The Disabilities Dichotomy

The fact I have a disability is pretty darn hard to miss. My skin looks like something escaped from a B sci-fi movie, and I get a lot of comments on my appearance. A lot of comments. Lately, though, something strange has been happening to me. I seem to be constantly forgetting that I have a skin disorder; I always seem to be surprised when I catch a glimpse of my skin. I know it makes no sense: how can I forget I have a skin disorder that I've had for nearly twenty-three years? Honestly, I can't explain the psychology behind it.

I have begun to think a lot about disabilities this week because of it, though. I know that there are many people who define me by my ichthyosis, and I honestly can't blame them. If one of my friends seemed to be the missing link between humans and dragons that'd stick out pretty firmly in my mind too. What surprises me the most, I suppose, are people who define me by something else. A long, long time ago (during my senior year of high school) I remember being brought to tears by a single comment. We had just finished one of the performances of the Holiday Dinner, a huge Christmas choir concert (with food) wherein I was one of the narrators. I was thinking about getting to go home and sleep off all of the wassail I'd consumed when a woman I didn't know approached me. She said, "You know, I really loved your performance. I was really touched."

My role, the Queen, had a particularly great monologue about the Savior and the meaning of Christmas. It frequently put me near tears, so I was not too surprised that it had an impact on someone else. "What really impressed me," the woman continued, "was you. I didn't notice your skin until someone else pointed it out to me. You were so confident and strong that I could only look at your eyes; you really know how beautiful you are." I was caught completely by surprise. I have never been a renown beauty; in fact, in high school I was officially one of those "awkwardly pretty" sorts that never got asked to dances. More than that, though, I was...astounded that she had not noticed my skin. I was under the impression that everyone noticed my skin first and me second. To have someone see beyond the scales was amazing. I started to cry even as I thanked her for her kind comment, which in turn made her cry My experience with that concert has always held a special place in my heart because of moments like that.

After a time I began to accept my skin as a banner of honor. I told myself that it meant I had survived the torture of elementary school, the agony of middle school, the dejection of junior high, and the loneliness of high school without giving up. I had been teased, oppressed, hurt, and neglected, but I was still alive. In some ways, pride in my disability began to get in my way. Frequently I would do idiotic things like push myself too hard or get involved in things that were unhealthy for me. (Like fencing... People who can't sweat really should not fence.) One day, though, someone asked me if I had an identity beyond my skin. The question made me uncomfortable, and with good cause. My skin was me; I was my ichthyosis. That lead to a time of major reevaluation of my priorities and paradigms. Not long after I was given a blessing to have my skin disorder healed; I was certain it would work. Weeks passed without my skin disorder clearing up, and I could tell the people around me were frustrated. They had thought that my skin needed to be healed, but what they did not realize was that I was what needed healing. My skin disorder is, in many ways, a psychological condition. Many of the ichthyosis youth hate themselves and hate their appearance. I understand why they do because I have been there and have felt that way. After the blessing, though, ichthyosis wasn't my identity, it wasn't the cross I had to bear, and it wasn't my badge of honor; ichthyosis was just something I happened to have.

Over the years I have learned to laugh at my skin. I tell little kids that I am one of the X-men (since I'm an actual mutant) and at fantasy conventions I joke that I could write the best dragon narrative ever (life with scales is never accurately represented). I've learned to smile at the people who ask me if I'm burned or dirty, and the stares don't burn into me the way they used to. My identity has changed, and I love the new way I view myself.

This week, though, I want to address something that concerns me a little. I have a very dear friend who I love very much. She always tells me how brave and smart and wonderful I am--even when I'm not. This past month this friend's brother has been the focus of a lot of media attention. He is an autistic teenager who did something I admire very much: he earned all of the merit badges in scouting. Now, I do not want anyone to misunderstand me. I think his accomplishment is fantastic, and I think he deserves all the praise this world has to give. What confuses me is that I have known several young men who have made the same accomplishment without getting any recognition beyond a little four line blurb in the town newspaper. Were their accomplishments less because they don't have autism? I had been under the impression that any young man who earned all his badges was something of a superhero, and I wish they would get as many accolades as my friend's brother.

