The Odyssey of Hearing Loss: Tales of Triumph for Families

The Odyssey of Hearing Loss:
Tales of Triumph for Families
Hearing Loss Association of
America
June 23, 2012
Michael A. Harvey, Ph.D.
508-872-9442
mharvey2000@comcast.net

Artwork by Nick Curtin, a
15-year old deaf boy.
“The two towers are
weeping and hugging as
they collapse.”

“I’m not saying I don’t have intimacy issues. I’m just saying
that I prefer to work on them myself.”

My background

Our Agenda
� Common couples dynamics
� Adolescent hearing loss issues
� Externalizing hearing loss
� Family tales

Couples Issues

“Me and your granddad have been married for sixty
years, but he still whispers sweet nothings into my
hearing aid.”

Challenges for HOH couples
Minimizing effects of HL
Communication mishaps: falsely assuming
understanding.
For most common configuration of HL (high freq)
beware of consonants: /s/, /sh/, /t/, /th/, /ch/, /p/, /k/,
/h/, /g/.

Can you guess what this says???
Only vowels:
I _ _ i _ _ _ _ a _ i _ _ _ _ _ o _ _ _ o _
a _.
Only consonants:
_ t h _ n k t h _ t _ t m _ y s n _ w t _ d
_ y.
I t h i n k t h a t i t m a y s no w t o d a y.

Aoccdrnig to a rscheearch at Cmabrigde Uinervtisy, it deosn't
mttaer in waht oredr the ltteers in a wrod are, the olny iprmoetnt
tihng is taht the frist and lsat ltteer be at the rghit pclae. The rset
can be a total mses and you can sitll raed it wouthit porbelms.
Tihs is bcuseae the huamn mnid deos not raed ervey lteter by
istlef, but the wrod as a wlohe.

Challenges of “hoh” couples cont.
Managing betrayal for being misunderstood/left out
Balancing HOH and H: both spouses have needs
H spouse self-care

"It is the rare individual who looks at me and asks me how I am
doing; almost everyone wants to know, and it's understandable,
how my wife is. Occasionally though, I need some attention.
When I do ask for attention, it is always tinged with guilt as
though I do not have the right to complain. People almost
always look at the person in the wheelchair, seldom at the
person pushing it.”
David Luterman
The shadow spouse

Challenges of “hoh” couples cont.
The good-enough hearing partner
Hoh spouse displacing anger on the H spouse
H spouse bearing witness to oppression

The importance of relationships
Finding the right balance
Similar others Dissimilar others

"Denial ain't just a river in Egypt."
Mark Twain

You must first understand your own feelings
before you can effectively relate to your hoh
spouse
Common thoughts & feelings of hearing spouses re
hoh’s denial
• I feel so bad for him. He’s going through a rough time..
• Don’t you see you need help? You’re in denial!
• Go get hearing aids! You’re being selfish
• If you really loved me, you would…
• I feel sooooo alone

Beware of Co-dependence
This is NOT merely reaching out to help your loved one hear
better.
“If you habitually become the ears for your hearing spouse,
giving into his demands against your better judgment, repeating
what he misses, interpreting messages, making him feel he’s
okay as he is without the need to seek any remedy for his
hearing problem – you are in a co-dependent relationship.”
Richard Carmen

Tips to reduce codependent behavior
� Stop supporting a system of communication that doesn’t
work. The illusion that one’s hearing is normal is
reinforced when others do not identify “the misses.”
� Need to understand psychological reasons why your
loved one is resisting help What stage of change
� Don’t be his ears
� Accept that he will fail in communication; it’s part of a
process toward treatment
� Control your fear of conflict with him

Tips to reduce codependent behavior continued
� Accept that if he doesn’t change, it’s not your fault.
Horse/water theory
� Give him choices, options and helpful alternatives, but do
not give him demands, threats and consequences.
� Stop repeating yourself & raising your voice
� Don’t be his interpreter on the telephone
� Find a code for pointing out that he needs help with
hearing

Marital Policies and Procedures
“Marriage isn’t just a spiritual communion,
it’s also negotiating who takes out the trash.”

