Tag Archives: Disability

Living The Pipe Dream

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

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

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

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

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

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

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

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

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

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

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

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

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


The Lady At The Bank

On Friday I had to go to the bank with my brother and mom. My mom was helping my brother get a credit card, and I just happened to be there because we had just got lunch. An employee took my peeps to his office while I hung out in the waiting area. Admittedly, I have a habit of going off on wild adventures in my head when I’m bored, and I can go very far away given enough time.

While I wasn’t on a wild mind quest this time, I was sort of staring into space and making patterns with the tiles on the floor. There was another man sitting in the waiting area, and another employee came over to help him with something. She took him to her office, but had to come back out to do something. When she noticed me, she asked my mother in the nearby office, “Is she with you?” The employee was standing right in front of me. I didn’t hear her, but my mom answered in the affirmative. Then the employee looked at me and said, “Just checking. Hi.” I said, “Hi,” and she walked off.

What I wanted to say, and what I should have said, is that when you see someone in a wheelchair, regardless of where they are or how odd it might appear they are acting, you don’t ask someone in another room if that person is “with them.” By doing so, you are making assumptions about a person you don’t know, you are being rude, and most importantly, you are stripping that person of a degree of dignity. It is exactly like seeing a dog and asking a person nearby if that dog is “with” them; if that animal belongs to them.

That employee was ignorant, and I can forgive ignorance. I want to make an attempt now to correct some of that ignorance. Only about fifteen percent of the world’s population has some form of disability. These range from anything from psychological to physical. Obviously physical disabilities are much more noticeable, and unfortunately, physical disabilities often do come with issues like Downs Syndrome. That means that people sometimes automatically assume that this is the case, and assume that people with physical disabilities will not be able to communicate with or understand them.

I want to touch on another issue, too, however. A huge mistake people often make is essentially doing one of two things to people with intellectual disabilities: things like Downs, Autism, etc. They either have a tendency to treat the vast majority of them as though they were less than human, or if someone with one of these issues does something that seems “normal,” they are turned into a hero. At worst, people with intellectual disabilities are often the victims of cruel humor. Though we preach that this is wrong, our society still accepts it because many assume that the people being mocked don’t know they are being mocked.

In any situation when interacting with someone with any kind of disability, start by assuming the best. Recognize that the person in front of you is firstly, a stranger whom you know nothing about, and secondly, they are likely capable of much more than you might assume. Understand, too, however, that every human being perceives the world in their own individual way. I, for example, do not like crowded areas because I am always sitting and I can get somewhat claustrophobic if I have many people standing around me. This is also due to the fact that I’m simply introverted. Another person in an almost identical situation as me might love crowds and large parties simply because they are extroverted.

Lastly, I have noticed from time to time, that disabilities can put people on edge. I can only attest to this from personal experience, and it happened more when I was younger. I think people were sometimes afraid that they would offend me if they said the wrong thing or asked the wrong question. Again, this is a subjective issue, but I am not offended by questions about my wheelchair, or my disabilities. I’m not offended when people point out that I’m “driving” badly, because sometimes I’m not paying attention, and I know I drive badly. Lastly, and this is particularly for parents: don’t pull your kids away when they’re curious about a wheelchair. It’s good for kids to be curious, and it’s good for someone like me to be able to assure them that I’m just a regular human trying to survive like everyone else. I would like to emphasize that. I am weird and quirky, but that’s because I’m a writer, not because I use a wheelchair.

Car Trouble

Several years ago, I posted the song, “Losing” by Tenth Avenue North on here when it was released on their album, “The Struggle.” The chorus goes as follows:

“Oh Father won’t you forgive them?
They don’t know what they’ve been doing.
Oh Father give me grace to forgive them
‘Cause I feel like the one losing.”

That song comes to mind today. My family has been without an accessible car for over two months now. Our solution when I absolutely have to get somewhere is for my dad to drive my wheelchair up a makeshift ramp into the back of his pickup truck, and sit me in the passenger seat. It’s lucky that I’m small. This ordeal has been a serious test of patience for me. I can only really go anywhere on weekends because my mom isn’t as physically strong as my dad, and it would be too dangerous, and too much work for her to get me into my dad’s truck. The fact of the matter is, though, the only place I can “walk” to from my house, is church. Knowing that my mom and I could escape if we wanted or needed to was a gift that I now miss.

