Never Left Behind

On the way to the studio this past week I realized something. A little over a year ago, on a Wednesday night, I picked up my phone to look at Facebook or something equally as pointless, and the words and melody to my song “Heart Of Love” popped into my head. I remember it was a Wednesday because my studio sessions are usually on Thursdays. We were about halfway done working on what I expected to be a single when I came in with my new song, knowing it was good, and knowing we had to do something with it.

Twelve songs later, I have an album, but I wouldn’t have it if God hadn’t dropped “Heart Of Love” on my head. Something every Christian prays at some point in their life in one way or another is, “Lord have mercy on me.” What I didn’t realize was that this album is an answer to that prayer. I realized this because unfortunately, our society has a few specific marks that one generally must have by about their mid twenties that qualify them as a “real” adult. What I mean by this is that our society has determined that every person has a base value, and depending on what “marks” one has by a certain age, one is determined to be more or less valuable; more or less “real.” These marks tend to be 1) if one has earned a degree and has at least a relatively well-paying job 2) one is confident and chaste as a single person (oddly enough for our culture), or they are in a steady, healthy relationship 3) one has their own apartment, or one is paying rent to their parents with the expectation and prospect of eventually moving out.

Given my circumstances, I have none of these “marks.” While it’s true that I am confident and chaste as a single woman, because it is not entirely by choice, by the estimates of our society, it seems not to “count.” This leaves me with a dilemma. I know my worth as a child of God. I have also internalized my perception of how the world sees me as a disabled woman. I know that I will not move out of my parents’ house, at least in the near future. Because my art and my skill at writing doesn’t make a tangible profit, I don’t have what society considers to be a “real” job. There have been times when it seems I have been regarded with pity or condescension. I know that this is how I have perceived things, and my perception can be faulty. Nonetheless, this gets internalized; I look at how I don’t have these “marks,” and I see myself as less “real;” less valuable than the friends and acquaintances who have these “marks.”

About three weeks ago, I got started working on an article that I initially did not want to write. I started the writing and research, nonetheless, because I felt that the Lord wanted me to write it (it’s still in the works). On Friday, I was hit once again by the fact that  because I don’t have a paying job, in the eyes of society, my work, despite the fact that it is work, doesn’t really “matter.” It’s “cool” that I write music, but because I’m not a well known songwriter or a touring artist, the compliments are sometimes perceived to come with a note of pity or condescension, whether it’s meant or not. I wrote in my last post about how our culture fosters a tendency to regard others with skepticism, and I admit, my perception is that of a skeptic.

I prayed about this before going to the studio, and it hit me that the world may not see my work for what it’s worth, and I may not see it for what it’s worth, but the Lord does. The Lord said to me, almost audibly, “What you write matters to me.” I recently wrote about the Let It Go Box, which I’ve decided to rename the Redemption Box. In short, you hand something over to God, and let Him take control of it and redeem it.

I realize that over time, though we never really talked about it, I gave Him the blog a long time ago. While working on what I thought would be a single, my friend and I prayed; we handed it over, though the Box wasn’t a concept at the time, and that single became an album. Over the past year, I’ve wondered often why God chose me to work on what I know is really His project. I realized that this project didn’t need to exist; He doesn’t need it. He doesn’t need my blog or my music to save the world. He gave me things to write because that is what I’m capable of doing, because I’m good at it, and because He cares about me. He gave me something to do because He knows I love Him in a way that only I can, and because I want to help.

This is His mercy. Mercy is when someone sees another suffering, and does something about it. He sees when others devalue me, or when I devalue myself, and  He asks me to write something, or helps me write a song, and in doing so, He reminds me that what I have to say matters. He reminds me that He is my God, He loves me, and He will never leave me behind.

The Problem Of “Them”

My dad and I have been re-watching the Marvel movies leading up to “End Game” and the new Spider Man movie. We found a list that goes through them in an actual timeline that starts in the 1940’s with the first Captain America movie, and ends in the present day. I love super hero movies. In fact, I pretty much like any story that involves an obvious battle between good and evil. I like to see the “good guys” win.

It’s a really simple, but enjoyable story premise. We’re presented with it over and over, starting when we’re as young as five years old. At face value, that’s fine, and even good to an extent. Good and evil do exist; they are real things. The problem is when the lines between good and evil get blurred. The problem is when this story premise gets translated into “us” and “them” in our daily lives.

As I’ve mentioned before, Last fall I joined the Carmelite community in Danvers MA as an aspirant. It means I’m a newbie. For months, when talking about things we do, I would say “they” do X, Y, or Z. I’ve consciously had to train myself to say “us” and “we.” Our other members have been fabulous in making me feel welcome, and that I am part of the community, even though, as an aspirant, I’m not yet officially a member.