Every day except May 19th

May 19 th !!!!!

2 by 3

The three most important words:
� Communication,
� Communication, &
� Communication

Need for policies & procedures for
COMMUNICATION

Be proactive, not reactive
Communication Policies
Be patient, relaxed, non-accusatory and look for the humor
H: don’t yell from other room; HOH: don’t start communication
from other room
Instead of asking “Do you understand?” work out way to verify
communication. ie hoh spouse to repeat what hrng spouse said.
Agree on ways to distinguish whether hoh spouse is withdrawing
verses not understanding. ie Ask.

Communication Policies cont
Agree on finite expectations for H interpreting
Reduce background noise -- e.g., preferential seating in
restaurants, request music be turned down
Maximize visual cues – e.g., Move closer with face to face
visual contact, keep things away from mouth, reduce
background lighting, ensure ample light
Maximize gestures
Context: Help hoh anticipate what you say
Beware of prosody (speed at which you speak)
Vary how you repeat something hoh has missed. Rephrase with
different words.

Story submitted by Dr. Richard Byrnes
“At the beginning of my shift, I placed a
stethoscope on an elderly and slightly deaf
female patient's anterior chest wall. 'Big
breaths,' I instructed. 'Yes, they used to be,'
replied the patient.”

Adolescence
Adolescence begins when
children stop asking
questions, because they
know all the answers.

Importance of collaboration

Reconciling one’s identity
crisis
“What would you like to be called?”
Are you
deaf?
Deaf?
Hard-of-hearing?
Hearing impaired?
Person with a hearing loss?

Reconciling one’s identity
crisis

Attempting to collaborate with
Paul (15 y/o, hoh male)
First 5 minutes of session #1
Paul shouted, “I don’t need hearing aids! And tell my mom I don’t
need to be dragged in here for counseling.”
“Why don’t you need hearing aids?” I asked.
“They don’t help me understand anything better.”
“How much do you think you understand at school without them?”
“It doesn’t matter,” Paul replied. “School’s boring. I’m gonna be
a fisherman like my dad. You don’t need hearing aids to fish.”

My proposal to Paul:
“You’ll wear your hearing aids every day at school for the next
month. Every morning before you wake up, your father will
remove your HA battery or leave it in, according to a coin flip.
He’ll then give the HA to your mother who will give it to you.
Neither you, your mother nor your teachers at school will know if
the batteries are in or not.
Every day, you and your teachers will estimate what percentage of
classroom conversation you’re able to understand. At the end of the
month, we’ll correlate when your HA were working with your and
your teacher’s estimations of how much you understood.”

%
understood
80
70
60
50
40
30
20
10
0
Paul’s data
Self Teacher
Rater
On
Off

Attempting to collaborate with Bob (16 y/o, hoh male)
“You don’t wanna be here, do you?”
He shook his head.
“Neither do I. What would you rather be doing?”
“Hanging out” he grunted.
“Me too. Looks like we’re stuck with each other for a while.”
No response.
“How would you hang out if you didn’t have to be here?” I asked.
“I hang out in my bedroom, but my mom’s always badgering me to clean it up.”
“Like what I don’t do when I’m cooking, you don’t make a mess, right?”
“You got that right” he agreed.
“I’ll convince your mother if you convince my wife?”
First a smirk, then a nod!

family
Roots and wings: Receiving family
support for gaining autonomy:

The hearing sibling:
Pam’s letter

“Externalizing Hearing
Loss

Narrative therapy
Michael White

Extern ques
What do you notice about these questions?
• “What has the Guilt tried to talk you into about yourself?”
• “How has the Fear tried to convince you that it’s unsafe to go
out of your house?”
• “How long has the Jealousy been trying to get between you and
your friends?”
• “What does the Blame have you doing with each other?”
• “How much does the Bickering get in the way of your
conversations?”