The fact of the matter is, I am frustrated. The way accessible cars work is that one car company (in our case, Toyota), works with another company (in our case Brawn) to modify the car so that it has a lowered floor and an automatic ramp. The real issue is that when the car has problems (in our case, the doors and ramp aren’t working properly), it is often sent to both places because it might be a problem to do with the mechanical modifications, or it might be more of a computer related problem that Toyota can fix. Our car has gone back and forth for six weeks now because neither company wants to take the blame, and ultimately, I don’t think anyone really knows what’s wrong or how to fix it.

For various reasons, I am not a patient person. I know patience is a virtue, and it’s something I need to work on. It will likely always be something I need to work on. I’m pretty sick of this, though. It has happened before, and the customer service we have dealt with has been poor at best. Jesus said not to let anger persist. The people we are dealing with don’t know who I am, so I somewhat understand why they don’t really care about me as an individual. However, I have to believe that this has happened to other people like myself, and it bothers me that they might not care about any of us. We are just a number to them.

Jesus said to “Love your enemies and pray for those who persecute you.” Most of the time, my thinking is, “I don’t think I have any enemies.” It’s getting harder for me not to consider these people my enemies, and the fact of the matter is, I don’t want to pray for them. I will not consider them to be just a number, though. I may be angry about how my family has been treated, but I will pray for my enemies.

Nothing Into Something

Although I generally think abstractly and look at the big picture, when it comes to certain important issues, I can be at least reasonable, if not totally logical. The reason I say this is that I’ve been anxious lately. This is mainly because I’m impatient and I’ve had difficulty getting a meeting with my priest to discuss some things. I really want to figure out where I’m going or what I’m supposed to be doing or who I’m supposed to be talking to in terms of my next step in my spiritual life. While I’m waiting for my priest to call or email me, I’ve started doing some of my own research. He has suggested some things to me, so I’m not totally flying blind at this point.

In doing so, I’ve realized some things. The first is something I absolutely can handle and fix easily. I need to approach prayer better. In other words, I need to approach it less as an extra to-do list, and more as a structured activity that I’m doing with my God and Friend. The second thing is that I see myself as too broken for this. That is not an easy fix. When I say “broken,” I don’t necessarily mean sinful. I know that I’m spiritually messy like anyone else.

The fact of the matter is, I still have insecurities from when I was younger. Before college, I was one of the most unpopular kids in school. I was not actively picked on. Instead, kids acted like I didn’t exist. They ignored me. This made me feel like a waste of time and space. That makes it hard to accept that the God of the Universe might want me to be his in a particularly special way.

This, however, is tied to my other fear. I was treated the way I was for two reasons. The first was that I was friends with kids who were actively picked on, and I stood up for them. The second, however, is likely because I am disabled, and therefore, odd by default to any elementary or middle school kid. I question why God would want someone to intimately follow and serve him who is physically incapable of doing quite a lot of things.

I’ve probably explained this before, but my book started as a thought experiment. I was working on another project and hit an impassible wall. I said, “Well, I can’t stop writing,” so I just started writing off the top of my head. I ended up writing a very strange creation story. I thought it was interesting, so wrote another story. Two stories turned into four, so I wrote a list of ideas for more stories. I wrote some more and resigned myself to the fact that it wasn’t a list. It was a table of contents. I wrote some more, and shortly after I had written a few more stories, I prayed. “Lord, this is complicated. If this is going to be a book, I’m going to need your help. It’s yours if you want it.” Apparently he wants it, because he keeps helping.

Jesus died for me, so I have to live for him. I owe him my life, but I owe him more than that, and I don’t know what I can really give him. That’s ultimately what scares me. When it comes down to it, though, the truth is that love scares me. His love scares me. What’s really scary is that I can say, “No.” I’m not going to, but the choice scares me. The fact that I had a choice scares me. The fact that I ignored the choice for too long annoys me. The fact of the matter is, I started down this road when I was twenty one, but I didn’t know where I was going. Now I know a little better. I’m saying, “Yes.”

