Weird Love

My brother spent two nights this week making a stuffed-animal spider for his girlfriend because apparently she likes spiders. Friday is a good day for Valentine’s Day. I imagine they have something planned for tonight. This afternoon I listened to the Stations of the Cross, and though I couldn’t physically “attend,” I watched daily Mass online. In one of His revelations to Saint Faustina, Jesus promised that He would give great graces to whoever would reflect on His Passion in the 3:00 hour. All this week, I’ve been trying to figure out what to do for Him today, but honestly, what do you do for the God of the Universe?

I’ve had more seizures than usual this week. It’s more annoying than anything because if it happens around when I go to bed, it completely knocks me out, and then four hours later–so around 4:OO AM–I wake up and can’t get back to sleep for at least a couple of hours. I woke up this morning before the sun, tried in vain for a few minutes to go back to sleep, accepted defeat, and decided to pray the Rosary. Since it was already Friday, I prayed the Sorrowful Mysteries.

My mom and I went to a Mexican place for lunch today, and the sky was cloudless as we drove there and to a bakery to get a cake for later. It seems so simple, but the sky is probably my favorite thing that God has created. Sometimes it seems like He speaks to me in His sky. It must have been a couple summers ago now that I saw, for the first time, a blue diamond in the sky. I was in my driveway, starting out on, or coming back from a “wander,” and a white cloud formation came into my vision. It was shaped exactly like that: a blue diamond. Since then, a beautiful blue sky, with or without clouds, has been dubbed a “Blue Diamond Sky.”

Recently it occurred to me that I’ve occasionally been disappointed if I don’t get my blue diamonds, so I made up a game. Every day, God gives me a sky because until the end of the world, there will be one. Every day, I give that sky a name–blue or no blue–clouds or no clouds, but a blue sky is always a Blue Diamond. Usually, if I can’t think of a unique name for a gray sky, it’s a Glory Sky because blue or gray, the sky still speaks of God’s glory.

The Gospel reading today was from Mark. Jesus healed a man who was deaf and had a speech impediment. Sometimes I have an automatic reaction to these healing stories. He hasn’t healed me–at least not physically. Today I looked at myself and thought, “Lord, you can be glorified in this.” Saint Francis of Assisi is probably best known for once saying, “Preach the Gospel at all times. When necessary, use words.” I was introduced to my Lord by fellow students in College, and no one outright “preached” to me. If a gray sky can speak God’s glory, then so can my wheels or my weird brain.

Interestingly enough, among others, there are several Saint Valentine’s who are considered patrons of epilepsy. Saint Paul is also one of these. In fact, it’s speculated that Saint Paul had epilepsy, and this is what he called the “thorn in his side.” He says, “I asked the Lord to take it away,” but the Lord didn’t. The Lord told him, “My grace is sufficient for you, for my power is made perfect in weakness.” Jesus accepted weakness. God chose human weakness even to the point of the worst kind of death, and in fact, God the Father rose Him from the dead.

One of the Sorrowful Mysteries of the Rosary is the Crowning With Thorns. I confess that Jesus Christ is my King. This is the crown my King wears. I love language, and though my medication prevents me from having really nasty seizures, I do have various symptoms. One of those symptoms is that I lose the ability to use or understand language. If Jesus is the Word of God, it means that for a short time, God was silenced. After that, though, He was glorified; He conquered the grave, and 2,000 years later, little people like me won’t shut up about it. His power is made perfect in weakness. I don’t know what that means for me, but I know that I am weak, I know that He answers my prayers, and I know that He loves me in a way that doesn’t even make sense.

Living The Pipe Dream

When I was fourteen, I got a guitar for Christmas. It was an absolute piece of crap that would go out of tune after playing one song, or even before the end of a song. Soon after I got it, my friend, who had been taking lessons for a little while, taught me to play “Brain Stew” by Green Day. At that point I only knew how to play power chords, and I wasn’t going to start lessons until January, but I was immediately hooked. I learned some basic things in my first few lessons, and I wrote my first song. It was an angry punk song about a teacher I hated at school. It was terrible.

