Tag Archives: Epilepsy

Who Do You Trust?

Yesterday massively sucked. Our house cleaner comes every other Tuesday, which basically means I can’t work every other Tuesday because I’m out all day doing mind-numbing errands with my mom and brother and by the time we get home I’m kind of fried. Yesterday was a house-cleaning day. Usually we’re up and out of the house pretty quickly, but for whatever reason, we took what seemed like over an hour to leave. On top of that, we had decided to go to Flat Bread Pizza for lunch, which for us is in Salem. Salem is a pretty long ride for us, and by the time we got to the restaurant I was famished. This is probably sounding like whining so far, and under normal circumstances, it probably would be.

Shortly after we got to the restaurant I started feeling sort of sick, so I just sat still and figured I’d be fine once I got some pizza in me. Flat Bread is my favorite. However, shortly after I got my first piece down, my head started spinning, I started feeling faint, and then I got sick in my plate. We left after that and went to a gas station next door where I tried to keep down some chips and some Gatorade. I couldn’t even keep down the chips, and I could keep down the Gatorade for a while until we got almost back to our house. Then I got sick again in a container of wet wipes.

I was so dizzy I could barely make it to the bathroom on the second floor of our house (which is across from my bedroom) to get cleaned up before I slept for several hours. I did finally get up around nine PM and was finally able to eat some crackers and drink some Gatorade. I was also, thankfully, able to get my epilepsy pills down, and then I slept pretty well last night.

Today I got up feeling almost back to normal. I ate a pancake and some cheese and crackers and a bit of fruit before going to get my blood drawn (to make sure I’m not, you know, dying or anything), which went swimmingly, and then I got coffee with my mom, and I just finished writing the fifteenth story in my mythology.

It kind of seems like I’ve had more weird health issues lately. I had a thought a little bit earlier today. Is a cry for help a kind of worship? I’ve learned to say, when I ask God for help that I trust him. He did get me through yesterday, and yesterday was one of the worst days I’ve had in a quite a long time. A little while after we had left the restaurant I was feeling really crappy, and I told my mom I thought I should go to the hospital. Willingly going to a hospital is like admitting the worst kind of defeat for me. I have to be almost convinced that if I don’t I’m going to die. I’m not exaggerating. My whole family (on my mom’s side, anyway) is like that. Luckily my dad talked me out of it, but I prayed to God before we got home, and I said, “I don’t want to die, but I trust you, and whatever happens, I’m ready. Just please help me.” Now reading it, it sounds absurd. I’m twenty-four, but yesterday I was ready to die if that was what it was coming to.

I suppose this needs a bit of explanation. The symptoms I was experiencing yesterday seemed to be the result of really low sodium levels. One of my epilepsy medicines does deplete my sodium, which stinks because I’m also kind of a health nut, and a lot of salty things aren’t particularly healthy. Sure enough, though, once I got some crackers and Gatorade down, I was a lot better. I should also say that I’m only a health nut in the sense that I try to eat fairly small portions and ration the amount of actual junk food I eat. I also prefer, in general, to snack on fruits and vegetables, but I certainly don’t go overboard to the point that I feel like I’m missing out on something.

Still, none of this really answers my question. Is a cry for help a kind of worship? After yesterday I’m inclined to think so. I think it depends on whether one trusts God, and if one remembers that he’s there in the good times as well as the not so good ones. I remember our priest talking about this a handful of times in church when I was younger, before I had ever even accepted Christ, really. He said it’s so easy to remember God and to call out to him when we need something, but he’s not just here to give us whatever we need or want. He seeks our worship when things are going well because he loves us and he wants us to love him back.

While I was waiting for my appointment today I was trying to work through this in my head, and ultimately I had to realize that I keep asking myself the same questions over and over, which all boiled down to one: Am I worth dying for? In the opinion of the God I worship, I am. Part of that question is: How am I, one out of millions, and nothing special, worth it, and why am I worth it? I’ve decided to stop asking, though. I told him that in the waiting room. I’m done asking, and instead I’m just going to say, “I love you, too.”

Because in my world guinea pigs can fly!

Random Banter

Humans, as I write this, you should see my hair. My bird is sitting on my head, my hair is all over the place, including in my eyes, and he has made a nest. Every time I go to move it out of my face he growls at me. I am harboring a demon bird.

Anyway, spoiled animals aside, I have good news. I started a new medication a few weeks ago to better deal with my epilepsy, and it really seems to be working. I’ve had two or three little problems within about a month, which is nothing compared to what it had been. The beautiful thing about it is that I can do things I couldn’t before. Before I literally could not be hungry without having problems. Now I have to be pretty famished to have any trouble at all. I can also turn the water on as hot as I want in the shower. I don’t know why the hot water messed me up, but now I don’t have to worry about it.

