living with chronic illness and disability is living with a body that is constantly betraying you.
i only speak from my own experience, which is that of someone who went from relatively healthy with a few weird but livable issues, to disabled, in constant pain, always fighting the truth of my own flesh.
because of it i’m stranded in between believing fully in the social model of disability and knowing that no matter how much we improve society, i’m still going to hate being this way. it will always suck for me.
there are people for whom the social model of disability fits completely, and that’s fine. but for those of us for whom it’s only a factor — well, it gets frustrating talking about it. because it seems like you’re saying nothing matters, we shouldn’t fix anything, things will always suck. or that you’re saying disability means being inherently broken or having something wrong with you.
when the reality is, you’re only speaking for yourself. and while no, being disabled doesn’t mean there’s anything morally wrong with me (something i still struggle to believe because of that great protestant work ethic hammering away at my psyche), the fact remains: i am broken.
there’s a treatment that *might* help my back and i’d love to give it a try but it’s almost 4 thousands dollars and i struggle to pay rent. even then, it’s a crapshoot, and even if it “fixes” me — even if it gave me back *some* of my prior function, the injury doesn’t disappear. i’m still facing a life of being exceedingly careful with my body, because one wrong move and i’m paralyzed. if i get the back “fixed” and back to the way it was, well, one wrong move and i’m back to here, back to 24/7 pain, back to being disabled.
and sure, there are plenty of things that looking at the social model, would make my life easier if we worked to make society less ableist. better accessibility doesn’t just refer to more wheelchair ramps, though we need those. it also refers to making it easier for people to GET wheelchairs, and decreasing stigma around them. it refers to getting people to understand that a wheelchair isn’t JUST an accessibility aid for people who absolutely can’t walk; it’s an aid for people who can walk for short distances. for people who have hypermobile joints that dislocate. for people with a whole range of issues for whom a wheelchair is the difference between being housebound or having a life outside.
better accessibility doesn’t just refer to the purely physical aspects of disability, either. before i was injured, i was already mentally ill, but my injury has made it worse. my anxiety skyrocketed, my depression increased. i’ve grieved the loss of my ability so many times, and i keep thinking it’s the last time, but then something reminds me i’m not who i was. i’m no longer the wonder woman i was in my youth, and i’m only 30. my injury aged me prematurely, and that takes a massive psychological toll.
but there’s no room to be sad, or mad, or crazy in public life. there’s no room in social life to feel real feelings. if you have a friends group who understands, count your blessings, for you are lucky.
better accessibility wouldn’t just be making sure i can sit during the majority of my work shift because i can’t stand for more than 20 minutes without my legs going numb; it would also mean sick days include the mental/psychological. better accessibility doesn’t just mean your gathering has a wheelchair ramp and places for people to sit, it also means having a quiet corner for people who are overstimulated and need space away. it also means having rules of engagement — don’t touch people without asking. not only do some people have problems with being touched, but your hug could be physically painful to your friend with disabilities.
but even though i try to work towards these things as much as i can, even if all i can do is raise awareness within my social circles about how to make life better and less ableist, even though i believe that we can make a more accessible society…there are fundamental things an accessible society won’t change for me.
it won’t change that my body is betraying me. that every day i wake and brace myself for some new betrayal.
and this is my emotional reaction as well as my physical one. i’m an adult, i have responsibilities. those don’t go away just because my body decides it’s a bad pain day. and while i am lucky, so lucky, to be able to take those days slow, it doesn’t change that those responsibilities pile up when i need to put them off.
take yesterday. yesterday i was planning on doing a good clean of the kitchen when i woke up. i can’t tackle the whole thing in a day regardless if it’s a good day or not, but i wanted to make a start, make a dent.
instead i woke up with a pounding headache and intense pain in my neck. hours later, after i’d taken the two tylenol i can take because i can no longer take the more effective NSAIDs, the headache lingered, and my neck still hurt, even though i’d applied heat and gentle stretching.
i managed some cleaning but no where near what i wanted to accomplish. and today, the mess is still here. every day i’m not able to accomplish what i want because my body has betrayed me is another day that things just pile up, until i feel i can’t accomplish anything because i’m drowning in a to-do list that wraps around the equator several times.
and you know, i think even if i didn’t have the money troubles that make this inability to be super productive super hard, even if i could afford to take days off what i need to do every day…i’d still feel betrayed.
i like being a productive person. i like spending my days accomplishing things. i like getting stuff done. i also like occasional lazy days too, days where i spend all day doing nothing more than playing video games. but even then, i’m accomplishing something. i’m *doing* something.
a day where i’m in so much pain i can’t do much more than sit back and wait for it to pass, or stay in bed, trying not to move lest the pain make me sick…a day where the most i might be able to do is watch netflix, if i’m lucky?
those days are the worst. those are when the betrayal cuts deepest.
and they happen so much more often than they should.
i live in a body that constantly betrays me, and despite these betrayals, despite constantly fighting against myself, i must somehow soldier on.
somebody’s got to.