. It’s not a DEFCON ONE
setup, but it’s the best my brain-injured-self could muster up. Family members and friends that
know about the booby traps shake their heads in disbelief at the extent of my over exaggerated,
homemade security devices.
I tested out a few mock ups on Laura and my girls. On one occasion, they frantically ran
out of the house while screaming their heads off. BOOM! They wanted Johnny’s head on a
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platter. They were extremely pissed off at me but that’s what worked for the new me; it just
didn’t work for them. In one of my testing scenarios, I took Laura off guard and in reactionary
horror, she grabbed the device, threw it against the garage floor where it smashed into pieces.
For my own safety, I don’t use my family members as test subjects anymore.
My time management skills and abilities were, and still are, a wreck. I had to set alarms
or reminders on my iPhone and iPad to remind me to set more alarms and reminders. It’s what
seemed to work best for me but it mentally drained me. There were a multitude of chimes
ringing from my devices two dozen times a day. It sounds like common sense to set one alarm,
but some things aren’t so common nor do they make much sense either. For some reason, I
unintentionally, and what would appear to many people, ignore the alerts. It’s not an excuse.
If I have to be somewhere at 9:00 am and it takes me a half an hour to get there, with
fifteen minutes to shower and get ready, I go bolting out the door at the very last second. All too
often I am late. So why wouldn’t I start getting ready at 8:00 or 8:15? That part of my brain
doesn’t work very well; it’s as if it’s dead! I battle with this every day. This adds much
unwanted strain on me and my family while also increasing my anxiety to the point where I
don’t want to go out at all. I become depressed because I feel like I’m a failure. It sounds like
common sense, just set you alarms and pay attention John! I have all good intentions of sticking
to my plan and getting out the door on time and yet it just doesn’t happen unless somebody is
yelling at me to get ready. I take everything up to the last minute. I wish it was intentional so I
could address it in a more reasonable manner or just make up some dumb excuse, but it’s not
intentional. It’s a part of my new normal.
It seems as if this new Johnny thrives on some form of self-inflicted pressure. It’s not
like that—I actually hate it. I wrote about eighty percent of this book under pressure. I could
only write when something needed to be done or when we needed to be somewhere. I take
things down to the wire while Laura or the girls yell, “Let’s go! We have to leave in seven
minutes. You didn’t even get a shower yet?” Only after this will I quickly shower, change and
scatter about the house, set up my booby traps and hop in the car. When I finally get into the car,
I run back into the house one or two times because I’ve either forgotten my medications, my
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phone or I needed to recheck things for the fifth time because I have forgotten I’ve already
checked them, BEEP…BEEP…BEEP...BEEP…BEEP…BEEP. It may sound funny reading
about it, but it’s not so funny living it.
It hasn’t changed or gotten any better as the years progress, either. In fact, I fear that it’s
only getting worse. I feel like a scatter-brained looser when I can’t keep the simplest of tasks in
line, like getting out of the house on time. It’s so confoundedly frustrating. Unlike the squirrels,
I just can’t catch them, spray paint their tails and release them by the lake. I just have to move
through the Groundhog Day motions and try to make up for it through other actions.
On the positive side, I am able to do more things now than I could two years after the
aneurysm; however, fifty percent of the time I feel like I’m walking on a tight rope that’s
slathered with thick grease and without a safety net. On my good days I can walk straight across
it without any problems. On my bad days, I am teetering side to side while slowly inching
myself across in my best attempt to reach the end. Every day around 4:00 pm, I fall and crash
hard like an egg cracking open on concrete. I can’t begin to count the number of doctor
appointments since the aneurysm, but on my bad days I know I have canceled at least fifteen or
more because it feels like my brain has left my body. The same applies when I’m trying to meet
up with my friends or family. It’s difficult to commit to a date and time because I have no idea
how I’m going to feel two days later after we have originally planned something. It’s not an
excuse.
The good thing is that my family and close friends know this about me. The bad news is
that I can’t fully accept it and makes me feel as if I am unreliable. When I don’t or can’t rest, I
continually push myself past the breaking point just to know that I did more than the previous
day. Following those days, I’m barely coherent, not focused and extremely agitated. I fall apart
right before my very own eyes. It’s difficult for people to understand unless they’ve had a brain
injury. Not everyone is as accepting as my family and friends are.
On a few occasions, I remember thinking, God I wish I had my big, white, oversized
helmet back on so people could sort of slow things down and remember that I have a brain
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injury. When I am out in public, I can’t stand up and say, “Okay everyone, I have a brain injury
and I need you to slow down and try to understand where I’m coming from.” This even happens
with some family members and friends because they’ve seen such a vast improvement with my
progress. I feel like sometimes they have forgotten about it; it’s not too often, but often enough
to write about. I know they haven’t forgotten but sometimes need a reminder. I feel like they
expect more because I look good and appear to be doing okay. Maybe it’s my own perception of
how things are playing out that particular day?
When I’m tired most people think it’s the usual type of tiredness from lack of sleep or
from pushing myself too hard, physically. There’s a condition for what I have and it’s called
Neurofatigue. My brain’s gas tank is empty. It’s more like a depressive state where my muscles
ache, I’m extremely unfocused and all attributes of common sense are nonexistent. I just need to
go into my bedroom, close the shades and be left alone. I never sleep, I just lie down and watch
TV or open up my iPad, which is counterintuitive because I am depleting even more of my
brain’s energy reserves. It is extremely difficult to lie down and do nothing, not even to relax.
My mind is constantly on the go and I can’t shut it down. I am very fortunate that most of my
family and friends have accepted these changes, and hopefully I am very close to being able to
accept it, as well.
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Chapter 50: Funeral Songs
I
find it appropriate that I shared my funeral songs with you. I believe you get to know
someone better by the music they listen to. What inspires them? What brings back good
memories? What motivates them? Try it yourself with some friends or family members. You
may be surprised at some of their song choices! Throughout my journey, I put together a list and
shared it with one of my best friends, Frank.