The other good news is that I’m going to start working with another songwriter and producer in the near future. She and her boyfriend are working on a project centered on love and, in her words, “positive energy.” The nice thing is that, I asked, and worship music is totally on the table. I’ll do a little bit of everything. I like to be subtle when I write worship stuff anyway. I haven’t done a whole lot of songwriting lately because I’ve been reading and writing everything else. It’ll be fun to get back into it. I don’t expect this to be a super serious project, but the style of music is one I usually don’t delve into, so I think it will be good in general to get outside my comfort zone. Plus, you have to write to defeat writer’s block. Go figure.

I don’t really have much else to report. I’m kind of in that weird position where I have too much and not enough time to kill. My dad should be home soon, and my godmother is coming to stay for a few days, so that should be good.

Because in my world guinea pigs can fly!

Those Places

Sometimes my epilepsy gives me weird symptoms. I won’t go into all of them, but one thing is particularly interesting. Sometimes it doesn’t do much other than give a distorted visual image. The funny thing is, I can describe this image in quite a lot of detail. Usually, when I get this visual distortion, I see a room. It’s not just any room. It’s like it’s made up of colored light, like the light one sees when the sun is shining through a window and colors appear on the floor. There is a big window across from me. I can never see what’s outside the window, but it’s always there. There is also sometimes the silhouette or shadow of a desk, and a man sitting at the desk. The image always comes and goes very quickly. I often wish I could see more.

Very recently there was darkness on my mind. It was more than just sadness. It was like I had discovered a dark place in my soul. It wasn’t an epileptic symptom. I was trying to make sense of things, and instead of an explanation, I saw this. It was mountainous. There were no trees or plants. I don’t know what was behind me, but ahead, there was an expanse of gray stone, and in the distance, rocky hills. There was darkness all around me, but there was light on the horizon. The light barely reached me, but it reached, nonetheless, dimly showing me where I was. Initially, I wanted the light to go away. I wanted it to let the darkness take over. It was like the light was alive. After a couple of days this image or idea went away and took the darkness with it.

When I was younger, mostly when I was in high school, I would fantasize about meeting the perfect man; the love of my life. I had this image in my head of a man in a dark room, down on his knees, praying for me, because I was praying for him. My heart ached for this person I was waiting for; who I had made up. I sometimes tried to visualize myself in that room, bending down to touch him, and to help him up, but for some reason, I never could. I eventually said goodbye to him. I said, “I’m sorry. We’re never going to meet. You’re waiting for someone else, and I bet you’ll meet her.” I’ve only thought about him a few times since, and even then, only briefly. I think he has found who he was waiting for.

I did find who I was waiting for. I had a dream about him. I was in complete darkness, but for some reason I could see his silhouette. He told me to follow him, so I did until I saw a light off in the distance. He said again to follow him. Then I woke up. I wonder if the man at the desk in the room of light is the same person. I think I’ll find myself in that room someday. It always seems like I can see the light, but I’m not always in the light. It seems that sometimes to find the light, you have to find the darkness first. You have to see war to recognize peace. You have to be lonely to recognize love.

In that dark place in my mind, I initially wanted the light to go away. That initial desire only lasted a minute because as soon as I realized what I was feeling, I wanted the light to stay. I couldn’t let it leave. I held onto it for dear life. It wasn’t just light. If it had gone, I would have been alone. There was healing in the light that hurt my eyes at first. It said, “Don’t look away. Come this way. Just keep looking. Follow me.” I want to make that place brighter. If there is light in me, I want to find a way to let it shine.

Because in my world guinea pigs can fly!

Why I Sing

I have to close my eyes a lot in church now. It’s odd to me, but I kind of have to block the world out. Part of it is because of my relation to music, and how music and faith are tied together for me. At the beginning, I would sing because I liked to and because I could, and maybe because I just thought I was supposed to. After learning more about God and the Church and the reason for meeting together to worship, I sang because very few others did and because I was trying to encourage them to. Now I close my eyes. I pray and sing as if there’s no one else in the world but me and Jesus. Even when I have to look at the sheet music for a song, I sing as if there’s no one else to sing to.

I usually go to church on Saturdays because I’m not much of a morning person, and I came to understand; I came to actually feel something yesterday. After taking the Eucharist, I usually sit in my spot and pray. I pray for my friends, I pray for peace, I pray for our country… So probably all the stuff anyone would pray for at that time. Yesterday I just sat there and, to the best of my ability, thought of nothing except God.

On the way to the car, I found myself involuntarily grinning, and for a moment, it was difficult for me not to cry. I had touched God. Earlier this week I read some prayer tips. One of the tips was (in my words): “Shut up.” Prayer is supposed to be like a conversation. I know I talk a lot when I pray.

