I had my first seizure when I was 13. It was a Petit Mal, meaning I did not collapse but was not aware or in control of my actions and words. While giving a presentation in English class the rails came off; mid speech I began rambling, acting strangely and cursing. School officials dragged me, kicking and screaming, from the classroom; or so I am told. My body was there, my mouth was apparently running, but my brain was not. To this day, I don’t remember a thing. I was suspended from school on suspicion of drug abuse. I was not on drugs; I was an epileptic, we just didn’t know it yet. In a singular moment I went from being a high achieving, athletically gifted ‘big man on campus’ to ‘the weird kid’, and, though I did get some street creds for apparently calling a school’s meanest teacher a ‘*****’ in front of the whole class, I was deeply ashamed.
Not long after, I had a Grand Mal seizure. Flopping on the floor like a fish, it became apparent the school incident was not a fluke; something was wrong. For 18 months I became a human pin cushion as test after test was run on my blood, body and brain. Back then, the only procedure available to study brain mis-function was a draconian version of the modern EEG. Dozens of small needles were driven through my skull and into my brain. I looked like the villain from the old Hellraiser movies. When the formal diagnosis of Epilepsy came back, I figured it was just another curve ball. So what if I flop on the floor like a fish and sometimes curse people out without knowing it? Big deal.
The big deal came as Epilepsy began changing my life. Doctors started testing the various barbiturates on me and my life changed forever. The drugs made me sleep all day, took me from a .400 hitter in baseball to a .100 hitter overnight. I went from focused to a fog. More than ever, I felt like ‘the weird kid’.
Then the doctors told me I couldn’t play football, couldn’t be around water, no boxing, no this, no that; the list seemed endless. Pretty much everything I lived for was on the ‘forbidden’ list. If I was worried about being labeled the weird kid before, quitting every sport and hobby I had would definitely seal the deal. So with all the brass of a teenage boy, I told my Doctor ‘Screw this, I’m going to live and if that means I’m going to die young so be it’.
That was over 30 years ago, and I am still prepared for the possibility of an early end. That’s not to say there haven’t been consequences to my version of living. Once while fishing, I fell in a river only to be saved by my father who, by freak chance, just happened to see me seizing my way into the water. I spent a month in ICU after that one with serious lung infection. I also convulsed my way onto a table saw in high school shop class. The saw blade missed my face by only a few inches. On a business trip, I smacked my head on a hotel end table. When I came to, I didn’t realize I’d had a seizure until the limo driver pointed out that the back of my head was bleeding like crazy. Another seizure in my local grocery store caused an unintentional back bend, 37 stitches and a permanent dent in my skull. (Clean up on isle 4!). And then there was the petite mal in the presence of a girl I had just started dating where I went ballistic and demanded to know just who the hell she was and what she was doing in my room. (We’re engaged now. She’s a VERY understanding woman).
There’s a bit of bravado in the epileptic world – who has had the worst seizures and the biggest scars. Amongst ourselves we epileptics compare seizure stories like badges of honor. In true gallows humor fashion, we tell our stories as a sort of kinship between ‘weird kids’, but also to alleviate the fear of what we can’t predict or control.
And while I’ve had some singularly awesome seizures, I’m lucky. Yes, LUCKY. I have a massive seizure once about every other year and a smattering of petit mals in between, (my girl has gotten used to reminding me who she is and where I am). I am one of the few who can legally drive as I am considered “controlled”; though that ‘control’ comes with daily dosages of barbiturates that would literally kill a horse…or Ozzy Osborne. When I get a seizure, it takes me several hours to a day to remember who I am. I’ve got to tell you there are few things scarier in life that waking and not knowing who you are or looking at a woman’s face to realize you should know this person but don’t, even as that woman tells you she is your fiancé. It takes a few more days for my body to recover from the massive muscle contortions and sometimes leaves me with stitches and permanent scars. But for all of this I am still more fortunate than most of my fellow epileptics. For them, there is no control, no amount of barbiturates or other meds that will allow them to lead normal lives. They suffer seizures weekly, daily and in the worst cases, hourly. Those are the ones that inspire me to make finding the cure a top priority in my life. They are completely incapacitated by this ‘disease’ that no one seems to understand. Modern science can navigate rivers on Mars, but it can’t figure out why some peoples’ brains simply short circuit.
Being “the weird kid” made me work harder than anyone to prove everyone wrong, that I was not just “normal” but stronger than anyone else. This is a theme that continues to drive me to this day and drives my fellow epileptics as well. Epilepsy has given us the strength to overcome anything in life, and for that I am grateful. If you want strong people hire an epileptic, even if you have to make working from home part of the deal. All of my epileptic brothers and sisters are strong as hell and proud people who will work harder than everyone else just to prove they aren’t the weird kids.
So this is an appeal to my friends to help me in this cause. I want to raise awareness, raise money for research and a cure, and finally to try to eliminate the stigma around this disease. I would encourage anyone to share my story, send a donation to the Epilepsy Foundation of Florida and hire people with this disease.
Michael J. Bowen
Board Member, Epilepsy Foundation of Florida