My request was that he hold onto the list and use it when the time comes. He assured me
that when the inevitable happens, “I will make sure that all of these songs are played at your
viewing and funeral, but you better not be dying anytime soon.” I told him, “I don’t have any
plans on it.” I was fortunate enough to bear witness to most of the people that would be
attending my funeral from the previous parties. Sort of a scary thought there, huh? Most of
these songs can be best viewed on YouTube:
Song
Artist
At Last (our wedding song)
Etta James
That’s Life
Frank Sinatra
Gonna Fly Now: Rocky
Bill Conti
When September Ends
Green Day
Don’t Stop Believing
Journey
I Hung My Head
Johnny Cash
The Man Comes Around
Johnny Cash
Time To Say Goodbye
Andrea Bocelli
Melt With You
Modern English
If You Leave
OMD
Sunny Side of the Street
The Pogues
Eternal Father
Song I sang in Navy Choir
I Was Only Joking
Rod Stewart
99 Red Balloons 7-Seconds version
Black
Pearl Jam
Bad
U2
Pride
U2
Black
Pearl Jam
What I Got
Sublime
Collide
Howie Day
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Song
My Way
Rooster
All I Ask Of You
Principles Of Lust: Sadness
Does That Make Me Crazy?
Enter Sandman
These Days
All In The Family
Good Times
MASH
Family Guy
You’ve Gotta A Friend In Me
What a Wonderful World
A Nation Once Again
You May Be Right
Brickhouse
I Always Love My Momma
Hurt
Summertime
Wonder
Danny Boy
We’ll Meet Again
You Are My Sunshine
Cups: “When I’m Gone”
Artist
Frank Sinatra
Alice in Chains
Phantom Of The Opera
Enigma
Gnarls Barkley
Metallica
Foo Fighters
Theme Song
Theme Song
Theme Song
Theme Song
From Disney’s Toy Story
Louis Armstrong
Wolfe Tones
Billy Joel
Commodores
The Intruders
Johnny Cash version
DJ Jazzy Jeff
Natalie Merchant
Frank Patterson
Johnny Cash
Elizabeth Mitchel
Anna Kendrick
Whether you call it a life celebration or a funeral, I think they suck. At the cemetery, I
hate looking down into the hole during a funeral with the casket suspended above. I hate it.
I have a special request that my zipper be undone during my viewing because it was hardly ever
zipped up when I was alive. As far as the cemetery goes, I don’t want a ceremony. I am offering
my body up to science, if they want it. If not, I want the funeral director to take my body to the
burial site in a basic casket, drop me off and let the groundskeepers take over from there.
I don’t need or want my body laid to rest in an overpriced fabricated vault. It’s not that I
don’t think I’m worth it; I believe it’s just a big waste of money. I would prefer that the extra
money be earmarked and donated towards a good cause which, in my opinion, would be The
Wounded Warrior Project. I want my family and friends to meet up for several cold pints of
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Guinness and I want it to pour freely for however long they wish. I don’t want people putting
magnetic flags or stickers on their cars and driving in a procession with their hazard lights on
while waiting for that inevitable jerk to break into the line and screw things up for everyone. I
want things to be simple, as my life always wasn’t…
Those are my funeral songs.
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Chapter 51: Losing Weight, Popping Tags and Concussions
A
t 225 pounds, I was out of shape and overweight and didn’t much like what I saw in the
mirror. As if I hadn’t had enough changes, I came to the realization that a much needed
change with my weight was in order. To execute my plan, I joined a gym, cut out sodas and
watched what I ate. I worked out 3 days a week and between March and the following May, I
had lost 55 pounds! People would tell me how good I looked and so I took my weight down
even further to 160 pounds. However, at that weight, I was weak and the same people began
telling me to “eat something” or that I looked “like a POW.” Anarchist John didn’t listen to
them at first, but eventually found that the 170-175 pound range worked out best for me.
My clothes didn’t fit with the weight loss; my waist size went from a 38 to 32 and soon
my pants were literally falling down to the floor. I was never into spending a lot of money on
clothes, even in my younger days. When Laura and I got together, I let her buy my clothes
because she knew how to choose the sharpest looking outfits; sort of like the matching
Garanimals outfits that my mom bought from Sears on the Boulevard but in adult form. Due to
my decrease in income, I soon found myself shopping at the stores I used to donate my clothes
to. One day, I swore I bought the same shirt I had donated months before.
On the first Friday of each month, one store hosted a fifty percent off sale. The line to
get in stretched well over seventy-five people; it was pure mayhem. I would go up on Thursdays
to scout out the place and, upon further inspection, noticed that some women were coming in to
hide their desired choice of clothing on a different rack for the next day’s sale. I saw some
women pulling pants and shirts and relocating them over to the men’s racks. Rather ingenious,
but I thought that was just as bad as, “Popping Tags.” Maybe they only had $20 in their pocket,
so who was I to judge?
I lost weight, had more energy and wanted to get involved with both of my daughter’s
sports. I couldn’t get involved with softball for the risk of getting hit in the head. Six- and 11-
year-old girls playing softball could be a recipe for disaster, so I opted for coaching soccer. I
played soccer as a youth, but coaching thirteen girls on each team proved to be a mind-blowing,
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yet rewarding, undertaking. My best estimate was that one-third of the girls from each team had
some form of ADHD, one-third of the girl’s parents made their daughter sign up and play and the
remaining one-third just wanted to play soccer.
What did they all have in common? Fun! Everyone loves to have fun. My game plan
switched from tactical coaching to crazy coaching. Coaching isn’t as complicated as most
people think when approached this way. Here are my basics on being a coach:
1) Help build the kids’ self-confidence. Make each of them feel as if they are the most
important person on and off the field, while instilling in them that they need to rely on
each other.
2) Establish a routine and set reasonable rules. Kids need, and generally respond well to,
routines. Once they know the routine, their self-confidence usually skyrockets.
3) Run every drill with the kids. When they see that the coach is having fun, they usually
follow suit.
4) Try to be a kid yourself and look at things from their three-foot-high perspective.
5) Teach skills and run drills. Be repetitive, consistent, smile, laugh and have fun.
There were numerous practices and games where I could barely stand up straight. I was
physically and cognitively drained. I felt like hanging up my cleats every other week. It’s not as
if I announced to the kids and parents, “Hey, I had a ruptured brain aneurysm and a stroke, so
take it easy on me.” I didn’t want them to know. I thought, What good would it do? I only
disclosed it to a few other coaches I practiced with.
I recently found a letter I had written after L’s and my second year of coaching in 2012:
I learned something very important this year from a source I would have never imagined
possible. I coached my daughter’s boy/girl soccer team for 5 year olds. There was an array of
different talents and abilities; while some kids had no coordination or athleticism. I was very
proud of my daughter as this was her second season and “she just gets it” with an average of 3
goals a game. Some kids “get it” while other kids just don’t and they need extra guidance. This
is where I came in to help encourage, teach and coach a child.