Forgive me if I am not making very much sense. I suppose what this is all about is a matter of two words: "special" and "unique." Now, I know that these words have a whole lot of meaning behind them, and that most people can't agree on how they're different. I believe that "special" is something that comes from a person's heart while "unique" is something innate about them (like autism or ichthyosis). This week I have asked myself time and time again, "Am I special because I am unique, or am I unique because I am special?" In other words, I wonder if God gave me my skin disorder because I am special or if something special came out in my personality because of my ichthyosis. Confused yet? I know I am.

At the heart of this entire matter is the issue of how other people perceive me. I am grateful that so many people look up to me and admire all that I have accomplished; their belief in me gives me strength. I sometimes worry, though, that if I did not have ichthyosis that my accomplishments would not seem as great. I worry that I would be just like the hundreds of boys who are "normal" and are never recognized for the amazing things they do. This world would be a much better place if everyone felt like their accomplishments mattered and that no one was more "special" than anyone else. But it won't happen. What I ask instead is that people see me as a talented young woman with the determination to overcome any sort of obstacle that is put in my path rather than that "amazing girl with ichthyosis." I think most of the people in this world who are disabled feel the same way. We want to be our actions and our accomplishments rather than a single element of ourselves. Most importantly, though, I want to recognize the fantastic, amazing, and special people in my life. They have overcome so many trials and obstacles that would have brought less people down and they still find such great joy in life. They are my heroes; they are who I want to be like when I grow up. They are the truly victorious.

Breaking Up Is Hard To Do

No, this is not about a boyfriend. Sadly, I seem to have a particular lack of those over the past few years.

No, this is about a friend. Well... yes, friend probably would be the best word to describe things.

The amazing thing about college is that suddenly you are thrown in with a group of people who know nothing about you, have no expectations of your personality, and are just as scared as you are. This is a great chance to live up to your own hopes of becoming a better person and really cleaning off the slate. That was the first thing that really endeared college to me, if only because I had spent so many years before that building a persona and keeping good people away from me.

At school, I was able to make a group of friends who would shape the next few years of my life--and will have created a change that will last all of my life. Of the original group, though, I am only friends with two of them now. It's a very peculiar thing, to not be friends any more.

I suppose I'll go into storytime, if only for my own benefit. The stories, I don't think, will have as much impact on you.

The first friend I made at college was a girl who goes by the handle of Shematite online. I had moved in a little early (due to being on the Freshman Housing Board) and everything was... absolutely lonely. When I walked past her door, her nametag fell off. So, I picked it up and knocked, hoping she would be in. Shematite seemed amazed to see another person, and when I heard Nightwish blaring from her computer we got talking. It was wonderful, like I had found someone I could honestly relate to. We became such fast friends in that week that people assumed we had known each other for years instead of days. It was wonderful. She was a writer just as much as me, and we had a million things in common.

But there were times, though, when things didn't work. She would randomly disappear into her room for hours, occasionally days, and would never come out. It was heartbreaking, especially since we could tell something was wrong and she would never talk about it. Well, in the coming school year Shematite, Kit, and I decided to live together because we got along so well. We'd found the perfect place that had great rent--even if I would have to share a room for the first time in my life (Shematite couldn't stand to share a room, so I had to). When it came time for classes, though, Shematite finally sat us down and told us she wasn't registered. She couldn't afford school, but had moved down to Cedar anyway. We were hurt and confused, wondering why she hadn't talked to us about it. Then came the waves of sickness, which would follow anyone in the house getting sick and lasting for weeks after. It only got worse and worse until, at last, Shematite (we presume) got fired from her job because she never went. And then she was admitted to the hospital.

