3:44am August 9, 2014

A little over a year ago, they told me they didn’t think I could care for a feeding tube, so I should try death instead.

youneedacat:

Right now?

I just got back from the same hospital, where they knew nothing, nothing about caring for feeding tubes. It wasn’t their fault, they had no particular training. But in another week they’d have blocked it worse than any clog zapper could get through.

I don’t know how to explain the rage that happens when someone is messing with such an intimate part of you, and not giving it the care and respect it deserves, and yet you can’t even blame them because they haven’t been taught any better. These were great people with bad education. But it hurt so bad to see them mistreating my tube, which I’ve grown to love like it’s a family member or something. It’s a part of me now. I feel like it’s alive and that mistreating it is mistreating a living thing.

And I think it’s happier after tonight’s work with it.

And I’m happier to be the one working with it again, I did so much to make it happy again.

A happy tube is a useful tube but also my relationship to my tube means a lot to me. When it’s happy I’m happy, and I feel like we communicate to each other.

And I know more about taking care of a tube than any of the experts who decided I couldn’t possibly take care of one so I should choose death.

Joke’s on them, I guess.

“A little over a year ago, they told me they didn’t think I could care for a feeding tube, so I should try death instead.”

What?

Oh you missed the Tube Wars?

Here’s a summary:

http://ballastexistenz.wordpress.com/2013/05/02/feeding-tubes-and-weird-ideas/

But basically, my DPA got on tumblr and kicked ass for me. And tumblr combined with Not Dead Yet saved my life. Literally. By phoning and emailing what must have been hundreds of times to the hospital telling them that they were watching how they treated me. And I got my tube the next day after the phone protests started. It got so bad that when someone emailed, without even giving my name, asking “Do you have a non-discrimination policy against disabled people?” they got a reply mentioning me by name and saying that I was being given the best possible care. According to an informant within the hospital, everyone from the suits at the top of the hospital to the nurses on the wards were talking about nothing else but the online protest for days. But it got the job done, they stopped pestering me about death.

(The situation was, they couldn’t deny me the tube outright because it was medically necessary, so every day, while I was severely weakened by pneumonia and completely exhausted and had very little fight in me, they’d come into my room and try to tell me why it would be best if I refused the feeding tube. Sometimes I got them to admit the only alternative was death and they’d still say I should consider that alternative. Other times they were more vague. But it was always “Go home and die” at the back of what they were saying.)

I am still incredibly thankful to everyone on tumblr who called or even thought of calling or signal boosted on my behalf. Some people called who had serious trouble making phone calls, and that means a lot to me too. That was an example of one of my more nightmarish hospital stays, because I wasn’t just having to fight my body to stay alive, I was having to fight the doctors to keep me alive rather than let me die. And then after that I was having to fight for basic, basic medical care that my roommates were getting but I was not, such as pain control after the procedure. Every time I saw how my roommates were treated, I became furious, because they treated them like human beings and I was not a human being, clearly. Cognitive ableism in action.

This is why I am so amazed when I have hospital trips like my last one, where everyone is fighting to keep me alive, and everyone is nice and respectful. Normally either the doctors, the nurses, or both, are disrespectful. (Usually I get along with nurses better than doctors for whatever reasons. Maybe because they’re more down to earth.)