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I encouraged every child to have the opportunity to score at least one goal during the
season. Sometimes it is nothing short of putting the ball in front of the goal for them to shoot;
but, not for Michael. This shy, skinny, black-haired boy with loud cheering parents from Europe
wanted their son to run with the ball and get a goal, like my daughter. At the first game, he
couldn’t keep up to even kick the ball once. His obvious sadness was overlooked by his
disapproving parents. By the third game he was kicking the ball; always out of bounds, but he
was happy. His parents were pulling their hair out while I was just happy to see him making
contact with the ball. Game 6, he was kicking the ball the wrong way and helped the other team
score. He was overjoyed, but his parents weren’t. I mentioned that he controlled the ball really
well and nobody could catch up to his lightning quick speed. Fast forward to the last game of
the year. The ball was passed to him from the center field circle. He dribbled and kept control
of the ball with both feet while running in the right direction. He stopped, looked behind him
and then took the perfect shot for his first REAL GOAL. Needless to say, Michael was astounded
at his accomplishment. His parents along with me were jumping up and down like we had just
won a lottery.
What did I learn from Michael? After my ruptured brain aneurysm I couldn’t keep up
with my old pace and was very discouraged. As time passed my family and friends coached and
cheered me on so I would stay on course. They reminded me that “slow and steady wins the
race.” I got excited and thought I was going to go back to the old John and like Michael, I was
out of bounds many times. Fast forward from 2010, I am more focused with my eye on my goals,
looking back only to reflect and move forward with patience, diligence and determination to
reach my goals. I can only hope that I am as successful as Michael.
That Fall, October to be exact, we took our daughters back down to Disney World for
their birthdays—Disney, again? Yes, again. During this trip, they wanted to go night
swimming, so we headed down to the pool. The lifeguards made an announcement that they
would be leaving at 9:00 pm, but the kids could still swim in the pool as long as an adult was in
the pool with them. I hopped in and we played for a while, timing each other swimming across
the length of the pool.
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I was on a fast lap when, BOOM!, stars appeared; I swam head first into the wall! I
thought somebody hit me with a 2 x 4 over the top of my head. I slowly stood up, and if it
wasn’t for me standing in the pool, I would’ve fallen over. I thought my new skull had cracked
open. My family stood over me, alarmingly concerned and in utter disbelief. After I composed
myself, I speed walked into the bathroom to check to see if my skull was bleeding. I didn’t want
to lead on as to how much pain I was in. Thankfully, only my hand was bleeding because that
hit the wall the same time my head did. When I came out of the bathroom, my family wanted to
rush me to the emergency room. I adamantly denied their request and said, “I’m fine, I’m fine.
I’m just a little startled.” The last time I said “I’m fine” didn’t work out for me so well. My
head hurt for about five days after but I never lost consciousness so I wasn’t overly concerned.
On that fifth day, we were home from Disney and L’s soccer Olympics were taking place.
She and I laced up our cleats, jumped in the car and off we went. We coaches manned different
stations and tallied up each individual’s scores from that station’s challenge. El was doing great!
I, of course, was doing too much at one time: taking pictures, manning my station; tallying up
points…too many things at once. I always wear soccer cleats to practices and games because I
get better traction and I have less likelihood of slipping or falling. Well, while manning my
station (and tallying up points and probably trying to take a picture), I went to kick a soccer ball
out from behind the net. My cleat got tangled in the goalie net, and as I was stepping backwards,
I flew up into the air and, BOOM!, landed on my shoulders, slamming my head into the ground.
My camera went flying off my shoulder and I actually felt my brain move inside of my skull. I
quickly got up and tried to compose myself like Fonzie from Happy Days and acted as if nothing
ever happened, all while removing the strands of grass imbedded into the back of my head and
shoulders.
I didn’t realize how bad the fall was until we arrived home. L told Laura, “Daddy went
flying up in the air and fell on his head really hard. He went really high mommy.” Two
significant head bangs within a week definitely warranted a call to my doctor. I wasn’t going to
fight this one because I actually felt my brain move and I knew that something wasn’t right. My
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doctor examined me and ordered a CAT scan. The results revealed that there was no active
bleeding, but I had suffered a moderate concussion; not a mild, but not a severe concussion.
The back-to-back head traumas had some longer term affects than I had originally
thought. For twelve months or more, I felt like I was living in slow-motion; not all of the time,
but a good amount of it. I’m still not sure if it is totally resolved yet. One of my doctors
explained that, “With you prior brain injuries, concussions like this could take a very long time
to resolve itself; it may take several months or even years for your brain to bounce back from it.”
So, I lost 55 pounds, had little-to-no clothes that fit so bought slimmer clothes at the thrift
store, and suffered a mild concussion from two good bangs on the head. One step forward, three
steps sideways—not backwards. If you say one step forward, three steps backwards, that’s
where you’ll be—backwards. “It’s okay to have a deviation in your recovery plan, but it doesn’t
mean you have to go backwards. You are allowed go sideways. It’s all about how you look and
deal with it, but you must deal with it.” Thanks Dr. P.
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Chapter 52: “99 Bottles of Beer on the Wall”
F
or four years following the BOOM!, I was on placed on several anti-seizure medications—
eight pills per day to be exact. That’s approximately 11,680 pills or 2,628,000 milligrams
of anti-seizure medications in four years. It took a while for the doctors and I to figure it out, but
that’s what worked for me. Other medications or reduced dosages didn’t work and seizures
would inevitably occur. Happily, this all changed in late 2014. My phenomenal neurologist and
I had a serious sit down about medications and the progress I had made to that point.
The anti-seizure medications, although helpful, left me lethargic and, on some days, next
to lifeless. Laura later explained to me, “You looked like you had a haze over your eyes, as if
you were buzzed these past four years.” We needed to try yet another new anti-seizure
medication. My neurologist slowly increased the new medications dosage, while tapering down
the preexisting ones. The new medication has dramatically changed my life. This, along with
another medication to help increase my energy and focus, has turned my life around. I’ve gained
a little weight with it, but the benefits far outweigh the extra pounds.
The light’s diameter at the end of the tunnel is expanding and becoming brighter. The
track lights are mostly GREEN LIGHTS and the RED LIGHTS are all but gone. The YELLOW
LIGHTS are of my own making and remind me to proceed with caution and take breaks before I
fall apart, no matter who is wondering or questioning “Where is Johnny at?” I am more aware of
my limitations and I try my best to not overdo things. Let me reiterate: I am almost aware of my
limitations and I try. I test myself daily and continue to fail forward fast. On the great days, I
dust off my shoulders and try to learn from my mistakes. I have surpassed that, 18-Month
Plateau Theory and plan to do much more. I am putting my strongest efforts into adjusting to
my new normal life. I do notice improvements. In the not-so-far-off future, I plan to help
mentor brain aneurysm and brain injured victims. I need to share my victories as well as my
defeats. Through offering suggestions and allocating the lessons I’ve learned and by helping
them build a roadmap for recovery, my ultimate goal will be for them to evolve into a survivor of
a brain injury versus a victim of one. I want to get back to my life’s mantra of, “Help people get
to where they need to be in life.”
