New Wheelchair and Attempting #Blaugust

2016-06-19 20.09.11What better than a little incentive to start a) blogging more regularly and b) training myself out of thinking that each blog post I write needs to be five million words long and eligible for the Man Booker Prize?

Mostly I’ll just be blogging/reviewing as per usual, but I’m trying to get into the habit of more frequent posting about me and my life in general, relating to books, writing and disability. (Of course it remains to be seen if I’ll actually manage it,  but there we have it!)

But let’s start off with good news: I got my new wheelchair! After the very generous donations given through my GoFundMe whatsit, I got the pennies to buy myself a brand new wheelchair that is lighter, stronger (and therefore smoother and less wobbly) and comes with all-terrain mountain bike style wheels that promise to make parks and hills and all manner of previously-awkward terrain accessible again. I’ve only had the chance to use it a few times so far, but it’s so very different and immeasurably more comfortable than my old one. It’s light and feels less restrictive to sit in, which is definitely a bonus. It feels like there’s more me and less wheelchair, which is something I didn’t even know could be a thing.

I’m excited to take it with me to Nine Worlds Geek Fest next week (oh, gods, I’m not even close to being ready) and feel that if I am up to adventuring around London a little, I won’t need to worry about the terrain and bumpiness of unfamiliar and/or uneven streets.

I am incredibly grateful to anyone who donated, beyond words, in fact, since it’s always the worry that you’re asking for too much, isn’t it? Well, here I am with my new wheels and they’ve already started to make a noted difference to how my pain is managed when I’m sitting in it outside. I have high hopes for long durations spent in the ‘chair at Nine Worlds, where I’ll be in it far, far more than I usually am.

So, thank you again to anyone who donated or shared the GoFundMe link–you have my eternal gratitude and the promise that, should I ever actually regain my throne as the long-lost prince of the faerie kingdoms, I’ll send my house-cleaning legions of brownies your way.

And as for Blaugust? I’ve been meaning to blog more, so this seems a pretty good incentive to kick that frequency up a notch. The goal is to post more specifically about life in Leoland and navigating chronic illness and disability whilst also being an anxious creative who really, really sucks at one thing all spoonies need: rest!

International Wheelchair Day: All hail the wheelchair!

It’s apparently International Wheelchair Day—one of those supposed “holidays” that most people only ever realise are a thing when they see someone tweet something about it. People like me. It just so happens that I can get behind this day. Wheelchairs make my life more liveable. If I didn’t have a wheelchair? Well.

Grocery shopping? Nope. Restaurants for meals out? Nah. Trips to the cinema? Forget it. Going anywhere whatsoever without the risk of either keeling over, bumping into someone or being in so much pain I’d sooner just drop to my knees and talk to the ground, hoping to get some form of missive through to the Underworld and strike a deal with my soul for immediate teleportation hope? You must be joking.

I’m not paralysed; I can walk. Well.

Strictly speaking, that depends on just what you consider “walking” and how you grade “performance”. Can I walk to the loo? Yes, yes I can. Can I walk to the ensuite bathroom for a shower? Yes, yes I can (though do note that here I use a shower seat, because I can’t stand in the shower for long at all; some days not at all). Can I walk from the regular parking bays at a supermarket to the door of the shop? Not on your life. Could I trek from the car park, cross the road and through the gauntlet of people and decorative seating standing between me and the doors of Cineworld when a movie takes my fancy? Hahahahah. (That’s a “no”, by the way.)

There were some days that I thought I could probably walk, whether with crutches or otherwise, and I found out the hard way that this wasn’t the case. I thought that I didn’t need—maybe even deserve—a wheelchair, because my legs work. But it soon became apparent that without a mobility aid like a wheelchair, I wasn’t going to have much quality of life outside the house. I couldn’t walk far, couldn’t park in the disabled bays as technically back then I wasn’t considered disabled (I now am, after having realised that the term is broad and does, very much so, apply to me) and didn’t have a Blue Badge. I couldn’t do most things, couldn’t go places, and couldn’t rely on using the crutches for long at all because of the immense pain they caused in my arms and shoulders.

So, I got a wheelchair. I’m grateful that my doctor arranged this for me through a charity and I’ve enjoyed the added freedom since. It’s a self-propelled wheelchair, but I very rarely push myself along. If we’re indoors I will, but otherwise my brother pushes me. The motion of propelling is exhausting and can cause pain in my aforementioned arms and shoulders. The wheelchair isn’t ideal and sitting in it can trigger knee pain, but it’s better than struggling along, close to tears and stumbling all over the place from pain and fatigue.

There’s something slightly terrifying about being out and about and hurting so much you want to cry, but knowing you have to keep walking because otherwise—what? What are you going to do if you stop walking when you’re nowhere near the car or a bus or anything bar a vast ocean of concrete and cobbles? It’s panic-inducing and horrible. That’s sort of when you know you might need a wheelchair.

I’ve never looked back. It changed everything.

