Tag Archives: Epilepsy

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.

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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!

Growing Up With Me

I just read a few posts from 2012-the year I started my blog. It’s interesting to see how the site has grown up as I’ve grown up. I already thought I was a Christian when I started blogging. The truth is, I didn’t personally know Jesus yet. I believed he was the God of the universe, and I vaguely knew that he saved the world, but I didn’t yet understand that he had saved my soul because he genuinely cared about me personally and wanted to be my friend. In 2012 I had some pretty funny, some good, and a lot of naive ideas. My posts were also a lot more varied in terms of subject matter back then, which I guess is neither here nor there. My posts these are largely about work and God, though sometimes they’re about stories in general or random life stuff. The blog has also largely turned into a way of procrastination, as well as a space to dig for treasure, and hopefully find some truth, whether I like that truth or not.

In the almost seven years I’ve kept the blog, I’ve learned a lot and I’ve gained just over three hundred followers. I don’t think all those people come here often, but that’s okay. This blog has been a companion in my many journeys that have taken place in the course of such short a time. It has been my companion through college, finals, insomnia, epilepsy, faith, hope, fear, love, and milestones. In a lot of ways, it’s kept me going. It’s been a place where I can share my truth, which sometimes, as ugly as it can be, just needs to be squirted out in muddy water colors. This is where frustration and triumph happens. This is where failures are confessed and victory proclaimed. This is where messes are made with the joy of a child, and I admit, in the grand scheme of things, I am one.

I write this as an encouragement to all my fellow bloggers, journalists, and writers in general. Tell the truth. Tell your truth, but more importantly, tell God’s truth. Fear nothing. Writing takes courage, and honestly, sometimes clicking the “Publish” button can be terrifying. Click it anyway. Sometimes we write something, expecting it to get us tons of attention, and no one gives us a second glance. Keep writing. In every circumstance, keep writing. When the world is falling apart keep writing. When you’re on cloud nine, write about it because sometimes the rest of us need to hear what cloud nine looks like. Sometimes your good day can be a happy five minutes for someone who is having an otherwise crappy day. Stories, especially true ones, teach us empathy, so write them. Keep writing, and don’t stop. Write without a reason. Write because you like to. Write because you know you’re good at it. Write because you think you’re good at it. Write even if you suck at it because it brings you joy. Just don’t stop.

Because in my world guinea pigs can fly!

Who Do You Trust?

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

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

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

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

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

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

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

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

Because in my world guinea pigs can fly!

Random Banter

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

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

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

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

Because in my world guinea pigs can fly!

Those Places

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

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

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

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

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

Because in my world guinea pigs can fly!

Why I Sing

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

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

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

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

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

Because in my world guinea pigs can fly!