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!

Wheelchair Fund

wc01017_excel_allterrain_outdoor_selfpropelled_wheelchair (2)

This is the Excel All-Terrain Outdoor SP wheelchair

So I started a GoFundMe for a new wheelchair. I was nervous about doing so for a few reasons, not least of all: what if nobody cares? why should anyone give me money? I feel bad asking for things! Shouldn’t I just be grateful I have a wheelchair at all?

But then I went ahead and made the campaign anyway. Yes, I’m worried that I’m just one tiny person on the Internet, and not very well-known, even (especially?) within the chronic illness and disabled communities, so it would feel like shouting into the wind. Yes, I worried that I’ll be sitting here, afraid that I’ll be sitting here feeling fairly invisible and that those feelings of inadequacy will lead me down the familiar paths of yes, but shouldn’t I be grateful for my current wheelchair? and Isn’t it just vain or selfish to want a better wheelchair so I can do more things?

Well, in fact, no–to both.

Of course I am absurdly grateful for the wheelchair I have. It gave me a measure of my former capacity to live as I want back. But that’s all it gave me: a measureAdditionally, the wheelchair is old and rickety when sitting in it. It’s not comfortable, can exacerbate pain and is extremely limiting in where it can be wheeled/pushed. So yes, whilst it means that with this chair I can go out when before, I could only go out and stay in the car, it also means that I’m still unable to do even the most simple of things.

The current wheelchair I have is horribly unreliable on any terrain that isn’t a flat, even surface. And really, when was the last time you went into your local town or village (or any town or village!) and found a place where the pavement was flat, on each and every street? My town is relatively well-kept and even so, there are so many areas that I hate visiting because I know that I’ll be jostled and jolted and generally would rather avoid due to the wheelchair being ill-equipped.

Needless to say, many of the places I would love to visit are completely off the table for me. I don’t want to be unable to travel afield of home just because my wheelchair is inadequate. I feel trapped enough dealing with my social anxiety and the realities of disability and chronic illness, without also being limited by where I can go. I’ve been feeling very caged for a long time, with places like parks and new places (where I don’t know what the terrain is like, and therefore can’t anticipate how my wheelchair will handle it) completely inaccessible for me. It’s crushing to want to try to break out of my shell, finally, and to want to be at least a little adventurous, only to find that even now I feel that mentally I can, physically I still can’t.

It’s not fair that I can’t do even the simplest of things without the risk of exacerbated pain and even injury, just because my wheelchair is unsuitable. When I was given it through my doctor (which I’m still very grateful for, of course!), I was told it would potentially lessen my social anxieties by being a wheelchair that spoke of “an injury, such as a broken leg” instead of a disability.

Whilst I completely understood what my Dr was going for (and at the time, it was very relevant!), the reality is that I am disabledI’m not someone with an injury who needs the wheelchair for a brief period of time whilst an injury heals.

I am disabled and I need my wheelchair whenever I leave the house. And it’s starting to become more and more stressful because of how uncomfortable and unsuitable the wheelchair actually is. All I want is to be able to live as normally as possible, in relation to what that means for me. I want to be able to travel and explore cities and towns as much as I want to be able to go off road into parks and the countryside where I live.

Really, I just want as few limitations as possible. That’s all. I’m going to London in a few weeks to attend Nine Worlds Geekfest (which is my first convention since becoming disabled) and I’m nervous, because I don’t see my wheelchair holding up well in London, meaning I won’t be able to go to many of the places I’d like. The convention will likely be amazing, but I’ll still be very limited to just the hotel, which is kind of disheartening.

So if you feel you can help at all, please do! You’ll have my genuine and eternal gratitude for any help you can give–whether that’s money to help towards the chair itself, or simply sharing this post and/or RTing what I post on Twitter.

A new wheelchair will help change everything for me. Thanks for reading!