Tag Archives: Muscular Dystrophy

My Epilepsy

The other night I couldn’t sleep. I occasionally get insomnia, which wasn’t helped by the fact that I had drank an enormous cup of regular coffee that day. I usually drink decaf. I had a very strange seizure very late that night, which was different than my usual ones, which generally are infrequent, but after that I still wasn’t tired, so I decided to go on a quest. In normal people language, that means I decided to do some research on different types of seizures. I found two different things that night. I found that I most likely suffer from what are called focal impaired awareness seizures. It describes my symptoms when I get “brain fuzz” almost perfectly.

What usually happens is I’ll have some warning before the seizure actually occurs. The warning is hard to describe, but it usually gives me a few seconds or even a few minutes to warn anyone around that I’m going to space out. Then, depending on how severe the seizure is, I usually don’t lose full awareness of my surroundings or black out, but I lose my ability to understand or use language, or if it’s really bad, I can’t process any audio at all. Most of the time I know that I’m going to have a seizure, and I’m mostly aware of what’s going on around me while it’s happening, and I’m aware when it stops. However, in the worst cases, I’ll have absolutely no clue that I’ve even had a seizure. Most people associate seizures with twitching on the ground and foaming at the mouth kind of behavior. That only describes one type of seizure. There are actually many. I’m writing this because while I couldn’t sleep the other night, I found another website where people could share their stories of living with epilepsy. I’ve mentioned my epilepsy here, but I haven’t really talked about it in detail, so I’d like to take this opportunity to do so.

A lot of the people who shared their stories talked about how they were diagnosed as teenagers or as adults. I was diagnosed when I was eight. I had a few seizures before we finally went to the doctor. I’m not sure why. I was given medication and never had a seizure until I was a Sophomore in college when I had a really bad one in March or April. My medication dose hadn’t changed since I was eight. Between an unruly brain, and too much work for finals, I almost did not sleep at all for the month of April. It was pretty bleak. I had discovered the band Tenth Avenue North by that time, and I almost exclusively listened to their song “Worn” through that time. The opening lines are, “I’m tired, I’m worn/ My heart is heavy/ From the work it takes/ To keep on breathing…” Needless to say, I was in a bad mood.

Over time, my epilepsy has changed, and I’ve had to increase my dosage of my original medication and introduce two others. I take a lot of pills, and I hate them. Some of them are hard to swallow, but without them, I wouldn’t be functional. Some peoples’ epilepsy is entirely independent of external factors or other bodily functions. On a lot of video games and movies, there is a warning for people with epilepsy that graphic effects or flashing lights might cause seizures. This has never been a problem for me. What is a problem for me is that I literally can’t be hungry. I have to carefully monitor how hungry I am, or I will most likely have brain fuzz. Plus, if I don’t eat I get hangry (angry because I’m hungry) anyway.

I have had a weird life post graduation because of my epilepsy. Because of my Muscular Dystrophy, as well as my epilepsy, I can never move out of my parents’ house. I can also never have a “normal” job, partly because I wouldn’t want my medical conditions to inconvenience an employer. The fact of the matter is, I am prideful in some ways, and I’m on social security. I hate that, but I have no other source of income. I keep up a blog and I’m writing a book because I can stop when my brain craps out on me. Because of my condition, I need a lot of sleep, and this enables me to get the ten to twelve hours of sleep that I need most nights.

I actually consider it a blessing in a way that I was diagnosed as a young kid because I can’t remember life without epilepsy. People on the website I found wrote how they were diagnosed in their twenties, thirties, or forties, and how it made them terribly depressed because they lost things like their drivers’ license, or in bad cases, lost the ability to work in the places they had been, doing the things they had been doing. I think epilepsy is one of those things you have to choose to laugh or cry about. While it is frustrating, I have to make jokes and laugh about it because I won’t let it rule my life. The fact of the matter is, though, that the prospect of having a seizure in public (which almost never happens), makes me uncomfortable. Quite frankly, if I can avoid even my family knowing, I will hide until it passes, and then act like nothing happened. Sometimes I have to tell, though, and ultimately, it’s important to do so, but it’s important not to make a huge deal out of it. The other night, when I had the seizure that was different than normal, I told my dad. It’s important to calmly explain what happened because, at least in my case, it usually isn’t something to be worried about.

It’s important also to let people who have had a seizure take their time to recover if they need to. Don’t freak out, because that makes the situation significantly more stressful for the person. Seizures suck, so you don’t want to be further complicating things. The best thing to do is to follow their lead. If it looks like they need help, try to help, but let them try to show you what they need if they can’t verbally tell you. Don’t make presumptions because this is unhelpful and annoying. Also, if you know the person well, and you know language might be an issue, like in my case, talk as little as possible. Talking puts more stress on the person because it makes the person feel obligated to respond when they can’t. If you know the person, and you can get them their medication, show it to them. If it looks like they need to take a little extra, let them take it. If it looks like they just need to sit, let them sit. Generally, the best thing to do is to be patient, and let them shake it off.

