Grieving for My(old)self: Disappointing Diagnoses and Faith in Eventualities

I had a breakdown last night. I’m probably going to have many more breakdowns in the future.

Retrospectively, I realize that I went through the textbook five stages of grief when I became disabled:

Denial — Last Autumn, things started to hurt. I’d been experiencing odd sensations for a while, like a noisy, palpable grinding, clicking, and popping in my knees when I went up and down stairs, that eventually extended to walking in general. But the pain came later, and I tried to tell myself it wasn’t related. I bought knee braces to help with the pain, but stubbornly avoided their use, making excuses to my concerned loved ones that this was nothing, I was fine, I didn’t need the help.

Anger — Then I couldn’t argue anymore; I needed the help, and there was no pretending I didn’t. And I was fucking furious. Twenty-eight years old, and I had the gait of someone three times my age. I couldn’t wear my cute heels anymore, which seems like a minor thing, but I’m obsessed with shoes. My platform stiletto collection was very dear to me, and slipping into those heels always made me feel sexy and confident. And I didn’t have the feeling of strength I normally did when transitioning to my combat boots, because it wasn’t born of that mental, emotional shift. Being gender-fluid, I always felt confident and sexy when that switch was a matter of my own choice. But now the choice was being made for me, stripping me of that autonomy, and I was pissed. There was a huge difference between relinquishing my femininity, and having it stripped of me.

Bargaining — This was my “it’ll get better” stage. Not to seem narrow-minded, but I bargained with shoes. I bought myself a couple pairs of feminine flats, to get around in while I struggled. But for every practical choice, I bought an impractical one. Ballet flats for now, platform pumps for when I’m better. I ran completely under the assumption that whatever this was, it was temporary, and I wanted to make sure I planned my life around that. Fine, I’ll buy a cane, but just a cheap one; I’m not spending $25 on something I’ll only need for a couple weeks. Fine, I’ll buy a wheelchair, but just an inexpensive transport one, because I’ll only need it for a month or so. Fine, I’ll buy a self-propelled wheelchair, but only the cheapest one, because I’ll only need it for a couple months. It’s been more than a couple months. And this cheap wheelchair blows.

Depression — This one…it hit me hard. And it hit me in waves, rolling over me with each new ableist encounter I suffered. One of the hardest was my first exposure to inspiration porn. Someone posted a video of a man who’d suffered an injury and was left with mobility similar to my own. He was told he’d never run again, but–lo and behold!–he was sprinting by the end of this 5-minute YouTube movie. It was grating on a general level, but there was something very specific that tore my heart out: One of his “before” pictures, the ones that were meant to be seen as bad, limiting, miserable, something to overcome, it was of him with his family on vacation in Disney World. And I was about to go on vacation with my family to Disney World, the first time I’d ever been on vacation in a wheelchair.

So here’s this inspiration porn, telling me what I’m about to experience is something I should be ashamed of, something I’m too weak to try and overcome. And I just broke the fuck down. Here I was, trying to live my life and make the best out of my situation, and I was being told that I was making my whole family miserable simply by being disabled. It hurt. A lot. And that depression was deep, and hard to claw my way back from.

Acceptance — I’ve finally reached this, on a personal level. I’ve stopped buying high heels. I’ve (mostly) stopped pushing my body to the point of no return. I’ve started investing in quality mobility aids. I’ve started buying clothes that are wearable in a wheelchair (yes, there are things you can’t wear based on how a physical disability manifests; you’d be surprised how many things disability affects that you’d never think of until you’re living with such a disability). I actively seek out wheelchair-accessible stores and restaurants, instead of accepting stairs and using my cane/crutches on every out of stubborn pride. I’m car-shopping with a focus on finding a vehicle that will fit my wheelchair. I’m pricing electric wheelchairs so I’m able to navigate the hilly terrain in my neighborhood on my own. I’m treating this disability not as something to overcome, but something to accept, and treat as I’m able.

In the beginning, it was all about getting better; now, it’s all about improving my quality of life regardless. I finally understand that it’s possible to accept the body I have now, while still doing all I can to make it healthier, more able. I’m thinking about the future not in terms of how it’ll be when I can fully walk again, but in terms of how I’ll adjust for the mobility I have. I’m able to think about buying a single-story home, having ramps built for it, and getting one of those fancy bathtubs installed. I’m contemplating what sort of setup and aids I’ll need in place if I decided to have another baby. I’m assembling a micro-kitchen in my living room, since that’s the only room on a different floor of my apartment. I’m treating this as a reality, and it’s the only thing that’s kept me sane.

Some people around me keep wanting to revert to the “when you’re better” approach, which I pointedly demand they abandon. It doesn’t help me to think about that. It doesn’t drive me to seek any more help than I’m currently getting, it only guilts me for the reasons that I can’t get more (welcome to being uninsured in America!). It doesn’t make me optimistic about the world of opportunities that will be available to me in the future, it depresses me for all the opportunities I don’t currently have. There is no benefit to that line of thinking, and I think I’ve finally accepted that.

Yet, I still have setbacks. That’s what my breakdown last night was. My radiology results were delivered, and I crumbled. Today, I realize that I went through the microcosm of grief all in the span of a couple hours:

Denial — I opened the radiology report, read “Impression: Normal examination,” then folded the report back up and stuck it in with the CD of my x-rays, and pretended I didn’t read it.

Anger — I pulled the report out again, reread it, and was immediately furious that I wasn’t being given an answer. All the months I’ve been in pain, without the resources to receive medical help, and this is what I get when I finally get professional treatment? The fuck is this?!

Bargaining — I didn’t have to accept that report. Fuck that report. If I get better x-rays, will the doctor let me ignore these? I’ll get more x-rays, I’ll get all the x-rays, that’d show ’em!

Depression — And then it hit. I shut myself in the bathroom and sobbed. Apparently I sobbed so loudly my partner heard me from downstairs and ran up to check on me. I had him stay outside at first. When I eventually let him in, I made him place his hands on my knees while I straightened my legs in front of me. This is real, feel this! The grinding, popping, clicking, shifting, it’s there, it’s real, and I needed someone else to feel it, to know I wasn’t making it up. Somehow, that one little radiology report made me feel like my very reality was a joke. I felt like they were telling me this disability was all in my head. And I disappeared inside of the self-doubt that had plagued me from the start.

Acceptance — That’s today. Today I’m alright. I heard good words from good people, and I was able to feel human again. It’s one test, one teeny little test in what will probably be an extremely long list of them. Something will give me a result, someday. And even if it takes years to get there, that doesn’t mean this isn’t real. I’m not inventing this pain, this decreased mobility. And not having a word to call it, a cause to attribute it to, that doesn’t mean is isn’t real, that doesn’t mean I don’t deserve all the care and accommodation and understanding that I would otherwise. This is real. I am real. And I am really suffering.

I’m trying to pull myself up for this day, this one little day. I’m going to do all the things I’d otherwise do, had I not gotten that report. I’m going to get gauze tape for my crutch handles. I’m going to shop for shelves to use in my makeshift mini-kitchen. I’m going to look for a pair of tennis shoes so I have something comfortable to wear now that the weather is getting too cold for my summertime flats. And I’m going to run these errands in my wheelchair, because I need it. I need it. This has not changed, and it will not change from any number of negative test results. All a negative test result says is what I don’t have, and that’s got nothing to do with my reality. It’s just another word crossed out on an endless list of words. And I’ll find the right one to circle eventually.

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About bunnika

shout at the brick wall; if it doesn't hear you, shout louder
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