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This will occur over longer stretches of time and I’ll need to break things down into
several minute tasks which takes more time and cognitive energy. Like the song "99 Bottles of
Beer", I have to do things one at a time…“You take one down and pass it around, 98 bottles of
beer on the wall” and so on. From 99 I think I’m down to about 55 bottles of beer on the wall. I
would love drink as many challenges down as I can. When I get down to about 20 bottles of
beer on the wall, I may have a party with my family and friends so I can do it for real.
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Chapter 53: My 4 F’s
B
eing the stay-at-home-parent gave me ample time to reflect. I asked myself many
questions when I was feeling down, but even more when I wasn’t. That was a change in
the right direction. Some questions will never be answered and I probably shouldn’t be asking
them in the first place. It may sound like common sense because I’ll never get the answers I’m
looking for. So I must continue to “just keep swimming.”
During my rehabilitation, my initial questions and thoughts ranged from “Why me?” to
“If I were back to work, like many people think I should be, I know that we would be better
financially positioned for our future.” Some of these thoughts were eating away at my soul. As
the years have passed, some questions were finally answered and I started believing again. I
have accepted most of the travesty and have started to believe in myself, and it’s showing.
One bright, sunny, mild afternoon, I sat on the back deck and placed my pen and paper on
the newer glass-top table. I looked up to the sky and noticed the perfectly-formed clouds and
their crisp, brilliant, white color. They were positioned as if Jesus himself had cut them out of
construction paper and glued them onto the baby-blue-color-papered sky behind them. I could
see them even more clearly, thanks to the three trees I removed a year or so ago. I began to write
down what had helped in my evolution from being a victim of a giant, ruptured brain aneurysm
to that of becoming a survivor of one. They were my 4 F’s: Family, Friends, Facility and Faith.
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Family:
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Friends:
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Facility:
This picture was taken in front of a wall advertisement at Hospital J. It would be next to
impossible for me to get them together for a picture with me. They are too busy saving lives.
Faith:
My Savior, Jesus, who died on the cross for us and didn’t simply spare me.
(Thanks to my good, old friend, Tommy Sullivan, for sketching the picture below.)
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My four F’s all played their own special and vital role in my journey. It became
everyone’s journey. My entire Family, especially Laura, my daughters, my mother-in-law and
her husband, Ron, because they were there with me every single day; my best Friends Billy,
Matt and Frank; the Facilities, Hospital A, Hospital J, Peat and Hospital D for saving my life,
and for my successful occupational, speech, psychological and physical therapies; and finally my
Faith in praying to Jesus on the cross.
The cards were lined up for me when I finally agreed to go to the ER and then was taken
on the Brady Bunch helicopter. If you’re a blackjack player, it was an ace and a king; if you’re a
poker player, it was a royal flush. I was fortunate enough to have some of the world’s most
recognized neurosurgeons, Dr.Osen, Dr. Sirakam and their team, successfully perform my risky
and delicate brain surgery. They did what was needed to save my life. The nurses on the sixth
and eighth floors at Hospital J’s neuro-ICU kept me alive and the staff at Peat and Hospital D
rehab helped me slowly put the pieces of my new normal life together. My mental health
professionals, Dr. P, Dr. B #1 and Dr. B #2, sat back and peered deeply into my soul as my
neurologist and physiotherapist took their calculated risks on different treatment modalities.
How lucky am I? I would say that I’m the luckiest survivor alive!
I realize it even more so now with my children. I feel like I am transforming into a father
they can look up to and rely on, and am moving on from the half of a man they saw about three
to five years ago. I strive to be the best role model I possibly can be for them. With Laura, I feel
like we aren’t stuck in the trenches anymore. I love her to infinity and beyond. Everyone knew I
needed help in becoming a survivor and Laura was there to make sure it happened. Laura, with
her big, beautiful, blue eyes could somehow peer into the future and see past all of the problems
and shortcomings. She planned around the storms, hopped on the live grenades and managed to
not only keep our family afloat, she made our family flourish. Hallmark could never write the
words or create a card that describes her heroic devotion, dedication, patience, unwinding
strength, compassion and deep-seeded, sincere love.
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Without My 4F’s, especially my Laura, I would have never survived the giant, ruptured
brain aneurysm that made my BRAIN GO BOOM!
“You are stronger than you seem,
Braver than you believe,
and smarter than you think.”
(Christopher Robin to Winnie the Pooh)
THE END
(Or is it?)
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Acknowledgments:
With the deepest and most sincere gratitude, I wish to thank every individual that has
ever crossed my path in life; both good and bad. I have learned what to do and what not to do
from sharing in your stories and experiences.
Thank you to my grandmother, Eleanor Kelly, aka Nanny Kelly. When I was a young
age she punched me hard on my right arm and told me, “You learn more in pain than you do in
happiness, Johnny.” She couldn’t have been more right. I learned a great deal about myself and
others these past five years. It was excruciatingly painful at times, but I learned. I would even
like thank those RED LIGHTS, as they have motivated me to see things differently and to be a
more compassionate, forgiving and understanding person.
Special thanks to my neurosurgeons at Thomas Jefferson University Hospital,
Neuroscience Building, Dr. Rosenwasser, Dr. Tjoumakaris and Dr. Jabbour, for saving my life.
To their surgical teams and the superb nursing staff on the sixth and eight floors, I cannot thank
you enough! I went to one the paramount hospitals on the East Coast for emergency craniotomy
and aneurysm clipping; I stayed there and received first-rate nursing care. I had the best of both
worlds. Nurses rock!
Thank you to Dr. Cho, Dr. Mayer, Dr. Marino, the nurses, the physical, occupational and
speech therapists at Moss Rehabilitation Hospital. Thank you to Donna and the entire outpatient
rehab team at Doylestown Hospital. Thank you to my exceptional, NEW primary care
physician, Dr. Purcell. And last, but definitely not least of my medical doctors, Dr. Cook, who
possesses the insight to take the calculated risks in order for me to thrive as a survivor not a
victim. He grounds me and subliminally motivates me, while reminding me, “You’ve got to cut
yourself some slack, John. You have severe damage to your basal ganglia and right frontal lobe.