When my epilepsy came back with a vengeance in my sophomore year, and then morphed over time before finally stabilizing, for the most part, it both scared me and pissed me off. I hadn’t had any seizures for about twelve years, so the fact that I was dealing with this again seemed very unfair. As I said before, though, epilepsy is one of those things you have to choose to laugh or cry about, and these days I mostly see it as an nuisance. It doesn’t stop me from playing music, or making mosaics, or painting pictures, or writing a book. It doesn’t stop me from loving, and it doesn’t stop me from having fun. Most importantly, it doesn’t get between me and Jesus. The other night, I couldn’t think because language was inaccessible to me, but he wasn’t. I knew he was there, and when language was finally starting to come back, the first four words I managed were, “Jesus, I trust you.” I won’t pretend that seizure didn’t scare me, but it would have been far worse had I not known he was there.

Because in my world guinea pigs can fly!

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Nothing Between Us

I’ve always had different feelings when it comes to my epilepsy. When I was a kid it scared that crap out of me. It was unnatural. Something evil was in my head. What was happening? Why me? When I got medicine, it was like I had died and gone to heaven. My life had been changed. For many years it didn’t bother me at all. I never had seizures, and never even had any symptoms. Then in my Sophomore year of college–three years ago–it came back. I would have actual seizures, though not terrible ones (whatever that means). I sometimes lost control of my body. I was tired and angry, particularly angry at God. For a while, until we got it mostly under control, I was just scared.

These days my feelings are different. I have symptoms rather often, so it doesn’t scare me anymore. Being angry doesn’t really do anything either. I’ve asked God to heal me and to make it go away, and he hasn’t. I remember reading that Paul asked God to get rid of a thorn in his side. God said “no,” because it reminded Paul that he needed God. I think of my epilepsy kind of like that. I can often tell when I’m going to have issues, so these days I just think: “Okay. Whatever. It’ll only last a bit.” While I’m having issues I just try to pray, about anything, and often, I’m able to sort of “muscle” my way through it. Sometimes, if it’s bad enough that I can’t process language, I just try to focus on God in some way and wait.

I had a few minutes where I just had to wait earlier today, and I realized, that those are the only times when I just sit still. I’m not playing music. I’m not writing. I’m not listening to anyone or anything. I’m not even thinking about anything. Oddly enough, it’s the only time where there is literally nothing on my mind. It’s the only time where there is nothing between me and God: no weird thoughts; no distractions; nothing I have to do; no words.

I am someone who will prove that someone with Muscular Dystrophy can do X, Y, or Z. I absolutely love it when people assume I can’t do something because I love proving them wrong. I’m also kind of an impatient person. I wonder if God allowed me to have epilepsy as a way of saying, “Woh… slow down, kiddo. Don’t forget that I’m the one who made all this possible. Don’t let your ego get ahead of you. Don’t forget about me.”

Admittedly, I spend a lot of time in my head. As a result, thoughts about God sometimes take a back seat. Sometimes thoughts about spiritual things get confusing or complicated, so I just think “screw it,” and move on to the next thing. Sometimes God doesn’t make a whole lot of noise. He lets me mess up like a parent lets their kid mess up so they’ll learn. Honestly, I don’t know if any of this really has anything to do with my epilepsy, but I have to make it make sense somehow. It annoys me when things don’t make sense.

God can’t physically show up and bang on my door and say “Hey! I need you to listen to me for a minute!” I have to take the initiative. I be responsible and slow down. I have to take the time to read and figure out what God is trying to say. Sometimes I think he just wants me to stop and spend a little time with him, even if he doesn’t have anything to say. It’s easy to forget that God is a person, and it’s easy to forget that sometimes he just wants to be with his peeps.

Because in my world guinea pigs can fly!

Broken And Laughing About It

I’ve been reading a lot of posts about people figuring life/themselves out. Some of them I find a bit cliche, and some of them make me a bit jealous. I think I know myself pretty well, but I wish I knew more.

Unlike a lot of people my age, I know EXACTLY what I want to do when I grow up, and like a lot of people’s my future is precarious. Music isn’t exactly the easiest industry to go into, and my disability complicates things. I have epilepsy, which is controlled by meds on top of MD. I’m also very near sighted. Besides that, common sense often eludes me and I don’t know too much about how the world actually works.

Sometimes I just have to take a step away from myself and laugh. I’m so broken. I’m also special. When I was diagnosed with Muscular Dystrophy as a baby, the doctors told my parents that it was because they both had the same defective gene and they had better odds of getting struck by lightning than meeting each other.

After they did some tests it was determined that I had 3-5 years to live. My mom prayed incessantly for weeks until someone from the hospital called and said they messed up the test results and they had actually reported someone else’s results. They said that I would be pretty normal other than not being able to walk. They’ve been trying for years to figure out exactly what I have, but I’ve stumped the best doctors and the most advanced genetic testing. I actually find it funny. I think I’m God’s little anomaly.

I guess I shouldn’t worry too much about the future because my Father has taken darn good care of me so far. I’ve never felt bad about being a busted piece of work. When I was in elementary school the other kids thought I was awesome because I got to ride a trike around in the building. I can give people rides on the back of my wheelchair, which is a good deal faster than walking, and I get awesome seats at concerts. Most importantly, I can skip lines at Canobie Lake Park.

Because in my world guinea pigs can fly!