Someone told me something the other day that meant an awful lot to me.
She told me I was beautiful.
You see, for most of my life I've thought of myself as some kind of disfigured monster. Most people might find that strange, as I'm six feet tall, well-built with strong Scandinavian features, neither skinny nor fat, and am frequently told by strangers that I look like Ethan Hawke.
Yet somehow I've spent most of my life thinking of myself as ugly and unloveable. It's not because I look at - or care - what the "male" image is supposed to look like from the media and magazines. It's not because I have an incredibly underdeveloped sense of self-esteem or because I can't stand up for myself. Anyone who knows me can tell you I'm both confident and not afraid of honestly expressing who I am.
The reason I've felt ugly for most of my life is because I am disabled, and because for most of my life, I could not imagine why someone would want to put up with the burden that taking care of me would be.
There are all kinds of disabilities, and mine is not physical in nature. At least, not unless you consider damage to the brain "physical." You see, due to some sort of problem with my brain (the doctors still can't tell me exactly what) I suffer from what's called Tourette's Syndrome, which is classified generally as a movement disorder. You can read all about the symptoms here, as this article isn't really about my disease, but what it has done to me.
The only thing that causes me more trouble in life as a disabled person than discriminating Bigots are the "Bigot Police" who go around trying to serve society by making sure nobody says something that might possibly offend a disabled person. These people are the same ones who tell me that my disability is "beautiful." Are you KIDDING ME? Let me tell you something folks, there are very few disabled people who think of their disabilities as a POSITIVE thing in and of itself.
Now, let me clarify that. A lot of us, me in particular, have long sinced learned how to live with our disabilities and there are even some who have adjusted so well that they aren't interested in a cure, even if one is available. That's not what I'm talking about. Many of us have also become better people because the hardship of the disability has forced us to undergo character growth. That's also not what I'm talking about. But my DISEASE is nothing short of hideous, ugly, painful, and disgusting. Cancer is not beautiful. Tuberculosis is not beautiful. I see no reason why Tourette's Syndrome should be any different.
Just because I have a disease that is hideous, ugly, painful and disgusting, however, does not make ME the same sort of thing. I'm capable of making that distinction. For most of my life, though, I chose not to do so. I'll start by telling you a little bit about my childhood.
I went to a private (secular) school for a good thirteen years, from Kindergarten all the way to my Senior year of High School. I was sheltered a lot by my parents, but not in the usual "Christian bubble" that most Texan kids in similar situations are raised in. A better way to describe it would be, "Republican bubble." Growing up, my god was an elephant, and I'm not talking about Ganesh. We also got involved early on in a certain cult that I'm not allowed for legal reasons to name. Just let it suffice to say that it's probably not anything you would normally think of as a cult, but they did the whole nine yards: brainwashing, manipulation, extortion; everything but outright death threats and poisoned kool-aid (we eventually escaped mostly in tact, minus a few emotional and financial scars). So I think it's fair to say that although my parents were and still are tender and nurturing, I was not very socially apt.
This wouldn't have been so bad - everyone's awkward as a kid and we can all grow out of it. But when I was still pre-pubescent, I started having symptoms that are easily recognizable now as a textbook case of Tourette's. I had started having symptoms at least as early as 6th grade or earlier, and I wasn't officially diagnosed until mid-way through my Sophomore year of High School. In the meantime I built up a reputation as a "freak" and a "spaz." This carried on well after I was diagnosed, too. It wasn't until I left High School that I was finally allowed to start over and be considered as an actual human being.
In High School I was constantly harassed and basically molested by a fellow wrestling team member. There was a male "queen bee" in the social strata who saw me as his personal whipping boy whenever he wanted to vent his frustrations on something; -he would literally be my friend one day, only to humiliate me the next day. I had a "friend" who one week would pretend I was cool and awesome and stick up for me and the next week would stand right alongside the queen bee and his lackies in mocking me. My body was raging out of control and I didn't know what was wrong with me.
It seemed like everybody hated me. This wasn't some depressive notion I made up - it was based on the impression that many of the kids at my school found me annoying and troublesome and their lives would be easier if I just didn't show up to school any more.
My symptoms were getting more and more violent; I started breaking things unintentionally and threw myself down the stairs at least once. My grades were dropping and I was losing faith in anything I had ever believed in. I was a monster and nobody could love me.
