Coming out of the gimp closet to three new people within three hours: not exactly my favorite way to spend an evening. Having to hear the \”Oh. Oh, man. I\’m so sorry to hear that,\” and all that other related sympathy being poured on like whole milk on top of ice cream. I\’m well coated with sugary fat as-is, please stop adding to it.
Fucking hate that. Fucking hate my life. It always eventually comes up, that question: \”So what do you do?\” I can dodge it with bullshit for only so long. Tossing out the one-liners, the deadpan comments, and insisting that I used to play housewife but now I\’m thinking about a career move, only buys so much time. Eventually I either have to flat out lie or go through the whole \”But you don\’t look sick!\” routine. Which, quite frankly, is why I prefer to lie. Lie, lie, lie. Because no one questions the lies, but give the people the truth and then you have to walk the person through their own little mourning session: the denial, the sympathy, the anger at the unfairness, the questions about \”well, have you tried this?\” and \”I heard about someone who had a headache once and then she blinked and it went away!\”, the sadness for the life and potential I have lost, and then trying to accept that I\’m less of a person than what they would want or hope for me. BUT I\’M NOT DEAD YET, MOTHERFUCKERS. So stop grieving for me. I don\’t want to hold anymore hands down anymore Kubler-Ross trips to help you learn how to mourn myself when I\’m not mourning. I\’ve been stage fucking five for well over two years now and I\’ll be damned if I\’m going to walk down Kubler-Ross every single time I make a new friend. So I\’m going to lie to your face. Just deal with it, because I can\’t take the mournful looks anymore. You\’re bringing me down, man, you\’re bringing me down.
I didn\’t lie last night, obviously. Last night I told three new people, which just filled my cup to the point where I\’ve decided lying is going to be a better policy for awhile. Because I almost ripped someone\’s head off last night, completely undeserved on his part, and it\’s happened recently with other new friends who haven\’t had their hands held through the full journey yet. I\’m not a goddamn guide dog. I hate the fact that I have to explain myself over and over again to every new person and that it\’s all so complicated that no one ever remembers. That stuff my doctors consider to be valid and are reasons I\’m on fucking disability in the first place are things that my friends feel they somehow have the right to butt heads with me with and say that I\’m just making excuses for why I can\’t work. Things I used to fight with my parents about, and then several lovers, and now some friends. \”You should work with dogs, you love dogs and they love you.\” \”But I\’m allergic to dogs.\” \”You\’re just making excuses.\” Motherfuckers, eat my excuses out of my fractured ass. I don\’t have to carry my X-Rays, CT-scans, MRIs, blood work, and several feet thick file folders of doctors records to prove to anyone who feels they have the right to question my disability, but you all make me feel like I should be doing that — like I have to justify myself. But really, what you want is not about me being better for myself, but it\’s about me feeling better for you so that you don\’t have to worry about me and feel bad for me and watch me squander my intelligence on my broken health. It\’s about me getting better and living a normal life –like your life– so that I can fit in with your happy picture of the world and your life and you won\’t have to question why things like this happen, and you won\’t have to be made to feel uncomfortable anymore.
Uncomfortable, yeah, that\’s a good one. You know what makes me uncomfortable? When someone who wishes me well can\’t take the hint and keeps asking questions and getting answers she doesn\’t want to hear. When he doesn\’t let me change the subject. \”What did you do before?\” \”Before? Like, before what? Before I came here tonight?\” \”No…before you were…before you got sick.\” \”Seventh grade. I\’ve been sick since I was 13. I don\’t really know anything else.\” \”Oh. I\’m sorry to hear that.\” YOU\’RE SORRY TO HEAR THAT?! You\’re fucking sorry? Is it just that the English language is inadequate or are we really such assholes as to think that kind of language is acceptable? Do you also tell blind people that you\’re sorry they can\’t see? People in wheelchairs that you\’re sorry that they can\’t run? The deaf that you\’re sorry that they can\’t hear the chirping of birds at dawn or the first screams of their new born child? No, you don\’t, you fucking don\’t! At least I hope you don\’t. I really hope you don\’t, because if you do, you are so callous, so cold, so unbelievably without heart that I really want nothing to do with you. We know what we\’re missing. Some of us even know all about it, because we weren\’t always \’without\’. Some of us, on the other hand, simply don\’t know any different, and so it\’s like telling someone that you\’re sorry they don\’t have a third head with a trunk and a spotted tail, because it\’s so completely out of their realm of their experience as to appear fantastic, ludicrous, and therefore, missing out doesn\’t seem so weird after all, it just seems normal. When you say you wish there was a way you could give us that third head and the tail, we just feel funny, because why the fuck would we want a third head and a tail when we don\’t even have a second head to begin with? What are we going to do with something so foreign when we aren\’t strangers where we\’re living now? We\’ve acclimated. We\’ve fucking acclimated to YOUR WORLD. And it\’s sick as shit that you keep thinking that you\’re sorry and that we\’re not good enough without being just like you…I don\’t see you acclimating to ours. Maybe you should start. Maybe I should start telling people I\’m sorry that they don\’t have a chronic illness, because then maybe they\’d grow a fucking spine, even if it is a degenerative one. They\’d grow a heart, even if it does have a murmur. They\’d grow the fuck up and learn some goddamn social graces.
Am I sorry that I don\’t know anything of an adult life except that of disability? No. No, because I don\’t think of myself as being an adult with a disability. I just think of myself as being an adult, and that my life has been different from most peoples\’ lives, and that is due largely due to being disabled, but I don\’t specifically think of myself as being a disabled adult. Like Sproglet says, labels are for food, and once you put the label on, you can\’t change the ingredients.
Despite the way this journal constantly sounds, I am not depressed, nor angry. I\’m not even walking around living my life in a state of anxiety or one of fear or anything like that. Yeah, I\’m worried, and I think that\’s fair, but mostly, I\’m really happy these days. Happy to be alive and enjoying pretty much every moment on one level or another. Even enjoying the times when I\’m clearly not enjoying them as they unravel, because I know that what\’s unfolding is allowing better things to happen. I was bawling my eyes out with Sproglet just a few nights ago, sick with worry, but already I have fond memories of that night because good things have already come out of it. I\’m not a pessimist. I just let a load off here. Stop bringing me down.
