Chronicles of Life with Multiple Sclerosis
warning: racism, ableism, grown-up words
I’m 30. I have no degree (worth more than the paper it’s written on). I grow fatter every day no matter how many calories I burn and no matter how much Women who are fat progress towards self acceptance and cross gender acceptance and yes desirability fat men are and will be for the foreseeable future undesirable. It doesn’t matter that my disease and it’s treatments are obviously contributing to said fatness. It doesn’t matter that I subscribe to or track tags that tell me that fat positive is a real thing.
Being fat It’s a touch like being Mexican. I know and am proud of who I am culturally/ethnically but when you here about how lazy you are and how you should self deport and all that nonsense every goddamn day when my own nephew tells me he’s not Mexican/Chicano/a because Mexican is a bad thing, dude, pride gets wrapped up and tangled in shame and I can know that my people are an amazing people but when I walk out/into treatments at the bloody cancer center and hear ORielly shaming me and my family or when I hear rednecks blabbing at a gas station and I know that 70+ percent of the people around me agree with that bullshit and thus they’re thinking that shit when they look at me or my sisters or mis sobrinos et cetera well it wears on a person.
So being fat… I walk with a cane and after 15-30 consecutive steps my left leg muscles below my hip just quit. So I either lock my knee and swing it around awkwardly or drag it. Which is fine for short journeys, but let’s say I wanna go to the grocery store or a department store (and this is some ableist bullshit, both on my part as well as “society’s”) I’m compulsed not to use my damn chair. because A) I’ve overheard so many people making fun of “fat” people who use chairs in stores, and being fat they’d be thinking that same shit about me and B) I feel like I’m doing some kind of disservice to paras and quads. Like they give a shit. Like I should feel guilty that because One of my legs still works pretty good I should be walking everywhere, even if that means I’ll have to rest twice as long that day thus cutting short my quality of life all so I can buy some fucking lactose free milk… So I just use my fucking cane which I feel perpetually ashamed for doing especially if/when those first 15-30 steps are pretty goddamn natural. I don’t use my chair even if my right thy is fucking burning and cramping and I want to fucking die but preferably outside the fucking store where I won’t have 30 middle aged white people standing over my corpse wondering what the fuck happened (if it happens, JesusChristo, por favor, please let it happen when the Crow have an event in town and let them find me, please, god please)
Where the “IT’S SO MUCH WORK TO BE YOUR FRIEND” references come from
I like how the kids are smiling about it being so much work to be … each other’s friends. ”WITH A NEW CHAPTER ON ASPERGER SYNDROME” was intended to be referenced, too, but almost all I can think of with that is me and my husband. IT’S SO MUCH WORK TO BE YOUR SOMETHING, THE MULTISIDED STORY OF MY LIFE.
I don’t know why I’m surprised, but this is a real book. I was pretty sure (or perhaps just desperately hoping) that it was Photoshopped, because it seems like such a joke.
I can’t tell if the book’s message is that it’s hard to be friends with disabled people, or that it’s hard for disabled people to make friends. Or perhaps it’s both? All I got out of the synopsis and reviews is that apparently all developmentally/learning disabled people have bad social skills.
But I really want to know: who does Mr Lavoie think is doing the hard work in friendships between neurotypical and disabled people? I think most people would say it’s neurotypical people; but as an autistic person, I’m fairly sure that it’s the other way around. I’ve had to teach myself social skills and how to pass as neurotypical, I’m constantly monitoring myself and criticizing myself every time I feel like I’ve failed to live up to neurotypical standards, and every social interaction is miles outside of my comfort zone. People don’t see this all this work from the outside, though. It’s so much easier for them to just dismiss me as a potential friend, because they think that they’re the ones doing all the hard and uncomfortable work and that “it’s so much work to be [my] friend.”
I know I’m debbie downer a lot, and whine constantly on twitter, but I’m alone in my apt and need to voice this (one more time before I do either of the things I mention at the end of this). I just went out to my car to get the heat humidifier I keep by Zoya’s terrarium in the winter, since its getting cold and her substrate dries out so quick. Anyway, I’ve been in a tone of pain the last few days so, despite my general attempts not to out of stupid pride, I’ve been using my cane even inside my house. So I was using it just now when I went outside where landlord & fam. were talking to some teenage trick or treaters (their youngest son is a senor in HS, I believe, so they were prob his friends). One of them asked who I was supposed to be and where the rest of my costume was because I was hobbling with the cane. My landlord, knowing my situation, tried to butt in and stop them but convo ensued anyway. I smiled and kept going, heard them discussing me on way to and back from my car, then got stared at as I passed on my way in. I know they felt bad but I feel worse. I am wishing I was tougher cause I’d pretty much like to drink myself into a stupor or cry myself to sleep…none of which are good ways to respond. I need to brush it off. trying to brush it off.. if I vomit it into the universe a few times it might go away right?
I know they meant no harm but this was the most blatant face to face with this sort of thing, at a time when I was already irrationally depressed over a stupid holiday I shouldn’t care about but still made me wish I was ‘normal’, so its really getting to me. think I should back away from the internet but then the silence will smoosh me.. and not into a muffin like I want to smooth all the snuggly animals and cute things/ppl I see.
I need to remember that I could be crying about having no power, no life support, no home to go back to, a flood that destroyed everything.. cause with that happening around me I need to bitch slap some perspective into my brain.
So last night I got very frustrated about the phone calls from people I barely speak to who were calling to inform me about Jack Osborne being diagnosed with MS. I suppose in many ways the real frustration here was the repeated “excited” sounding calls that involved people saying things like you’ve got a celebrity illness. Ugh. I’ll get back to that in a second round of this post but first the important part: I am an asshat.
Here’s the thing, I was pissed at those callers, made assumptions about an industry I know little about, and did no research when I went on that long ass rant. They didn’t teach us much about high budget film shoots when I was in film school hah so I was just basically talking out of my ass yesterday about health insurance that was not at all the issue in Jack Osborne’s case. A very smart friend of mine dropped me an email to explain the issue I was totally missing. I hope said friend won’t mind that I include her explanation here since it explains in detail a whole aspect of advocacy I hadn’t even thought of, being brought to light by this issue:
*The insurers on a film take out bonds on all talent appearing in films to ensure that they will be physically available for the duration of the movie/reshoots/etc, and this bond covers the cost of the production, should they suddenly not be available. It’s not to cover health costs. It’s also why you sometimes hear stuff about actors with addiction problems being uninsurable or not getting roles due to their drug use. It’s the insurance companies that don’t want to take the risk. There’s no way that they could personally cover the bond on a film, unless they put up part of Ozzy’s back catalogue for it.
But basically, it’s an issue that will hopefully lead to awareness when it comes to ADA violations and make it easier for [people with disabilities] to work. Right now, stuff like this is why able bodied actors are doing crip drag more often than disabled actors getting hired. So regardless of how frustrating and shitty it is now, it can eventually lead to greater visibility, acceptance and aid for everybody.*
This was a little mind-blowing to me (my stupidity that is). When I think about ADA violations I think about office jobs, building accessibility, access to meds, and debt etc etc.. why is that all I think about? why don’t I think about those same issues in the entertainment industry? pretty naive and narrow minded of me. Anyway, I hope this was enlightening (either the info or how I’m ignorant and pissy). More on the other half of this later :)