I was diagnosed with adult-onset epilepsy when I was 23. I might have had my first seizure when I totaled my car at age 21, but no one saw the wreck and I had so many other injuries that no one thought to give me an EEG to see if I had seizures. The other possibility is that I developed seizures after the accident because of my skull fracture. We’ll never know.
At 23 I had another seizure behind the wheel and this time someone saw that I was having a seizure. It was then that I had gamut of tests and later in the year they told me it was epilepsy. Read the full story here and here (and various musings here and here). Since then I’ve taken seizure medication and have had seizures all over the place, but I usually only average around two a year. Epilepsy is loosely defined as episodic abnormal electrical activity in the brain that happens numerous times and can often be controlled but not cured by medication. No one knows why these electrical misfires happen, though there are things that trigger them for some people. It’s very much still a medical mystery.
Compared to many people, I have it so easy. After completing the Walk for Epilepsy last year I met more people who have seizures much more frequently than I do and who cannot find a medication that does not give them horrible side effects. At the walk, people with epilepsy wore purple shirts. The saddest thing to me was seeing strollers draped with purple shirts. I can’t imagine being the parent of a little child who has seizures as often as several every hour, which is true for a lot of childhood epilepsy patients. While it usually doesn’t have the social stigma that it used to, epilepsy still has social and of course medical challenges that people face.
I certainly don’t think of myself as a victim and I don’t want others to either. In fact, I think having epilepsy has made me a better and stronger person. It has also made me aware of other much more debilitating and devastating cases that make me want to do a little something to help. (3 million people in the US have seizure disorders) Thank you so much to those who generously donated money last year and those who have already this year. I will be thinking of you as I walk! If you haven't yet, please consider donating in my name or walking with the boys and me at the end of March. In a nutshell, here’s what your donation would go toward:
Helping support innovative research toward treatment options such as intravenous anti-epilepsy medication, specifically for infants with seizures
Helping support advocacy efforts that make sure people with epilepsy are not discriminated against, especially through health care coverage (My medication without insurance costs $300 a month)
Helping provide programs to educate first responders to identify seizures from behaviors that could be a result of drugs or alcohol, and to know how to help