4:12pm April 13, 2013

What my roommates have taught me this hospital stay.

My roommates have taught me more about how people at this hospital see me, than almost anything else.

I’ve had some really good individual nurses and other people here. But when I look at how overall people treat me versus my roommates, there’s no comparison.

My roommates got proper anesthesia, either local or general or heavy sedation, when they were operated on. Under local anesthesia, if it wasn’t working, all they had to do was squeeze a hand and they’d stop everything and administer more.

After their surgeries, people doted on them. Even when their pain was less than mine had been, the nurses were coming in practically every five minutes to check up on them and doing every possible thing from medications to positioning, to help with their pain. Even the way they talk to them is gentle and friendly. And when they had visitors they were never thrown out, regardless of loudness. Once they even explained to a visitor that soon they were doing away with visiting hours so they wouldn’t bother throwing him out.

I still remember what my pain was like after my surgery. Worse than many more invasive surgeries I’ve had. And not controlled as well. Interacting with my existing neuropathies and other chronic pain to become even worse.

It felt like the pain filled my body, filled everything I touched, filled the room, and filled my mind. It filled my mind so hard that it pushed a lot of other things out. Like identity, orientation to my surroundings, comprehension, and lots of other cognitive skills. I often had delirium to one degree or another. But nothing could make me escape the pain, and I just had to endure it. The meds put a tiny dent in it but not enough.

Today I tried hard not to cry because when my roommate complained of unbearable pain they treated it as an emergency and sent in doctors specializing in pain and anesthesia to make her better. Her pain, like mine, like my last roommate, is made worse by one or more tubes rubbing her incisions. I’m almost crying because of how they treated me.

There’s a point with a certain kind of pain where I react more or less normally. But usually pain makes my body and face stiff. My mouth hangs open. My face goes blank. My eyes go fixed. I move as little as possible. Other times strange moaning sounds come out of my mouth and my body writhes around uncontrollably. Often it’s a combination of both reactions.

I once attended a talk by a nurse specializing in pain. About the under-treatment of pain in people with developmental disabilities. She gave us handouts that stressed that for people with communication problems, the important thing is to have people around who know how our specific bodies respond to pain. That way they can alert the nurses when pain is out of control.

One such person is my DPA. She spent all her time by my bed trying to explain how severe my pain was and how she could tell. They treated her with suspicion. They tried to throw her out as she was trying to orient me through bouts of disorientation and delirium. Her attempts to point these things out were dismissed as well. “She’s not delirious, she’s sleeping.” With my eyes wide open? There was anger and irritation in their voices as they talked to her and she had to call in the head nurse to be allowed to stay and comfort me.

And I keep thinking I must be really tough. Because I’ve made it through all this with far less medical help than all these people passing through. I leaned hard on my friends, and on the knowledge that so many people all over the place were pushing for me. And I couldn’t be more grateful. But damn. Nobody should have to go through this. Nobody.

And disabled people are more vulnerable. Aside from the conditions they were getting surgery for, my roommates were nondisabled. Not cognitively disabled. Not developmentally disabled. Not communication impaired. Not wheelchair users. Not on feeding tubes. All of them white, of course, since nondisabled people of color can be treated as bad as white disabled people like me, let alone disabled people of color. Not lesser beings who the medical world would just as soon get rid of.

It is hard to realize again and again the hate. The annoyance that you exist and need and want the same help everyone else seems to take for granted. They never wanted me here even after they saw my life was in danger, they didn’t want to save my life, and they sure as hell didn’t want to make me comfortable. A few individuals were great but the system was horrible.

It’s hard to just sit there and know that to them you don’t matter.

I want to throw things dammit. They are telling my roommate to take her time starting to walk and that what she’s doing already is one huge step and not to go too far. You already know how I got treated when I said the same of myself.

And this isn’t about jealousy. This is about my roommates getting what everyone should get and me getting what nobody should get. It’s frustrating.

I shouldn’t have to be this tough. I should have had what everyone gets. When I ask for what everyone else gets, I get told I’m holding up care that other patients need. When other patients get what everyone else gets and they worry about whether other patients are getting enough care, it’s “of course, stop worrying”.

Men dominating conversations is seen as normal. When women get exactly equal time with men, everyone perceives the women as taking up 90% of the time.

Nondisabled patients getting all the care is normal. When I ask for even a fraction of what other patients get, I’m accused of being a selfish waste of resources who is wanting so much more than other patients get.

See the similarities there? It’s not that I want any more than anyone gets. It’s that when I get even a little more than the nothing they want to give me, they treat me like I take up all their time. I’m a nuisance. I’m selfish and greedy for wanting the bare minimum. But it’s all an illusion. I’m really getting next to nothing and having to rely on my own resources to battle pain so strong it tries to destroy my mind. And it’s always like this. If I told you half of my hospital stories… they all run like this and my regular doctors know it but they can’t protect me.

Something is terribly wrong here and me, it ain’t.