Scoliosis (Or How I Learned It’s More Than A Back Problem)

(Note: I’m gonna be blogging a lot about what I’m going through with my health because of the national conversation around the repeal of the ACA and its replacement with the tax cut for rich people that they’re claiming is a health care bill)

My first exposure to scoliosis was a childhood friend (we’ll call her Annie). Annie was my best friend for a long time. I knew her in our little Catholic grade school. One day, she came in wearing a back brace. I was scared as hell. I thought maybe she broke her back or something. But when she explained it to me, I took it for what it was (she needed her back to be straight, like my retainer on my teeth, but for her spine) and moved on.

She never explained what it was like. Whether that was out of concern for me worrying, or just because she didn’t think it was relevant, I don’t know (we lost touch a few years ago).

But I came to learn what even somewhat mild/moderate scoliosis entails through firsthand experience.

I went undiagnosed for a long time. In fact, it took me getting into a car accident and needing a spinal x-ray at 27 for it to be properly diagnosed. But the signs were there. I’d had uneven shoulders and hips from the age of 11, and it was noticeable enough that my mother commented on it and started taking me to chiropractors. (I can’t hold this against her, she didn’t know that the practice of chiropractics may help some, but not those with scoliosis, let alone scoliosis we didn’t know I had).

I knew I had back pain, but I assumed it was because I was sleeping in the wrong positions and clumsy as hell for the longest time. I didn’t know my clumsiness was likely caused in part by the scoliosis.

And once I was diagnosed, I saw “scoliosis rarely causes pain” over and over on various sites. I kept thinking “Well, it’s all in my head.” And knowing how wrong they were now, I kinda wanna take everyone who wrote that crock of shit lie, take them by the shoulders, shake them, and tell them off. Because dear GOD, is that a lie.

Not only does it cause back pain, but it causes pain all over. I deal with pain every day. Some days, it’s a 4 or 5, just in the back and hips. Other days, my knees crunch, my hips are on fire and my back is a giant knot. Sometimes, it’s a combination of various pains, like today. My hips are killing me, my knees sound like they’re full of rice krispies, and my head and shoulders are aching (one shoulder is actually 2 inches lower than the other right now).

I’m just having a really hard time with it. I can’t help but think that, if someone had bothered to look instead of saying “Well, Fionnuir seems fine, and considering they don’t have problems with being active on the playground, there’s probably nothing wrong,” then maybe I wouldn’t be in the pain I’m in today. Maybe there wouldn’t be two inches difference between heights of my shoulders and hips. Maybe I wouldn’t have sciatic issues and knee issues and constant pain and headaches. Maybe I wouldn’t be miserable so much.

But, yet again, ableism is a bastard of a thing. We look at whether the person is able to move freely, rather than taking a deeper look at why something’s off in their body, and this is the result. Twenty years later, after the first signs started to show, I’m sitting here in what feels like an annoyingly-tightly-wound rubber band of a body on good days and a torture device turned body on a bad day.

Believe people when they say something’s wrong. Don’t ignore obvious signs that something’s off, especially in your kids. Don’t think that something like shoulders and hips being misaligned is a result of a ‘boisterous child who’s clumsy’. For your kids’ sakes, for your sake, for EVERYONE’S sake, don’t ignore red flags, because eventually it’s going to go from being a warning to an active problem that can rob someone of their ability to function without pain, and it can end with them feeling like red-hot pokers are jabbing them all over.

So my next adventure is to try and get to orthopedist (along with a dermatologist for my eczema, and possibly an allergist, as the past few days spent outside have seen my itching increase). I’ll be documenting that here, so I’m sure that’ll be an exceptionally fun ride.

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Disability and Me: Part 1

I have a complex relationship with  my disabilities, namely that for the longest time, I didn’t believe I was disabled. I was fed a line by the people around me that being disabled meant you couldn’t do things on your own, or needed a lot of help. My only examples were my grandfather (a double amputee due to gangrene that was caused by diabetes, a man who was lobotomized in 1960 to get to an aneurysm that was threatening his life), my father (chronic knee problems that necessitated a cane at times and a placard for parking spots), a double amputee teacher at my Catholic school, and a person with cerebral palsy who used a wheelchair in my public high school.

The few examples I saw on TV were people like the ones I already knew, who needed mobility aids or who were amputees, that’s it. I didn’t know that anxiety, ADHD, scoliosis, PTSD, or asthma are considered disabilities. I didn’t know that the pain I was dealing with, both physical and emotional, were and are disabilities. In fact, it wasn’t until I stumbled on tumblr and started searching out disabled bloggers after seeing a post on my dash that I even knew that I, in fact, was dealing with disabilities.

But, once I read up on things, once I stopped internalizing the idea that disability meant you needed some sort of mobility aids or an official document saying ‘this person is disabled’, my life honestly sucked less. I stopped beating myself up over not being able to get around as easily as my non-disabled peers. I stopped thinking that my pain, the difficulties I face, were laziness at best, or some kind of vindictiveness on my part at worst (things I’d been told at various points in my life).

I still struggle with all of that, to be honest. I don’t apply those standards to anyone else, either. That’s the messed up part of all of it. I hold myself to these impossible standards (thanks, in no small part, to my parents (a whole other story that I’ll get into eventually on here)) and hold myself to ableist ideas of disability sometimes, all because of what I was taught in life. I still struggle to even allow myself to claim that word because of what I internalized through my life.

I could use mobility aids on some days. Today was actually one of those days. But those come with people staring at me because I’m ‘too young’ to need them, or don’t look like I need them, or because my mother is ashamed to be seen out with me if I use them and something’s not broken (yes, she’s said as much to me). So instead of using something that’ll help me, I suffer through pain. I deal with it, because any time I mention my pain, it’s invalidated because she ‘has it worse’ and because she’s older so obviously her problems are more serious, and she makes do without those things (out of a misplace sense of pride).

I’m writing all this out to get it out and to say that I’m really sick of shaming of disabled people, both younger disabled people and disabled people who don’t “look” disabled. It’s hell. Days like today, it’s absolute hell. I know I should be able to say “fuck it” and just use the damned cane. I know I shouldn’t care. But I do, because I’ve been through so much abuse in my life and because of PTSD and anxiety, even a sideways glance from a stranger can start me crying. So I suffer, because of society’s messages it’s sent me, and because I can’t get past my own internalized ableism and the idea that I should be ashamed of being in pain unless something’s broken.

I really hope I can get past it one day, before I’ve wrecked my body from all this. I don’t wanna screw myself up that much.