*Warning: This isn’t one of my usual serious with a tongue in cheek sense of whimsy posts. I’m not in the best of places at the moment and so this post may be a little darker and more emotionally raw. Please don’t feel that you have to read it if you feel uncomfortable with that. This is also kind of the flip side of the coin to my “It Gets Better” post, so if you’d rather something a little lighter why not re-read that post instead?*
I project a sense of confidence, a feeling of being in control, a certain… reassurance that I’ve come to terms with who and what I am. This is what I think that most people would say when they meet me. I’ve worked in customer service all of my career and so I know all the tricks for showing empathy and interest without letting my guard down too far.
I’m also terribly controlling. Not necessarily of others, but of myself. Words, gestures, looks, clothing. Everything is considered and planned. I do very little spontaneously. Even this post has been rewritten a number of times.
But what does this have to do with AS? Don’t worry, we’ll get there. I promise. Did you know that I only have two mirrors in the house? A small shaving mirror and a larger one that’s hidden away in a corner, usually behind the clothes horses. That one only gets used when I’m feeling brave, I’m not at the moment. You’ll also find that there are very few full length photos of me now. Would you like to know why? Because I hate the way I look. Because I’m deformed by a disease that wasn’t diagnosed for 18 years. And in that time it ruined my body, slowly and perniciously.
You know all those jokes about being bent, a hunchback, the Wicked Witch, Igor and the like? That’s how I cope with the fact that my body is deforming. And it still is, even with the drugs and the physio exercises. They help to control the symptoms, and they slow the progression of the fusion, but they don’t stop it. And they don’t reverse it. In the mid to late 90s when I first came out as Gay there was something called the “Queer Politics” movement. It worked on a similar principle to the one that the Black community used with the N word. By reclaiming the names that had been used negatively it handed the power back to the minority.
I’m using a similar idea now. If I call myself names for being deformed then there’s nothing that anyone can say that can be any worse. It also helps to make people smile and put them at ease about what they can and can’t say around me. I’m comfortable doing that because I’m verbally dexterous and quite quick witted. So I can retort swiftly if someone over-steps the bounds of good taste or my own personal line.
If I’m able to cope normally then why can’t I now? I have a speech impediment that comes and goes and at the moment it’s quite dramatically here. I stutter. It happens rarely, but when it does I lose my defense. That thing that defines what I consider good about myself is hobbled in a similar way to my body. Meeting new people – or even people that I’ve known for a while but who haven’t experienced it – becomes difficult. I become more self conscious of it which makes it worse. At the same time I’m thinking about what they think about the shrunken, bent, stuttering puff that stands in front of them looking at the ground. That sense of confidence, of control is gone.
I mean, if a man can’t control his own voice surely that means that he can’t control his own thoughts? We all know what phrases we use to represent confidence, “Stand up to it”, “Shoulders back, chest out”, “Look them in the eye”. And here stands a man who can do neither.
I’ve said it before in a slightly more lighthearted way, AS is considered an invisible illness. And the illness itself is. But it’s effects can clearly be seen if not caught early enough. And those effects have dramatic results on a person’s feelings of self-worth. That’s where I am right now and no amount of words or reassurance can help me think any differently.
I’m not mourning the loss of fulfillment in my life, I have that. I am however sad that there are people in this world that will only see me as that stuttering, deformed hunchback (because I’ll only see them for a short window of time). Or those who can’t see past the mess that my body is at the moment. I know “that it’s their loss” and that I should concentrate on those who’ve stuck with me. But even then I worry that it’s all about pity. And I don’t want pity. There are people out there who have it much worse than me.
But every so often I want to be able to be sad, angry, and deformed.