Like every other angry fourteen-year-old with a guitar, I had the pipe dream; I was going to be a total “rock star” in a punk band, tour all over the country, and generally be able to “get my way.” After my sophomore year, I mellowed out a little, which actually meant I went from being angry to being sad. That’s probably the best way I could describe it. Slowly, I resigned myself to the fact that the “rock star” thing wasn’t going to happen. I couldn’t find band mates, and quite frankly, it was just unrealistic.

Still, I kept writing songs. A lot of them sucked, as would be expected. By the time I was nineteen, I was still playing guitar, and writing an occasional song, but mostly I was learning covers because I could play them by myself, and people at open mics sometimes recognized them. I enjoyed that, but it wasn’t “the dream,” and at that point, I had no real vision in mind for what my future might look like. I was your average college freshman without much of a plan.

At the time I started school in August, I was agnostic. By the end of October, I was Christian. I’ve written this part of the story before, but it’s important, so I’ll make it short. I was lonely, and I thought I needed a boyfriend. I had started learning how to pray, so I had been asking God for help with that. I didn’t know it was a deeper loneliness that couldn’t be filled with another human relationship. He let me get desperate. I begged. He needed to make me wait because He needed to teach me that He was there to listen, and that I could trust Him, and even though I was ultimately asking for the wrong thing, He was going to help me. He needed me to be desperate because He needed to use that to build an actual relationship. At my lowest point, I said something along the lines of, “Please! I need your help! I love you!”

I hadn’t known it until I said it, but I knew it was true. As soon as I said it, a feeling like I have never really felt before or since came over me. I don’t know how to describe it, but it inspired my song, “You Answered.” The third verse goes:

You came to me soft and slow
Sweet and warm like a summer dream
And fantasy starts to fade away
As you replace my empty spaces

After that, I started writing more songs. Most of them were worship songs, and a lot of them were terrible. Eventually, I had enough songs to put together my first album, which came out in 2014. I graduated in 2015, and took a hiatus from songwriting to take a stab at writing a novel. After about three years, I realized I was much better at music.

Actually, I hadn’t stopped writing songs altogether, but most of my material was terrible. Still, I had one good one hanging around that I had never recorded, so I went back to the studio. I had thought I would just release it as a single, but one night before one of my studio sessions, I wrote a song in about two minutes. That’s barely an exaggeration. Now I had a dilemma because it was good. I decided if I could pull together one or two more good songs I’d do an EP. Now that we’re nine songs into what will be a full length album, I’ve realized something.

When I was fourteen, I had the same pipe dream as every other angry teenager with a guitar. Most don’t get to be musicians as their career. A lot of kids just give up playing after a while. A lot of people keep it up as a hobby. A lot of people have regular 9-5 jobs on top of their music careers, which don’t often amount to more than playing a few local gigs every week. I’m not a “rock star,” but songwriting is my career. Am I a success? I’d say it depends on who you’re asking. Do I make money at this? Not yet. Do I write good songs? Heck yeah! How do I know? People like them. More importantly, I know God is helping me.

My God gave me my pipe dream. When my epilepsy came back in my sophomore year of college, I had to face some hard facts. Travel isn’t easy to begin with because of my Muscular Dystrophy. Performing is often hit or miss because my meds don’t completely control my epilepsy. Being a performing artist just wasn’t possible. What I didn’t realize for some time was that it’s precisely because of my disabilities that I’m able to do this. Having a “normal” job isn’t exactly an option for me. That’s why I have time to work on a book and have a songwriting career.

As I’ve grown in my faith, I’ve realized that my “issues” have brought me closer to God, and He has had a plan all along. He has always known how much I love music. He allowed me to be that angry fourteen-year-old with a pipe dream, and in the end He gave me a choice. I could give up on that dream, or I could embrace it, or rather, His version of it. I’m great at writing lyrics. I’m a decent, but not absolutely fabulous singer, and I’m an average guitarist. I can write lyrics that glorify my God and hand them off to people who can glorify Him with their performing abilities that are doubtless, better than mine.