Last night I was having issues with my epilepsy. It sometimes doesn’t agree with my girly hormones and… You probably get the idea. I was trying to pray and couldn’t. The only thing I could get out was: “Father!” My brain wouldn’t let me think coherently. Eventually it got a little better and I was able to pray. Then I went to sleep.

This morning I came to an important conclusion. I have to learn how to pray without words.

Because in my world guinea pigs can fly!

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!

Why?

Last night my epilepsy decided not to behave. Usually this happens when it’s getting a little late (around nine or ten o’clock) for no discernible reason. I take my medicine at eleven AM, and eleven PM every day, but for whatever reason, I still get a little “brain fuzz.” It’s hard to explain exactly what happens, but it usually only lasts a few minutes at most. The problem is that it makes me tired, and I keep making the mistake of going to bed too early. The point is, I went to bed around ten last night and woke up at midnight, wide awake. I couldn’t fall asleep again until around five this morning. Coffee is a beautiful thing.

We figured out I had epilepsy when I was eight. I don’t remember when I started having seizures, but I do remember when I finally got medicine and they went away. I was totally fine on a very low dose until about my sophomore year of college. Since then we’ve been increasing my does periodically because I’ve been having “brain fuzz” more and more frequently. It’s mostly annoying more than anything else. Part of the problem is that it’s hard to explain exactly what my symptoms are because, interestingly, I can’t comprehend language while I’m having issues. I can’t talk, and I can’t understand when people try to talk to me. I say it’s interesting because, unless it’s bad, it doesn’t really scare me anymore.

Last weekend a friend of mine came to my house  for the first time. We sort of officially became friends last year. We had a class together and it turned out we had a lot in common. At least we’re both super nerdy. I graduated last May, and he’s graduating this coming spring. We’ve wanted to hang out since last year, but we never got a chance, so we’ve been talking a lot via Facebook. Last weekend my friend got to see what “brain fuzz” looks like. This weekend he wants to hang out again. I’m so glad. It just makes me feel weird and yucky when my friends see my brain betray me. I know they don’t care, but it bothers me, nonetheless.

Epilepsy is confusing from a spiritual standpoint. Sometimes it doesn’t even cross my mind to pray or talk to God, and sometimes I get seriously angry. Sometimes, depending on how bad my symptoms are, it terrifies me. I don’t know why I started having symptoms again just a few years ago, and I don’t understand why they seem to be getting worse, but I guess at this point I don’t really care. I don’t think it’s going to go away, so there’s not really anything I can do at this point. I know God cares, even if it doesn’t seem like it, and I know he loves me. Everything is going to be okay, and I refuse to believe otherwise. If he won’t get rid of it, and pills won’t get rid of it, there’s a good reason. Maybe I won’t figure it out, but that’s okay, too.

While I couldn’t sleep last night I read, and I found this: “Don’t ever lose hope or let your tears stop” (Lamentations 2:18). At first that didn’t make sense to me. If you have hope, then why are you crying? If you’re crying, then you must not be hopeful. God tells his people not to be afraid because he is in control. He also says not to worry. I’m really good at not worrying. People actually find it annoying. Of course I occasionally worry, but it’s really not often. On the other hand, things scare me. I’m jumpy, and I’m superstitious, which is a bad combination. I don’t think God is asking his people to literally not be afraid. I’m not sure that’s even possible. Fear is a survival instinct. It’s natural. I think he’s asking us to scurry to him when we are afraid and to remember that we can rely on him no matter what. He will always make things okay.

He says, “Don’t ever lose hope or let your tears stop.” I think he’s saying that it’s okay to fall apart. It’s okay to be vulnerable. It’s okay to be scared. He will carry us. I think we can’t be utterly vulnerable or helpless unless we do have hope. I can’t do anything when my brain misbehaves. I cannot for the life of me figure out why it happens or how to stop it. Sometimes it’s just a minor inconvenience, and sometimes it’s terrifying and infuriating. I kind of know how to get rid of my symptoms of they’re not so bad, but sometimes there is nothing I can do. If it’s bad enough I just have to go to sleep, and at that point I just have to say (sometimes without words) “Lord, I’m at your mercy. Please take care of me.” I always wake up. My brain always gets better.

I think God allowed me to have MD and epilepsy so that I would have to rely on him, so that I would know him, and so that I would understand things better, and maybe be able to explain some of those things. That’s pretty cool. He picked me for a special reason. I can live with that. I can play three instruments now. I can write well. I can snuggle my stupid little bird. I can play my nerdy games with my nerdy friends. I have a pretty awesome life. It isn’t perfect, but that’s okay. It’s darn good.

I get to invent words like Wuja: a thing that is too cute for words!

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!