I nearly killed myself in High School, but fortunately for me, a friend from another school took enough of an interest to tell me about Jesus Christ, which I was only sort of interested in at the time. However, she also told me that she didn't think I was a worthless person and that my life was worth living. She was one of the few people to ever tell me something like that. There were a few others, too. The people who cared enough to rise above the stupid politics and cliques of high school to lend me a desperately needed kind word. The girl I mention here is the reason that I am both alive today, and also the reason that I am a believer in Jesus Christ. (Her name, for the record, is Lindsay Lombard, and although she is certainly one of my heroes, she is not the woman I mentioned at the beginning of this essay.)
Despite my best efforts, I didn't kill msyelf and I didn't get expelled and I graduated and went on to college and things got a lot better. For the first time in my life, people thought I was a cool guy and looked up to me. I became a better artist and I even got a few "fans," you could say. It was so strange having such a huge role reversal. I had no experience with being popular and the complete paradigm shift instilled in me a sense of wonderment and awe that still somewhat persists to this day four years later.
But ironically, I still felt like a monster. A popular, talented, respected monster, but a monster nonetheless. I felt as though I might be the sort of person girls were cool being friends with, but not the sort of person anyone would ever consider dating. Who would want to marry someone whose kids might be as mutated and deformed as he is? (I know that's blatant self-pity, but I feel the taboo on expressing these feelings publically only encourages them to go on unspoken in silence, where they fester and become worse. I'm not defending these feelings, just acknowledging that they exist. Also, I'm going somewhere with this, trust me.)
Even after I graduated Cum Laude from the Architecture school, one of the toughest degree programs at Texas A&M University, even after gaining admittance to the Viz Lab, one of the most competitive graduate schools for computer animation in the nation, even after being respected and adored by all my friends, both male and female, I still felt like a monster. I'd even dated a few girls in college, and still I felt hideous and unloveable. Why? Unless you've been in a similar situation it might be hard for me to communicate precisely why. Men are supposed to be strong. And I don't mean the whole stupid, "Boys don't cry" nonsense, but Men are supposed to be able to take care of the people under their protection. This post-modern mamsy-pamsy-socialist ideal of keeping people dependent on the government and making excuses for your own shortcomings rather than becoming stronger is anathema to me. I grew up in a world where if you had a problem, you didn't complain about it - you fixed it. I still mostly agree with that notion. It was okay to admit weakness, but not to wallow in it. And yet, I had a weakness that no amount of strength could cover up, hide, or expunge.
EVEN when I graduate with excellent grades and plenty of accomplishments, in four years no less(on average, one year ahead of schedule), I still had that same old millstone slung around my neck. As much as I worked, as much art, literature, and philosophy as I might make, I couldn't uncreate the monstrosity that lived inside me. I suppose I had thought that if I was just the most amazing, productive, kind, creative person I could be that I could make this hideousness leave me. That I would suddenly feel better about myself. But it didn't work. I could not make myself into an island.
I need people, and desperately. I'm not even sure if I'm capable of living independently. When I have bad symptoms, things get TERRIBLE. It's impossible for me to take care of myself in those situations and I don't want to. I don't want to ever be in a place where I have an attack of symptoms and I'm all alone.
But I still have that notion from my upbringing that I'm not allowed to be weak. I'm afraid of admitting to people when I can't do things and I'm always reluctant to ask for help. I don't mind admitting that I can't do something, but I am loathe to admit when I find that I can't do something I usually am able to. That's how Tourette's works - you're never permanently out of comission - it's just suddenly your hand clutches up into a claw and you can't use it for fifteen minutes, or maybe an hour. Who knows. Or you're able to walk down the streets just fine one week, and the next week you're walking around shuffling like a zombie, with your eyes rolled backwards into your skull and your jaw hanging slack, contorted in a toothy grimace. Sexy.
I used to think to myself: no matter how much I achieve, I will never be able to make that go away. I guess the unconscious fear is that a woman would rather marry someone with fewer talents, fewer skills, any number of things less than the package of ultimately meaningless trifles and trinkets I've built up for myself, because the fundamental reality of someone who is healthy and not a freaking mutant trumps all of those things. There's no shortage of kind, loving, Christian men in College Station. Plenty of non-diseased ones to pick from - or at least this is what I kept telling myself.