My dad suggested this to me several years ago. I didn’t choose this option because I was being overly possessive. Now I’m ready. It doesn’t make sense for me to hold onto something that I can’t use. I’m ready to write not for my glory, but for God’s. I don’t need recognition. I don’t need to be the star of the show. If nobody ever knows who wrote these songs, that’s okay. I will be overjoyed if one of my songs becomes popular because somebody else rocked it. I just want these songs to be heard. I love writing them, and I love the process. I even love struggling through my writer’s block because a lot of times, that’s when I pray the most.

In my song “Nothing Else,” there’s a couple lines that go: “This is enough/ a spark to start a fire.” I didn’t know God when I was fourteen. That first crummy guitar was a spark, though, and God could start a fire with that spark. Writing songs was the first thing I was really passionate about, and God used that passion to lead me right to Him. Of course the path was a little convoluted, but now I have more than a spark. I have His burning love that’s closer than touch, and He has my songwriting skills to use as He sees fit. Because of His love, I am living the pipe dream.

Love Stories

The past two days have been pretty amazing. Yesterday was the second meeting of the Carmelite group I attended last month. They have Mass at the meeting, which meant I got to receive the Eucharist two days in a row. I didn’t go to our regular Mass yesterday afternoon, so I went this afternoon. That means three days in a row receiving Jesus in communion. I’m planning to go to the worship thing tomorrow, so that will be pretty awesome. I’ve just been really happy this whole time. I went to bed last night with the thought, “I am loved,” in my head.

Before I got up today, I watched a short video of something a priest said. He was reading from the diary of Saint Faustina. She had written of a conversation she had with Jesus in a moment of despair. Jesus explained to her that He will call a despairing soul to Him several times, and even if that soul despairs of His mercy, Jesus will make a huge effort to prove He is loving and merciful, and that no soul is beyond His love. It’s only if the soul willfully rejects His mercy that He will let that soul go. In that conversation, Jesus refers to Himself as the soul’s best friend. Though I’ve been really happy over the past three days, I wondered for a moment at lunch today: could He really be my best friend? Then I thought, “Well yeah, I know He’s my best friend. It’s just weird because He’s God and I’m just me, and He’s perfect and I’m not.”

Yesterday I had to be at the monastery for the meeting at eight AM. I’m nocturnal. This is entirely against my nature. We didn’t really have much food in the house for breakfast, but my dad threw together an omelet for me, which was actually pretty good because it had broccoli and onions in it, but it didn’t have any meat. I don’t know why, but if I don’t have any sausage or chicken in an omelet, it does not fill me up. I ate some toast on the way, thinking this would help, but it didn’t do much, and I had a seizure in the car.

I was able to think coherently enough to pray a little just before we got there, so I said, “Lord, I want to do this for you, and I think this is what you want me to do, but if I’m going to do this, I can’t be fuzzy.” When we got to the monastery, I took an extra pill, and I was mostly back to normal by the time we got through morning prayer. Incidentally, yesterday was a celebration in the Church for the birth of the Blessed Mother, so we had cake. This obviously helped alleviate my hunger.

Several of the people there know about my epilepsy by now, and they’re really helpful and understanding. I have to take my medicine at ten and eleven AM, which are kind of inconvenient times during the meeting, so again I prayed. I said, “God, I’m nervous. You are a merciful God, and I know you want me here, so I need you to take care of this.” As soon as I finished praying, a girl whose name is also Katie came over and asked if I needed help getting my pills.

God’s mercy, love, and goodness really are unfathomable. Last night I started really thinking about a kind of love I’ve been feeling lately, but still don’t quite understand. I recently got a text from my “cousin,” with a picture. It was a sonogram of her son–my godson. The funny thing is, I was kind of hoping for a girl. When I saw that sonogram though, with the confirmation that he was a boy, I immediately fell in love. I had been praying for this kid all along and I was joking with my “cousin,” saying that it’s been awkward not knowing which pronoun to use. Now I know that I’m going to be the godmother of a little boy named Max, and I am ecstatic.

Just thinking about him makes me happy. This makes no sense to me. How can I love someone I’ve never met before? The craziest thing about it is that I don’t even like babies. I just know that somehow Max might change that. Earlier I was thinking about something I had heard from a musician I admire very much. He said, in a nutshell that it doesn’t really matter what we do. It just matters why we do it, and who we do it for. I’m starting to think there isn’t really one particular thing God wants me to do with my life. I do know one thing, though. I do what I do because I love Him. I don’t always love Him the way I should, but ultimately, that’s what God’s will for everybody generally is. Jesus said to love God, and love the people around us.

