8:16pm April 18, 2013

I wanted to thank everyone.

I haven’t had the time or energy to say this before. But I know a lot of the reason I’m still around and likely going to be around for a long time now, is because so many people, especially people from tumblr and other places online, called the hospital and demanded they treat me right. Or, when they couldn’t do that, at least passed on the word about things or did other things.

I’m still recovering from the surgery, and from complications when my tube got pulled out slightly but really painfully, which was only fixed yesterday. I’m still committed to forcing that hospital to never do that again to anyone, especially people who are really vulnerable to being talked into death and don’t have the advocates and disability community connections and sort-of-fame and other advantages that I had. I will do that. I will work with local disability communities especially, and with other people who have offered support. But I can’t do that instantly because I’m really worn out and in pain and exhausted and sick and I still need a lot of time to recover. I’ve only been out of the hospital for days. So if you haven’t heard from me or webmuskie, it’s because of that, and also because we both have various physical and cognitive issues that may make communication difficult. Doesn’t mean we don’t appreciate the support.

And I can’t ever thank anyone enough for what they did. When I got freaked out over this, and whenever I get freaked out over this, webmuskie tells me I have thousands of people supporting me, and that’s so hard to believe because I have trouble believing that many people would care about someone like me, but it seems to be true from the volume of responses I’ve seen and it’s amazing and I just can’t thank people enough at all. I never expected this. And I’ll never forget it.

Once I stop getting blurred vision blurred brain blurred everything from all of the medical stuff, I will do everything I can to make sure that people who don’t have thousands of people supporting them, will also benefit from what happened to me. Because one thing that happened to me was that people treated me really awful. But another thing that happened to me was that people unexpectedly, other people, treated me really amazing. Always be grateful. And always try to make the world better for people who don’t have what I had.

Now if I could only stop feeling really sick and horrible. I guess that will come later. But I haven’t aspirated once since I got the tube, and that’s amazing given how often I was aspirating beforehand. So things are better, even if I still feel like crap from the surgery itself. The hospital stay also ensured I finally got on oxygen, which I’ve needed for a long time but never had until now. Those two things have made a lot of things better that weren’t good before.

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