Some things that were once easy are now not possible. Give yourself a break.” They believe in
me.
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Thank you to my mental health professionals. Dr. Armstrong who helped me cope with
my P.T.S.D., Dr. Ralph Petrucci who has taught me it’s alright to have bad days or weeks and
that “…it’s okay to go sideways from time to time. I just don’t want to see you going one step
forward then three steps backwards, but it’s ok to go sideways.” Dr. Bach for teaching me that I
don’t have to wake up every day and wonder if I’m going to have another brain aneurysm and
possibly die. Thank you to Dr. Berardinelli who is teaching me that what others may be thinking
about me may be my own misconceptions and that I do posses the ability to change this. Her
reinforcing therapy sessions and giving me take home assignments are working out well. We are
working on it. She has also helped me create my own scheduling system; a system that may not
work for most people, but works for me. They believe in me.
Thank you to all of my fellow brothers at The Ancient Order of Hibernians (AOH)
Division 3 in Doylestown. Thanks to Jack O. and his big red truck with his grandson in the back
seat (again, I am so sorry Jack). To Jerry, Denny, Jim, Donnie for not only taking the lead on
driving me back and forth to ninety percent of my therapy sessions at Doylestown Hospital three
times a week, they also reinforced their own belief and faith that, “You are one of those guys that
will pull out of this hell hole and come out on top.” They believe in me.
Thank you to my closest friends Billy and his wife, Jess, Frank and Dawn and Matt and his wife,
Julie, for standing bedside Laura while I was in a coma and for supporting my family and, most
times, putting our needs in front of your own. Thank you for the countless hours of
conversations and for allowing me to cry on your shoulders. Thanks for the occasional punch in
the gut to wake me up and keeping me on track. Also, thank you to Scott and Jen and Kevin and
Lori. You never acted as if anything was out of the ordinary when I was wearing my big,
oversized, white, Corky helmet. May times you took on the RED LIGHTS that were in my path.
When people stared at me in disgust, there were many occasions when you would be more upset
than I was and you had no problem addressing these people head on. Thank you for making me
laugh and for motivating me to not let my brain aneurysm define who I was. Thank you for
loving me. That’s what friends are for...keep smiling, keep shinning... They believe in me.
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Thank you to Jesus on the cross for not simply sparing me, but for saving me. Thank you
for answering my prayers and sending one of your angles down to me to tell me that “Everything
is going to be okay, John.” I was told that by a family member that there were at least a dozen
prayer chains spanning the globe in my behalf. Thank you for answering their prayers. Please
remember one particular woman, Jesus, the custodial engineer from Haiti. She selflessly started
a prayer chain and diligently prayed for me after she had lost her son and other family members.
Everything near a dear to her was taken after that devastating earthquake in 2010, but not her
faith. Please put her in the EZ PASS lane when it’s her time to enter your pearly gates. She
believed in you and you believe in me.
Thank you for the support from my wife’s company and coworkers, especially, Mike for
allowing Laura to take the much needed time to be with me at home while she was by my side
for surgeries, hospital stays, doctor appointments, setbacks and therapy sessions. I know that
most companies wouldn’t have displayed the extent of heartfelt compassion that they did. Thank
you for being there for Laura. Thank you for understanding our predicament. You believed in
Laura.
Thank you to our nursing coordinator, Jill, and all of the members of the monthly
aneurysm support group meeting at Thomas Jefferson University Hospital. We are a motley
crew, but we all believe in each other and make sure our car doors are surely locked (beep, beep,
beep, beep, beep, beep).
Thank you to Trace Adkins, Mark Walberg and Dean Norris for being celebrity
supporters on the Wounded Warrior Project commercials. (I would like be reimbursed for at
least fifteen boxes of tissues.) The commercials that were aired motivated me and shed some
light on expanding my mission in completing my book, while encouraging my readers to support
The Wounded Warrior Project. Thank you to our wounded veterans and for The Wounded
Warrior Project by working with me and providing me with a link on the website so people may
directly make a donation to you. I believe in them and so should you.
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Author/Survivor: John Cooper
Thank you to the anonymous Wal-Mart clerk and grandmotherly-looking lady at the
D.M.V. for being YELLOW LIGHTS. Special thanks to the Wal-Mart lady for giving me that
strong heartfelt hug. I really needed it that day. I would have never expected a hug from a
stranger, yet alone a Wal-Mart clerk. Thank you to the all of the people that looked at me with
compassion and understanding.
Thank you to the H-OOOOOO-G-EEEEEY eating patient and my Mexican-bodyguardgentle-giant-of-a-roommate.
You made me realize how fortunate I was and that other people
have it worse off than me, and I must further learn to accept how lucky I really am.
Thank you to Georgina Perticari for taking the time to edit, re-edit and re-re-edit this
book. I greatly appreciate your support, hard work and precious time. Thank you for telling me,
“By reading your book, I felt like I was a fly on the wall following your journey while going
through a box of tissues crying during the sad moments and almost peeing my pants in laughter,
during the funny moments. This is an inspirational story you have written.” Thank you to my
wife, Laura, for finalizing the proofing and editing these past few months. Thank you to my
friend, Joe Hart, for your writing guidance and suggestions. I apologize for not taking your
advice on going with a publishing firm, as my new brain can’t take it all in. Thank you to Brian
Richardson from Greenhouse Films for shooting and producing my “Brain Go BOOM!” video.
And thank you to Brian Stasik from Design Star 3 for designing and printing my business cards.
Thank you for believing in my story. Thank you for believing in me.
To my family: Thank you for being there every day, Grace and Ron. Thank you for the
support and laughter you brought into our house and for forgiving me when I was acting like a
complete fool. Thanks for helping the girls thrive and taking over my roll. There is too much to
mention all that you have done. I love you. Thank you to Drewbie and Chris. Drewbie, you
stepped in and provided the girls with a temporary father figure while I was resting in bed, crying
at commercials. Grace thanks for being there for and for supporting Laura. You helped us
maintain our home as a source of support, understanding and unconditional love. You believe in
us.