Looking back, I see the line of strangers I’ve befriended, and I see that most of the time, they have been people that the rest of the world passes by. After Mass today I was talking to my dad and laughing because I was thinking about how, when I was a teenager, all I wanted to be was different. I wanted to be nothing like everyone else. At the time, that actually meant befriending the people that others rejected. In fact, between my Junior and Senior year, I took a summer program for highschool kids at Berklee in Boston, and I made a very memorable friend. He was a homeless man with some form of Autism or something. I never knew his real name, but he called himself Polliwog.

I never made friends with any of the other students, but I saw Polliwog every day between classes. I played guitar for him, and he danced, and it made both of us happy. Though I didn’t recognize Him at the time, I think I saw Christ in Polliwog, and I’m convinced that that was the first step towards changing my heart so I’d let Him save me a couple years later. I still think about him from time to time, and I hope he’s doing well. When I was talking to my dad on the way home from church I joked that I always wanted to be different. I got what I wanted. I am different than a lot of my peers. I just never thought being different would look like being madly in love with Jesus.

In the end, though, being in love with Jesus automatically means striving to be like Him. That means loving like a crazy person. Before I knew Jesus, I befriended those the world rejected because the world rejected me, too. Now I love because I love Jesus, but also, I think, for reasons I don’t even understand. John the Baptist said that he had to decrease so Christ could increase. To live like Jesus means letting Him live through me, and love through me. God’s love and mercy are infinite. I am not infinite, but God can work miracles through people like Polliwog, and he can teach love through Max, and He can show His mercy through my hopeful prayers.

There is so much reason to trust and love the Lord, and to love those around us. All we have to do is choose peace when the world chooses violence; choose forgiveness when it’s easier to hold a grudge; choose faith when the night is at its darkest; choose love because love saves the world and love sets us free.

Suffering, Thunder, And Glory

Yesterday we had a pretty good thunderstorm near our house. I am twenty five, but there is still a five-year-old part of me that gets excited about thunder. My dad and I just finished watching all of what has been released of the series “Vikings.” A line that sticks out to me is when one of the main characters, Rollo, who is a viking warrior who marries a French princess, is explaining to his wife, “When you hear thunder, it’s just thunder, but when I hear thunder, I still hear Thor striking his hammer.”

Something I remembered as I watched the rain come down through my bedroom/office window yesterday was when God reveals himself to the prophet Elijah. 1 Kings 19-11-12 says, in effect, that God did not reveal himself in a great wind, or an earthquake or in a fire, but in a “still small voice.” This seems counter intuitive, but then I reflect on all the times it has seemed that God has spoken to me. As a kid, I was always looking for God in the thunder and lightning that I still love to this day. I don’t usually find him there, though.

I found myself reflecting, too on the idea the vikings had that, if there was thunder, then Thor was striking his hammer. That was just a given. The idea resonates with me. To me, as both a Christian and a fantasy writer, the idea that thunder is just thunder doesn’t quite cut it. When I hear thunder, I hear the sound of God’s glory. I can listen to a thousand worship songs, and don’t get me wrong, I love worship music. In fact, I think my favorite song is, “How Great Thou Art.” Those songs don’t compare to the thrill and joy I get when I hear thunder. I think that’s why the five-year-old in me will never grow up. What I mean is, God doesn’t necessarily speak through the thunder, but he can use it to remind people how awesome he is.

God’s glory is so obvious in his Creation that it’s easy to take it for granted. It’s evident in the sound of thunder, and the downpour falling on the roof. It’s evident in the flash of lighting, and in the dark, mighty clouds. It’s evident, too in the silence after the storm. Beyond that, though it’s evident in even the simplest things–the foods we eat, the things we smell, the colors we see, the softness of a pet’s fur or feathers–all of it.

Imagine how the world would be different if God hadn’t bothered to make color, or given us the ability to see color. Similarly, imagine if the world had been made without sound, or if humans didn’t hear sound for some reason. I acknowledge that some people don’t have the gift of sight, or of hearing. I would like to reflect on that, too.