I have to remind myself that Jesus doesn’t always choose the most capable, exciting, influential people. His first followers, and many of the saints were basically nobody’s in the beginning. One of my favorite saints, Saint Faustina, started as a poor farm kid. She had trouble finding a convent that would accept her because in the early twentieth century in Poland, where she lived, a nun had to have a dowry. She didn’t, but finally the mother of a convent said she would let her in if she could pay for a habit. It took her a while, but finally she saved enough to pay for it. Through Saint Faustina, Jesus conveyed, in new and really amazing ways, his message of mercy that we will always need. She was a nobody, and now, just about a century later, she is super well known. This is just one example of what God can do, and I trust that.

Because in my world guinea pigs can fly!

P.S. I may be renaming the blog in the near-ish future, but don’t worry, I’m still here, and I’ll still be writing largely the same stuff.

“Me Before You”

I just read a review of the book Me Before You. I had never heard of it before, and the only reason I read the review was because a friend of mine posted it and the title of the article sounded interesting. Apparently there is a movie adaptation coming out in the near future, and based strictly on the plot presented in the article, this story sounds idiotic and evil. I don’t use the word “evil” lightly.

It’s supposed to be about a romance between a quadriplegic guy and his caretaker. He was paralyzed after being hit by a motorcycle and now hates his life. Apparently it is also over-emphasized  how people see and treat him differently. People are invariably awkward or uncomfortable around him. What’s even more problematic is that for one thing, he values himself so little that he is suicidal, and refuses to pursue what could be a loving, fulfilling relationship. It seems to me that he is largely portrayed as a burden or an object–at best, someone to be pitied and nothing else.

Normally I wouldn’t judge a story before I’ve seen the movie or read the book, but this really makes me angry for so many reasons. I was born with Muscular Dystrophy, and I developed epilepsy when I was eight, so my situation is different than that of Will’s (the character in the book), but the problems arising from this portrayal relate to disability in general.

I think it is true that the world sees people with disabilities differently. Sometimes people do pity us. Sometimes people are awkward around us. However, I noticed it a lot more when I was a kid. My peers were awkward. Sometimes I was shunned or excluded from things. However, I don’t think mature adults do this. Maybe it’s because I’m more comfortable with myself, but most of the time I don’t think people even see the wheelchair. They just see me. Often little kids look at me funny because they’re curious and they don’t understand, and I’m not offended. Their parents often try and get them away, so I make an effort to talk to them and act like a normal human being.

The fact of the matter is, disabilities are not something to be pitied. It’s just different. I can’t walk. So what? I am the first of my friends to graduate college. I’m the only one of my friends to have written and published music. I can write. They can’t. After reading the article this morning, I realized something else. If I was paralyzed, I’d have to be even more creative. This spring I took a few months of violin lessons. I don’t play violin the “normal” way because I can’t extend my arms enough. My dad made me a metal bar that fits into a hole in the side of my wheelchair and bends over my legs. I rest the violin upright on the bar, and play it kind of like a cello. My favorite thing is when people tell me I won’t be able to do X, Y, or Z, because I love to prove them wrong. I would love to hear about some of the creative things people with other disabilities have come up with.

I also love the question: “Do you mind if I ask…?” No one knows how to pose the question. They always trail off. I don’t know why, but I like telling people what Muscular Dystrophy is. Then I abruptly change the subject because my disability does not define me. This actually touches on a broader issue. I think, too often, people let small things define them. They sometimes put far too much emphasis on their own sexuality or the color of their skin or their gender or what have you. They do this because the world has done it to them for so long that it’s become second nature. It’s become their defining feature. I recently told my dad that when I was a little kid I hated the question “What do you want to be when you grow up?” I never had an answer. He said they asked because they were trying to put me in a box.

Our culture loves boxes, and they hate it when one box doesn’t comfortably fit in another. I am not primarily a disabled person. I am not primarily a woman. I am not primarily asexual. I am not primarily white. I am all these things, but I don’t really care about them. What matters to me is that I write well and that I love people, and that means all people, in a real, significant, tangible way. It matters to me that I’m an optimist in a largely pessimistic or even nihilistic culture.

