After calming yoga practice
Once landing on a prickly cactus
At a hospital in the hall
In a gross bathroom stall
At my house, in my bed
On the day my friend was wed
At the mall, in a store
On a fancy hotel room floor
In a cheap hostel dorm
While speaking on a raised platform
Many times in the shower
In sight of the Eiffel Tower
On a marble stair in Rome
On the floor of a German home
In the land of tea and scones
(The birthplace of Sherlock Holmes)
On an archaeological dig in Greece
At Maui sunrise while at peace
While running in the park
While running in the dark
While running up the street
While dancing to the beat
While dancing on a stand
While dancing to a band
In my home
And all alone
On a plane
On a train
In the air
On a stair
The seizures that took place outside my home… what would have happened if I wasn’t abroad? What if I wasn’t at work? What if I wasn’t out with friends? Would they still have happened? The answer is: yes. Or at least, likely. If I had stayed at home all the time and just moved from bed to bathroom to kitchen as needed, would I have been safer? Not really, since I’ve had more seizures in the shower and bed than all the other places combined. That isn’t even protection from injury: I’ve fallen out of bed and smoked my face or limbs on the bedside table or the floor. I cannot avoid the floor.
The point is having seizures is just the basic reality of being epileptic. That is the reality and I accept that. My basic reality does not automatically include travel, friends, going out, running, yoga, dancing. Those are things that I choose to include in my life. I would never take back any of those experiences because when I look back to things I’ve done, I don’t remember the archaeological dig that I went on as “the time I had a seizure in Greece”. I don’t remember the times in California as “the place I fell on a cactus”. If I stopped running because I had seizures occasionally during it, following that logic would also require me to stop showering and sleeping.
Some of the seizures led to embarrassing situations and some of them led to amusing stories. I wouldn’t have the embarrassment if it only happened where no one saw, but I wouldn’t have the stories if I was hiding out in my house. There have been lots of times that I have travelled, run, gone out with friends, etc. and not experienced any epileptic activity. If I took the time to list exactly where I was when I had all my seizures, I would probably start thinking about all the things I’ve done and placed I’ve been to, which is exactly what happened when I made this rhyme. I realized that I have never had a seizure in Australia, Southeast Asia, or South America (because I’ve never been to those places). Clearly this is something I need to remedy. Preferably just the trip, but I’ll take the seizure if that’s the caveat to me travelling.
As always, it may sound like I am being flippant. I am not being flippant about the severity of a medical condition. Any condition at all. I am not criticizing the people who have made the decision to stay at home. I am not criticizing the people who do not go out. I am not criticizing anyone for anything. I am just trying to make the point that, while seizures really do suck, if they are going to happen anyway, it seems a shame not to try to have amazing experiences while we can. As depressing as this thought may be, I could have a seizure the very next time I get into the shower at home and hit my head and that’s the end of me. That’s not going to stop me from showering. If that was the end of me though, I would at least be able to look back at my experiences (especially travel and running, if you didn’t pick that up) and be absolutely satisfied that I used the time I had in a way that is meaningful to me.
I still have epilepsy. Every day, even though I don’t have seizures every day. I can’t change that I have this medical condition. But I can run and travel and dance and shop and shower and go out. To me, the risk is worth it.
Also, apologies to Dr. Seuss. I tried my best. I promise not to try again until next December.
Hi, we meet last week at the leadership course. Had a chance to check out your blog and just wanted to let you know that you are such an inspiration not just to those that may be living with a medical condition and trying to get a feel for what that means, but in general just an amazing motivator to get out there and life. I love your no holds barred attitude and life philosophy. Thank you for sharing yourself with the ‘internet’ world and putting that no excuses attitude out there everyday. The world needs more folks to recognize difficult situations are always going to happen, it’s the attitude we approach them with the makes all the difference. – Magda
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