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Thank you to my parents for teaching me at an early age to always help others and for
providing me the tools to make a difference in people’s lives. I know that you weren’t able to be
here 24/7 because you live and work in Florida, but your prayers and visits, your words of
encouragement pushed me further to be the person I was meant to be. You said to me, “You
were saved for a reason. You may not know why, but there is a reason.” Well, here you go
mom and dad; I think this book is a good starting point and I know it will make a difference in
other people’s lives. I couldn’t have imagined how they must have felt with the almost certain
likelihood of burying their own son. It’s not supposed to be like that in life. And I knew at the
initial onset and brain surgery that most people were thinking
that I wouldn’t make it out. The odds were strongly stacked
against me but, BOOM!, here I am. However, during the
course of editing this book, my father, Jack Cooper, passed
away. It saddens me that he will never get the opportunity to
read my story in full. But I know in my heart that he is
watching over me and with my mom, they believe in me.
Thank you to my father-in-law, Carl, and his wife, Carol, for making sure their daughter
was not falling apart at the seams and for offering their support and making things easier for us.
Thank you to my sister, Alison, and her husband, Howard, for spreading the word and getting
hundreds of people to pray for us. Thank you for making the 2-hour drive to visit me at the
hospital and rehab. They believe in me.
Thank you to Aunt Deb, Uncle Bob, Ashley, Caitlin, Uncle Wayne, Aunt Carolyn, Greg,
Brad, Uncle Ron, Aunt Sue, Ron, Chris, Aunt Pat, Natalie, Nicholas, Uncle Bob, Aunt Maryann,
Uncle Bud and Aunt Lorraine who visited me and supported me and Laura and our family.
Thank you to all of my friends and all of my family. If I forgot anyone, please realize that it is
impossible for me to mention everyone because of my terrible memory issue from the brain
injury. Thank you for believing in me.
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To my daughters, Emma and Eleanor, you gave me the strength to not quit. You showed
me that I could still be a good Daddy when I was walking around with my Corky helmet, during
my several thousand hours of rest periods and even now, when I walk around with Gimpy. You
taught me how to be a good soccer coach. You laugh with me, not at me, when, I uncontrollably
cry or when I break out with my new Revenge of the Nerds laughing episodes. Your
unconditional love has helped me more than you will ever know. You both possess wisdom far
beyond your years and your ever-loving hearts have never failed me. Thank you for inspiring
me to write this book. Daddy loves you. You both believe in me.
Thank you to my wife, Laura. A mere mention in this acknowledgement can never begin
to express my admiration and love for you. I can’t image what you must have felt like when they
loaded me onto the Brady Bunch helicopter, then finding out an hour later that I might die,
leaving you a widow and our daughters without a father. I can’t wrap my head around it and I
don’t think I ever will. I have no idea of how you got through it all. Every time I saw you, you
never look defeated, you looked beautiful. You would endearingly say, “We will get through
this.” You and our girls are the reason why I survived. When we talk and you tell me stories
about things I don’t remember, I still can’t believe it. I know you broke down and maybe even
had thoughts of calling it quits, but you didn’t. After awakening from the coma and seeing your
big, blue, beautiful eyes for the first time, and every day thereafter, your love has never faulted
nor failed me. Thank you for not giving in and not giving up. Thank you for being the best wife
a husband could ask for and the best mother our two girls could have. I LOVE YOU TO
INFINITY AND BEYOND. You believe in me, you believe in us and I believe in you, I believe
in us!
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Brain Go BOOM!
Author/Survivor: John Cooper
Brain Go BOOM!
Copyright ©2015 John Cooper
All rights reserved.
This book is protected by copyright. No part of it may be reproduced, stored in a retrieval
system, or transmitted in any form or by any means, electronic or otherwise; including email
forwarding attachments, mechanical, photocopying, recording, scanning, or otherwise, without
the prior written authorization of the author.
ISBN# 978-1-4951-5248-1 (eBook)
With regards to my Copyright privileges, it is unlawful to send a copy of my protected
book, in any format, to others. I ask that you redirect your friends and family members, to
download their own copy from the website: http://www.braingoboom.com/
Page 158 of 167

Brain Go BOOM!
Author/Survivor: John Cooper
Closing Note:
For those afflicted with a brain injury, our stories will never end. Be it a giant, ruptured brain
aneurysm, a soldier injured by a roadside IED, a car accident, or anyone that has suffered an
acquired or traumatic brain injury, including those stricken and with the often overlooked
depression.
The Battle Buddy Foundation:
With a veteran suicide rate averaging 22 every day, the work to support our nation’s veterans has
just begun once they return home. With over 10 times the amount of veterans lost to suicide than
to combat operations in the same time period, there has never been a more important time to
TAKE A STAND and DO something to support our veterans! Just because they come home,
doesn’t mean we stop supporting them!
That’s about one person, one precious life, every 65 minutes! These numbers are staggering and
downright appalling. Can you live with that? I can’t. I believe that if mental health
professionals are brought into the picture when troops are coming home from abroad or after an
aneurysm or any brain injury occurs, people will have an increased chance of becoming a
successful survivor versus living the life of a victim or, worse yet, taking their own life. It
sounds like common sense but things aren’t so common and many things don’t make much sense
to me anymore. Does this make sense to you? If it does, I urge you do something about it!
We suffered a life-altering injury where many of us were surgically repaired but, BOOM!, many
people still ASS-ume we’re fixed and we should just return to normal. Many times, we are
patched up enough to look presentable to others, while not loathing ourselves when we look in
the mirror. Some things will never get better and some things will.
Do you think I am fixed because I was able write this book? Do you think our veterans are fixed
because they may have received a special wheelchair or a new fancy, bionic-looking prosthetic
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leg? If you read my book with an open mind, you will know the obvious answer to these
questions.
Our families and friends are put through their own set of diverse challenges. They experience
just as much pain, if not more, during this journey. Imagine bearing witness to your loved one
walking that greasy tightrope daily. Every next move is unpredictable while everyone is hoping
that the next day was better than the last. I will never know the pain and anguish my family and
friends endured, nor could they ever imagine mine.
Recently, my mother-in-law confided in me that
people asked Laura how she did it and Laura’s
reply was, “I just knew I had to dig deeper.” Even
following my aneurysm and additional stroke,
Laura didn’t know how much more she could take, but she would “dig deeper.” As she dug
deeper, I refused to quit—most of the time. Many family members and friends saw her brave
acts and followed suit, but she was the one doing most of the heavy lifting.
I know that many other people have gone down or are starting to go down this path. I hope and
pray to Jesus on the cross that they or you have found some solstice in this book. I am very
fortunate to have survived because I have a great support system. If supportive people are hard
to come by in your present environment, please look into attending support group meetings and
search for that positive, supportive role model or mentor. They are out there. There are many
people out there willing to help, you just have to ask for it. All too often, we fail to ask for help
because our pride gets in the way or don’t know how to ask for it. Put your pride to the side and
please start asking for help.
