What We Say In Silence

I didn’t write over the Triduum this year. Normally I do, but I was an emotional train wreck. I cried for most of the Easter Vigil Mass. I had taken a nap earlier on Saturday, so I wasn’t exactly tired. At 12:30, then, my dad and I started one of the Harry Potter movies and went to bed around 3:00.

Normally for us, Easter looks like getting up and having a feast with a bunch of relatives from New Hampshire and Maine. We had our book club on Friday, and planned to meet online for a bit. We talked about food and boredom and pets. Instead of our usual pile of food to feed an army, we got an order from Buffalo Wild Wing, and my mom ordered a chocolate cake and a carrot cake. After we chatted online, my dad and I watched the next Harry Potter movie. Then I went to pray.

It seemed like the Lord was asking, so I said, “I’m not angry with you. I just don’t know why this is happening, and I don’t know what you’re doing, and it’s kind of freaking me out.” That day I had Joy Of The Lord by Rend Collective stuck in my head despite not having listened to it in a while. The Chorus ends with, “In the darkness I’ll dance, in the shadows I’ll sing/ The joy of the Lord is my strength.” I thought about the first Easter. The disciples were together behind locked doors, afraid and uncertain about what even the next hour might bring. That felt familiar.

I imagined myself in that room with them. Most of them had fled and abandoned the Lord; all of them thought He was dead and that the previous three years of their lives had been a waste. They all knew that they were in very real danger. I imagined sitting there, and suddenly Jesus walks through the closed and locked door. Chairs are knocked over; people shout, but He raises His hand in blessing and says, “Peace.” In His language, though, it would have been “Shalom.” For some reason every fiber of my being hyper-focused on that “Shalom.” I wasn’t simply imagining this anymore; I was praying it.

In my meditation, He walked over to me, got down to my level (because I was sitting in a chair, sort of stunned), and showed me His hand. Instinctively, I took it, and it was like everything disappeared, even time. It was like He was silently saying, “I’m still here.” I waited for Him to do something; I was letting Him drive the bus at this point. I thought the scene would continue and He would show His scars to His disciples because that’s just what would happen next, but nothing else happened. For a moment, I thought about letting go so things could progress like they do in the “story,” but it was almost like He silently said, “You don’t have to,” so I didn’t.

When I finally opened my eyes and looked at my phone, I was surprised to see how much time had passed. I told Him that it feels like the world got pulled out from under me. Then I realized that His world had got pulled out from under Him, albeit in a different, and much more painful way, but He knows what it feels like to be thrown into all-of-a-sudden chaos. I also realized that He came back with scars.

I don’t think anyone is going to come out of this unscathed. Those who don’t contract the virus are still worried about their kids’ education, their financial situation, the health of their loved ones, their own mental health, their spiritual well being, or simply what the future as a whole will look like. For better or worse, this is changing us. The first thing Jesus said when He came back to His disciples was “Shalom.” For some reason that felt like I had found a point of gravity and I suddenly wasn’t just spinning off in space, bouncing off of asteroids. It felt like I had found a star and could rest there. Even though it wasn’t a physical touch, He held my hand and silently said, “I’m still here.”

Today I was thinking about constants and how valuable they are. My stupid bird still sleeps under my ear and screeches at the kids playing in the yard next door. I still play the same stupid video game with my dad. We can still watch Harry Potter. The water is still running. The lights still work. I can’t see my friend, I can’t go to the studio, I can’t go to Mass, and that stuff is scary. Most importantly, though, Jesus, the God and King of everything is still here. It’s a lot easier to listen to the chaos because it’s all over the news and social media and even in our heads and it can drive us crazy.

Yesterday, I started my meditation not really knowing what to expect. Early on, when things started shutting down, I was nervous, but said, “Okay, Lord, you got this,” but of course I’ve been listening to the chaos. Last night, in my meditation, the Lord stopped everything and said, “Shalom.” He’s done it before; He can calm the storm, and He can catch us when we’re sinking. It might still rage around us, but we can find His peace in our souls. Hold onto that Easter moment. Let Him hold your hand, and let Him be your star.

Losing Or Giving?

At the beginning of Lent I read a few suggestions of things to do when it came to prayer. I’ve actually had a really prayerful Lent so far. I’d say it’s going well. I haven’t been perfect about my fasting, but I chose a pretty difficult fast. Anyway, one suggestion that seemed like a good idea was to read through the Gospel of Mark start to finish. The suggestion was to read it all in one go, but I’m taking it really slowly, and reading a chapter per day, or even less than that if I feel God wants me to stay with something for a while.