She was gone within the week, not really bothering to say goodbye or anything. I was hurt by it, hurt to the point that I did some stupid things. When she would bother to email, however rarely, I would be a bit snipey in return and never let her forget that she had run out on us. Eventually, thankfully, I did get past this point, and I tried to get her talking to me again. But she is the same old Shematite.

We invited her to come to Harry Potter, as a sort of reunion of the old gang, and she agreed to come. Two hours before the midnight screening we had tickets to, she texted to tell us her parents had taken both cars to Brigham. We wondered why she hadn't told them she was coming. I consider that friendship dead, though it has never officially been declared that in so many words. I figure it is for the best, though, because she clearly has issues she needs to work out and I have things in my own life I need to change. I wish Shematite the best, especially as far as her health goes, but I honestly don't think I will ever see her again. Consider it a gut feeling.

A more gruesome story concerns another person I counted a friend: Zach. He was a return missionary who came back for spring semester and lived on the floor below ours. I met him in my History of Theatre 2 class, and we immediately hit it off. Zach was a warm person, quiet and thoughtful, and remained my friend up until this past spring semester. Suddenly, it was like he had disappeared off the face of the planet. There is no chance of my talking to him again, though, as he attempted to murder two of his friends earlier in the summer. Honestly, I am just glad that it was not me or someone I was close to. It's scary to realize that a person can change and be so frightening without your knowing it.

Another, Mike, is really not to be blamed for our loss of contact. He went on a mission, and I am rather horrible at writing. Once in a while we still email, but it feels very much like I am talking to a suit and tie rather than the friend I knew. It's... disturbing, in a way, but he is having great success. Mike will do great things, I'm certain.

The last is probably the most painful. I met Rori at the college dorms, not too horribly long after I met Shematite. We didn't particularly hit it off at first--I don't really remember how we became friends at all. She was the outgoing blond with a plastic smile, and I was the surly brunette who somehow made the table crack up with laughter. But, we became close and even started to write together. For that, I will be eternally grateful. Rori helped me develop some of the greatest characters I will ever have, and she also helped me find the weakness in my own character. However, the discovery of my weaknesses came through the worst form: exploitation of them. Rori and I could bring out the worst in each other, everything from struggles with religion and sexuality to how anxious we could be. Most of the time, things worked very well. We would ignore the bad and enjoy the good while it lasted.

But, things just got to the point of being too much lately.

I recently prayed to find a way to work past all of the negativity in my life. Between my struggles with abuse, my horrid health, fights with friends, work, and religion, I felt like I was drowning. Then, out of the seeming blue, Rori stopped talking to me. I knew she was avoiding me, and I could feel the coming conversation--it was just a matter of how long it would take to break. Today... today was the day.

I don't know if you've ever broken up with a friend before, it is a rather strange experience. We agreed that we were not the best people to be friends at this point in our lives, and thought it would be best to... just not be in contact until things are better. I know that I need to clean my life up a great deal--I have struggles that are so personal only the Lord and I know about them. I also know that there is a lot she needs to do, which she can't do with me as a friend. So, for now at least, we're just... acquaintances with a history. It will be for the best, I know it. It just hurts like nothing else. Time and the Lord, though, will make things work out in the end. Everything will be okay as long as I do the work I am supposed to do.

And if Rori and I never get to being close friends again? Well, then it was not meant to be. I'm only twenty; there is a lot of life left to be explored. I am certain that I will make more friends in my life, and that things will get better. If nothing else, I am on the road to change.

I'm grateful that I got to have these friends at all, that they were able to come into my life. Because of them, I have a great novel that I hope to finish and publish, memories and stories that I'll gladly tell my kids, and knowledge about myself I otherwise would not have. Sometimes, that is all you can hope for when a friendship has to be put on the shelf.

I just hope I become the sort of person that is really worth being friends with. Things are not going to be easy in the midst of all of the coming adjustment, but I know I can survive it--I just may cry a little more.

I love you all, even those that have been put on the shelf. God bless you all, and may the path we walk be only as bumpy as it needs to be.