Tag Archives: Mosaic

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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Continued…

In my last three posts I talked about my hope to be a consecrated virgin. Things are moving as they should be. I’ve been praying a lot and looking into better ways to pray. I met with the vocations director this past Friday. She was nice and gave me good advice. She told me the most important thing to do was to find a spiritual director who will help me figure things out, and to slow the heck down.

Yesterday I helped teach eighth graders about death, which was kind of hard, not because I find the subject depressing or awkward, but because they do. We had to talk about heaven and hell and purgatory, and I guess it’s just a lot for fourteen year old kids to digest. I also finally told Father Patrick about what I’ve been thinking about, so now everyone who needs to know does know–that being my parents, the two priests at my church, and the people who are helping me along. Also, one of my friends knows, but I don’t think I should tell anyone else until I know more what I’m doing.

Anyway, my mosaic still isn’t finished. These things take more time than one might think. I keep reassessing it every time I work on it, which I guess is normal for every art project. I added a design piece, and I have a few to alter. The bottom half of the background is just about finished. The reason it’s taking so long is because I have a lot of small parts in the design that are hard to work around. I’ve also started working on an idea for my next project.

I’m actually hoping to make several mosaics that share a common theme: Who is God? This mosaic is symbolizing the moment of creation: God is our Creator, so the actual design is an abstract representation of the Big Bang, but there’s parts of the design that are meant to show that the Universe was created out of love, and there’s parts of the design that are meant to show that even at this moment, God knows there’s sadness to come.

My next mosaic is going to show God as Savior. I haven’t worked out the design yet, but I think I have to show that to save us, he had to be a victim, a conqueror, and a friend. In this case, I actually do think friendship is the most accurate way to describe it. I’ve got an idea of the materials I want to use, but I think I’m not going to know how to design it until I have the pieces.

My third mosaic is going to represent God as Guide through this life. I have absolutely no idea how I’ll design that one. Probably what I’ll do is look at some motifs from the New Testament, play around with some of my own ideas, and take it from there. I could also use some stuff from other stories I know. I think I’ll also want to use brighter colors for this one because for the mosaic I’m working on now, I’m using somewhat dark materials. That’s actually why I’m replacing a bit of the material I have on this one. The red glass I’m using is too dark, so I got some slightly more orange stuff at the store.

I gave up TV and movies for Lent. It’s actually been fun, and I’m learning a lot. I’m rereading the Harry Potter books, as well as some spiritual stuff, and I started working on a new song. My mom went out, and my dad went to bed early the other night, and I realized just how much time we waste watching TV. A week ago, Tuesday, My friend and I watched more of Once Upon A Time. He freaked out when I told him about my TV fast. What I didn’t know, and what my Godmother informed me of, is that you can break the fast on Sundays, so we’ll just have to make that work until Lent is over. Yesterday I did watch the second half of a documentary called “Everything and Nothing.” It was so confusing that when it was finished I had to take a two-hour nap. I did watch a few hours of Once Upon A Time with my friend last night, too, but I’m being a good puppy.

Incidentally, Easter falls on April sixteenth this year, but my family always goes to the Easter Vigil the night before. My birthday is April fifteenth, which means I’ll be celebrating Christs’ resurrection on my birthday, which is ludicrously epic.

Because in my world guinea pigs can fly!

Day 3

I’ve had an interesting day so far. It technically started before the sun came up. I couldn’t sleep last night, so I lay in bed and made up a weird story for an hour and a half or so. It wasn’t bad for bored-at-two-in-the-morning. I remember a lot of it, but I don’t think I’ll bother writing it down. I think it’ll be my secret insomnia story.

I got up around 10:15 because I was supposed to come up with the lesson plan for today’s CCD class yesterday, which doesn’t take long, but I forgot, so I needed to have time to do that plus eat lunch. That all got done and the lesson itself went swimmingly, although I think I occasionally get a little too complicated for my nine-year-old students. When I was a kid I hated CCD. It wasn’t taught well. I just want them to know Jesus. I definitely didn’t know him when I was a kid.

After my lesson I came home and assessed my mosaic. My dad and I got a lot done last night, and I realized I just need to glue one more design piece down before starting on the background, which is going to be all black tiles. It was cool to realize that I now know how to complete the puzzle. We ended up talking a bit about mosaics in class today because, surprisingly, most of the kids didn’t know what they were. One of the kids asked me what mine looks like. I told him it currently looks like a mess.

I didn’t have a whole lot of time to do mosaic things, though, because I had to get upstairs before Kathy came over. She was super nice and cool and kind of reminded me of our family friend who lives in Florida. What she told me was so reassuring. I, Katie Curtis, can become a consecrated virgin. I still have a lot of thinking to do, but I’m pretty sure this is exactly what I want, and there’s nothing getting in my way that I can see. She said the next thing I should do is read a document on this vocation that’s provided online and meet with the director of vocations in Boston.

