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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.

1/7/2014
Ms. jan liles said:
I just wanted to compliment you on being a person who has epilepsy and is willing to teach others about it. I have had complex partial grade II since 4 yrs old and have never had them under control. averaged 3-4x / month. I am near 65 later this year and still try to teach as I did to many through my profession as an RN. My mom was also an RN and didn't sand in my way of doing whatever others did. I drove for 9 years but seizure interfered and took those years of freedom back. Support from family and friends help now. I was married for 24 years but my husband died with cancer in 2004. Being an advocate and educator still lingers as my brother had a stroke age 53 and he now has gran mal seizures controlled medically but challenged by his severe stroke. Keep on spreading the information and maybe we will be accepted much better by the time you reach retirement age! Jan
10/29/2013
Mr. Dan Dougherty said:
November is Epilepsy Awareness Month and I hope this story helps others understand this mysterious condition. I hope all can join me and many others in raising awareness by wearing purple and November!!
10/3/2013
Mrs. Colleen A. Dunlap said:
Dan I am so proud of you! This is a very well written story and I know so true. You do such a great job helping others with epilepsy, (I being one of them!) and the world is definitely a better place with you in it. You really do inspire and I know epilepsy awareness is further along because of you!
10/3/2013
Mrs. Colleen A. Dunlap said:
Dan I am so proud of you! This is a very well written story and I know so true. You do such a great job helping others with epilepsy, (I being one of them!) and the world is definitely a better place with you in it. You really do inspire and I know epilepsy awareness is further along because of you!
10/3/2013
Mr. Dan Dougherty said:
As I read my story, I am in awe of the God given gifts of strength and perseverance tha have been granted me! I hope this essay will help others living with epilepsy and enlighten fellow readers ! FYI: November is Epilepsy Awareness Month!! Spread the word and help raise awareness!! Dan Dougherty
10/1/2013
Barbara J. Spause said:
Dearest Dan, Thank you for sharing your amazing and personal journey with Epilepsy. Your courage rings through the internet. It's nice to read about your experience as others can relate to it and feel encouraged to try anything. My step-sister and step-mother have Epilepsy. I recall their difficulty driving this time of year when sun light passes through the leaves on the trees. This seemingly simple view to many can wreak havoc for some with Epilepsy. Your courage to present this document is paramount and much appreciated. Many thanks to you and all that you are doing. B
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