May 2008 - Epilepsy Australia

Martin RaffaeleSteppinga personal journeydeveloped epilepsy due to scar tissueI that formed on my left temporal lobefollowing two periods of complicatedfebrile convulsions in my first two yearsof life.I experienced absence and simplepartial seizures during my teenage years,but these were not recognized as seizureactivity. At the time it was thoughtthat the auras I was experiencing wereoccurring due to sinus problems.It was in my early twenties when Ibegan to experience complex partialseizures. Tests detected the tissuedamage caused by those febrileconvulsions so many years before and Iwas finally diagnosed with epilepsy.Singing was always an importantpart of my life, and from the age offifteen I received many scholarships tofurther my singing studies. Howeverthe scholarships discontinued not longafter I began to experience regularseizures, and while I had been trainingand working as a professional singer,the increasing frequency of the seizuresforced me to abandon my singing career.Not having received any epilepsy14 THE EPILEPSY REPORT MAY 2008education or support, I was unawarethat there were any guidelines for livingwith epilepsy. I believed if I could relaxenough and breathe through it, I couldcontrol my seizures. The consequencesof performing certain actions wereincomprehensible, such as swimmingalone in the surf. As a result I had aseizure while swimming and drowned.Thankfully a surf lifesaver was on thebeach and dragged me from the surf andresuscitated me.When I regained consciousness Ifound myself in the Intensive Care unitof Warriewood Hospital. I was told thatI had a large amount of sand in my lungsand that I was only alive because mylungs were so well developed due to myintensive singing training. All of thisoccurred because I had never been toldof the dangers of swimming alone.Over time I have experienced manyphysical injuries, including a dislocatedshoulder, broken foot, falling ontoa moving car, falling off a railwayplatform onto tracks, plus otherstoo numerous to mention, due to myseizures.Until I was made aware I was eligibleto receive a disability pension, Iworked at any job I could find. A stintat waiting tables saw me spilling redwine on models dresses while they wereattending important gatherings, anddropping trays of glasses and plates dueto shaking, a side effect of taking highlevels of epilim. Understandably, thiscareer did not last long.With the lack of understanding inthe community I began to withdrawfrom being involved in social activity.However, I was determined not to allowmy condition to control me and in 1997,at the age of 26, began studying at TheUniversity of New England.However I continued to have, onaverage, seven complex partial seizuresa week even though I was takinghigh levels of a combination of threemedications. Surgery was recommendedand in 1998 I had a left partial temporallobectomy.In 1999, around six months followingthe operation, I recommenced mystudies at the University of Sydney. Ihad been seizure free but by the Juneof ‘99 began, once again, to experiencea high level of seizure activity. Furtherneurological tests were carried out andit was found that the previous surgeryhad not been completed correctly andI underwent a second partial temporallobectomy in October, 2000.I received no support or educationfollowing either surgery on theimplications of this procedure. Itwas only my own investigation andthe reading of books such as, TheComprehensive Evaluation andTreatment of Epilepsy (Steven C.Schachter, Donald L. Schomer), thatI became aware of the symptoms and