The most helpful thing she said, though was that, while I’m working through all of this, I can say that I’m dating Jesus. It sounds weird, but I’ve been wanting to be able to say that for a long time. I’ve loved him for a long time in a way that has felt more than friendship, and I haven’t known what to call it. It was just this weird in-between thing. I think I’m right. Everything is telling me that I’m right. It’s kind of ridiculous. Right now I’m listening to very weird music that I’m not sure I even really like, and I haven’t got anything done on my Mythology today, but I don’t even care. I’m in a stupidly good mood.

Because in my world guinea pigs can fly!

Yup…

Today I got up and my mom said since it’s Valentine’s Day she’d take me out to lunch. I just wanted take-out, but since she offered I agreed, to be polite. Unfortunately we had an appointment, and therefore, didn’t have enough time to eat a sit-down lunch, but I got my buffalo chicken wrap. It’s my favorite thing in the world, but it’s super unhealthy, so I’m careful not to give into my craving too often.

After our appointment, Seamus (my bird) desperately wanted to go for a ride in the car, so we took him to the Starbucks drive-through with us. Several of the employees there know who he is by now. There are plenty of people who drive through with their dogs, but I think we’re the only bird family. Plus my best friend works there, so I’m sure she’s told them all how actually nasty he is. He doesn’t like people aren’t part of his flock. He just looks cute from a distance.

I got some more of my mosaic done last night. I’m thinking I’m going to need a lighter shade of blue or maybe teal. right now I’m working with black, white, red, and blue. My dad was helping me and he was perplexed at what I was doing last night because I was kind of haphazardly putting pieces down. I’ve been trying to tell him that I’ve had a concept in my head, not a complete, perfected picture. As I get more done, though, I get more of an idea of what it’s “supposed” to be.

Kathy (the woman I mentioned in my previous post) did end up getting back to me. We’re going to meet at my house tomorrow. I don’t know why I’m nervous. I guess part of it might be that although the idea isn’t exactly new to me, I’ve been kind of skirting around it and now I’m finally taking the plunge. There’s also the annoying thought in the back of my mind: “What if I’m wrong?” There are really two ways of looking at it. God calls everyone. I know that, so either I just need to shut that doubt out for good, or if I am wrong, it means I need to figure out what he actually is calling me to.

Last night I came across this: “Every word we speak was taught to us by God’s Spirit, not by human wisdom. And this same Spirit helps us teach spiritual things to spiritual people. That’s why only someone who has God’s Spirit can understand spiritual blessings. Anyone who doesn’t have God’s Spirit thinks these blessings are foolish.” (1 Cor 2:13-14 CEV) Admittedly, there are times when I find myself thinking about things Jesus says or does, in the Gospels and throughout time, and I think, “Lord, that’s crazy. You’re crazy. I’m crazy. All of this is crazy.” This quote that I found last night just made it make a bit more sense.

Anyway, I have a bird to harass and art to make.

Because in my world guinea pigs can fly!

Life Stuff

I haven’t posted in just about a month. I really haven’t been up to very much, but at the same time, it kind of feels like I’ve been making subtle changes. I recently joined a Catholic writer’s group. We might go to a conference in April. I was in a writer’s group last year, but I was the only member under the age of forty, and we ended up talking about other peoples’ work more than our own. It just wasn’t a good fit. The members of this new group are all my age, and it’s much more focused on sharing original work. I think it’ll be a good motivator. I’ve felt kind of less motivated to work on my mythology lately, but I have still realistically been getting a decent amount finished.

My dad and I have also decided we’re going to start making mosaics. When I made my first one for my friend’s Christmas present I thought it would be tedious, but it was really just relaxing. I’m going to make a bigger one to put in our basement, unless my mom vetoes it. Otherwise I’ll just put it in my room. It’s hard to explain in words, but it’s going to be Big Bang image from a loving and intentional creation standpoint. When it’s finished I’ll post a picture.

Next month my family is meeting my godparents’ family and a family friend/honorary aunt for a few days in Florida. I think most of the trip is going to be spent hanging out by a pool, which I’m really okay with. It’s been cold here. I’m sick of cold. As far as I know we’ll also go to Universal for a couple of days and we’re doing an escape room at some point. I’ve never done an escape room before. Since we have eight people with us, we’re going to do two different rooms. I wanted my brother on my team, but my mom claimed him. I guess she can do that. I’m going to have my godparents and my dad on my team, though, and they’re very smart. I’m just nervous because I’m not always great at puzzles.

Eons ago I wrote about how I felt God was calling me to formally dedicate myself to him in the Catholic Church. I avoided it for a long time because the idea was freaking me out, but I’ve started really feeling this weird pull that I can’t exactly describe, but I know it has to do with that, and I’m not afraid anymore. I know I said before that I wasn’t afraid, but this time I won’t chicken out. I’m forcing myself not to chicken out. Otherwise this feeling will drive me crazy. Plus, if it’s from God, it can only be good, anyway.

Anyway, this post is admittedly a means of procrastination, at least partly. At the same time, this, along with my more personal journal, is a means of emptying my brain so I can be more focused on my fantasy work. I’m twenty three and I still feel like I have to make excuses for not doing my homework or something. High school scarred me for life.

Because in my world guinea pigs can fly!