Chronicles of Life with Multiple Sclerosis
I had a really shitty appointment. Ive been at cog fog critical mass for the last few weeks and I feel like I was, somewhat, strong armed into switching medication. Its a decision I would likely have made for myself but damn I hate that I felt like I just watched it happen.
So? I am starting Tecfidera. More on that later. heh. I need to rant about this other crap right now.
After that blur of medicating and decision making happened, I had some follow up paperwork for sallie mae etc that needed to be done. Paperwork that had been filled out by neuro before, so was no surprise. I’ve mentioned previously, and its getting more frequent, that my doc is getting on some sort of strange ‘inspiration porn’ trip thats really starting to get to me.
I’ll surely post in more detail later (or now knowing me) but I spent yesterday in a depressed cog fog stupor about it and now I’m slightly more functional and pretty mad.
So he pulls out the paper work while going on this tangent about how ‘what we need to do is figure our a new life plan for you’ and ‘things are changing with all this new research and medication’ and in some stupid attempt at inspiring me to feel like ‘wow everything is gonna turn out great any minute now’ he looks at the forms and the question that says “is your disability permanent” and checks NO!
um? what? I’m pretty sure MS hasn’t been cured, I’m pretty sure I have only one functional eye at the moment and heat, stress, walking too much, general neurological function cause that to come and go at the will of MS. I’m also pretty sure that your belief that ‘new meds are gonna change things’ is fantastic and I want to stand up and cheer with you but I can’t cause my hips hurt so badly not to mention the fact that the potential of that happening in the future does nothing to change the fact that I live off SSI Disability and can’t have any income without losing, not only the small amount of funds I get to live off of, but my health insurance as well.
What the hell?! He has said I shouldn’t box myself in but, regardless of any miracles of science that might come in the future, it doesn’t change the impact the whole process has had on my financial situation, physical and cognitive capabilities, and/ or the fact that this future doesn’t exist right now! I need to be able to feed myself, have a place to live, pay for my meds, and ya know.. have insurance so you get paid too.
I’m so glad you don’t want me to “give in to being labeled as disabled" but I’m blind in one eye, am in constant pain, can barely get up in the morning, among other things that change day to day. Nor does it change the fact that I came back to the US for one of my best friend’s weddings one summer. while living in England going to school, and went blind having to go through 8 months of tests and hospitalizations without insurance and stupidly paid out of pocket ( everything I had in savings/ all the student loan money I had and still had to get help from my amazing friends) because I was told all these things about my health and no one wanted to see me for follow ups because I had no insurance. So I may have backed myself into a financial corner out of fear and confusion and well MS had something to do with it but I’m in the damn corner! My ideas about my future as an individual are separate from the fact that I need you to sign the fucking form while existing in THIS CURRENT REALITY so I can stop getting 10 phone calls a day, not be homeless, and actually find some stability in which I can actually try and move on with my life as it is now! Find that life plan you keep talking about.
Feeding me imaginary potential is ridiculous! I AM DISABLED. I WILL NEVER FINISH MY DEGREE. That last one (as silly as it seems in relation to my body function fail) has been THE SINGLE HARDEST THING TO ACCEPT IN MY WHOLE LIFE. I lost so much working towards that degree. I am a workaholic academic, someone that devoted my entire life to getting this damn degree to the point of alienating people in my life in much the same way a chronic illness does. Its the one time I felt semi confident in myself, I felt like I was actually good at something, contributing to something, found my calling. It still is my calling but the precursor to and all of the events surrounding and after my diagnosis have done a good job of forcing perspective on me, making me realize that I’d focused my whole life on a career that in the end matters so much less than the people in my life do, regret that I was so occupied with academia and never tried to find someone, thought I always had time for that later, never tried to find a balance. Well that was the kicker and since I’ve been fighting with myself to look for other roads to take, trying to accept that I cannot continue down that road no matter how desperately I want it. My biggest step towards acceptance and finding a new life path is acknowledging that I will NEVER GO BACK and that HAS TO BE OK! Accepting that is something I still haven’t been able to do fully, or at least without feeling serious pain, but have been moving towards in a positive way. I’ve worked so hard to be able to look beyond and try and find new ways, a different path, that can be fulfilling in a real way. I know that I can take my work and keep going in a different way, using art as my main medium instead of academics, finding other outlets etc. I try and try to accept and look beyond not back.
So hearing this stuff from my doc, however well intentioned he is, is just insulting and (even if he doesn’t realize it) is pushing me backwards when I’m desperately clawing my way forward. The financial reality exists and I can’t change that nor can I change my fucking disability. I haven’t cured MS and well sorry Doc neither have you. I am trying hard not to let it change my attempts to find purpose and move forward in whatever way I am capable of. It may not look that way to my doc but well its my life.
I hate that I keep feeling like I have to justify what I’m trying to do to move myself forward. How I’m trying to mourn and be optimistic about my life in my own way. Why do I have to explain that to him or anyone else? damn power dynamics. When docs say they are just as lost as us and we scare them because they can’t fix things… thats well and good and I understand that but.. there is a power dynamic that you can’t deny. This is it. I have to justify it to you, you giving me a pep talk and sending me on my way requires no justification on your part and impacts me 100000 fold. blah.
Anyway, I’m clearly in the anger stage of dealing with that appointment but currently I’m glad to have moved from sad and wanting to give up to frustrated and pissed off. ugh. I guess I didn’t go with ‘brief’ like I intended to. Thank you for letting me rant.
Now I just need to grow the ‘cohones’ to ask him to rethink how he filled out this paperwork and in a timely manner. Heh. I dunno. Not even the steroid infusion seems to be inspiring me to go there. So, I go back to feeling weak, still angry but weak. Someone kick me!
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 :)