In My Own Words

Each day, I walk to the store or ride my bike to the post office in our small town and consider myself lucky. I realize that living and coping with the unpredictable nature of epilepsy pales in comparison to the problems of many other people.

But epilepsy is my problem and it is very real, and very disruptive.

I was a typical 18-year-old senior at Torrington High School, in Connecticut, who hung out with my friends, played sports, and worked part-time. But choosing a college wasn’t the only life-changing decision I had to make. This was the year—1986—that I was diagnosed with epilepsy.

The initial sign was an odd,tunnel-like view that made me feel like I was being drawn to a dark, unfamiliar state. The neurologist called it an aura. The aura, I discovered, was a preview to the main event: an absence seizure. I’ve had hundreds since that first confusing day.

Though painless, the seizures have the power to turn me off like a light switch at any time, anywhere. Now, 22 years later, seizures that last only a few seconds oftenl eave me exhausted and confused. I often need hours of sleep in the aftermath to clear my head. Still, I can’t complain. I wasn’t about to let epilepsy dictate what I would do with my life. In 1992 I was optimistic that a temporal lobectomy operation in Boston would succeed. It failed.

A short time later, a boyhood friend, who lived in Arizona, Sean Abbott, suggested that I move out there. I agreed and soon began living what I consider to be the most important chapter of my life, 3,000 miles away.

Depending on a bus and bicycle for transportation, I graduated from Scottsdale Community College with a degree in early childhood education. I also worked many jobs, including stocking shelves, being a preschool teacher’s assistant and auditing with Arthur Anderson. Due to frequent seizure activity, however, most of the jobs didn’t last very long. Still, I kept moving forward and eventually landed a secure job at the Scottsdale Plaza Resort, whose management was patient enough to learn about epilepsy and to ask what precautions should be taken if I had a seizure.They helped make it work and for that I am forever grateful because it was there that I met my wife Annette.

Since I was first diagnosed, myself-confidence has waned a bit. Annette, however, has supported and encouraged me since the day we met in 1995. Five years later we married.

Because of her, I’ve done a better job liking myself, letting my limitations slide off my shoulders. I’ve also been able to live a fairly normal life because I know Annette will always love me for who I am. Still, this doesn’t mean I get off easy.

For example, as a devoted husband and loving father to our five year old son, Eric, I have responsibilities that I believe help keep all of our lives in order. Eric’s always willing to play and play we do, although, with a possible seizure always looming, our options are usually limited to indoor activities like board games, wrestling, reading, and Eric’s favorites: singing and dancing.

Also, I have discovered writing. My father and two of my brothers are newspaper reporters and writers and I have been frequently published over the past two years in a local newspaper. I have found it satisfying and rewarding.

I hope I’ve given hope to others who are left to battle this mysterious disorder. The way I see it, everyone must overcome a certain obstacle or obstacles in their quest tolive full and happy lives. Epilepsy is my biggest obstacle, and though it may have limited me slightly, I’ll never stop living life to the fullest in my ongoing search for a cure. 

IN MY OWN WORDS is a column featuring the voices of people affected by epilepsy.