When I was a teenager, I was diagnosed with Juvenile Myoclonic Epilepsy. It’s hardly the rarest form of epilepsy, and there are far worse versions to have. In terms of epilepsy, if you have to have it, JME isn’t all that bad.
General view of JME is that it will follow one of two paths: It will go away by your early 20s, or it will continue to get worse. I’m told that it gets worse through your third decade and then evens out at around 40. Exciting thing to look forward to, really. Not many people my age itching for middle age, but I am. Because I lucked out and ended up on path number 2. Hurrah!
In the US, I was taking Lamictal and Zonegran. Here in Thailand, all I can get is my Lamictal. Again, it could be worse. More than one doctor has tried to put me on Kepra, another anti-convulsant made for general epilepsy, but it has the side-effect of causing seizures in patients with JME. Found that one out early on; I don’t take kepra.
So, with my overall feeling getting worse, and only having access to one of my two medications, I sometimes feel a little manic. Manic is the best way to put it. You’re sitting at lunch, waiting for a ride, walking around the market, and all the while you’re brain is screaming obscenities. Pissed as all hell that you’re not doing more to insulate its faulty wiring. Hard to blame it, really.
I have had over four seizures in the last six months. For someone without epilepsy, and even people with other forms of epilepsy, that might seem like a small number. It’s not. When me and my medication are in sync, I have two a year. But I’m getting worse, and it’s hard to keep up.
Some quick facts, brought to you by the WHO:
1. Roughly 50 million people in the world are epileptic. (1% of the Thai population is epileptic.)
2. 80% of epileptics live in developing regions of the world.
3. Epilepsy responds to treatment 70% of the time, but most epileptics live in parts of the world where treatment is insufficient. This can be because of lack of medication, cost of medication, and even stigma against the very idea of epilepsy.
Thailand is one of those countries that hangs on between developed and developing. A McDonalds on every corner and Reality TV Stars spread all over every magazine, but there are still people who view the very idea of Epilepsy as supernatural, and in a negative way. Sometimes epilepsy lucks out and gets itself connected to godhood, but just as (if not more) often it gets wrapped up in demonology. And that’s not good.
Now. I don’t want you to think bad thoughts about my adopted homeland. It has been great to me. I used “over four” above because 4 is the number of seizures I’ve had while at work. I’ve had a few others at home, where I was the only one affected, but in 6 months I’ve had to be sent home 4 times because I had fits while I was working. Everyone has been very kind to me; everyone has done their best to help take care of me. They have been very flexible with my health and extremely understanding. When I was younger, as an employee and as a student, I never had a fit at work or in class, but I find it difficult to believe that I would have been treated as well in the US as I have been treated in Thailand.
Not to mention that I have health insurance at my job here, and my medication is fully covered. But in this, I am still lucky. Many poor Thai epileptics cannot get medication because most anti-epileptic meds are not covered by governmental insurance. This is probably connected to the public perception of epilepsy.
This shows how epilepsy is difficult. Not just for me, but for everyone — with JME specifically — faces such problems. As an American in Thailand, some things are a bit harder. My first year here I had a drop attack (it is like fainting, and usually, for me, precedes a grand mal seizure) while walking home from work. Several nearby people stopped to sit with me and help me. My Thai was non-existent, and their English equally so. It was quite the experience. I come out of attacks confused, disoriented, and suffering from temporary memory loss (it can take me hours or days to recover my memories of what was happening before the attack). But, and this is one of the most troubling parts of MY style of epilepsy, I am very stubborn. I want to get right back to walking, if I were walking when I had an attack. I might not know why I’m walking or where I’m going, but I just want to GO. Same thing if I happened to be working at the time. No clue WHAT I was doing, but I need to get to doing.
When I was pre-20, this once led to me driving half-way to school after an attack. Six miles between my home and a donut shop. I remember none of them. I could have killed someone! Several someones! I was lucky then.
I don’t drive now.
But that hasn’t gotten rid of the stubborn attidude or my almost overwhelming desire to ignore my obvious problems (hard not to realize something is wrong with you when you gain some level of consciousness while on your back, in the dirt, surrounded by a small crowd of concerned Thai people. It’s a personality flaw I would like to fix, but I’ve not been able to talk myself into rationality post-attack. At least this last time I didn’t fight against one of my friends to try and let me get back to my office. Still feel bad about that.
Then we get to the final problem. My family. I love my family, I really do. Being that I’m young-ish (holdin’ on to my youth!), alone (meaning single, not in a relationship and not here with any partner be it friend or significant other), and female, they’ve always had some concern about my living halfway around the world. Adding epilepsy to the mix isn’t exactly heartening. Thus, I don’t tell them when I have a seizure. Ever.
There’s precedence for this, I kept most of my attacks to myself during college, too. But most of those were because of sleep deprivation (class, club, homework, competitions work-work), and the fact that I wasn’t taking any medication. (Ha! You know what that stuff costs without insurance?! A butt load, that’s what.) Now, I’m on medication, I’m getting sleep, I’m eating more than pizza bites and sheet cake. But it’s getting worse.
It’s getting worse and Thailand is the only place where I can get full-coverage medical insurance. If they knew, my parents would want me to come home, but I can’t afford that. So they cannot know.
Makes me feel like shit to keep it from them. Like absolute shit.