Tag Archives: Painting

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!

Red

My favorite color is red. I mean bright, LOUD, obnoxious RED!!!! It’s followed by blue-purple, then black. Apparently only 10% of women in the U.S. say their favorite color is red, which I thought was cool. I was bored one day, so I looked it up. If you looked at all the stuff I own, you’d know my favorite color. My mom got me a new bag for my birthday, and it’s delightfully red, and significantly bigger than my old one. I was running out of room.

I was thinking about why my favorite color is red the other day, and I think I have an interesting reason. I’m just one of those people who have to have a reason for everything. Generally, I think, most colors have at least vague connotations for different people. To me, red exemplifies power and energy, but also love. Of course it’s also the color of blood. Interestingly, I got into an argument about this with a friend on Facebook. Red has negative connotations for him because it mostly represents blood and, therefore, death. For me, it can also represent blood, but I generally associate this with life.

At various times in my yet short life, I’ve been obsessed with things. When I was a little kid I was obsessed with dragons. When I was in middle school I was obsessed with a mythical world my friends and I created that, of course, we had to rescue from Agorauth, the evil wolf demon. When I was in high school I guess you could say, in a sense, I was obsessed with myself–or rather, the fact that I was “alone.” When I was in college, for the most part, I was obsessed with school, partly in the pursuit of Truth.

These days I think it would be accurate to say that I am obsessed with art; with creating things. I feel like my art–in whatever form it takes–has to have a reason behind it. I don’t think you can create art for art’s sake. At the very least, artists create because we want to. Even if one isn’t trying to say anything in particular, there is something of the individual in every created thing.

Most of my art isn’t visual. I mostly work with music and written pros. I don’t create in color per se, but I definitely live in color. Everyone does. How we dress, how we decorate, and what we carry with us say something about who we are. Most of my important stuff is red and, in some cases black. These color choices have musical, not just visual connotations. I grew up on 90’s punk and alternative rock. From the age of eight I wanted to be in a band, and when I started guitar lessons at fourteen, I knew I specifically wanted to be in a punk band. That didn’t happen, but it translated to how I carry myself. Red and black are very 90’s punk.

As I said, I don’t usually work in a visual medium, but about a year ago I designed a piece that, until recently I didn’t do anything with. I can paint, though not incredibly well, and it takes me forever. The design I came up with was complicated, so that was out of the question. I thought about getting a tattoo, but no one would see it, and it’s important to me. Finally I was able to create a digital version of my design and I’m having it made into a pendant. I’m rather proud of that. The design is a butterfly on top of a rose that is being held by two hands clasped together. The butterfly is supposed to be white and the rose is supposed to be red, but I’m having the whole thing made in silver.

The colors were symbolic in my original design. The white butterfly was meant to represent redemption and change. The red rose was supposed to represent life and sacrifice. The two hands together represent togetherness with God. I think the design will look nice in silver, but I still think it would have been nice to find a way to make it into something with color.

I don’t think you can have too much of a good thing. We just haven’t found a thing on Earth that doesn’t end up being not-good after a while. Everything eventually ends up being boring or unhealthy. When I was in middle school I ate pickle-and-mustard sandwiches for lunch every day. Eventually I got sick of them and, to this day, I hate pickles.

During Lent I’ve been taking a class about knowing Jesus better. Last week we learned something interesting. People tend to replace God as a priority with four basic things: power, honor, wealth, and/or pleasure. The thing is, none of these things will ultimately satisfy us. We’ll just always want more. This is definitely the plight of the artist… or at least for me. It’s never quite good enough, so I keep creating, or I keep editing. Sometimes I hit a home run and I can consider a project finished, but it isn’t often, and I throw a lot of material away. Part of it is that I’m much more careful with my novel than I am with my songwriting lately. I haven’t written a really good song in a while.

It’s hard to write a really good song about a specific person or thing. I find it’s easier to write about ideas and invent specific details, or to start with something random off the top of my head and see where it goes. Some of my best songs have been the result of what started as “mind spew.” I have a new musical project in mind. It’s an instrumental piece because it’s supposed to convey something I haven’t been able to express in words (and trust me, I’ve tried). In a sense, it’s supposed to be synesthetic. You’re supposed to feel it as you hear it.

I find I can much more effectively convey emotion through sound than any other medium, whether it’s musical sound or something else. Specifically, I’ve only really been able to convey a sense of peace through music. A lot of my visual art actually tends to be angst-ridden for some reason. My favorite color is red, and while it represents love, I never really think of it as representing peace.

Because in my world guinea pigs can fly!