By Dan Dougherty
It is late spring of 1972, and I am in my mother’s dreams. On June 8 that dream was fulfilled as I came into the world but gave my parents an unexpected shock of a lifetime by seizing the moment (so to speak). I went into fetal distress, and the doctors took their good old time in taking me by C-section. For four days straight, I was in the hospital with all these crazy tubes and wires connected to keep me going while I decided to have non-stop convulsions. It was my stubbornness and the grace of God that allowed me to survive.
For the first 10 years I was a relatively healthy boy who loved to play! When I was 10 years old, I contracted viral meningitis. A few months later I was sledding in the park and had a seizure at the bottom off the hill. The seizure was scary. The world was spinning; I was throwing up and screaming scared. After many tests, I was diagnosed with epilepsy.
Have you ever lost your car keys and were faced with the prospect of not knowing how to get to work, school or meeting a friend for lunch? How did you feel? Since I was diagnosed with uncontrolled epilepsy 33 years ago, I have dealt with this limitation on a daily basis.
Epilepsy is a neurological disorder that causes sudden unexpected electrical charges to the brain, resulting in what is commonly known as a seizure. It doesn’t “get the press” that it is due and, therefore, you may be surprised to learn that in the U.S. alone, there are three million reported cases. To put it into context, that is more than the total number of people suffering from Cerebral Palsy, Parkinson’s disease and Multiple Sclerosis (MS) combined!
Throughout the ages, up to the early 20th century, individuals suffering from this disorder were treated as if they were possessed by the devil or were mentally challenged, and they were often placed in an asylum for the rest of their natural lives. For many years, because of this stigma, many people would be too embarrassed to admit that they had epilepsy.
Thanks to modern technology, we have moved beyond the fears and superstitions of the past. Doctors can locate and identify injured portions of the brain that cause seizures and develop an appropriate treatment plan. A majority of people with epilepsy have brought their seizures under control with medication and live relatively normal lives.
I continued with seizures, however, and the experience of the trial and error of medications. Dilantin gave me a rash. Phenobarbital made me very, very irritable. The years of trial and error of medications had been very frustrating, but a stubborn part of me never allowed this demon 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 will never be forgotten!!!
I went on to take a few part-time jobs until I landed a job at my church in 1995 that lasted seven years. During this whole period up to and including 2001, I lived a life of constant Grand Mal seizures. The medication mixes never could help the seizures to be milder until I was put on Trileptal and two other anti-convulsive medications. Only then was I able to live with less severe seizures.
Now with the less severe seizures, I had the opportunity to go onto college. I entered Philadelphia Community College. I 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 psych unit! This experience forced me to start a journey of individual therapy and anti-depressants.
I would like to emphasize that I was not happy making the decision to get therapy. I walked out of the therapist’s office a couple times. It is very hard to admit I need help from another person!! I used to say to Marianne, my therapist: “I am paying you to listen to what I can tell a friend.” As years went by my weekly meeting with Marianne progressed to help deal with living with epilepsy, especially getting out all the crap to the point of crying a few times.
Here I am now, 45 years old, fully accepting uncontrolled epilepsy as part of my life. What a peaceful feeling!! This could not have happened without Marianne’s help. The bonus of my past experience of 33 years: I am now an advocate and public speaker for epilepsy!! Only God knows what is next as my life’s story continues to unfold!!
Dan Dougherty, a resident of Glenside, 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. You can reach him at 215-886-0470. For more information about epilepsy, you can call the Epilepsy Foundation of Eastern PA at 215-629-5003 or visit www.efepa.rog