Tag Archives: hope

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!

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No Normal

I’m starting work (meaning working on my book) late today for two reasons. I had to take care of some other stuff, which is now done, and because my dad is traveling for work this week, which my schedule is more adjustable, anyway. I wasn’t intending to write a blog post, but in the course of doing my things that needed to get done, I came across this quote:

“Rejoice always, pray without ceasing, give thanks in all circumstances; for this is the will of God in Christ Jesus for you.”

Last night I came to the conclusion that while there is stability sometimes, there is no “normal.” In the past year, I’ve had to adjust to a “new normal” several times. This concept really solidified in my mind after Vermont’s funeral. At the time I had a desperate, but hopeful thought that eventually things would go “back to normal.” Then it hit me that they wouldn’t. Our family would have to adjust to a new normal. On a happier note, my brother is finishing his Bachelor’s degree this year, and will be commuting to school to get his Master’s (because he’s actually a genius). Finally all of our friends will be at home, generally at the same time. It will almost be like when we were kids. It will almost be like going back to what was normal for so many years.

Except it won’t. I still don’t know exactly what the future holds, but I’ve been trying to get in touch with a Secular Institute, which is a kind of religious organization that, in this particular case, helps people with disabilities, like myself, consecrate themselves entirely to God. I can’t entirely truthfully say that I don’t care about the consequences. I’m going to pursue this no matter the cost, but I don’t know how my friends will react. I want them to know that I’m still a total nerd and weirdo who will continue to play fantasy games with them. The only difference is that I’m officially making an unbreakable commitment to God. That will be a new normal for everyone to get used to, including myself.

I brought up the quote at the beginning of this post because I decided to do my “spiritual stuff” before work instead of after work today. Part of that “spiritual stuff” is just making sure I read something from Scripture. I had an idea of what I was going to read, but when I went to the website I usually use to read the Bible, this was the “verse of the day,” and for some reason, it sunk in deep, and it seemed like I just needed to leave it at that and think about it.

I do pray a lot. It’s often just conversational. The first part, “Rejoice always,” however, is difficult for me. It’s not about an emotional kind of joy. It’s about knowing, and being satisfied with the fact that Jesus saved us. That is always worth celebrating, even if whatever “new normal” we’re in is complicated, or weird, or even painful. The Gospel reading for this weekend was about when Jesus says to his apostles, “I no longer call you slaves, I call you friends.” Our priest explained that he said this to prepare them for what was about to happen. Before we are saved, we are slaves to sin. Jesus bought our freedom at a price.

At first, As I got to know Jesus, whenever I thought about that steep price, my response was always, “I’m sorry.” He’s had to teach me that I’m worth that to him, and because I’m worth that to him, I am objectively worth it. With his help, my response has changed to, “Thank you.” The fact of the matter is, my God intimidates me. The idea that anyone would go that far for me is insane, but the idea that the God of the Universe would go that far is both baffling and kind of scary.

I have to remind myself that God’s power is in his love. Jesus says in the Gospel that he is gentle and humble of heart. Saint Paul says that love is tender and kind. Sometimes the “new normal” sucks, but God is faithful. He is only ever good. If there is nothing else to be thankful for, remember that you’re still breathing; remember that you’re heart is till beating; remember that you’re alive; remember that the God of the universe wants to know you. That is something to be thankful for.

Waiting

Holy Saturday is an awkward day. It’s a weird time between remembering something awful, and anticipating something awesome. I never quite know what to do on this day. I know what to do on Good Friday. Yesterday I woke up at ten thinking, “What would be happening right now?” Then I realized that Jesus would have already been hanging on the cross for an hour. I’m an emotional person. I worked on my book yesterday, but I cried, too, and incessantly looked at the clock until three. I prayed, and thanked him, and started to figure out how magic would work in my universe. Last night I think I figured something out.

On Thursday I watched the Passion of the Christ for the first time. I thought I would cry, but I didn’t. I was just horrified. I’ve tried for a long time to figure out what he sees in me; why he loves me; why I’m worth saving to him. Ultimately, from a human perspective, there’s some lovable, endearing stuff about me, and I know that, but none of that is why he chooses me. He chooses me because I exist. He saves me because he loves me. He loves me because I’m his. Nothing about me makes me more or less worth it. I’m infinitely worth it to him no matter what, simply because he made me.

Still, I’m left with the question. What do I do today? The only person I’d be more than willing to bet knew for sure that Jesus would rise from the dead on the first Easter was his mom, so I wonder what she would have been doing. I imagine she would have been trying to help the apostles get through this day, mainly. Still, even knowing what was going to happen, she did have to watch her son tortured to death just a day earlier. Even for her, I imagine today would have been a day of weird mourning and anticipating. My grandfather died several years ago from Alzheimer’s. It was a long, slow death, and I prayed that God would end his suffering. I don’t know if that was the right thing to pray, but it was honest, and it was sad, but also relieving when he passed. It could only have been relieving because of the hope of Heaven.

I guess that’s kind of what this day is for. This day is for hoping. I never knew my other grandfather. My mom’s dad died of cancer when I was just a year old. I didn’t even know my dad’s father very well because he was quiet, and started getting sick when I was pretty young. Because I hope for Heaven, I look forward to the day I get to hang out with both of them, and other family who I’ve never even known. I’m going to the Easter Vigil tonight. It starts in darkness, but we light up the church passing the fire of one candle to the next, and tonight we get to announce that Christ is risen. Until then, we wait, and we hope, and until he comes in glory, we wait, and we hope.

