Tomorrow, with luck, I will get an electric wheelchair from wheelchair services. With even more luck, it will have powered tilt and recline, and a headrest. These are the things that I need most. That and materials that will prevent pressure sores. I’ve been waiting over a year for this, and I’ve been needing it even longer. It will, hopefully, give me a new lease of life, let me go out on my own (which has been impossible for over a year), let me go to classes more comfortably, and concentrate, make me well again.
That last one is the painful one. Every time I have moved mobility aids, I’ve thought “when I get this, I’ll become well, apart from needing a wheelchair. It will remove all my illness and pain and symptoms and I will be free with the energy to live a normal life”. Every time so far I’ve been wrong, and I’ll probably be wrong again. I only got 5 days warning of the appointment and it was only then that it became real and I realised that I wasn’t going to magically get better when I got an electric wheelchair. Instead, it’s a marker of deterioration, that I can no longer use a manual independently, that I could no longer use crutches, that I can no longer use my legs. It’s a marker of the problems with my body, and it’s a marker of me being seriously* ill.
This has been a difficult few days. I’ve been trying to come to terms with being disabled essentially. I haven’t always had a particularly emotional reaction to mobility aids or to disability, but this time I’ve been all over the place, because this feels different. I’ve gone from activity to passivity. A good friend pointed out that actually I’m currently passive in a manual chair, and will be more active in an electric chair, but somehow I feel like a powerchair is a sign of passivity, and I feel like I’ll get a lot more stares from people, and it’ll feel less like part of my body than the manual does. I’m not losing my manual, I’m just gaining a chair, a tool, to help me live independently, but I don’t want to need help to live independently. I’ve become agonisingly jealous of the students I see every day, who aren’t suffering this, even when they’re suffering other things, because they can still walk, and I want so much to be able to do that. I walk in my dreams, and I wake up to find I can’t. It hurts.
I’m pleased that I’m finally getting the powerchair in many ways, even if my current feelings are emotional and difficult because I know that having it will drastically improve my life, especially once I’m past these emotions. What I’m worried about is other people’s reactions.
I’m sensitive about this. I’m sensitive about being disabled. That feels quite reasonable. I’m sensitive about my disability having gotten worse, which still feels reasonable. I’m sensitive about having a new public marker that shows everyone how ill I am. Still feels reasonable. However, I know that I’m going to face a flood of congratulations, of people feeling positive and happy and pleased about my new wheelchair, and then deciding to express that to me. I don’t think it’s clicked for them why this might feel painful for me – I think people see me with a new tool, and a tool I’ve wanted for a while, and don’t see that I’ve wanted the tool as a result of painful things and that receiving it is difficult. I know I shouldn’t react badly when people congratulate me, but it’ll be difficult to react well. What I’d like is a world where people didn’t feel entitled to my emotions or like they had the right to ask me about the new chair, or tell me how they feel about it. I don’t care how people feel about my new chair, I care about how I feel, and I feel emotionally sore (and it’s going to hurt physically as well as my body adapts to the new shape).
If your urge is to tell me congratulations or how pleased you are, or to react in any way (assuming we’re not very close) then thanks but no thanks, I don’t want to hear it. I want to get on, on my own, and deal with my own mental pain slowly and quietly in my own spaces. If we’re close, you’re allowed to notice, to comment on it emotionlessly, to compliment it, whatever, but please don’t tell me how happy you are, or how happy I should be because right now, I’m relieved, grieving for my lost mobility, fragile, anxious, and more, and I wish people would recognise that.
Now just to hope, however odd and desperate I feel, that I get the chair and that it’s what I need.
*I always feel funny saying I’m seriously ill, but, actually I’ve gone from walking unaided to being unable to use my lower body, and with little strength in my upper body, in four years. My medication is a Class A drug. I probably am quite seriously ill actually.
from WordPress http://livingwhiledisabled.wordpress.com/2014/10/21/congratulations-youre-more-disabled/
-Whence I am blogging specifically about disability