I don’t use my wheelchair in the house, but honestly, this is due more to the layout of my house than need. There are times, during my really bad flares, where I would gladly use the chair indoors, but it’s not really possible without a lot of extra fuss and change and frankly, when I can just use the walls and furniture to help, I’d rather do that.

But being in a wheelchair is hard. If I didn’t go out with my brother, I would find the world a very difficult place to navigate, even with the well-meaning help of strangers here and there. I can’t communicate with people I don’t know, due to crippling social anxiety, so without my brother, the help I’d need from random people would make it impossible for me to go out and do things, even with the wheelchair. In many ways, this is why I’ve never considered a powerchair. Yes, I could do with one, in theory, because of my arms and shoulders—but when I don’t go out alone, it seems a little pointless.

So yes, navigating the outside world is very, very hard, even with a wheelchair. Especially with a wheelchair. Steps! Steps, everywhere! That teeny little not-even-worth-mentioning-step-that’s-really-just-an-inch-or-two? That’s a step. Taken at the wrong angle (e.g. without warning that it’s there) a step like that will jolt me and cause pain. This is to say nothing of badly-paved streets that jolt and jerk the chair even with my brother being as careful as possible. And we’ve not even started on no access to the actual pavement itself from the road—even in disabled bays themselves. On a particular stretch we’re require to push me along most of the length of the road (which happens to be a main hub for busses and a through-road into the centre) before we get to the bit where we can roll the chair up to the pavement. It’s silly.

I’ve had people expect me to get out of the wheelchair, too. People who can’t possibly know that I’m not actually paralysed. Can you imagine? “Oh, can you just get out of the chair because we can’t be bothered to obey the law and make our premises accessible just for a few people like you?” Mhmm.

“Oh, can you possibly stop being such an ass, maybe?”

Mainly, I get glared at for the unspeakable crime of being young and sitting in a wheelchair. Naturally, since there is no visible injury or missing limb, I must just be lazy. Ah! The lazy millennials! I’ve found the worst offenders are upper-middle-aged people. Of course, not everyone is horrible. But honestly? The nice people are, in my personal experiences, in the minority. It’s sad, but it’s true. Most people are crap around wheelchairs and disabled people. They walk in front of the chair at a moment’s notice and then glare down at you in the chair and not the one pushing the chair, if you happen to clip their calves. Well, if you looked where you were going and stopped thinking the world belonged to you, you might have noticed the ruddy great wheelchair at the side of you.

But! I’m certainly not going to let people being asses make me feel uncomfortable for using a wheelchair. It has made things possible. I’m going to a masquerade ball in May, something I wouldn’t be able to do if I had to stand the whole night, or even sit awkwardly in a corner the whole time. I’ll be able to wheel about. And yes, of course it’s depressing that whatever costume I wear will feel as though it’s being ruined by the chair. Some people are 100% comfortable with their chairs, but I’m not one of them. Not physically. I’m self-conscious and suffer from a hefty amount of self-loathing, so having to be seated in a wheelchair in my period finery and mask won’t be ideal. It’s upsetting, but it’s nothing compared with the upset of not being able to go at all.

Maybe if wheelchairs were something you saw more often. But you don’t. Disabled representation? Ha! What’s that, then? Because I sure as hell don’t know. Never mind if that disability happens to be related to an illness rather than physical injury or trauma. I want to feel comfortable in my wheelchair, the same way people feel comfortable in their cars or on their bikes… but that’s not about to happen any time soon.

Still, I wouldn’t trade the wheelchair for the world. It’s heavy and battered and needs replacing—but it’s mine and it improves my quality of life considerably when I’m out and about in the world.

I’ll admit, I’m nervous about things such as the ball and a convention I’m attending this summer. I’m not used to being That Guy in the Wheelchair in a social setting. I don’t know if it makes a difference to how people see you. I wouldn’t know. All I do know is that people in general look at me funny when I transfer from my wheelchair to a seat in a restaurant and my brother folds the chair away. There’s always the fear that someone will make a comment, that a joke will be made in bad taste and you’ll be made to feel like a fraud, be made to feel as though you need to defend yourself, to explain your situation.

I think it’s tiny wee things like this that people who don’t use wheelchairs wouldn’t even consider when thinking about the problems that disabled people face. It’s not always about no ramps for doors and badly-cobbled streets. It’s more than that. Think of online memes of people in wheelchairs standing up. It’s actually pretty horrific, really.

Either way, my wheelchair is one of the best decisions I’ve ever made. It was a necessity; I couldn’t go on pretending I could walk when I so clearly couldn’t. It just wasn’t safe for me to do so, when a bad fall was the least of the problems, the least of the things that could go wrong. It can be difficult to get used to if you’re someone who enjoys a lot of freedom (being a hermit, I didn’t mind so much, since it honestly gave me more freedom than it took by making me semi-reliant on people), especially when self-propelled wheelchairs take a lot of energy to wheel about. But they’re worth it and you notice the difference immediately.

Unfortunately, as of yet, my wheelchair does not have “go faster” red stripes.