I like going back to the website once in a while to see what’s been added to the wall recently. Some are pictures with first names (I had forgotten until I saw her picture there that my cousin has epilepsy); some are comments about how brave they think people with epilepsy are, how it doesn’t limit their lifestyles… some comments aren’t as pleasant.
When I first looked at the page on November 1st, I thought, “Why would you put something on here that’s not uplifting? This is supposed to be a positive, unifying website that shows how strong we are, how epilepsy doesn’t keep us down!” Then I remembered that those negative stories come from people who have epilepsy, too. Sometimes it does limit their lifestyles. A lot. And we shouldn’t disregard or ignore them, especially during Epilepsy Awareness Month. In a lot of cases, there’s nothing that can be done. They’ve tried different kinds of medications, surgeries and treatments, but nothing works. It’s part of who they are and it sucks.
I can only relate a little bit—“I am one”—and I wish I could make things better. I wish all of them could be better. (If someone who’s not doing well is reading this, I wish you could be better, too.) If it helps at all, I can promise you’re not being disregarded by at least one person out here. Take care, everyone.
I don’t remember where I saw the original videos, but they were along the lines of Jimmy Kimmel’s “Mean Tweets” segments—people responding to tweets that… well, the tweets exhibited a distinct level of ignorance. Ignorance may be bliss, but it can be bad for other people who need help. Awareness is good. Awareness means learning what to do like in the video below:
Stay safe and keep people who are having seizures safe, too.
First off, I’d like to discourage people with epilepsy from ignoring doctor’s orders and self-medicating. It’s a bad idea. (I did it anyway.)
In my case, it wasn’t a big deal—at my last appointment, the doctor told me to increase my daily dosage of lamotrigine (Lamictal) by a certain amount each week. I got to the final week and started having problems, so I went back to the prior week’s dosage before talking to the doctor again and it’s gotten better.
During the course of the last few weeks, treatments have ranged from “only increase lamotrigine” to “also stop depakote and start taking vimpat” to “Vertigo? Wanna have surgery?” All because I started having small seizures this year that happened three months apart.
It can be difficult to describe “This is what my seizures are like” to a doctor. Hopefully, you can explain the symptoms well enough that they’ll understand the problem and find a treatment that will work extremely well. If you decide to go another route… don’t let epilepsy turn your life into a “Choose Your Own Adventure” book:
Listen to doctor, turn to page 16.
Ignore doctor and take your own drugs, turn to page 33.
Page 33: Bad things happen and you end up in the hospital having more seizures.
The one reeeeeeeally important thing about good doctors is that they listen. They accept feedback. None of mine have ever said, “This is what you’ll do because I said so and I went to medical school!” And so we listen to each other as we consider options for treatment, we choose something and then see what happens. The result of only increasing my lamotrigine dosage? Turn to page 46.
This question is one I know people can relate to: “You have epilepsy, what are your seizures like?”
You might as well be asking a woman, “You’ve given birth, what did it feel like?”
The problem is that in some cases, you don’t have the luxury of being able to roll your eyes and walk quickly in the other direction. In some cases, you have to try to describe the seizures to your doctor so he or she can recommend treatment.
“Well, my head feels a little tingly, I get a mild sense of vertigo, there’s a rush of energy in my head…”
Words like that are all it takes for a doctor to wonder if it’s safe for you to drive and you may have to try a variety of explanations to convince them that everything is fine.
I was talking to a nurse this morning about changing my medication schedule and I told her about a seizure I had last week. I was eating at Culver’s with my mother and saw a t-shirt hanging on the wall. When I looked at it, the text was describing some kind of epileptic seizure. I wasn’t sure if it was the kind I was having at that moment, but some kind of seizure.
Thirty seconds later, I looked back at the t-shirt and it said FARMERS ROCK!
I don’t know if that description will affect what I’m taking for medication, but if nothing else, I’m sure telling the nurse about the t-shirt was enlightening and a lot easier than explaining the joys of childbirth.
I was driving home recently and listening to music on my phone. I have it on shuffle so I can listen to a variety of tunes that stretch from Billy Joel to Marilyn Manson, from Enigma to Nickelback. (That’s right, I listen to Nickelback. If you don’t like it, tough noogies.) As I was turning a corner, I had a brief seizure—slightly more than a picture this time—and what I saw in my head was a phoenix rising up and spreading its flaming wings. Same weird surge in my head, but this may be the first time I could tell what the thing was that just flashed through my brain.
Then a song started playing on my phone: “Broken”, by Seether and Amy Lee.
When it hit the chorus, I almost started crying. “I’m broken…”
Thankfully, that thought didn’t get stuck in my head because I really am in one piece. It’s a really odd-shaped piece, but one piece nonetheless. The term “square peg in a round hole” refers to someone who doesn’t fit the norm. In this case, “normal people” are round pegs and “people with epilepsy” are… well, we’re not. We’re not round, we may not even be square, but we’re definitely not broken. Not even if we listen to Nickelback.
This is a slightly shameful moment for me, but hopefully, other people can learn from my example. (Hopefully, they don’t need to learn it, but if they do…)
Once I started having those little seizures—once my streak of fifteen years was over—I had a brief thought flash through my head: “Now I’m one of those people.” Not cool.
Aside from the fact that you shouldn’t lump people into categories instead of acknowledging them as individuals, there should be no “I” and “them” when it comes to epilepsy. We all have it. No “I” and “them”: it’s “we” and “us”. Something I need to keep in mind going forward.