I watched a TV show today in which someone tried to live as a paraplegic would for a month, confined to a wheelchair. As they went through it, they spoke with people who had been in accidents of various sorts, and who were trying to come to terms with their new reality. So many of the sentiments of what they said felt so very familiar.
I wouldn’t have thought I could handle it. But you do somehow. Because you just don’t have a choice.
There are times that you shut the door at night and just break down for a while. But then you get back up and keep going. Because you have to.
All you can do is try to be as positive as you can. Because otherwise you’ll never make it through.
There are so many times that some part of my mind is still thinking that surely I’ll wake up any second. That surely this is all a dream.
It happens so quickly, and you realize that it really could happen to anyone. They’re just regular, able-bodied people who aren’t able-bodied anymore.
You hear a lot about people this happens to at first…and then you just stop hearing anything about them.
Don’t assume that they don’t want you to ask about it. They would rather you ask than you assume.
A lot of friends just stopped coming by. The chair is too hard for a lot of them to deal with.
I find, though, whenever I watch things like that, that I can’t help also being struck by the differences. And I’m not for a second saying that it wouldn’t be horrid to have a spinal cord injury. It would be awful. And my heart goes out completely to anyone who has to struggle through that. I wouldn’t wish it on anyone. It’s just that parts of watching their experience also drew attention to some of the really difficult pieces of my own existence right now. I try to focus on the positives, I really do. And I hope that venting this doesn’t negatively affect anybody’s perceptions of me. It’s just that some days and some moments things manage to creep through for a while. And I thought that trying to write them down might be a more productive way to handle this than marinading in them on my own. I preface this knowing that it could be much worse. I think often about how lucky I am in so many ways, and how many people with and without this disease are SO much worse off than I am. I truly do value everything I have going for me. And at least I have hope. Six percent is a heart-breakingly small statistic for recovery, but it is something. And though by most accounts more than half the others stay the same or worsen, there is another group that has at least a partial improvement. I may yet get out of this (and I had better, because I’m not sure that I can handle the alternative). But that doesn’t mean now and then it doesn’t get overwhelming, you know?
There was this whole team of rehabilitation workers filmed in the show who were helping the newly injured adjust, teaching them how to be independent, and wishing them well, and sympathizing about how hard it must be.
People finding out what had happened to them immediately had a sense that was awful, and responded largely with sympathy. Most people finding out what has happened to me have no idea what the ramifications are. Many think I’m basically fine.
They went to a support group for people going through something similar. They could go to that. There was even one for friends and family, since there is an amazing amount of strain on people close to someone disabled, who suddenly find themselves in a caregiver role.
The people with some use of their arms could work out the muscles they still had use of, to try to compensate for other limitations. I can’t work out ANY part of my body that way without making myself sicker. Maybe it’s odd, but this was one of the things that struck me most. I guess it would just be amazing to be able to work hard and have it make a difference. The only thing I can really actively do to get better is to do nothing. Which is an incredibly helpless feeling.
Some of them could drive, with the use of their arms. Some of them could push their own wheelchair, and the others could sit up in one, even if they needed to be strapped in. I couldn’t. I am completely reliant on my husband. Every part of me is defunct to one degree or another, and energy used by one body part comes out of the same communal store. And I cannot stay upright.
They could sit and drink a beer, and eat a meal at a restaurant. I can’t. My body can’t tolerate either alcohol or regular food anymore.
They still had their mind. They could think straight, and talk to people, and consider careers and other things they wanted to do with their lives. They could watch TV without feeling the strain of it. They could read as much as they wanted to. They could type up something like this without paying for it later. They could express themselves whenever they wanted to.
I think it was just extra hard because the thread running through the whole show from these people was that they can still do anything they want to do – they just have to find a way to do it. They could trade hard work for increased independence, and I don’t feel like I have that option right now ,but desperately want it. I just want to be able to DO something. I want to be able to work towards getting better in some active way. I want to figure out how to get around my limitations and LIVE. I want to be able to get out in the world again with everybody else.
Hell, I just want to sit up again for an hour without a problem.
I want to be able to talk to a friend for as long as I want to without knowing in the back of my mind that I’m going to pay for it.
I want to use the computer as much as I want, or read all day if I want to. I want to be able to write this stuff without feeling like my head is about to explode from the strain.
I want to be able to watch half an hour about paraplegics and not feel envy.