Because in my world guinea pigs can fly!

Trust

Several weeks ago, in fact it was before Lent began, the Gospel reading was about how Jesus couldn’t fully trust a certain group of people because he knew just how messy human nature is. This crushed me. It left me with the nagging question, “Can he trust me?” That’s a nasty question because the answer is complicated. I wrote a while ago about when I nearly lost a year’s worth of work, but I chose to trust, and I gave the problem to God. I chose to trust him, and my work was restored. The truth is, God knows everything about me. He knows about all my messiness, but I know that trust is a choice.

I recently made a choice. I chose to say “yes” to religious life. I’ve started working with my priest to find the right order for me. This is a really new development, but it feels right. I haven’t entirely embraced this in the past, even though I’ve considered it off and on for quite some time. I haven’t been totally willing to say “yes” before because the fact of the matter is, it makes no sense for him to choose me or trust me. I have no idea what he has in mind for me to do, but I don’t have to know. Last night I was praying my rosary like usual, but instead of trying to simply visualize what was going on, I tried to imagine what Christ might have been feeling during his Passion.

The second decade of the Sorrowful Mysteries of the Rosary focuses on his scourging at the pillar. I saw and heard the whip in my mind. I saw his blood. More importantly, I think, I realized that each of those slashes was one of my sins. His mercy says to me, “You’re worth it.” I’m worth it. He sees something in me that I don’t because I am messy, and not only is he saying that I’m worth that pain, but I’m worth dying for. He’s saying that my soul is worth carrying and taking the guilt for all my sins. With that in mind, how can I say “no” to him? I don’t know what he has in mind for me, and my soul isn’t totally trustworthy in the sense that I am faulty, but God chooses to trust me. What I have failed to grasp in the past is that God chooses to trust, too.

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.

I Give Up. I Can’t Do It. I Need Help.

I’m not always aware of my sins, but when I become aware of particularly problematic ones, it sucks. I realized something tonight, though. I think I only figured out what my problem is with God’s help. I have a habit of interpreting things rather literally. Because of that, I’m a little obsessive about being perfect. That’s problematic when I also want to be humble. I start doing really well, but as soon as I realize this, I get prideful about it, thinking I’m getting good at the whole holiness thing. Then of course I mess up, and it really brings me down.

Jesus said to be his disciple I had to pick up my cross, deny myself and follow him. For a long time I’ve thought that meant accepting what difficulties the world threw at me, and trusting God to get me through them. I still think that’s part of it, but what God helped me to understand tonight is that I can’t carry my cross by myself. No matter how hard I try to be holy; no matter how hard I try to be perfect, without his help, that cause is lost. To follow my Lord, I have to accept my weaknesses, I have to accept that I deal with certain fears and temptations, I have to accept that I’m not perfect, I have to accept that he sees my sins and loves me anyway, and at some point, I have to give up and let him take over.

The fact of the matter is, Jesus needed help to carry his cross. His was a physical one, and in that time, he was experiencing physical weakness and pain. He could only carry it so far before Simon had to help. My cross is a spiritual one. My cross is believing that I can be perfect on my own. I can’t, and earlier tonight I gave up. I gave up and I prayed. I basically told the Lord that I’m not perfect. I want to be perfect, but I can’t, and that bothers me. I told him that I want to give up and let him help me. Letting him help is hard for me. I’m actually the type of person who really doesn’t like help from anyone, unless I really need it. I have enough sense to know that I simply can’t do certain things. This is one of those things I simply can’t do. I give up. I need help. That is my prayer. “I give up. I can’t do this. I need help.” Jesus had Simon to help carry his cross. I have the Lord himself to help carry mine.

Because in my world guinea pigs can fly!

Sanctuary

Last weekend my dad and I flew halfway across the country to attend my friend’s wedding. It was absolutely amazing until that night after I had said my prayers and gone to bed. At the party, it passed through my mind that I could forgo marriage for God, if that was what he was calling me to. The emotion behind that thought was not unpleasant. When I went to bed, however, I felt like ash. I could see my sin, and though I knew Jesus still loved me, that love was painful. I couldn’t understand what he saw in me; why I’m worth saving.

This past week, that feeling has been haunting. On Thursday, though, I went to Adoration, like I always do. During Lent, at Adoration, we go through the Sorrowful Mysteries of the Rosary as a group, so I prayed the Rosary, and I knew the Lord was there. That night, when I went to bed, I read through Luke’s account of the Lord’s passion, and then I started praying the Chaplet of Divine Mercy. About halfway through, I felt the Lord tell me, “You’re worth it. You were worth it.” When he tells me things in my heart, I have to believe him. I still don’t have a reason, and I still don’t understand why he loves me, but I don’t need to. Sometimes I need to be reminded, and I thank God that he’s patient.

A while ago, I was just sitting at Adoration, and I wasn’t thinking about anything in particular, and he asked me, “What do you see?” I was a little stressed out at the time, so I thought about it for a second, and then I said, “I see a forest, and it’s raining, and it’s really quiet… but it’s not dark rain, or cold. It’s kind of bright… and there’s treasure in the rain… but you can’t own the treasure.” That rain has become my sanctuary in a way. There’s something there, and I can’t quite figure out what it is, but it’s something apart from the noise and chaos of life. I’ve tried to build on what I saw in the sanctuary, but I can’t. It’s something he gave to me. It’s something special to think about when nothing else makes sense. I think God probably has a sanctuary for everyone, and it’s worth taking some time to be quiet and let him show it to you.

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!