The fact of the matter is, my disability makes certain things difficult. It makes some things impossible. That does occasionally bother me. Because of my MD I will never be able to live on my own. Because of my epilepsy I will most likely never be able to hold down a “regular” job. That’s fine by me. It’s all the more reason to write a seriously awesome novel, followed by many more. Most of my main characters have some kind of disability. I don’t focus on those. I focus on their strengths and their personalities. My story is about how a diverse group of people work together to dismantle a very problematic, illegal government program. The problems presented by Me Before You are all the more motivation to finish this thing and knock it out of the park.

Lastly, I want to focus on something that is of utmost significance. God made me who I am. God made a Katie with disabilities. To tell the truth, I think my faith is much stronger than it otherwise would be because of this. It makes me realize how much I need him, and it makes me realize how close he is to me. It makes me realize how much he loves me and how much he loves all of us. I know for a fact I’d be a very different person had I not had my personal complications. I would probably have different friends, and I might be interested in different things. I’d probably be more athletic. I can’t even imagine all that would be different, and if I could see that version of myself, there’s no guarantee that I would like it. I like who I am now, and if I were offered a do-over, I wouldn’t take it.

To anyone reading this who feels like disabled people should be pitied: Don’t! If you pity us, you obviously don’t know us.

To anyone reading this who feels bad for themselves because of their disability: Don’t! Seriously! It’s a giant waste of your time! Be creative! Be productive! Be happy! There is always something to be happy about! Always!

Because in my world guinea pigs can fly!

Nothing Between Us

I’ve always had different feelings when it comes to my epilepsy. When I was a kid it scared that crap out of me. It was unnatural. Something evil was in my head. What was happening? Why me? When I got medicine, it was like I had died and gone to heaven. My life had been changed. For many years it didn’t bother me at all. I never had seizures, and never even had any symptoms. Then in my Sophomore year of college–three years ago–it came back. I would have actual seizures, though not terrible ones (whatever that means). I sometimes lost control of my body. I was tired and angry, particularly angry at God. For a while, until we got it mostly under control, I was just scared.

These days my feelings are different. I have symptoms rather often, so it doesn’t scare me anymore. Being angry doesn’t really do anything either. I’ve asked God to heal me and to make it go away, and he hasn’t. I remember reading that Paul asked God to get rid of a thorn in his side. God said “no,” because it reminded Paul that he needed God. I think of my epilepsy kind of like that. I can often tell when I’m going to have issues, so these days I just think: “Okay. Whatever. It’ll only last a bit.” While I’m having issues I just try to pray, about anything, and often, I’m able to sort of “muscle” my way through it. Sometimes, if it’s bad enough that I can’t process language, I just try to focus on God in some way and wait.

I had a few minutes where I just had to wait earlier today, and I realized, that those are the only times when I just sit still. I’m not playing music. I’m not writing. I’m not listening to anyone or anything. I’m not even thinking about anything. Oddly enough, it’s the only time where there is literally nothing on my mind. It’s the only time where there is nothing between me and God: no weird thoughts; no distractions; nothing I have to do; no words.

I am someone who will prove that someone with Muscular Dystrophy can do X, Y, or Z. I absolutely love it when people assume I can’t do something because I love proving them wrong. I’m also kind of an impatient person. I wonder if God allowed me to have epilepsy as a way of saying, “Woh… slow down, kiddo. Don’t forget that I’m the one who made all this possible. Don’t let your ego get ahead of you. Don’t forget about me.”

Admittedly, I spend a lot of time in my head. As a result, thoughts about God sometimes take a back seat. Sometimes thoughts about spiritual things get confusing or complicated, so I just think “screw it,” and move on to the next thing. Sometimes God doesn’t make a whole lot of noise. He lets me mess up like a parent lets their kid mess up so they’ll learn. Honestly, I don’t know if any of this really has anything to do with my epilepsy, but I have to make it make sense somehow. It annoys me when things don’t make sense.

God can’t physically show up and bang on my door and say “Hey! I need you to listen to me for a minute!” I have to take the initiative. I be responsible and slow down. I have to take the time to read and figure out what God is trying to say. Sometimes I think he just wants me to stop and spend a little time with him, even if he doesn’t have anything to say. It’s easy to forget that God is a person, and it’s easy to forget that sometimes he just wants to be with his peeps.

Because in my world guinea pigs can fly!