I hope I have provided you with the information and insight to look and treat others differently,
with more understanding, compassion and respect. I hope I have motivated you to revaluate
some of your own preconceptions and have shed some light on any misconceptions you may
have had. By all means necessary don’t be a RED LIGHT, or I have failed my mission. Be that
bigger, better, supportive person and, “just dig deeper.”
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My best effort in starting to help and support others is having completed and sharing my story. I
can’t wait until I get healthier so I may do more. I hope that you will make that difference in
somebody’s life. Don’t start tomorrow, start today! Support is the key that everyone needs to
survive.
I have always set goals for myself and, most of the time, exceeded them. Completing this book
will be a giant achievement. There will be many more good things to come.
From the deepest depths of my soul, I appreciate you taking the time to read my story. I hope
that you laughed, cried and enjoyed being a fly on the wall in following my evolution from being
that of a victim of giant, ruptured brain aneurysm to that of becoming a survivor of one.
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About John:
John Cooper has written a story of man’s desire to fight for his life and survive the best way he
knows how. He shows that with the help and infinite love and support of his family and friends,
survival outweighs the failure to do so. John grew up in the Lawncrest section of Philadelphia.
Just as he held down many jobs and chose to change careers frequently in his adult life, he did
the same thing with schools, as he attended six. He started at Lawndale Elementary, then Saint
Williams, then Melrose Academy. In high school he attended Father Judge, Cardinal Dougherty
and North Penn. He joined the Navy Reserves and attended nursing school at Montgomery
County Community College, where he obtained his nursing (RN) degree.
By all means he was definitely the life of every party, but in a classy way. He would never do
anything to hurt someone. He has crossed the line many times but always in the best effort to
make people laugh and have people see the lighter side of life. He continually goes out of his
way to help others and remains a supportive friend to many. Dangling a dare in front of him was
like waving candy in front of a child. Very rarely did he turn down the opportunity to make
someone laugh, help another person or tackle a challenge head-on. I wouldn’t have expected
anything less of him when he was faced with his brain aneurysm. It was as if a higher power
was daring him to survive. When he was in the coma, we sat at his bedside and never wavered in
the belief that our “Coop” would not return. He resiliently broke through the thick concrete
walls that were directly in front of him. He has the internal and external scars to prove his
survival. His truly inspiring story will show many that, against all odds, he refused to succumb
to quitting or failing. He will never stop influencing and motivating people in his strong and
positive “Coop-like” manner. Brain Go BOOM! is proof of it. He remains crazy and funny,
always willing to help others and has conquered one of the most challenging circumstances a
human being could be faced with. Although he has many more challenging days in front of him,
I know that he will continue being “Coop”.
Written by Frank Afonso
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Resources and References:
The most common signs and symptoms I experienced are listed below, but I urge you to visit the BAF
website for a more detailed list.
The warning signs and symptoms of aneurysm:
Ruptured brain aneurysms usually result in a subarachnoid hemorrhage (SAH), which is defined as
bleeding into the subarachnoid space. When blood escapes into the space around the brain, it can
cause sudden symptoms. Seek Medical Attention Immediately If You Are Experiencing Some
Or All Of These Symptoms:
Sudden severe headache, the worst headache of your life
Loss of consciousness
Nausea/Vomiting
Stiff neck
Sudden blurred or double vision
Sudden pain above/behind the eye or difficulty seeing
Sudden change in mental status/awareness
Sudden trouble walking or dizziness
Sudden weakness and numbness
Sensitivity to light (photophobia)
Seizure
Drooping eyelid
Statistics: Brain Aneurysm Foundation
There is a brain aneurysm rupturing every 18 minutes.
There are almost 500,000 deaths worldwide each year caused by brain aneurysms and half the
victims are younger than 50.
About 40% of all people who have a ruptured brain aneurysm will die as a result. Of those who
survive, about 66% will suffer some permanent deficit.
4 out of 7 people who recover from a ruptured brain aneurysm will have disabilities.
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Following a subarachnoid hemorrhage, most patients will remain hospitalized for a minimum of two
weeks during which time they will be monitored for the development of cerebral vasospasm and other
complications of the hemorrhage.
Mission Statement:
Giant, ruptured brain aneurysm: National Institute of Neurological Disorders and Stroke:
http://www.ninds.nih.gov/disorders/cerebral_aneurysm/detail_cerebral_aneurysms.htm#259603098
Chapter 1:
Migraine: Wikipedia: https://en.wikipedia.org/wiki/Migraine/
Registered Nurse: Wikipedia: https://en.wikipedia.org/wiki/Registered_nurse
CAT scan: Wikipedia: https://en.wikipedia.org/wiki/X-ray_computed_tomography
MRA: Wikipedia: https://en.wikipedia.org/wiki/Magnetic_resonance_angiography
MCA: Wikipedia: https://en.wikipedia.org/wiki/Middle_cerebral_artery
SAH: Mayfield Clinic: http://www.mayfieldclinic.com/PE-SAH.HTM#.VTmgoJMnlIg
Thunderclap Headache: Wikipedia: http://en.wikipedia.org/wiki/Thunderclap_headache
Chapter 2:
Brady Bunch Station wagon: Google:
https://www.google.com/?gws_rd=ssl#q=brady+bunch+station+wagon
Chapter 3:
Craniotomy: Mayfield Clinic: http://www.mayfieldclinic.com/PE-Craniotomy.htm