We have a relationship with our problems
Depression
Depression
Not “I am depressed.”
Rather, “I am affected
by the depression.”

One has a relationship with a Hearing Loss
Hearing loss
Hearing Loss
Not “I have a HL.”
Not “I am hearing
impaired.”
Rather, “I am affected
by the hearing loss.”

The person is not the problem;
the problem is the problem.
Patient Therapist
“I am unmotivated” = “The problem has affected your
energy level.”
“I am depressed” = “The depression makes it hard for you
to go out.”
“I am a worrier” = “The worry tries to stop you for trying
new things.
”
“I am hearing impaired” = “The HL tries to isolate you from
people.”

Example 1: 67 y/o Fred: “I came here to get my wife off
my back.”
First minute; first session
“What’s your wife on your back about?” I asked.
“What?” Fred asked.
“What’s your wife on your back about?”
“Oh, she wants me to get hearing aids.”
“It sounds like a battle between you and your wife,” I said.
“What about my wife?” Fred asked.

“Bear with me, would you? Imagine, please, that the hearing
loss is sitting in the empty seat in front of you. It’s so smart that
it can even sit! What does it look like? How big is it? What
color? What’s it wearing? Is it friendly or mean? What’s its
name?”
“It’s dark and heavy, real strong, over 6 feet tall, has bulging
muscles and is wearing an Army uniform. And it’s mean,
real mean. His name is Joker [Batman’s nemesis].”

We Externalized the Hearing Loss
Therapist
Fred
The HL

“The inability to understand the enemy was
‘the basic error’ in the conduct of the war in
Vietnam.”
General William Westmoreland

Exploring the history and current effects
of the problem (e.g., HL)
1) Eliciting a particular description of problem [eg., the Joker]
2) Mapping the effect of the problem [conflicts w spouse]
3) Eliciting one’s position or sentiments re the effects of
problem’s activities [don’t like it]
4) Eliciting the why??? The person’s personal explanation or
justification for that position/sentiments [I value my
marriage]

1) Eliciting an experience-near description of the
problem
What form(s) does the it take?
What do you call it? What is its name?
What do you imagine it looks like? Big, small, heavy, light?
What is its personality? Mean, friendly?
What is its strength, weakness?
If it had a voice, what would it say?

Example 2: Sue
Audiologist
Pt
The Eternal Eclipse
“My HL is like a shadow, like when the moon
eclipses the sun. It’s an eclipse that leaves me in the
dark and cold. It’s an eternal eclipse because it’s not
temporary like others. It’s huge, very heavy and very
dark. An eternal eclipse.”

Example 3
9 y/o Jason’s drawing of “The Hearing Loss”
“The HL is a mean, green,
strong, pointy-eared
monster. . . I’m not sure
what he wants. . . He wants
me to hear worse.”

Impt announcement: New Names for Hearing Loss

2) Mapping the effect of the problem
Investigating how the HL has succeeded in disrupting
and has failed to disrupt one’s life.
Audiologist
Pt
The Joker
The Eternal Eclipse
pointy-eared monster

An inquiry into the HL’s successes:
� The HL’s influence in the different areas of one’s life (e.g.,
its effects on the one’s relationships with others, on one’s
feelings, on one’s thoughts, on one’s story about who s/he is
a person)
� The strategies, the techniques, deceits, and tricks that the HL
has resorted to in its efforts to get the upper-hand in one’s
life.
� The special qualities possessed by the HL that it depends
upon to undermine the one’s knowledge and skills and to
impose its authority on the one’s life.

Examples of investigative reporter questions re HL’s successes, continued:
An inquiry into:
� The purposes that guide the HL’s attempts to dominate one’s
life, and the dreams and hopes that the HL has for one’s life.
� Who helps with the HL achieve its goals?
� The plans that the HL has ready to put into action should its
dominance be threatened.