Follow Through

On Saturday I was having some issues with my epilepsy, which took a little while to fix, and then I went to a writer’s group, specifically for science fiction writer’s. They meet once per month in Newton MA, which is about half an hour from where I live. I was the youngest person there by 20 years, and the oldest person there could have been my grandfather. They seemed like a really cool group of people. The age difference didn’t bother me. I just found it kind of amusing. We met in a little cafe, and it was noisy, so next month we’re potentially going to meet at my house. It was nice to have a good, stimulating conversation about a genre that I enjoy and care so much about. I’ve really missed this because I haven’t been in school since this past spring. It was also kind of intimidating because, being so much older than me, these people have read so much more than me and their heads are full of so much awesome stuff. It was so nice, though, because they’re weren’t condescending at all. I think they’ll be great mentors.

I’ve been talking to a lot of people about my book lately. It just has seemed to come up a lot in conversation. Sometimes I feel awkward telling people that I just graduated and am now writing a science fiction novel because it doesn’t sound like a real job. It’s often difficult to treat it like a job. It’s not always fun, but it’s also very flexible in terms of when I work and for how long, and what I do while I’m working. Sometimes I research technology, sometimes I research politics, sometimes I spend an hour on Google maps just plotting out where specifically things are happening and how those things will affect my story, sometimes I just work on notes, sometimes I work on the timeline of events, sometimes I write a whole chapter in one go.

The more I talk about writing this story, the more interested people seem to be. Sometimes I find it difficult to just sit down and write, but lately I’ve felt more excited, partly because people want me to finish it so they can read it. I know it certainly won’t be for everyone. It’s a science fiction novel, which in the literary world is often disregarded as nothing more than entertainment. I’m trying very hard to make this story important and intellectually stimulating. I want it to matter. It takes place in a post post-apocalyptic society, which means the world has already fallen apart, but now people have started to figure things out, and they’re rebuilding. I’m using this environment to explore a few different ideas. One aspect of my story is essentially a thought experiment about what happens to war when the military becomes automated (i.e. what happens if we have robot, or in this case, super-clone soldiers). Another thing I’m trying to do is expose some stigmas and unfair ideas and policies surrounding people with disabilities. Thirdly, I’m taking a look at what the world might be like in the absence of any religion or sense of a spiritual existence. Obviously I’m a little or a lot bias, but I’m trying to let my characters take the lead, and they’re turning into some very interesting people.

I was telling my dad about all of this earlier today and he told me that I just need to follow through, and that I often seem to have trouble with that. I start a project and then when things get too complicated I chicken out. I don’t feel like that’s entirely fair. He was referring to my musical endeavors, which have, at least for the time being, been put on hold. I’ve thought it through and a successful musical career doesn’t seem manageable. It’s not like I haven’t tried, but for one thing, it’s a colossal investment, which is something I presently can’t afford. Secondly, I can’t get gigs. I’ve tried. I really have. I’m just tired of being ignored in that department, so for the time being, I give up. Thirdly, I don’t think I can reasonably do it, physically. Say, theoretically, I became successful enough to go on tour. Right now I get tired after playing for an hour, so if I were to play longer shows, I would have to physically prepare for that, but beyond that, I can’t be having epilepsy symptoms in the middle of a song. It has occasionally happened at open mics, and it sucks. That kind of stuff would be way more manageable at book signings or what have you, assuming my book does well enough. Fourth, I already have connections in the literary world that I don’t have in the musical world, and I know more about publishing, etc. Lastly, I don’t want music to be work. I love it too much, I know I’m good at it, and I just want to share it; I don’t care if I get paid. I don’t want to treat it like a business because I want it to stay pure, kind of like this blog.

I will follow through with my story. I have thought it through and in so many ways it seems like a much more reasonable option, and it seems like I have a much better chance at getting noticed. I have until the end of next summer to finish it, which should be plenty of time. I know, at least basically, how the rest of the story is going to play out, and the later parts are going to be a lot of fun to write. I even have ideas for possible sequels. Even if this doesn’t do great in terms of payoff, it cost me nothing to make, and I will still consider it a success because this will be the best thing I’ve ever written when I’m done with it. It will need a lot of revision because I’m a perfectionist, but that just means it’s going to be great.

Because in my world guinea pigs can fly!