The other night I couldn’t sleep. I woke up at 3:00, and immediately knew I was done for the night, so I said, “Lord, I’ll stay up with you if you want.” I got this feeling that He wanted me to read through His Passion. I Went online and read it, slowly, and stopped where I felt like He wanted me to. I’ll admit I cried. I just finished reading “Consoling the Heart of Jesus” by Father Michael Gaitley, which I highly recommend. In it, he talks about how Christ really does suffer with us. In a revelation to Saint Faustina, Jesus said that, if her duties permitted, she should make the Stations of the Cross at 3:00. The 3:00 hour, He says, is the Hour of Mercy. Because He died at this time, He said to Saint Faustina that He will be exceptionally merciful.

Yesterday and today I made this prayer. Between that and finishing the book, I can honestly say that I’ve fallen deeper in love with Jesus. Yesterday, two other significant things happened. I read Mark 8: 35, which is where Jesus says, “…whoever wants to save their life will lose it, and those who lose their life for my sake, and for the sake of the gospel, will save it.” For eons this has confused the heck out of me. For some reason, though, I stopped there, and kept it with me for the rest of the day. Later, I finished re-writing a song. I struggled with this re-write. It took me three hours or so. Incidentally, though, this idea of losing my life for His sake ended up in the new version, and I realized that I wasn’t losing anything.

Jesus lost His life for our sake, but what He really did was give His life to us. I’ve chosen to follow Him. The idea of losing my life is scary, but the idea of giving my life to Him because I love Him isn’t. The idea of losing something leaves this nasty feeling of uncertainty. When you lose something or someone, there’s a kind of emptiness that needs to be filled. Sometimes this is easy. If you accidentally left a water bottle somewhere, in other words, if you’ve lost it, you can easily get another one. It’s a little trickier when you’ve lost your phone, for example because that might have had important personal information on it. It would be especially difficult for me because I use my phone to write my song lyrics, and I haven’t transferred them all to my computer. It’s especially hard when you lose a loved one because that person is literally irreplaceable.

On the other hand, giving something away doesn’t leave that empty feeling that losing does. If you give something as a gift, especially, you know where it is, you know who has it, and you know that it’s treasured (ideally). Jesus revealed to several saints that what really bothers Him most is that the gift of His life is not appreciated by so many people. What consoles Him is when we do accept and treasure His sacrifice and His life. Losing my life sounds terrifying, for obvious reasons, but giving it to Jesus, who I know treasures it, isn’t scary at all. I know who I belong to, and I know my gift is treasured.

That probably isn’t too terribly insightful, but that’s what I got for tonight. 🙂

Something Worth Doing

This morning after I did my morning prayer, I played a stupid game on my phone for a little while. I went to bed very late last night, and really, I just didn’t want to get up. I could afford to just chill for a little, but then a thought came to my mind. I couldn’t help questioning why I was playing that game. It’s not actually all that fun, and I’m so good at it by now that it’s basically mindless. I couldn’t help asking myself if it was God’s will for me to be playing that game. My ultimate conclusion was that, while it was perfectly acceptable for me to be playing a dumb game, it probably wasn’t exactly what He wanted me to be doing.

Anyone who really wants to follow Christ ultimately has to ask what God wants them to be doing. When asking this question, though, most of us, myself included, are usually wondering what God’s ultimate plan for our lives is. We’re looking at the forest, without always seeing the trees. I reflected on this, and I asked myself, “What would God want me to be doing right now? I don’t have to be ready for work for another hour or so, and it’s not like I have to go far (I would be traveling from eating lunch in the kitchen back to my bedroom which would then be my office).” I came to the conclusion that, even if I didn’t have a concrete answer, I did know that God would want me to be doing something worth doing.

That begs the question: what makes something worth doing? What gives value to an action, practice, or effort? Ultimately, what gives anything value? I recently visited a group of third order Carmelites, and am considering officially joining their order. I’ve only visited them once, and I have a lot to learn, but my visit was amazing, and the people were probably the nicest I’ve ever met. I mention this because at the end of my visit, one of the women gave me a glass tube. Contained inside was water from the Jordan River and the Sea of Galilee, a tiny shell from the Sea of Galilee, and some dust from Mount Carmel; a mountain in Israel where the first Carmelites created their order. Measuring the worth of that tube in terms of money makes it worthless, but I thought it was an amazing gift.

Last night I was reading about the history of the Rosary, and I read that when it started becoming incredibly popular and well known, people would make incredibly fancy ones with precious stones on gold or silver chains. Mine is made of wooden beads on a plain cord. I bought that one partly because I’m the cheapest woman alive, but partly because a fancy Rosary would not be my style. It’s value is contained in what I use it for. I think about the things I consider to be my treasures. I have some religious items that I consider treasure, and some of them actually are nice, but I also consider my ability to use the English language a kind of treasure. Technology is also a kind of treasure because the ability to communicate, learn, and quite frankly, to be entertained, is valuable.

