Samuel Inglese
Boulder, CO

Type of epilepsy: complex, partial and grand mal

When were you first diagnosed, and what were your thoughts after the diagnosis? My first attack came in college at New York University during a racquetball game at age 19. They returned every four to six months. I looked in the mirror and strongly and sternly told myself, “Ok, that was the last one.” And as medications failed, my belief in myself never ended as I made that statement after every attack – on the sidewalks of NYC, inside homes, work, play and even with my first lover in the most unimaginable moment.

 

What’s the hardest part about having epilepsy? Being able to keep a job since the attacks reached two to three times a month. And I love acting. It’s always been my passion, beginning at age 7 as the Scarecrow in “Peter Rabbit” in first grade.

After graduating from theatre at NYU, the attacks were only two to four times a year. As I aged and medications failed, they grew in frequency. I kept my faith and my words for years until my first off-off Broadway production, when an attack occurred during dress rehearsal. They were happening every four to six weeks, and I began to lose faith in whether or not I had the right to place my cast and crew in this situation. Over the next few years as they grew, I sadly chose to stop live theatre and focus on film and TV, where they could just call “CUT” and wait half an hour or so for me to reawaken and return.

So often, I have days where I feel nothing can touch me, my strength and capabilities. I’m still a great actor. But it takes only a week for conflicts to arise and the risks of seizures to return. Acting in student films proves to me and others that my talents and passions never stop growing. And even though my seizures have built a wall, it’s one I’ll never stop searching to find a way to the other side. To circle, to climb, to crawl under, to destroy – all or one.

Acting is a love I cannot destroy, and it’s the greatest struggle of my mind and heart. They’ll never stop searching for the key to the society that will appreciate and take full advantage of my talent, recognizing its value beyond the brief conflicts of this disease.

What is one of your greatest successes despite having epilepsy? I produced and directed an hour-long documentary that aired on numerous local PBS stations called “Spirit of a Subculture, Bike Messengers in Chicago.” I’ve also begun my first novel.

How do you manage your epilepsy? After 27 years of assorted combinations of medications and a VNS [vagus nerve stimulation] implant – none of which worked – I looked at myself and decided my goal should be to live the healthiest life possible and not live with the many side effects prescriptions gave me. I reduced my meds to just Lamotrigine and Lyrica to broaden my ability to think, play, love and understand faster. And I stopped trying new additions unless something amazing is introduced.

What advice do you have for people who are newly diagnosed? Never lose confidence or self-respect outside. Have patience and do not lose faith. Our condition has no medication that starts tomorrow and allows time to discover if your brain will cooperate. But read up on each prescription on your doctor’s chart and be aware of physical and emotional side effects that may occur. Pay attention to yourself, both inside and out. Take full advantage of what your doctor knows, but have respect for yourself and any thoughts and questions you have.

What do you want others to know about epilepsy? It’s not a 24-hour-a -day, seven-days-a-week disability. Between our attacks we can accomplish as much, if not more, than most people. Do not fear us, do not limit us. Accept us, keep us safe during a seizure and then let us get up and move on from where we left off.