What Can And Can’t Be Done

Saturday was a rather musical day for me. We got home late from Maine on Friday, accompanied by my new friend, Ivan (Romanian violin). I didn’t have much time to play with him that night, so after lunch on Saturday I spent a while experimenting with different ways of holding the instrument and fingering the neck. As I’ve mentioned before, I can  play it sort of like one would play a cello. I hold the neck of the instrument up near my neck and reach down with the bow to play the strings. I was having to worry too much about it sliding, so yesterday my dad built me a little metal brace that holds it steady. As it is, I can almost kinda sorta play a major scale. I initially thought the lack of frets was going to be more of an issue, but my ear is good enough by now that it doesn’t seem like it’s going to matter that much. Yesterday I played for several hours because I can’t really even go outside at the moment. I’m allergic to something that’s in bloom right now, and it’s killing me. I figured out how to play a very squeaky version of Ode To Joy, as well as some improvised melodies. I quite glad with the progress I’ve made so far.

Nobody thought this was going to be a good idea. A lot of people thought I was going to waste a bunch of money on an instrument I wasn’t going to be able to play. I will most definitely be able to play it and make pretty things happen, so eat it, doubters! I love proving people wrong. It’s one of my favorite things to do. I’ve been able to figure out how to do just about everything I’ve wanted to–with the exception of skateboarding. That one would probably be a little tricky.

The guy who made my violin was super helpful and encouraging. He had a whole bunch of suggestions and was completely open to me finding an alternative way of playing. We need more people like him in the world. Picking out a violin and doing some experimenting at the shop reminded me of my first guitar lesson almost eight years ago. In short my teacher’s approach was: Well, this is how you’re supposed to do it, but it looks like we’re gonna have to do things your way, so let’s get down to business.

That’s the point. I don’t do things “the normal way.” I do things Katie style, but the fact of the matter is, I do things. There isn’t just one way of doing anything. I open doors with my feet more than half the time. My bird has learned to climb up my wheelchair to get off the floor. The more people are convinced that I won’t be able to do something, the harder I will try to get it done.

I find that people, especially people in the school system, are way too quick to assume that people are incapable. The special education department at my school practically controlled my life until I went to high school when, in fact, they simply wouldn’t listen to me. They thought I was incapable of focusing or getting anything done, so they assigned me an aid and hovered over me for eight years when the truth was I was bored. I was a normal kid who would have figured it out eventually. I would have got some bad grades, my parents would have nagged me, and that would have been the end of it. Instead I coasted and school took care of itself. For many years I didn’t care because I was a lazy kid who thought she was getting a free ride. You start to care about what other people think of you in middle school, though, and I realized that people were seeing me as broken. In my freshman year of high school, I wrote a strongly worded letter, using the best English I could possibly muster at age fourteen, and I fired them. After the first few weeks of my freshman year, I was free.

Don’t underestimate people, but more importantly, don’t crush their will. I’m a stubborn, outspoken person. My “issues” are only physical. Things can be harder and more intimidating when people have intellectual issues. This isn’t always the case, but it seems to be at least somewhat true from what I’ve seen as a mentor. Don’t tell anyone what they can and can’t do. Don’t talk to their parents about them while they’re standing right there. Don’t assume anyone can’t do something just because it looks difficult or even impossible. Especially don’t do things for people without even letting them try. Be encouraging. Be annoying even. Make people step outside their comfort zone. Make them try things. They’ll surprise themselves and they’ll surprise you.

Because in my world guinea pigs can fly!

The Word I Hate The Most

I really hate the word “disabled.” It sounds like there’s something wrong with me. I’ve been working on my story for the past couple of hours, and many of my characters have some kind of “disability.” Kithryd is paralyzed, and Iris has intense anxiety. Kithryd has telekinesis, and Iris has pyrokinesis. Before you have to ask, yes, this is totally wish fulfillment.

A couple of days ago I found myself griping about how I’m not physically capable of doing a lot of things. Because my body isn’t “normal” I will have to live at home indefinitely unless I want to go through the giant hassle of, first of all, finding a place to live, and beyond that, figuring out how to get help with things. I need help with really basic stuff. I need help bathing and getting from my wheelchair to the shower or my bed or what have you. A lot of things that most people would consider very simple are rather complicated when you’re me.