I also discovered something late last night. The value or worth of anything must be determined by something greater than itself. I often find myself marveling at the fact that the God of the universe wants anything to do with me. I am one in literally several billion people, but my Heavenly Father literally loves the hell out of me. Making sense of that love is confusing at best, and last night I found myself thinking, “Lord, you knew I’d never be able to walk. You knew I’d have epilepsy. You knew I’d be just as messy as anyone else. You knew I’d give up on you, and give up on myself for a while. You made me anyway, and you still chased me down. I just don’t get it. I’m not even important.” At that moment something stopped me. I think He stopped me because my next thought was, “Actually, you think I’m pretty important. If you say I’m important, then I’m important.” That thought made me happy.

I don’t know what God’s ultimate plan is for my life, but I do know some things. I call my godparents “Aunt” and “Uncle,” but we’re not actually related. A few months ago, I learned that their daughter, so my kind-of cousin, is going to have a baby this winter. Even before I knew this, though, I realized that I had a growing desire to be a godmother. I thought it was kind of weird desire, but I prayed about it a handful of times. This past weekend, it was decided that I would be my “cousin’s” child’s godmother. I have an amazing relationship with both of my godparents, and I hope to have the same kind of relationship with my godchild.

I often listen to Christian playlists on Spotify while I’m working. There’s a song that sometimes comes on that I kind of hate because it’s about how Christians spend too much time singing empty words and twiddling our thumbs while the outside world suffers. This song kills me because I am a sympathetic person, and I hate to see people suffer, but because of my physical impediments, I can’t go out and actively do much about it. I didn’t mention the song specifically, but I mentioned my trepidation about it to my godfather. He told me that my prayers are more effective and heard more readily because I can’t go out and precisely because I want to help. Despite the fact that I’ve witnessed the truth of it, I’ve had to have it hammered into me time and again that prayer is powerful.

I’ve learned that prayer takes faith, and prayer takes patience. It is absolutely true that God often works in ways we don’t expect, and He often takes His time. Sometimes I realize that God has answered me months or even years after I prayed for or about something. Conversely, sometimes He’ll answer my prayers within thirty seconds of me praying. It takes perseverance, and it takes practice. I’ve been praying the Rosary every night for, I think, nearly a year now, and I still get distracted. Sometimes I get a lot out of it, and sometimes I don’t. The point isn’t what I can get out of it, though. The point is what it can do.

I want to focus mainly on the Rosary because numerous significant miracles have been attributed to it. In 1214 the Rosary was presented to St. Dominic by the Blessed Mother to defeat the Albigensian heresy, which taught that the spirit was good, but the body was evil. Thus, they taught that suicide was a commendable practice. The Rosary, while essentially viewed through the eyes of Mary, so to speak, focuses deeply on the life and humanity of Christ, especially since the Luminous Mysteries–those that focuss on his miracles weren’t included until later.

The devotion of people faithfully praying the Rosary is attributed to nonviolent resistance to, and ultimate defeat of Communism in Brazil in the 1960’s. It was attributed to the healing of Father Patrick Peyton, an Irish immigrant to the U.S. who was diagnosed with Tuberculosis, which in the 1930’s, when he was alive, was incurable. In 1945, when the atom bomb was dropped on Hiroshima, eight Jesuit priests were together praying the Rosary less than a mile from ground zero. They miraculously survived, and suffered no radiation poisoning. Though not a miracle, I can certainly say that praying the Rosary has helped me to grow closer to Jesus and develop a relationship with Mary that I previously didn’t have.

The prayers of individuals can work miracles. That is absolutely true. I strongly believe, and I think I’m supported by history, though, that a bunch of people praying for the same thing can more readily move mountains. Even from a human perspective, it’s the difference between one kid pestering Mom or Dad for something, or two, or three, or maybe even six kids, if they have friends with them, all asking for the same thing. If you’re like me, you don’t always have people around to pray with you. That’s why getting to know the Blessed Mother, and maybe a handful of Saints is important. They may not be physically here, but they can and do pray with you and for you.

All of this is meant as encouragement to my readers, but also as a reminder to myself. If you don’t have the time, the money, or the physical ability to “go out” and volunteer or donate to charity, and that is a sincere desire of your heart, then pray. Do what you can, and don’t worry about what you can’t. Every day I can read, I can write, I can edit, and I can pray. When school starts back up for the kids, I’ll be teaching CCD. If you focus only on what you can’t do, you will ultimately do nothing, and that helps no one. Pray for the people doing the things you want to do because in this way, you are helping them, and vicariously helping the people they are helping.

