Learning to accept a life with epilepsy

I came into the world on June 8, 1972, a dream come true for my mother. However, I gave my parents an unexpected shock by immediately going into 10 hours of fetal distress, which caused my heart rate to drop. The doctors took their good old time getting me out by C-section. Then for four days straight they connected me to all these crazy tubes and wires to keep me alive while my body decided to have non-stop convulsions. But my stubbornness and the grace of God allowed me to survive.

I grew up a relatively healthy boy who loved to play, but at age 10 I contracted viral meningitis. A few months later, while sledding in the park, I had a seizure at the bottom of the hill. It was scary. The world was spinning; I was throwing up and screaming. After many tests, I was diagnosed with epilepsy.

The seizures continued, and I spent several frustrating years of medical trial and error. Dilantin gave me a rash. Phenobarbital made me very, very irritable. But a stubborn part of me never allowed this demon to knock me down totally. With this internal strength and the help of a supportive family, I was able to get through school. My graduation from Cheltenham High School in 1991 was a lifetime milestone I will never forget.

I went on to take a few part-time jobs until I landed a job at my church. From 1995 through 2001, I lived a life of constant Grand Mal (or Tonic-Clonic) seizures, a type of generalized seizure that affects the entire brain, making college impossible for me. The mixes of medication never could lessen the severity of my seizures until I was put on Trileptal along with two other anti-convulsive medications.

With milder seizures, I had the opportunity enroll at Philadelphia Community College. I lasted only a week. My sensitive nervous system could not handle the stress of higher education. At the same time one of my medications had a side effect that put me emotionally out of control, which landed me in the psych unit! This experience forced me to start a journey of individual therapy and antidepressants.

I was not happy making the decision to get therapy. I walked out of my therapist’s office more than once. It is very hard for me to admit I need help from another person! I used to say to my therapist: “I am paying you to listen to what I can tell a friend.”

However, as the years went by, my weekly sessions with her progressed. Eventually, therapy of tough questions, self-revelations and even crying began to help me deal with living with epilepsy. At the end of 2012, I was able to fully accept epilepsy as part of my life. What a peaceful feeling! It could not have happened without my therapist’s help.

The bonus of my experience over the last 30 years: I am now an advocate and public speaker for epilepsy! Only God knows what is next as my story continues to unfold!