There’s this thing that happens to you when you’ve lived with your disability your whole life. You learn to adapt to pretty much everything that is thrown at you. I don’t mean adapt in that clichéd way people talk about overcoming illness. I mean, that as a disabled person your body, your being and your spirit make room for your disability, and it becomes a part of you. You learn the difference between disability pain – the kind of pain that comes with muscle spasms, contractures, being moved the wrong way, being scared by loud noises…the list could go on forever – and real pain, the kind that stops you in your tracks and makes you take notice that something might be really, really wrong here.
A couple weeks ago, I experienced some of that real pain for the first time in a few years. I wasn’t able to pee for two days with no real reason why. I was scared and I didn’t really know what to do. I eventually ended up deciding to go into hospital, which as a disabled person comes with its own particular brand of discomfort. After all the initial workups, and doctors probing to understand my disability without really understanding anything at all, it was decided that they would put a catheter in my bladder. I’ll save you the unpleasant details surrounding that procedure, but when all was said and done, I had a tube coming out of my junk. Sexy as fuck, right?
As I laid there in the hallway of the hustling emergency department on the most uncomfortable gurney ever, I was sure that the doctors would come back with some definitive answer for me as to what was happening. Some hours passed and the doctors finally came to me bedside. The doctor looked at my chart and back at me. “So, we’re not really sure what’s going on. It might just be related to your disability.” The rest of what he was saying didn’t register to me at all. You know in the movies where the protagonist gets a really scary test result back and they zone out? I did that a little, but it wasn’t because I was necessarily scared of what he was saying to me. He was talking about catheterization, but I wasn’t thinking about that. The words that I had become most focused in on were, “it might just be your disability.” He said it so matter-of-factly and without any real concern, as if this should simply be expected because I had Cerebral Palsy.
My brain started firing all these horrible thoughts. I was picturing that this would be my life now…tubes and catheters. I should stress again that I wasn’t necessarily scared for myself in this instance. None of this stuff worried me – the medical side of it anyhow. What scares me is that if this thing doesn’t resolve itself, I wondered how others might perceive me? Lovers? Dates? I have worked my ass off branding and incorporating my disability as it stands in my life, to make it something worth learning about, worth understanding. Could I be sick and disabled? Who would sign up for that? Who would stay or want to stay? Who’d fuck a chronic cripple?
It has been interesting that since this happened – all of these insecurities about my ability, my sexuality and my overall attractiveness have presented themselves all over again. I find myself worrying about it as if I were 17 all over again. This has kept me up at night more than anything else. The doctors could tell me that I need a penile transplant, and that probably wouldn’t faze me as much as the thought of never having a partner in the hospital with me. Willing to stay with me, and to experience it – whatever it happens to be. I’ve had nightmares where the most attractive guy fucks me in a Grey’s Anatomy style hospital moment only to leave and never come back after seeing my tubed penis. I have enough issues feeling fuckable as a Queer Cripple and now this? The fear of adding more to the pile of things I have reclaimed as mine makes me a little nervous. How do I make a cathed crip cock sexy? I guess I could find a guy who was into sounding.
My point is, I guess, that these things that are done to us – the disabled – these things that are “just a part of the disability” are never really understood from an emotional level. I am scared about adapting to a new type of rejection, a new guy telling me “no” all over again. I’m not ready for yet another time that a guy bolted out of my place because he didn’t know what to expect or what to do with me. Those moments are what scare me the most as I wade on through the disability experience as a Queer Cripple. And – if I’m honest – the realest pain about all these potential changes, is knowing that I’ll adapt and accept them as I always have, but I’ll never know, truly know, if someone else will too.