I have focused mainly on praying for others, but I would like to emphasize that it’s just as important to pray for yourself. I would argue that it’s just as important to pray about nothing. We are meant to be holy and have a relationship with God. To have a relationship with anyone, you have to talk to them. I recently went to see Beck live, and I had a ton of fun. I had a ton of fun with Jesus because I prayed through the whole thing. I just said stuff like, “I’m having an awesome time. Thank you for this.” Pray when something is bothering you. Pray when you need something. Pray when you’re late to church and need a parking spot. He’s usually quick to help with that one. Pray when you find something weird or funny, and share the weirdness or the humor with Him.

Lastly, I just want to say that It’s perfectly okay to waste some time. I did a little while ago because, quite frankly, my brain was a bit fried. It’s important to make note of the things we do and the reasons why we do them. In the end, I felt that writing this was what God would have me do today, and I certainly feel that it was something worth doing.

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!

Thank God

It’s easy to forget to thank God for the little things. That being said,

Thank God for coffee.
Thank God for snow in April because it’s stupid and funny.
Thank God for another day.
Thank God for flowers and bird feathers.
Thank God for music.
Thank God for language.
Thank God for time to procrastinate.
Thank God for space heaters.
Thank God for miracles.
Thank God for his love, even, and especially when it doesn’t make sense.
Thank God for being not just the God of the universe, but for being your Friend; your King; your God.

Because in my world guinea pigs can fly!

Fear Is A Lie

I realized something recently. When I’m working, I listen to Christian music almost exclusively. I’m talking about bands like Tenth Avenue North and Rend Collective. When I’m hanging out with my dad (my mom doesn’t really like music), we almost exclusively listen to secular music. My preferences in both categories don’t cover a hugely wide range of genres because I know what I like. When it comes to movies, I’ll watch almost anything, from romance to action to horror films, as long as the story is good. I don’t mind what some might consider vulgar language, and I don’t mind portrayals of faiths or belief systems that contrast with my own. I’m not afraid of these things.

Similarly, I am beginning to care less and less about what people think when I say that I am Christian, and I believe the Christian God to be the only true God. As I said, I am beginning to care less. As a teenager, I purposefully separated myself from others, but it was not for faith reasons. I had no faith back then. Still, I didn’t care what people thought of me. It was out of spite. Now I have faith, and my God has taught me to love, and now that I do love, I care what people think of me. It’s odd, and ironic. I care what people think because I love. I need people to understand that I believe in absolutes and in objective morality, and though I’m not perfect, I try not to judge. What I am trying to say is that I care less about my image now, and more about whether or not people can see the real me. The real me is Christian.

The world breeds fear. It’s hard to overcome it because the world is just so complicated. There are wars, there is violence, there is hunger, there is sickness, and there is a multitude of other problems, not to mention the supernatural factors. I’ve learned that fear is probably the Devil’s most powerful weapon. The most important thing to remember is that Jesus has already won. That means we’ve already won. My mom and I are listening to a story right now that’s told largely from the perspective of a seventeenth century Jewish woman living in London. At that time in London, apparently the leaders of the Jewish faith condemned theater because it was vulgar. I remember hearing that Christians had very similar sentiments about early Rock ‘n’ Roll, thinking that it was downright evil. They said the same about games such as Dungeons and Dragons when that first came out.

Such fear is nothing but a lie. Of course there are lines that need to be drawn. I don’t listen to certain bands or even just certain songs by bands that I otherwise like because they insult my Lord or my religion, for example. However, fearing something and ignoring or condemning it are two entirely different things. There are things we as Christians can ignore, tolerate, and even enjoy, even when these things are not explicitly Christian. There are also, of course, forms of entertainment or other practices that should be spoken against. Obviously this requires discretion, and I believe there are plenty of people braver and better equipped than myself to do this. My aim in this post is to speak against fear. I’m not a warrior, and I’m not a coward.

I started thinking about this recently because I’ve started getting bored of the same phrases and imagery that are used over and over in so many worship songs. I want real worship, and I want real artistry, not a bunch of lines that are copied and pasted from Scripture on top of yet another new melody. This is done because it is easy, but also because Scripture is the Word of God, and we love it. We trust his word, and it gives us comfort and hope. It is understandable, but it is also overdone. God himself is an artist. His plan and his way of doing things are totally strange, yet beautiful. We are made in his image and likeness, and as Christians, and especially as Christian artists, we should aim to mirror that. Be bold, be strange, venture into the absurd, do not be afraid to love, and above all, do not give into fear.

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!