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The Speak Up blog features essays and poetry by people living with neurologic disorders and their caregivers. Readers can also find letters to the editor.
Tuesday, October 01, 2013
Life's Surprises: An Unfolding Story With Epilepsy

By Dan Dougherty

 

 

In late spring of 1972, I was still a dream of my mother’s.  On June 8th of that year, her dream was fulfilled as I came into the world. However, I gave my parents the unexpected shock of a lifetime: I went into fetal distress, and for four days straight, I experienced non-stop convulsions while I was in the hospital with all these crazy tubes and wires connected to me. It was my stubbornness and the grace of God that allowed me to survive. However, the seizures left scar tissue in my brain.

In spite of that start, I was a relatively healthy boy who loved to play. But when I was 10 years old, I contracted viral meningitis. Then, a few months later, I was sledding in the park and had a seizure at the bottom of the hill. (My doctors think that the scar tissue from the trauma at birth made me more susceptible to seizures later.) The seizure terrified me. The world was spinning and I vomited and screamed. After many tests, I was diagnosed with epilepsy.

I continued to have seizures and experienced the trial-and-error process of trying to find the right medications. Phenytoin (Dilantin) gave me a rash. Phenobarbital made me very, very irritable. These years of trial and error had been frustrating, but a stubborn part of me never allowed epilepsy to knock me down totally. This internal strength and a supportive family allowed me to get through school until I finally graduated from Cheltenham High School in 1991—a lifetime milestone that I’ll never forget.

I went on to take a few part-time jobs until I landed a job at my church for seven years, starting in 1995. During this whole period up to and including 2001, I lived a life of constant tonic-clonic (also called grand mal) seizures, a type of seizure that affects the entire brain. The medications never really helped lessen the seizures until I was put on oxcarbazepine (Trileptal) along with two other antiepileptic drugs.

Finally, with less severe seizures, I had the opportunity to go onto college. I entered Philadelphia Community College but only lasted a week—my sensitive nervous system could not handle the stress of higher education. At the same time, I was taking a medication for seizures that had a side effect that put me emotionally out of control, and I landed in the psychiatric unit of a nearby hospital. This experience forced me to start a journey of individual therapy and antidepressants.

I would like to begin by saying I was not happy making the decision to get therapy.  I walked out of the therapist office a couple times. It is very hard to admit I need help from another person!  I used to say to my therapist, “I’m paying you to listen to what I can tell a friend.” But as the years went by, my weekly therapy sessions—which often resulted in tears—eventually helped me deal with the fact of my epilepsy.

Here I am, 41 years old, fully accepting uncontrolled epilepsy as part of my life. What a peaceful feeling! This could not have happened without my therapist’s help. The bonus of my past experience of 30 years: I am now an advocate and public speaker for people with epilepsy. Only God knows what is next as my life’s story continues to unfold!

 

Dan Dougherty is a trained patient educator and public advocate for the Epilepsy Foundation Eastern PA. He hopes to continue using his public speaking skills to speak up about epilepsy as a guest speaker.

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