Most of the time this stuff doesn’t bother me, but the other night I was griping. The thing is, I’m capable of a lot. I’m creative. I’m intelligent (yes I’m bragging). I love like a crazy person. I can write. I’m unreasonably optimistic. I try to be humble and spiritual. I asked God the other night why he would give me a mind that can understand the world, and a heart that loves it and wants it to be good… and a body that’s so broken. I actually used that word. Broken. There’s something really screwed up about that.

When I was born I was diagnosed with a kind of Muscular Dystrophy that was supposed to kill me by the age of three. I believe I’m alive today because my mom prayed, and God spared my life. If I wasn’t supposed to be alive I wouldn’t be here. For the record, I am still undiagnosed. The doctors can’t figure me out, and you have no idea how hilarious that is to me. I revel in it.

I am not broken, and my characters are not broken. This stuff is on my mind now because I was working on the political and social atmosphere of my story. A lot of my story is meant to be about what’s going on politically, as well as the actual actions my characters take. After World War III, which took place around fifty or so years before my present story, the world’s population was almost wiped out, and many of the following generation (about 30%) were born with some kind of “disability,” however, they also tended to have various psychic powers. The corrupt government in my story started using propaganda to get the public to believe that these people were somehow “less,” and that many of them were even criminals because of their abilities. This is not necessarily the focus of my story, but it is going to be a prevalent part of the atmosphere.

The point is that when I was writing out my plans, the word “disabled” kept popping up, and this started to get under my skin. This word is so ingrained in our culture, that even I couldn’t think of a word to replace it. I am not disabled because God made me who I am. I’m not perfect, either, but I’m certainly not broken. The word “disabled” implies that there is something wrong with me. When talking about these things people focus on the things that people like me can’t do. People have to be unusually nice to people like me because our lives are so difficult. Our lives must be awful.

There is nothing wrong with me. I use wheels instead of feet to get around. I learned how to adapt so I could play guitar upside down. I intend to learn how to play violin. I can write ludicrously complicated stories. I was the first of my friends to graduate college. I have dreams. I want to change the world. How is that the mark of someone who is broken? How is that the mark of someone who is “disabled?” I’ll admit that I need help with basic stuff. This annoys me sometimes, but it is how it is and it’s not going to change, and it doesn’t mean anything. It especially doesn’t mean that I should be pitied. That is probably the worst thing you can do. Do not pity me. Do not pity us.

You know what? There is no “you and me.” There is no “us and them.” We’re all just different. I might not be able to get a job at Starbucks to make a little extra money (which believe me, I want to do), but I can teach middle school kids who Jesus is. I can love-spam the internet. I can express my ideas, and the ideas of others concisely and coherently. I can dream. I can trust that, despite the complications, I, and the rest of the world, are part of something excellent. I can stubbornly believe that everything will be better than okay. I can hold on to the fact that I, with all my weird quirks, am made in the image of God, and I am not broken.

Because in my world guinea pigs can fly!

The Forgiveness Of Birds

This probably means a lot more to me than it might to other people. I have a tiny green bird named Seamus, and when I say tiny, I mean he weighs no more than two ounces. Every day we have a routine. Every morning my mom gets up around 9:00 and lets him out of his cage and refills his food and water. Then around 10:00, the two of them come and help me out of bed. My mom has to help me with some stuff in the bathroom, so while we do that, Seamus sits on my shoulder and tries to kill my toothbrush and my hairbrush and the cloth I use to wash my face. One of his many nicknames is Murder Bird.

After we take care of that noise, I need help with the toilet, and since I can’t stand on my own, my mom has to pick me up (it’s a good thing I’m tiny). While we’re doing all of this Seamus climbs around all over me. This morning however, I had a near panic attack. I didn’t realize how far down on my back he was, and I leaned back into my wheelchair too quickly and almost squished him. He’s totally fine, but it scared the crap out of me, and I cried about it, admittedly, a lot.

After we were finished with all of that we went down to the kitchen, I calmed myself down and we all had lunch. Then my mom had to go out, so Seamus’ options were to hang out with me or go in his cage. He decided to hang out with me. He took a nap snuggled up close to my neck, and now he’s preening himself on my shoulder. I was super worried that he’d be mad at me or scared to be on me. I’m finding that the forgiveness of a tiny two ounce bird really means a lot.

Because in my world guinea pigs can fly!