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.

Nevertheless, I Know in Whom I Trust

Several years ago, during one of the most difficult times in my life, I was trapped on a tour bus bound for Branson, Missouri. It was at a time when I felt very much alone: many of my friends had turned on me, I had broken up with the guy I had convinced myself I wanted to marry, and my faith was in the negatives. At that point, being stuck on a bus for thirty-four hours seemed like pure Purgatory. I was very blessed, though, to have one of my (few) remaining friends on the bus with me, a brilliant girl named Tami. She was the sort of steady, sweet person who saw goodness in me even when I was waspish and cold; and, she was able to act as a balm to my blistered soul. While we were trapped on the bus I told her about an idea I had been nagged with: to turn a passage of scripture into a song. She thought it was a brilliant idea. The only problem? My sense of rhythm was rather lacking. I could not do sonnets, I could not dance very well, and I most certainly did not feel I could write a song. Tami, though, told me that I might as well try. During that bus ride she acted as my support, my confidant, my assistant, and my editor; by the end I had finished the first draft of my song.

While we were stuck in those tiny, cramped seats I had one of the most amazing experiences. For the first time in three years I felt truly whole again, and I felt as though my heart were at peace. I had thought myself past feeling, and suddenly I was awash in emotions. At three in the morning, long after Tami had fallen asleep on my lap, I tipped my head back and stared up at the ceiling. Silence reigned over the bus: sleep had taken everyone but the bus driver and me. In that safe cocoon, I let myself think about the two people I had been writing my song for: my dad and my grandfather. They were the foundation on which I had built so much of myself on, and they were the rock I could fall back on when I gave up on myself. But I had been betraying that relationship of faith and trust. I had spurned their help, discarded their love, and turned my back on everything I believed.

Something I almost never talk about is that, at that time, I believed in nothing. I had convinced myself that God would not let me suffer if He really loved me, and so His existence had to be a lie. I had also convinced myself that my church was false, since it believed in the God I had turned from. I hated myself, hated going home, hated people who had once been my friends, hated my school, hated where I lived, and just hated with every ounce of passion I had in me. I was emotionally and spiritually dying.

My grandfather, who I look up to so much, faced a similar fall when he was younger. He had left the church, joined the army, began to drink and smoke, and turned his back on God. Eventually, he gave up smoking and drinking, and he eventually returned to the church. I was never brave enough to talk to him about that dark time in his life, but oh how I wanted to. I wanted to ask him what had made him come back, and I wanted to know if he truly believed in the church. But I never got the chance.

On the bus that night, I uttered my first prayer in over a year. I asked God to protect us while we traveled--our bus had been the victim of winds so strong we were constantly being blown in a zig-zag across the road--and I asked Him to help me understand why my life sucked. The wind did not stop and I did not receive a heavenly vision outlining how each moment of agony fit into the larger picture. But, I did feel peace and contentment. I even fell asleep, something I had been certain would not happen in such uncomfortable conditions. It is probably, on some level, ironic that I wrote something so spiritual during a time of disbelief. I, however, do not think it was. My soul, which had been starved for so long, found a way to express all of its anguish and hope for things my mind had dismissed.

The song I wrote was an adaptation of what is known as Nephi's Psalm, which is found in 2 Nephi 4. And yes, that is in the Book of Mormon. The original scripture expressed the feelings of a man who felt inadequate and weak, but still knew to trust in the Lord. Those feelings resonated with me on a deep level, even when I professed to not believe in God. My adaptation was meant to reflect the faith of my father and grandfather, and I wanted it to honor them. This was the result:

Behold, my soul delighteth in the Lord,
And ponders things which I have seen and heard;
And yet my heart cries, "Wretched man I am,
Encompassed 'round by temptation and sin."
Nevertheless, I know in whom I trust:
My Lord, My God, My Savior, and My Friend.

Behold, my God hath been my great support,
Hath guided me through affliction and pain.
He hath preserved me, filled me with his love
For He hath heard even my smallest cry.
By day, by night, in Him I have waxed strong
Through His great love my troubles cast aside.

Awake my soul! No longer droop in sin!
Rejoice my heart, and give it place no more!
Let me, O Lord, praise Thee forevermore
Delight in Thee, Redeemer of my soul
Encircle me within Thy loving arms,
For I have trusted Thee until the end.

It is not the most inventive adaptation of Nephi's Psalm in the world, but it was mine. In many ways, the second stanza was my father and the third was my grandfather. Little did I know that the first stanza would eventually come to represent me.