So the other day, I was getting ready to go to a friend's wedding. It was about that time my then-girlfriend called me up and told me she wanted to end the relationship. She was sound in her reasoning, and I won't go into the details, suffice it to say we are still good friends even though any prospects of a romantic relationship for the future are essentially scuppered. It was also no one's fault. It wasn't even my fault. You see, if it had been my fault that would have been great, because it would have implied that there was something I did wrong, and could thus do something better the next time I tried this relationship thing. Maybe I've been playing too many video games and it's started to warp my thinking.
At any rate, as my overly emotional brain sometimes does, it twisted that notion into this: "there's nothing you did wrong, because it wasn't about anything you DID, it's about who - or rather, WHAT, you are. There's NOTHING you can do about THAT." Ie, nothing can change the fact that I'm a mutant freak. But that wasn't really the case, though the whisper rang pretty loudly in my head as I practiced how to smile for my friend's wedding. The wedding was beautiful, and I was actually able to think of things besides my own loneliness for a while. I call that an achievement if there ever was one. And it was at this very wedding that I met an old friend of mine I hadn't seen for years. Like me, she was a guest of the groom.
You see, she had been having some neurological problems and was wondering if I knew any neurologists to recommend. What little analysis that had been done so far suggested that her neurological symptoms might actually be Tourette's Syndrome, of all things (as of this writing, we still don't know). Now this is interesting - Tourette's Syndrome is much more common in males than females. The ratio (just off the top of my head) is something like ten to one. So in all my life, I've met countless other boys with Tourette's, but never can I remember meeting a girl with the syndrome.
She told me about the fear, anxiety and depression she'd had while coming to grips with the situation. She asked me not to be offended with what she was about to say, as she confessed, "I was so afraid... I thought to myself, what if this gets even worse? What if this gets as bad as... as bad as LARS has? Everyone will think I'm a freak, everyone will think I'm ugly..." Then she looked into my eyes, and smiled, as she said, "That's when I realized something. I've never thought of you as a freak, or as ugly...in fact, when I think of you, Lars, I think of a strong, attractive, handsome man that I have so much respect for. That's what I've always thought. That's when I realized I didn't have to be afraid of being ugly if things got worse... because the worst case I know of is yours, and I think you are beautiful."
Suffice it to say, that made me break into tears. In fact, just transcribing it here had the same effect. Now, just to be clear, this woman didn't have any intentions of dating me, and I knew that. I was also fresh right out of a breakup and wasn't looking for a rebound. Which, in a way, made her words all the more genuine. This wasn't the flattering talk of someone drunk on new-found romantic affection. This wasn't some politically-correct hippie trying to tell me my hideous, disgusting, disease was somehow "beautiful." This wasn't some smarmy, touchy-feely new-ager telling me that they knew what I was going through and "felt my pain." This was someone who actually was in a similar situation, and might actually have my very same disease!
(It's a blessing that this disease doesn't occur very often in women, because honestly it has a much worse social effect on women than men. Beauty, although it is important to some of us guys, is not nearly as important for men as for women. For example, a good number of fat men have overcome their percieved ugliness with enough wit, charm, or other faculty, while overweight women have a much more steep barrier to overcome, thanks to social pressure.) This woman faced a much more real prospect of ugliness than I did. And she was able to look at me, and honestly and knowingly say that she found my beautiful.
My heart just couldn't take it. I'm still not sure if I can. For the first time in my life, someone has told me that they think I am beautiful and, more importantly, for the first time I have actually believed them. (I'm sorry, Mom, I know you've tried to tell me all these years, but until now I just couldn't see it. I'll try not to let it go to my head.)
I'm sick of self-pity. I'm sick of stagnation. I'm sick of making excuses, and wallowing in my own perceived ugliness is the root of that entire way of thinking. I can't truly be proud of anything I do or am if I feel that thing is ugly. I'll be one of those pathetic people who whine all day about themselves and never stand up and act like a grown Man. So thank you, sister, for seeing what I never could - or was too afraid to.
Suffice it to say, lady-woman, I think you're beautiful, too.
Te quiero, amiga.
(Because she probably doesn't want her medical history plastered all over the place for everyone to read, I've left ths amazing woman's name out of this article.)
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