I have been gifted with language. I have had a good education, and one thing I can confidently say I’m good at is writing, and I’m a moderately good speaker. On the other hand, I suffer from epilepsy. Epilepsy is a weird disorder, and comes in many forms. People experience it in different ways. In my case, I generally lose the ability to use and comprehend language, and in the worst cases, I lose awareness of my surroundings, but don’t exactly black out. Though it has no monetary value, language is something I personally value very highly, and it genuinely terrifies me when I lose the ability to communicate, even momentarily.

As part of my devotions every day, I read something from scripture. Sometimes I’ll just pick something out at random, sometimes I’ll use the daily Mass readings, and sometimes God will give me something to reflect on. Today I felt I needed to spend some time to reflect on the reading from today’s Morning Prayer (from the Liturgy of the Hours). It was from the book of Job. He poses the question, “If we take happiness from God’s hand, must we not take sorrow, too?” To be clear, God doesn’t want people to suffer, and he doesn’t impose suffering on people. He does allow people to suffer, and that’s hard to understand.

My dad has told me that when I’m having a seizure, or what I call “brain fuzz,” even though I don’t know I’m doing it, I sometimes repeat the word, “No” over and over. Something, maybe in my subconscious, is protesting, and I love that. I often know ahead of time when I’m going to have “brain fuzz.” My prayer used to be, “God, take this away.” When it became clear that He wasn’t going to, I changed it to, “Please let this one pass, but if you don’t, just stay with me.” Sometimes I think that, “No” is His way of saying with me that “this is not okay.”

In a way, I can appreciate what my brain fuzz does to me. I can appreciate how scary it is and how alone it makes me feel because I know that Jesus was alone through His Passion. This is very obvious when He says from the cross, “My God, my God, why have You abandoned me?” When I lose the ability even to think words, I am sometimes tempted to feel that I have been abandoned. I believe, however, that that subconscious “No!” is His way of being with me, even if I don’t understand it. This is my choice, and in this way, I choose to view even my epilepsy, and in particular, that, “No!” as a gift.

How does any of that have to do with thunder or glory? Sometimes I reflect on things Jesus said or did, either in Scripture or in revelation to Saints, and though I love Him, He is intimidating. During the storm yesterday, I thought about how I find thunder exciting and comforting at the same time. God doesn’t need to use words to reveal Himself to us. I hear His glory in the thunder because, as the five-year-old part of me might say, He is big, and I am small, He is God, and I am not, and even when my epilepsy takes my language–my treasure–from me, He gives me that rebellious, glorious, “NO!”

Because in my world guinea pigs can fly!

People

Today was a house cleaner day, which meant my mom, brother and I had to be out. Part of my prayer routine is to read something from scripture, whither it’s a few lines or a whole chapter from the Bible. Often, I’ll just read part of or all of the daily Mass readings, which I did today. In particular, Jesus said in the Gospel reading for today, “Amen I say to you, there is no one who has given up house or brothers or sisters or mother or father or children or lands for my sake and for the sake of the Gospel who will not receive a hundred times more now in this present age…” I wondered, as I often do, what am I really willing to lose for him? The fact of the mater is, dying sounds much less scary to me than losing. It’s a weird thought.

Just a few minutes ago, I was praying the Rosary, but before I did, I prayed something else. In the Catholic liturgical year, it’s now what’s called Ordinary Time. During Ordinary Time I cycle through the mysteries of the Rosary every day. Today happened to be a day for the Sorrowful Mysteries. I really didn’t want to go through these because they focus on his Passion, and I just didn’t want to think about that at the moment. I told him that, but I said I would because he actually had to go through it, and that matters to me.

When I was about halfway done with my Rosary, my epilepsy started acting up, just enough to be disruptive, but not enough to totally stop me from praying. It went away by the time I was finished, and weirdly enough, I think this might have been his way of allowing me to share what he went through a little more intimately. To be clear, I don’t like the fuzz, and I don’t think he makes this happen. I think he allows stuff like this to happen, and I don’t need to know why. I can accept it.