Ext. Conv. Exercise cont.
An inquiry into the HL’s failures:
� What aspects of one’s life that s/he still has some
influence despite the HL’s influences.
� The counter-techniques, counter-strategies, and the tricks
that have been developed by the person that have at times
been effective in preventing the HL to get the upper hand
and impose its authority on one’s life.
� The special qualities, knowledge, and skills possessed by
the person that have proven difficult for the HL to
undermine and to disqualify – including the "self-talk"
that one has developed .

Ext. Conv. Exercise cont.
An inquiry into:
� The purposes and commitments that have frustrated the
dreams and the hopes of the HL.
� Who stands with the person (relatives, friends,
acquaintances, teachers, therapists, and so on), and the
part they have played in denying the HL’s desires and
wishes.
� The options that are available to a person for taking
advantage of the HL’s vulnerabilities and for reclaiming
his/her own life.

Re Fred: For the next several sessions, I would
investigate:
� The hearing loss’s influence in the different areas of the
Fred’s life;
� The strategies, the techniques, the deceits, and the tricks that
the hearing loss has resorted to in its efforts to get the upperhand
in Fred’s life;
� The special qualities possessed by the hearing loss that it
depends upon to undermine Fred’s knowledge and skills;
� Who helps the hearing loss achieve its goals; and
� The plans that the hearing loss has ready to put into action
should its dominance be threatened.

Fred’s summary of the effects of the HL
“It [HL]turns my wife into a nag, shuts me out from family
gatherings, makes me feel lousy and depressed and angry . . .
Maybe one of the hearing loss’s tricks is that it makes me think
that other people are mumbling. The hearing loss is very smart
and real tricky. The hearing loss wants control of me, probably
because it has nothing better to do. He screws up my
relationships so even my wife makes me come here to play this
stupid game – no offense, doc.”
“No offense taken,” I smiled.

3. Eliciting the person’s position or sentiments re the
effects of the problem
“Why do you think the problem is a problem?”
“Are these (the problem’s) activities okay with you?”
“Where do you stand on these outcomes?”
“What’s it like for you?”

Invitations to pause and reflect on the effects of the problem
is often a novel experience. Frequently, this sort of
evaluation is undertaken by others: parents, doctors,
therapists, etc.

4. Explaining one’s justification for his/her
position/sentiment
Persons articulate what they value about their lives and
identities; their longings, values, hopes, dreams,
commitments; what is precious to them
e.g., “Why do you think you’re taking this stand/position
re the problems?”; “Why is this not okay (or okay)?”
e.g., “Would you tell me a story about your life that would
help me to understand why you would take this position
re your problems?”

Eliciting Fred’s position re the effects of the problem and
his justification for his position:
T: “Do you like the fact that the Joker is beating your ass?”
C: “Of course not. That’s a stupid question!”
T: “It may seem obvious to you, but some people are more
resigned and aren’t up for a fight.”
C: “Well, I’m a fighter. I’m a fighter from way back!”
T: “Who taught you to fight?”
Fred said his long decreased grandfather was a Second
Lieutenant in World War II. I asked Fred several questions
about his grandfather’s life, about why he joined the Armed
Forces, about his bravery, what his fears might have been,
how he might have felt going to battle.

T: “You aspire to be like him, you admire his bravery?”
C: “Yeah.”
T: “What advice do you think the Second Lieutenant would
have for how you can prevent the hearing loss from getting the
upper hand in your life?”
C: “He would advise me to learn as much as you can about its
weaknesses, its vulnerabilities. And he’d make my wife stop
calling me from the other room.”
T: “A good start, but speaking of your wife, help me
understand something. You came to therapy to get Wilma off
your back about hearing aids, but wouldn’t getting hearing
aids be an effective weapon against the hearing loss?”

