One son's story: Getting to know my father thanks to advances in epilepsy medication

One son's story: epilepsy
Steve Coldwell and his father, Stephen, in 1974

When I think of my father’s epilepsy, I always go back to a seizure he had during one of my Boy Scout camping trips. It wasn’t the first time I saw my dad have an epileptic seizure, but it was the first time I was the only member of our family around to deal with it. We were playing softball and he was at bat. After a pitch or two went past him, he simply let the bat fall to the ground and sat down on home plate. I immediately knew he was having a seizure, so I helped him up, walked him off the field and talked to him until he came back around. When my mother heard about it later, she was upset, asking why I hadn’t called her after it happened. I told her there was no point. It wasn’t like I had never seen my father have a seizure; they were just a normal part of life.

We were always lucky, in that my dad’s seizures weren’t violent, or even physically demonstrative. If you didn’t know him, you might not even realize something was wrong. Our family referred to them as dad’s “dizzy spells.” He would simply stop whatever he was doing and gaze off into the distance, often needing a minute or two to remember where he was or what day it was.

He was first treated for epilepsy at Children’s Hospital Boston in 1950, when he was in fifth grade. From the beginning, he was treated with a combination of Dilantin, which slowed down the impulses in his brain that could cause seizures, and Phenobarbital, a barbiturate commonly used as an anticonvulsant, which had the unpleasant side effects of sedation and occasional dizziness. The combination may have controlled his seizures, but it certainly didn’t stop them. My dad’s spells came and went without warning. Because of this, he wasn’t allowed to drive alone, and I know my mom took a fair amount of grief about the fact that she let him get behind the wheel of a car at all.

Growing up, I remember my dad as being quiet, deliberate and always tired. One of my most common childhood memories is my dad sitting on the couch, fast asleep with a book in his hand. For an avid a reader like my father, it must have been unbelievably frustrating that a good book would often put him right to sleep. I knew he was a smart man and a whiz with finances, but everything about him seemed like it was running in slow motion. Being a kid, I certainly wasn’t willing to slow down for him. I simply chalked it up to the long hours he worked, never once thinking that it was the medications he took that defined how my father interacted with the world.

In 1994, the FDA approved Gabapentin (under the brand name Neurontin), a synthetic that controls partial seizures, but is most effective when combined with other anti-seizure drugs. When my father switched to it, the results were incredible. Out from under the barbiturate haze, my father was a dramatically different person.

My wife first met him after he switched to the new medication, and at first I couldn’t imagine who this man was—she saw him as quick-witted and playfully mischievous. “Wise guy” was a term she often used to describe him. Everything she was learning about my father’s personality seemed like it was new to me, too. I was shocked when my grandmother told me that, prior to starting his epilepsy medication, my father had been a hyperactive child. After all these years, I could finally believe it. The man who was always tired now hiked the Grand Canyon, glaciers in Alaska and the Australian outback. Now, my daughter has only known this new version of my dad and she loves his smiles and sly sense of humor. Honestly, he’s got more energy to keep up with her than I do.

When my daughter had a febrile seizure at 14 months, my mind went immediately to epilepsy, despite the extremely low chance of it being hereditary. Afterward, I realized it was the first time I had worried about epilepsy in more than a decade. In the 15 years since he switched medications, my father hasn’t had a single dizzy spell. His epilepsy is always going to be part of our lives, but it doesn’t feel like the constant threat it once was. Thanks to the advances in medication over the last few decades, I’ve now had the opportunity to get to know my father again, for the first time.

4 thoughts on “One son's story: Getting to know my father thanks to advances in epilepsy medication

  1. Thank you for sharing this story from a son’s perspective. I have handled my son’s epilepsy care for over 11 years now. Both of my children have been impacted by his epilepsy as well as his depression. The diagnosis of epilepsy does not just affect the person with the diagnosis.

    My children also had to come to grips with their mother’s diagnosis over 3 years ago after more than a dozen years of misdiagnosis. It has been extremely challenging for them to deal with seeing me come to this diagnosis I believe. My son and I are able to discuss it. My daughter remains very uncomfortable talking about my seizures.

    I am relieved to have proper treatment for my disorder.

    My son was treated at Children’s for many years for his seizures. He still is for his other medical problems.

    I have greatly appreciated seeing the epilepsy related articles over the last few months! Keep up the great work!

  2. This is an excellent piece. Thank you for sharing it. I’m glad people are getting the word out about epilepsy, especially during National Epilepsy Awareness Month! I would like permission to reprint this in our magazine, epilepsyUSA.

    Thanks,
    Lisa

  3. Dear Steve,

    Thank you for sharing this very candid and well written look into living with epilepsy by you and your family. I smiled ear to ear while reading when you stayed calm with your father during a seizure at the scout camp and afterwards told your mom it was no big deal. You nailed it!

    Sincerely,
    Craig, a very proud father of six

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