12:49am March 4, 2013

Death and disability and chronic illness.

I feel like it’s hard to talk about death around some people. They don’t want to let it into their consciousness. And they get so twitchy I regret bringing the subject up.

I have no desire to die, but I feel like I’ve “met” death and made my peace with the possibility. When you end up in the hospital and the ER with bowel blockages regularly, it’s difficult to avoid the subject.

And it’s not just a subject. It’s a thing. It sits there in the room with you. It’s pale white. And if you’re close enough, you feel a gravitational pull. You get pulled in closer and closer. And you’re too weak to even consider resisting. And it feels right. Almost peaceful. Like lying down when you’re exhausted. But if you do survive – slowly you gain the ability to think about fighting, then to fight the pull, and finally you’re far enough away it can’t get you. For now. Sometimes it lingers in your room if you’re doing really badly for a long time. It just sits there until you’re far enough away.

But you know this is temporary. You know one day you won’t be able to resist. You know you will fall into the whiteness and rest and it may be peaceful or painful but it is what it is. And then your body will feed the bodies of all these other organisms and it’s all actually rather beautiful as long as nobody is around to smell it. So death is part of helping other life live.

So that’s how I’ve come to relate to death on one level. But I don’t want to die before my time, and I don’t want to die because I or some doctor did something stupid. (My DPA tells stories of me in the hospital with severe pneumonia, unworried about dying itself but quite worried about dying due to doctor or nurse stupidity.) And I believe I’m obligated to live as long as possible for so many reasons I won’t go into them. But they aren’t fear of death. I have a sort of temporary surface fear that keeps me alive, but deep down I know death is not bad.

Anyway it’s hard to discuss death with a lot of people. They misjudge your motivations. They try and reassure you in order to reassure themselves.

But I’ve found I can discuss death with a lot of other disabled and chronically ill people without being misunderstood. We laugh about it. It’s a relief. We’ve all thought about it. We’ve all had to. And it turns from a threatening subject into something where we can discuss our feelings and wishes candidly without feeling like we are going to break someone who seems much more fragile for being healthy.

And that’s a big relief. I carry all these thoughts and experiences and questions inside me, afraid they will hurt people to think about. It’s nice to find people who’ve had a lot of the same thoughts and experiences.

It’s also good to know people who can feel the gravitational pull of death acting on me when I don’t. Last year I made it to the hospital, where they saved my life, because of that. One friend said go to the hospital the minute you see death around. Another friend spotted death just before I did. A third friend helped me get admitted for out of control pneumonia.

I think about that now when I’ve aspirated for the sixth time this year and had an infection to match. You never know when it will be barely noticeable and when it will become pneumonia. And when it goes to pneumonia you never know how dangerous it will get, if you will find death in the room with you making you feel like it would be a relief from intolerable exhaustion. So much exhaustion you have no energy to fear.

And something about gastroparesis has brought the subject up again. It’s not that it’s lethal right now. But I nearly starved last year and it has gotten worse these past years, you never know how much worse it will get and what then.

So you think of it. And other people want to imagine that it will never get you. That you’ll live forever. And you might live to ninety. You might also live to next week. It doesn’t announce ahead of time when you’ll fail at getting away. And this upsets people. But it’s the truth. And everyone who’s been close to that edge often enough knows it’s the truth. It’s hard to un-see something like this.

And you think about it in hospitals. When the woman in the next room is delirious, disoriented, dying, and lonely, and there’s nobody for her because the hospital doesn’t let patients organize to help each other. Just someone to hold her hand would do wonders but there’s nobody. I pick up emotions too hard sometimes. I can identify with being delirious and too confused to know if I was dying – the disconnection, flying into pieces, out the window, will I ever have another coherent thought again? Is this how it ends? Will it end when I’m too out of it to notice? Things like that go through your head when you’re delirious and death sits patiently by your bed, with no malice, not trying to pull you in, but potentially succeeding.

Death is universal. I’d love to talk about it candidly, more often, without fear of breaking fragile people whose fragility comes from never having seen death. People who think I’m morbid and shouldn’t talk about it.

Don’t worry though. Death is not hanging around right now. But a few little changes in my body. Tiny changes. And it could. And one day I will be absorbed into it and become part of the carbon cycle and turn into other things. Tomorrow, or fifty years from now, nobody can know.

That’s nobody. Anyone healthy could get hit by a bus. Anyone not healthy still may stick around longer than anyone imagines. And even people with a week to live won’t always know which day. People attempting suicide often pull back at the last moment or otherwise survive their attempt. People on death row may face delays. So people who expect to live to 100 may die at 30, people expecting to die may outlive the age they expect. People try to hide from this unpredictability, but you can’t hide from death even if you cover your eyes and stick your fingers in your ears.

I’d rather know about it, think about it, talk about it, plan for it, make ridiculously irreverent jokes at its expense, all with people I know and care about. It’s upsetting, but it’s part of reality, and not all of it is bad.

And I don’t appear to have the kind of body that gives me the luxury of hiding from this. Every new diagnosis tells me to take care of myself. It’s so easy to land in the hospital. So easy to need a feeding tube. So easy to get a terrible infection and be unable to clear it. So easy to be unable to eat.

It’s like the adaptations I’ve made lately are a house of cards that can fall down at the slightest provocation. And a lot of my medical problems compound each other in terrible ways.

Last year, I aspirated while weak from not eating (gastroparesis) and developed pneumonia. It got worse because bronchiectasis makes it hard to clear. Death was hanging around so I got admitted to the hospital. They filled my IV bags with antibiotics that made me vomit endlessly. The vomiting motion wore out my muscles (neuromuscular disorder) until I collapsed, still vomiting and very delirious. Nobody was around to watch if I aspirated more. And my breathing muscles were greatly weakened by all the heaving. So were the ones that let me vomit without aspirating.

That’s just the beginning of why I was there five weeks. But it felt for the first week especially, like nobody was noticing how my combination of conditions worked together to put me in more and more danger. Like most patients at that hospital, I had a huge collection of diagnoses, and like most patients there, I was only receiving treatment according to the things I was diagnosed with – pneumonia and later gastroparesis. Was also diagnosed but never treated for severe delirium.

Things like that make you think of death too. That time, I got away. Someday, like everyone, I won’t get away. I want to be prepared. And other gimps seem to often have had the experiences that give them the same basic experience and understanding I have on the subject.

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