Last week my family got a letter from Social Security. It was vague at best, and said  they had detected something that might affect my disability stipend. It said if we had any questions to call the number they provided. We gave them a call, and no one answered. We gave them another call today because the letter said if they didn’t hear from us, they would call us today at 10:30, but they didn’t. Finally someone answered, and said that they would call us back before 3:30, but they didn’t. I mentioned in my last post that I am prideful, and don’t like to be helped. I particularly don’t like getting a disability payment. My mom took care of the phone calls today. It’s a good thing she did because if it had been me, things would have got ugly. I don’t normally have a foul mouth, but I told my mom to “tell them to cut the shit… Gimme the phone.” She didn’t.

So I went to the next option. I posted on Facebook, “Our government is run by idiots.” A minute later, I deleted it. I realized that I fell into the problem of “us” and “them.” I used to think I wasn’t allowed to be angry when I pray. That mentality, luckily, is long gone. After deleting my post I said, “Sorry, Lord, I’m just pissed off and looking for someone to blame.” I was looking for “the bad guy.” The real problem is in the system itself. It’s a system that fosters apathy, and it’s no one’s fault in particular. On the same token, though, it’s a system that fosters the “us” vs “them” mentality. I, and I imagine many others on disability have a tendency to see those working for the social security system as “the enemy,” while those same workers see us as, in a sense, “enemies” because we’re at best, inconvenient.

No individual within this messed up system is my “enemy.” What is it that I really want? I want to be left alone. What do the people in the office likely want? Me out of their hair. I recently went to confession because I was having trouble forgiving. I know that, in confession, I’m meant to talk with the priest as if I’m talking directly to Jesus, so I said, “I’m not sure I totally get forgiveness. I feel like I can forgive, but it’s more than a feeling, right?” He said, through the priest, “Yeah, it’s about letting it go. If you feel like you can do that, you can leave it in this room.” It seemed simple, and in that moment, I was able to leave it behind. The trouble is that it’s just as easy to pick it back up. It’s easy to pick it up because blame can evolve and mutate, and it’s easy to pick someone out as “the bad guy.”

The “us” vs “them” mentality; the idea of good vs evil is built into human nature. It’s a survival instinct. We weren’t always at the top of the food chain. That’s fine. God created us to be like Him, though. He built us with a consciousness that can understand right and wrong. He knew that we would eventually get to the top of the food chain, and on a human-to-human level, we’re not supposed to have enemies. The spiritual always trumps the natural, but our survival instinct is still there, and it causes us to be jealous of colleagues or friends; it causes us to categorize people where we shouldn’t; it causes us to see people who support certain political positions, religious beliefs, or whatever else, as “the bad guy.” It can cause us to see ourselves as “outsiders,” even when this is completely irrational, only because we’re new to a community, club, group, school, job, or even family.

Normally I don’t try to write my posts really as “advice” because mostly I just think too much. I think I do have actual advice this time, though. 1) Try to use “us” and “we” more than “They” when referring to a group of people you’re involved in, whether it’s your church, your workplace, your school, or another community. 2) Figure out who you haven’t forgiven, or who you see as an “enemy,” and figure out how to “let it go.” It can help to find a place to leave it, but it’s not necessary. It can be super helpful, though not always necessary, to leave it in confession (if you’re Catholic). 3) Pray for those perceived “enemies.” It can be a bit difficult to get started, but it can eventually feel really relieving.

Human

I was at a seminar at our church last night about the humanity of Christ. Obviously there’s a lot to talk about there, but I came away from it with one particular conclusion that I thought I needed to share. I’ve been slowly making my way through the Gospel of Luke, and I’ve been reading it differently than I normally do. It’s hard to explain, but it’s like I’m actually hearing Jesus talk, instead of just reading what he said. Sometimes I’ll reword the lines on the page just slightly so I can “hear” it better, and in doing that, I’ve come to understand Jesus, and therefore, God’s personality better.

I used to read certain things Jesus said as if he was being impatient or snarky. When I was just starting to read the Gospels on my own, there were a lot of times the words, translated into English, on their own, made him sound kind of like a strict, emotionless teacher and not a whole lot more. I’m thinking of the many times he tells people they have “little faith.” On the other hand, he tells his disciples that someone with faith as small as a mustard seed could move mountains. That can be confusing. I’ve discovered that, yes, I do have little faith, but God answers my prayers in amazing, and often unexpected ways.

Last night in the seminar we discussed human nature in general. Human nature is the interaction of a person’s body and soul. However, our human nature is flawed by original sin. Christ’s is not. He reveals to us, then, not only who God is, but also, what humanity is really meant to look like. In essence, I think, he reveals to us the truth that we were made in the image and likeness of God.

The final and most important conclusion I took from the class last night was that, yes, God loves everyone no matter what, but what I think most, including myself, neglect is that he wants desperately for us to love him back. This is evident most in the Old Testament. Our priest explained something to me after the class that I hadn’t understood before. What we perceive as “God’s wrath” isn’t exactly God “reacting” to what we do, but is a consequence of us straying away from his love.

Because in my world guinea pigs can fly

“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!