C: “Yeah, probably,” he said, somewhat hesitantly.
T: “So why won’t you listen to her?”
C: “I’ve always been stubborn. I never want to lose a battle.”
T: “But the enemy is the hearing loss [motions to the hearing
loss chair], not Wilma! I bet that one of hearing loss’s tricks is
to get you to fire artillery at your own forces! In fact, the war is
you and Wilma against the hearing loss!”
C: “The hearing loss is very cunning,” while now nodding his
head.
T: “Astute observation, Lieutenant! How do you think Fred
could maneuver around these forces of the hearing loss to get
hearing aids?”

C: “Shock and awe!” he yelled, now enjoying this discussion.
“Regime change! I can blow hearing loss out of the water!” the
Lieutenant proclaimed.
T: “The hearing loss is a formidable enemy. Simple sanctions
obviously aren’t going to work. You, Wilma and the Lieutenant
need to join forces and launch a full scale military campaign with
covert and overt special combat operations against the hearing
loss! Maximize your fire power with air, naval, land invasions to
strategic targets . . .
Can the three of you [Fred, Wilma, & the Lieutenant] be ready to
present a comprehensive battle plan in my office tomorrow at 18hundred
hours?”
C: “Aye aye sir!”, Fred saluted.

At 18-hundred hours, we formulated the battle plan
� An audiological evaluation to learn more about the
hearing loss (“ reconnaissance mission”);
� Putting aside monies to purchase hearing aids
(“weaponry”) and batteries (“ammunition”);
� Taking speech reading classes (“combat training”);
� Taking an introductory sign class (“more combat
training”);
� Negotiating communication rules (“code of conduct”).

Example 2: Sue
Audiologist
Pt
The Eternal Eclipse
“My HL is like a shadow, like when the moon
eclipses the sun. It’s an eclipse that leaves me in the
dark and cold. It’s an eternal eclipse because it’s not
temporary like others. It’s huge, very heavy and very
dark. An eternal eclipse.”

Example 2: Sue
MH: “What does the eclipse shadow get you to think, to feel?
Sue: “I feel cold, lonely, sad, away from people, and worthless”.
MH: “What relationships does the shadow mostly affect?”
Sue: “It shuts me out from my grandchildren cuz I can’t understand
what they’re saying. Same with my boss at work and I’m afraid of
losing my job. It makes me feel hopeless, that’s there’s nothing I
can do. It cuts me off from everybody!”
MH: “What do you envision for your life if the shadow doesn’t go
away?”
Sue remained silent, slumped in her chair and shook her head. “It
darkens everything.”

Example 2: Sue
3. Eliciting Sue’s sentiments about the effects of the
eternal eclipse shadow
MH: “Do you like, do you approve of what the shadow takes away
from your life?”
Sue: “What do you think, doc,” Sue retorted.
MH: “You’ve told me you don’t like it at all, that it makes you very
depressed and lonely, but I want to make sure I don’t make
assumptions.”
Sue: “I hate it. It’s destroying any career aspirations I may have.
It’s causing other people to think of me as a snob, since they think
I’m ignoring them.” She continued for several minutes.

Example 2: Sue
4. Eliciting Sue’s justification for her sentiments about the
effects of the eternal eclipse shadow
MH: “Sue, would you say more about why the shadow is a problem
for you? What values do you cherish that are being taken away by the
shadow? Do you have a story you’d tell me that can shed some light
on this?”
Sue: “Connecting with people is important to me.

Finding potential benefits in adversity
Crisis = Danger and Opportunity

Wisdom is from
Enlightenment
&
Endarkenment

e.g., 9 y/o Jason
Jason The HL
“The HL is a mean, green, strong,
pointy-eared monster. . . I’m not
sure what he wants. . . He wants
me to hear worse.”

“It’s strong, real mean and will take over my ears.”
“What would you like to do to it?”
“Walk away.”
The tactics of the HL toward Jason
“Then what will happen?”
“It’ll chase me.”
“When the HL sees your HA, what do you think it’ll do?”
“He (HL) gets mad at the HA, cuz it’s supposed to make me
hear better. He’ll probably go bother someone else.”

“Ann’s” story