First there was a giant plate of Asian fusion hot wings. Then came the spinal taps.
Don’t hold me to any of this. This isn’t what you would call a “hand-to-God” situation.” This story is the kind of blurry you only get with a lot of prescription drugs, brain trauma, and a little self deception.
But here’s the point: I’m about to tell you what led up to why, over the next seven days, a guy’s going show his triggered epileptic seizures for the world to see.
The story starts in July 2014 when I met a really great guy (who would ultimately be my boyfriend for a short while) in an Asian fusion restaurant north of Boston for dinner. Up to that point, I was virtually Mr. Indestructible. I thought nothing of running multiple marathons in the same month. I could get in a motorcycle accident and bounce back like it was a twisted ankle. If the spirit took me, I would spend days, sleepless, working on art projects.
It was wonderful. Until that day I broke. Until that day…somewhere between the hotwings and the egg rolls…I started frothing at the mouth and flopping around on the restaurant’s tasteful (and thankfully, thick) oriental rug.
…In my next moment of consciousness, I was strapped down to a hospital bed with no idea who I was. My parents had flown up from their home in Waco, Texas. They might as well have sent stand-ins from the Blue Man Group for all I knew. My wonderful, previous partner/boyfriend of eight years, Mark, was there for me. I think my best guess at his name was something like “Bob.”
Apparently, while I was “out” (several days I don’t remember) I experienced severe seizures that they tried to control with high doses of medications. And yet, I still thrashed in a violent fashion that some of the nurses had rarely experienced and swore using words that many of the nurses say they had never heard before–and upon repeating back to me, I had never heard before.
Over the next two weeks, I was stabilized in the hospital, and then was released with a set of medications that “should” have ensured that similar seizures shouldn’t happen again. And still, unfortunately, the first day out, I had a seizure on a street corner near a pizzeria. Afterwards, I was taken into the emergency room where I experienced the first “tweaking” of my medication.
Of course, it didn’t stop there.
Everyday over this last year, I’ve woken up with a time bomb in my head–not knowing if just that right switch is going to be flipped to make the circuitry of my brain go haywire.
And then there are the medications. Over the last year, I have experienced extremely aggressive use of five different prescription drugs. Some had no-so-great side effects. One made me put on 40 pounds. Another…well…let’s just say bent me toward some emotional choices I really, really wish I could take back.
Regardless, the seizures still came. But here’s what bother’s me: I still have to get out in the world and live. And in learning that, I’ve made friends with a lot of other people who have epilepsy–people who have known this since they were little kids. People who, although they don’t have the same kind of seizures I do, still have to fight the same kind of issues.
So, here’s what I’m going to do: over the next seven days, I’m going into the hospital where my doctors are going to cut back my medications to trigger my seizures. This is so my doctors can monitor me and figure out the best way to treat me. I have no idea what’s going to happen. But, I’m going to show you the best I can.
The reason? To draw attention to how little we know about how the mind’s circuitry works–and the tools we have to control that circuitry.
I hope you and I both learn from this little experiment. Please feel free to ask questions. I know I'll have plenty.
romaincrisis
yousharknotpass
turnnoffyourmind