Thinking about it, I didn’t know, for example, that death didn’t scare me until I nearly drowned once. I’ve lost things for other people–in other words, I’ve given things away–but I didn’t know I was willing to lose those things until it got to the point where I had to decide what was most important. The fact of the matter is, conflict terrifies me. The idea of having to make the choice between a friendship and my faith is awful. I worry about this in particular because I have one friend whose ideals on many issues are quite the opposite as mine. Still, our friendship is twenty years old, and I think it would take a lot to mess it up, but our centers of gravity are not the same.

Other than a few acquaintances, I’m the only Christian I know and see on a regular basis. I want other people to share my faith for a lot of reasons, but partly, and maybe a bit selfishly, because being the only of anything is lonely. The fact of the matter is, my faith, in many cases is viewed as hostile or offensive, or what have you, and what I’ve realized is, though it hasn’t even threatened to happen yet, I’m most afraid of losing people.

Because in my world guinea pigs can fly!

The Ascension

I’ve had a weird couple of days. Yesterday my epilepsy was acting up, so I couldn’t work on my book. Today is the feast of the Ascension of the Lord in the Catholic Church, so I went to Mass with my mom at noon, and then we ran a couple errands and got lunch. Thus, I haven’t got anything done today so far, either. I realized something about this yesterday, however.

I know from experience that doing certain things on the computer exacerbates my symptoms. Given that both my work and many of the things I enjoy doing involve a computer or my Kindle, I quickly ran out of things to do. I prayed a lot, and played guitar for a while, then just lurked in my bed and listened to music. I quickly went from bored, to depressed, to angry.

I prayed some more, and man, did I let God have it. He didn’t say anything. He didn’t have to say anything. I was confused and angry about why this was allowed to happen, but I still trusted him. I don’t get his plan, and yesterday, I really didn’t like it, but it hit me while I was praying that I was so angry because I was unable to do what I assumed he wanted me to do. I assumed that he wanted me to work on my book, like I do most days. Really, I think he wanted me to pray yesterday, and that’s what I did. Beyond that, though I was angry because I wasn’t getting done what needed to get done. This was interfering with my schedule.

When I wake up in the morning, I usually entertain some inane thought or another, then after realizing that I’m actually conscious, I say “Good morning” because I know the Lord is with me. After getting dressed, my second prayer is, “I have a plan for today, but if yours is different, we’ll go with yours.” I think yesterday might have been God’s way of saying, “Sometimes our plans aren’t going to be the same, and sometimes you’re not going to like mine.”

Despite being angry because I wasn’t able to do much yesterday, I was grateful that I was still able to process language. I could think straight, and I could speak. What I realized yesterday is that I value my ability to work too highly. As I said earlier, today is the feast of the Ascension of the Lord. Our priest emphasized the fact that Jesus ascended to Heaven in human form, thus drastically elevating the dignity of human nature. My value is not dependent on whether or not I am capable of doing anything.

There’s a Mercy Me song that I like called “Even If.” A few lines from that song go as follows:

They say it only takes a little faith to move a mountain
Well good thing, a little faith is all I have, right now
But God, when You choose to leave mountains unmovable
Oh give me the strength to be able to sing
It is well with my soul

This became my anthem yesterday. My epilepsy is usually little more than a fleeting inconvenience. It usually doesn’t cause me problems for more than a few minutes. I won’t pretend that yesterday didn’t suck because it did. It royally sucked. Last night, though, my symptoms finally started going away, and I was able to read for a while before going to bed. I’m actually glad Jesus didn’t say anything while I was freaking out. I just needed him to let me cry, and he knew that.

I had to go to the mall with my mom this afternoon to get a chain for my cousin and chocolate for my friend. My cousin was just confirmed, and I got him a medal, but the chain isn’t long enough. I got my friend chocolate because her birthday is on Saturday, and we’re going to see the Avengers tonight to celebrate. There’s a very odd store at the mall. It’s odd because it’s a Catholic store in a place you would not expect to find anything Catholic. I ended up buying myself a medal with an image of Saint Faustina on one side, and the Divine Mercy image on the other. I also got myself a piece of caramel chocolate. The fact of the matter is, God’s goodness got me through yesterday, and today has been infinitely better.

Because in my world guinea pigs can fly!

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!