My problems were not solved in one night, or even a month. I fell into something of an uneasy truce with God: I admitted He was there, but I refused to love Him. I still blamed him for all of the difficulties in my life, and I did not believe He would want me even if I did turn to him. Bitterness kept its hold on me for so long...so much wasted time. That year I graduated from high school, and I went to study for my undergraduate degree. That first year was dreadful. I fell into bad habits, I toed the line with misbehaving, and I was a very negative influence on the people around me. And then March happened.

One night I felt particularly restless while eating dinner in the cafeteria. I was withdrawn, edgy, and felt somewhat worried for no reason. Excusing myself early, I went and walked towards the dormitories. Something about the sunset made me stop: I spent a good ten or twenty minutes just staring at it and thinking about my life. And then my phone rang. My father was on the other end of the line, and he had painful news to pass on. Grandpa was dead. His health had been on a decline for months, we all knew it was coming, but to have lost him... I was devastated. I stood there and cried. During high school I had prided myself on the fact that nothing could make me cry, and there I was sobbing like a child. But it wasn't because I had lost my grandfather. Instead, it was because I would miss him. I would not get to tell him about what I was studying, I wouldn't get to hear him say "and that" randomly in his sentences, and I wouldn't ever get to introduce him to whatever poor soul I ended up marrying. Some portion of my testimony had survived even the cruelest of attacks and my most fervent attempts to peel away my beliefs. I knew, without a doubt, that I would see my grandfather again. I knew that we would be a family again. The only thing that truly lacked to make that happen was that I was inadequate.

I prayed like I had never prayed before that night. My knees became locked up and stiff, my body was cold, and my eyes were swollen when I finally rose to my feet. That night I did not receive a heavenly vision assuring me of God's forgiveness, nor did my heart immediately change. I was still vice-ridden and suffering, but I had at last admitted that I could not make it through life alone. I knew that I needed God, and that I needed help. For two-and-a-half years I struggled to find my way back to God. Guilt, self-hated, and low self-esteem dominated that time in my life because I still did not believe that God would want to forgive me. Finally, when I felt as if my soul was going to be ripped to shreds, I went to my bishop. I told him everything: my mistakes, how I felt, and what I wanted to be. He paused for a long moment before saying to me, "The only person who has not forgiven you, Kirstin, is you." I was flabbergasted. I was an awful person. How could anyone have forgiven me? He then reminded me that I had done the work of praying and agonizing over what I had done, even though no one had called me out on it, and that God loved me. God wants to forgive, and God wants to love. I just had to let it happen.

Miraculous changes started to happen in my life. I made progress in my vices, I was able to forgive someone who had dealt me a great hurt, and I started to trust other people. The progress was slow in coming, but it was distinct. By the time I graduated with my undergraduate degree I was an entirely different person. Now, in my first year as a graduate student, I feel it is important to express the journey I have made. This week my faith has (yet again) come under attack. Myriads of people are trying to tell me what I believe, who I am, and what I am not. They say I am a cultist, that I'm not Christian, that I believe in polygamy, that I should accept things that go against my beliefs. Who are they to condemn me? Who are they to tell me what I can and cannot know? They are no one.

Only God may condemn me and those of my faith. Only I determine what I believe, what I know, and what I do not believe in. No amount of hated, derision, or persuasion will turn me from the path I have chosen. My suffering, difficult though it may have been, has made me stronger, and the bigger picture I had asked for all those years ago is starting to reveal itself. Prayers are answered. God lives. God loves. Latterday Saints are Christians. I know these things to be true.

My name is Kirstin, and I am a Latterday Saint. I know in whom I trust.

Love: Me

Ever since I moved to Alabama, I have been struggling. Negativity, self-loathing, and feelings of being unwanted have abounded in my life, and I couldn't put my finger on why. There are a few things I must admit to before talking about my ultimate revelation, if only because they inform one another.

My first issue arose from the awfulness that was my car. It broke on the way out to Alabama, and it kept breaking after arriving. I was constantly stressing about whether my car was going to completely die that day, whether I would have the money to get it fixed, whether AAA would just start to hate me or not... Point in fact, I became a big worry wart. There is no feeling like that of being trapped and alone, without feeling you can impose on the lives of others for something so simple as a ride to the grocery store. Quite literally, I made a gallon of milk stretch twice as far as I should've just so I wouldn't have to impose on someone else. Which brings me to my next point. I...feel like a sore thumb among a flock of toes.

