Telling the story about your life’s journey with epilepsy can sometimes be about struggle, frustration, despair, depression, being dependent or hopelessness. As you read my story you might see things that bring those words to mind but don’t let epilepsy or a seizure disorder steal your passion for life.
I’ll begin my story by telling you what my life is like today. I hope that by sharing my story that others who have epilepsy will begin to see the possibilities in their lives as well. No matter where you are in your life journey right now, there are possibilities and change is simply waiting for you.
I am currently a therapist working with two different programs that are a part of the Mon-Yough Community Services Organization and I love my job. I am a certified Field Instructor for the University of Pittsburgh’s School of Social Work. I am a Big Brother with the East Liberty Big Brothers Big Sisters organization and a member of the Community College of Allegheny County (CCAC) Act 101 Advisory Committee. I am also proud to say that I’ve been sober for five years and that I stopped smoking three years ago.
I didn’t get here on my own. I needed a plan for change and the personal motivation to accept the help that was available to me. I’ve achieved more in life than I could have ever imagined as a young man. But in order for me to achieve my goals, I first had to deal with my epilepsy, depression, anger and alcoholism.
After years of struggling with my epilepsy, anger, depression and alcoholism, I was offered a chance to attend CCAC and participate in the Act 101 program that provides an abundance of resources, counseling, academic advising, tutoring and moral support. I had to use all of these resources to get past my many challenges. I was 30 at the time and this opportunity came to me after many years of allowing myself to be dependent upon welfare and Social Security benefits.
Mid-way through my first semester at CCAC I lost my father to cancer after a long struggle. My initial reaction was predictable — anger and an urge to use his death as an excuse to quit. But the folks at the Act 101 program at CCAC, Tom Canada and my tutor Ann Tanski helped me to develop a plan and the personal motivating it was going to take to succeed. Eventually, I dedicated myself to school full time spending as many as 8 — 12 hours a day at school. I became a regular on the Dean’s List at CCAC and received an Associate’s Degree in Corrections Administration. This single achievement in my life gave me back the confidence that I needed to go to complete a Bachelor’s degree in Social Work from the University of Pittsburgh and eventually a Master of Social Work degree.
Epilepsy has been with me all of my life and for many years it had a devastating affect on me. I had my first seizure when I was just two years old and fell from a window. I sometimes had as many as 12 grand mal seizures a day when I was a kid. I often wore a football helmet to protect myself from serious injury. When I was just five, I had a seizure while playing on a porch and fell again, this time 15 feet. At nine, I had 30 consecutive seizures in only an hour and nearly died.
My early childhood was constantly interrupted by visits to the emergency room. Then there were the regular EEGs, MRIs, PET scans, CAT scans, Spinal Taps and medication after medication in attempts to control my seizures.
Despite everyone’s best efforts, my parents divorced when I was very young and the family separated. Ultimately, I ended up living with my dad, brothers and grandmother. Though intentions were good, there was a lot of conflict, arguing, resentment and I felt a lot of guilt because I figured that my epilepsy was a big part of the problem.
At school no one seemed to understand my epilepsy and I was shunned and belittled by my classmates. Names like “seizure boy” and “pill boy” took my desire to go to school away and eventually my lack of interest in school gave way to plain old anger. I was labeled “incorrigible” by the child welfare system and I spent 7 years in juvenile institutions like the McIntyre Shelter, Bradley Home and the New Castle Youth Development Center.
By the age of 17 I was abusing alcohol, I was depressed and my anger intensified. I had trouble accepting the fact that I couldn’t drive a car. That reminded me that I was different, it made me feel vulnerable and dependent. These negative emotions only created more anger when I ended up on welfare and Supplemental Security Income (SSI) for several years.
And then it happened, the opportunity for change. When I met Tom Canada and my tutor Ann Tanski it was a turning point in my life. I decided to accept my limitations but at the same time I learned to recognize my strengths and abilities.
Life can be different for those of us who have epilepsy. But it doesn’t have to mean that you live a life without hope and possibilities. Let the Epilepsy Foundation Western/Central Pennsylvania help you to take control of your medical condition so that you can take control of your life.