I’ve had a headache since Monday. Is it the lack of sleep, the time I spend in front of a computer screen, or because I cut down my epilepsy medication starting Sunday? I don’t know but I’m glad this time it’s just headaches.
It used to be disorientation or blacking out. I’ll take the headaches. I remember the transition being much tougher the last time I cut down on my medication.
My epilepsy acts as my leash.
It doesn’t limit what I do so much as how far I can go. I don’t trust Bolivian or Jordanian pharmacies so I know that I need to return to the US before I run out of my prescription.
Since I can only get six months of medication at a time, I started weaning myself off of it. I had quit cold turkey several years before, but after “coming to” a couple times in elevators or midnight roads with no idea where I was, I decided to start taking it again. To play it safe I decided that I would take the full dose in the morning, then only half in the evening; I needed to extend my trip and I thought I didn’t need that medication running through my system while I slept anyways.
This generally turned out alright, although I had a couple of incidents in Brasil with no beginning or middle but an end which involved me “waking up” in the middle of a run on some busy street, without knowing where I was or where I lived. I also spoke very little Portuguese at this point. These were not overly pleasant experiences.
The nights were better. Sometimes things come alive in some kind of super-3D, similar to having distant objects or shadows jump out at you when you watch movies with 3D glasses. It’s both amazing and sometimes frightening. Having this happen while dancing or watching the city’s nightline usually turned into an incredible experience. Until the nausea kicked in. Or the déjà vu. Then the incredible experience turns into needing to sit down, breathe deeply, and drink or eat something. I get frustrated as I explain what happened and say I can probably continue in five minutes.
Then comes the sympathy. Or the ridiculous awe.
I’m not a victim.
I’m not brave for traveling like this.
My life isn’t hell. I haven’t just taken my first steps after a lifetime of confinement in a wheelchair.
I’m still the luckiest man on Earth.
Other than than occasional hiccups, I had adjusted well to halving my nightly dose. Because of this I decided to lengthen my travel leash and halve my morning dose as well. I did this while I was visiting family when I returned to the US during Christmas so that I wouldn’t have any stress or responsibilities that might trigger or complicate things.
Two months later, it was working quite well.
Minus the hiccups.
The most common is at the gym. I know that a combination of aging, leaving the military, and exhaustion-induced seizures mean that I can’t go as hard as I could when I was twenty, but why am I done so fast? I’m not physically exhausted. I could certainly do much more, but when I can no longer read the numbers on the weights or recognize faces I start to worry. My arms have plenty of juice left so I’m stuck trying to figure out if my head will right itself after a few minutes of rest or if I’ll be quitting only halfway through my planned workout. I hate quitting early, but walking through downtown Amman while hallucinating or waking up in a Jordanian hospital aren’t high on my to-do list either.
The déjà vu can also be a frequent visitor. Not familiar faces, but faces and voices I know I’ve seen before. Or remembering that a few years, I closed my eyes and saw a green backpack with tacky patches next to a garishly colored couch. I’d never seen either of these before, I think, and spend the next five minutes trying to confirm that. Fast forward to this week and I’ll be damned if the green backpack I got for Christmas isn’t sitting next to the couch I saw two months ago, only instead of in Oregon I’m now on a farm in rural Israel.
My only reliable travel companion
You’re probably reading this and thinking that I’m just imagining now that I saw it in the past and I’ve considered that myself, but no. I know I’ve seen it before. Then I wonder… if I really did see the future, do I truly have free will? Is it fair to blame others for predestined actions? Then I stop. No need to add more confusion to the equation.
A couple of days ago I had my first encounter with what most consider to be “normal” epilepsy, with my head pounding and my stomach growing nauseous as a light bulb in the kitchen flickered for a couple of minutes before dying. The flashing lights and repetitive sounds have never bothered me before. I close my eyes for a couple minutes, hoping that removing the flickering light from my vision will kill the symptoms. Instead, lights flicker in my imagination and a rhythmic headache starts. I’m nervous. Not about seizures or epilepsy, but about the dishes. It’s my night to wash them. Of course I could just explain things and go to bed… no one would mind. But the sympathy would follow. And the thoughtless impressed reactions (You travel with epilepsy? How brave!), as if riding buses, feeding alpacas, and meeting new people is the same as slaying a dragon. I wait ten minutes, feel better, wash the dishes, and sleep.
So where does this leave me now? The same place as everyone else I meet traveling, but with an occasional early bedtime and nagging thoughts in my head: Is it getting worse? Or is it just that we don’t remember small incidents after a couple of days so my recent flairups seem unique in my memory? Or maybe the “unexplained mass” in my brain is growing… the Tucson VA told me there was nothing there, but in Georgia I had every type of brain scan imaginable and saw it at different dates and from different angles. It was there. It was explained at different times as a possible brain tumor, an ectopic pituitary gland, and finally an unexplained mass, absolving the VA neurologists from any responsibility as they passed it off to the next doctor. I tried to get another MRI before leaving Arizona but was told that a phone call with a neurologist in three weeks was the only appointment they could make for me. Getting a new MRI would be a three-month wait unless I had another seizure.
All the thinking is giving me that feeling, the feeling of confusion and uncertainty. Time to eat apples, sleep, and get on with life.
I feel fine.