Weird imagery aside, I feel isolated. Back home I could walk across campus and run into dozens of people who not only knew me but had some sort of fondness for me. At church I couldn't make it to my seat without being stopped by three or four people who just wanted to see how I was doing, and at work I had friends who made the load easier to bear. I haven't really found that here. There are people I get along with, people who I think are really cool, and people I admire, but I don't have anyone I would comfortably call a good friend. As ridiculous as it may sound, I nearly had a hernia trying to find someone to go to a movie with, if only because I thought no one would want to spend time with me. In some little way, I was right. The people I work with now always manage to hang out with one another, but somehow...somehow I always get forgotten. That may have something to do with the different moral code I live by, but it still hurts. It'd be nice if my colleagues would do something sans-alcohol so I could feel safe in spending time with them. They know that being around alcohol makes me uncomfortable, but everything they do seems to revolve around the next glass of wine or bottle of beer; it'd be like me inviting a vegan to a pig roasting. Maybe I am putting more weight into my loneliness than I should, but it's not just isolated to school and work. Even at church I can't seem to find my footing among the people my age. At family home evening, the minute the lesson is over the other kids all bunch together and start to gossip loudly and act like the best of friends. I can stand right next to the circle without them even noticing that I'm there, even when I try to say something. By my nature I enjoy talking to people, but they won't even give me a chance. One of the girls told me that it was "just how everyone was--that they're not accepting" and I wonder how that can be okay. The only relief I find is in the married sisters in the ward, who are the only friends I really feel like I have. They invite me over for movie parties, ask me my opinions on current topics, and I genuinely feel they care about my well being. Only problem? They're married with kids. My relationship with them can't be the same as it would be with a peer, and it's something I am struggling with.

For the other point... Let's just say I managed to offend the wrong person and they refuse to forgive me. It's a very complicated mess, but it makes me feel as if succeeding here is going to take everything I've got.

But! I did not even notice how dark of a spiral I had gone off into. That is a serious, serious problem. It finally struck me this week what was going on. I turned in my first graduate paper, and started to walk across campus to work. I ran into several people along the way, and while they were genial none of them had a vested interest in me beyond light conversation. After turning in my paper I had been looking for someone to celebrate with, someone to commiserate with, and each time one of these people appeared my hopes rose. I thought, "Oh, surely so-and-so will want to talk!" Each time, I was proven wrong. It struck me that I was looking for a familiar face and, more importantly, a friendly face. It was as if I expected one of my best friends to appear so I could tell them about all of my hard work before we frolicked off on an epic adventure.

The problem with this scenario? I haven't given Alabama a chance. I have been so stuck in stress and agony (started by something I had no control over) that Alabama has not become home to me. Currently, it is just a nice place to exist. If I want friends, I need to be a friend to others. There have been times where I have been downright hostile to the kids in my family home evening group (usually from not getting a nap before going), and that's just not cool of me. As for work... Well, if I want a non-alcoholic get together, then maybe I should host one. I hate throwing parties, but I really want to make lasting friendships with the brilliant, amazing people at my school. I'm so lucky to have the opportunity to know such brilliant and diverse people, and at current I am wasting it. That is cruel to them and me. Lastly, I think I've been trying too hard to be some sort of idealized Kirstin. I'm nerdy, a little awkward, sharp, sarcastic, nerdy (yes, twice), and a little crazy; but, I've been hiding those things because I think people won't like me. Look how well that's turned out. I've learned this lesson once before, but this time it's different. This time it's just me, no back-up in the form of friends or family, and I need to make a stand for myself. I need to embrace and show off those quirks in my personality that truly illuminate my personality, and I think (if I do that) the right people will gravitate towards me. After all, how can I find the best possible friends for myself if I don't show people who I really am?

Point in fact, I have a lot of work still left ahead of me, and very little of it is something I can get from a book or cite in an article. But, I think now I have a chance. Recognizing a problem is the first step to fixing it, right? I just need to have a little more patience, a little more understanding, and a whole lot more me-flair... and I think everything will work out fine.

(And by way of side-note, a lot of the stress in my life disappeared after the transmission started to die on my car. Dad drove out Mom's car for me to use, and we sold the Volvo. I feel much better for having that burden removed, and am even managing to drive stick shift. Every day I show improvement--today I even stopped and started on a very steep incline! I just feel very blessed to have a mom that was willing to give up her car so I could feel safe and a dad willing to drive across the country a second time to get it to me. My parents love me so much, and I am so so lucky.)