Chapter 4:
Angels: Wikipedia: https://en.wikipedia.org/wiki/Angel
Johnny Cash: Wikipedia: https://en.wikipedia.org/wiki/Johnny_Cash
Johnny Cash Songs: YouTube: https://www.google.com/?gws_rd=ssl#q=youtube+johnny+cash&spell=1
Chapter 8:
Aneurysm Clipping: Mayfield Clinic: http://www.mayfieldclinic.com/PE-Clipping.htm
Moving Robot: NBC News: http://www.nbcnews.com/id/4946229/ns/health-health_care/t/robot-doctorgets-thumbs-up-patients/#.VSwi05MnlIg
Chapter 11:
Vasospasms: Wikepedia: https://en.wikipedia.org/wiki/Vasospasm
Breaking Bad: Wikipedia: https://en.wikipedia.org/wiki/Breaking_Bad
Chapter 13:
Cranioplasty: Wikipedia: http://en.wikipedia.org/wiki/Cranioplasty
TV Show, Life Goes On: Wikipedia: https://en.wikipedia.org/wiki/Life_Goes_On_(TV_series)
Olympic Theme Song: YouTube:
https://www.google.com/?gws_rd=ssl#q=youtube+olympic+theme+song
Apolo Uno: Wikipedia: https://en.wikipedia.org/wiki/Apolo_Ohno
ICU Delirium: Wikipedia: https://en.wikipedia.org/wiki/Delirium#Critical_illness
SOS signal: Wikipedia: http://en.wikipedia.org/wiki/SOS
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Chapter 14:
Rocky: Wikipedia: https://en.wikipedia.org/wiki/Rocky
Rocky Theme Song: YouTube:
https://www.google.com/?gws_rd=ssl#q=rocky+theme+song+gonna+fly+now
Chapter 15:
ICU: Wikipedia:https://en.wikipedia.org/wiki/Intensive_care_unit
Chapter 17:
Pg 35: The Old Man and The Sea: Wikipedia: https://en.wikipedia.org/wiki/The_Old_Man_and_the_Sea
Chapter 26:
It’s A Wonderful Life: Wikipedia: https://en.wikipedia.org/wiki/It%27s_a_Wonderful_Life
Chapter 30:
tPA: The American Stroke Association:
http://www.strokeassociation.org/STROKEORG/AboutStroke/Treatment/Stroke-
Treatments_UCM_310892_Article.jsp
Subarachnoid Hemorrhage: Neurosurgery and Endovascular Associates:
http://www.neuroendomke.com/brain-tumors-other-brain-disorders-and-brain-surgery/subarachnoid-andintracranial-hemorrhages/
Giant, ruptured brain aneurysm: The American Stroke Association:
http://www.strokeassociation.org/STROKEORG/AboutStroke/TypesofStroke/HemorrhagicBleeds/What-
You-Should-Know-About-Cerebral-Aneurysms_UCM_310103_Article.jsp
Ischemic Stroke: The American Stroke Association:
http://www.strokeassociation.org/STROKEORG/AboutStroke/TypesofStroke/IschemicClots/Ischemic-
Strokes-Clots_UCM_310939_Article.jsp
Basal Ganglia: The Ohio State University Wexner Medical Center:
https://patienteducation.osumc.edu/Documents/BasalGangliaStroke.pdf
Chapter 31:
Cranioplasty: Neurosurgical Associates PC: http://neurosurgicalassociatespc.com/cranioplasty/
Nosocomial Infections: Healthline.com: http://www.healthline.com/health/hospital-acquired-nosocomialinfections#Overview1
Chapter 36:
TIA: American Stroke Association:
http://www.strokeassociation.org/STROKEORG/AboutStroke/TypesofStroke/IschemicClots/Ischemic-
Strokes-Clots_UCM_310939_Article.jsp
CVA: American Stroke Association:
http://www.strokeassociation.org/STROKEORG/AboutStroke/TypesofStroke/IschemicClots/Ischemic-
Strokes-Clots_UCM_310939_Article.jsp
Chapter 38:
SAH: Wikipedia: https://en.wikipedia.org/wiki/Subarachnoid_hemorrhage
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Chapter 39:
PTSD: Wikipedia: https://en.wikipedia.org/wiki/Subarachnoid_hemorrhage
PBA: Wikipedia: https://en.wikipedia.org/wiki/Pseudobulbar_affect
“That’s Life:” Google:
https://www.google.com/?gws_rd=ssl#q=youtube%20frank%20sinatra%20that%27s%20life
Chapter 40:
Social Security Disability Insurance: Wikipedia:
https://en.wikipedia.org/wiki/Social_Security_Disability_Insurance
Chapter 41:
(MCA) ruptured brain aneurysm: Brain Aneurysm Foundation:
http://www.bafound.org/Understanding_the_Brain
Chapter 42:
Neurofatigue: www.braininjury-explanation.com: http://www.braininjury-explanation.com/unseenconsequenses-of-brain-injury/neurofatigue
ADHD: NIH: National Institute of Mental Health: www.nimh.nih.gov/health/publications/attentiondeficit-hyperactivity-disorder/index.shtml?rf=71264
ADHD Medication: Healthline: http://www.healthline.com/health/adhd/adderall-vs-ritalin#WhichOne?4
Simple partial seizures: Wikipedia: https://en.wikipedia.org/wiki/Partial_seizure
Chapter 45:
The Wounded Warrior Project: http://woundedwarriorproject.org/
Chapter 46:
“Watching My Six:” Urban Dictionary:
http://www.urbandictionary.com/define.php?term=watch+my+six
Medal of Honor: Wikipedia: http://en.wikipedia.org/wiki/Medal_of_Honor
Chapter 47:
Dystonia: Wikipedia: https://en.wikipedia.org/wiki/Dystonia
Basal ganglia: Wikipedia: https://en.wikipedia.org/wiki/Basal_ganglia
Botox: UF Center for Movement Disorders & Neurorestoration:
http://movementdisorders.ufhealth.org/for-patients/clinics/dystonia/botulinum-toxin-injections-fordystonia/
DEFCON: Wikipedia: http://en.wikipedia.org/wiki/DEFCON
Chapter 49:
Funeral Songs: YouTube: http://www.youtube.com/
Chapter 50:
“Popping Tags:” Wikipedia: https://en.wikipedia.org/wiki/Thrift_Shop
Concussion: WebMD: http://www.webmd.com/hw-popup/concussion-traumatic-brain-injury
Chapter 51:
99 bottles of beer on the wall, 99 bottles of beer: Wikipedia:
https://en.wikipedia.org/wiki/99_Bottles_of_Beer
The Ancient Order of Hibernians (A.O.H.) Division 3 http://www.aohdoylestown.com/
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Closing:
Veterans Suicide Rates: The Battle Buddy Foundation: http://www.tbbf.org/
IED: Wikipedia: http://en.wikipedia.org/wiki/Improvised_explosive_device
Brain Go BOOM!
Copyright ©2015 John Cooper
All rights reserved.
This book is protected by copyright. No part of it may be reproduced, stored in a retrieval
system, or transmitted in any form or by any means, electronic or otherwise; including email
forwarding attachments, mechanical, photocopying, recording, scanning, or otherwise, without
the prior written authorization of the author.
ISBN# 978-1-4951-5248-1 (eBook)
With regards to my copyright privileges, it is unlawful to send a copy of my protected
book, in any format, to others. I ask that you redirect your friends and family members to
download their own copy from the website: http://www.braingoboom.com/
Page 167 of 167