12:09am May 18, 2013

I think about death a lot.

Note I don’t mean suicide, I think about death itself, natural death, because of medical reasons. And I’m not trying to be morbid. I hope this doesn’t upset anyone. I have been putting off writing about it for fear of scaring people. But it is what it is, and I think about it, so I’m writing about it.

It’s hard not to think about death when you wake up in the middle of the night and you can’t breathe. And then suddenly you start coughing up bile. For like an hour or longer. Just getting it out of your lungs. Trying not to throw up from the taste. And you wonder if this time you’ll die, either from the aspiration itself or the pneumonia that will follow. If this time you’ll get lucky again. Or not.

That was happening to me a couple times a week earlier this year, until the feeding tube. Before that, it happened several times a year.

They acknowledged to me that if it kept happening like that eventually it would kill me for real.

But you never know which time that will be.

And you rarely expect to wake up choking like that.

So you start realizing that death is out there and it can happen to you at any time. Especially when there’s so many other things you have, that can kill you. There’s the bowel blockages. And the thing where you get too weak to breathe properly. Things like that.

And you get to know death. When you’re ill enough, it’s like it sits there by your bed. It has all the time in the world. And it never feels scary. It feels like rest. It tells you to lie down and rest. And it takes time to fight your way away from it. But nobody will fight their way away from it forever.

I seem to be in a weird category. I’m chronically ill. I’m not terminally ill. But I’m precariously ill. That’s a state most people don’t understand.

The way my body works, it could kill me tonight or it could wait forty years to kill me.

I hate when people talk about how long they think I have left. People have been doing that since before I knew how much danger I was in. Not doctor people, just people. One guy who claimed to be helping me, went around telling people he didn’t think I’d make it to forty. He thought that simply acknowledging that my illness was real would make me grateful to him. Except that practically everyone in my life acknowledges that my illnesses are real. There’s no way around it if you actually see the symptoms and the test results and stuff. It’s only Internet trolls and people influenced by them, people who aren’t really a part of my life, who can think otherwise. And they’re laughable.

And I’ve heard other people discussing how long they think I have. Do me a favor, and if you’re not close enough to me to get away with it, don’t have those discussions unless I say it’s okay.

It’s not that I never think of it though. It’s just that discussing someone’s possible lifespan in front of them is pretty rude unless you know it’s okay. I’ve had people ask me “How long do you have?” too. Just don’t be that person.

The answer is I don’t know. There’s no possible way of knowing the answer to that kind of question. Even people with terminal illness don’t always know for sure. And I don’t have a terminal illness.

And yet, before I got the feeding tube, the answer would have been not long. You can’t aspirate stomach contents over and over and over and over and over and get aspiration pneumonia over and over and continue surviving that forever. I could even be dead by now without the tube.

With the tube, who knows. I’ve only had one close call with aspiration, and I woke up in time to stop it going into my lungs. Other than that, nothing. Nothing in two months. Before that, it would have happened at least sixteen times in the same period. So the improvement is obvious.

That’s the most spectacular possible cause of death but it’s not the only one. There’s the possible breathing trouble, although I hope the pyridostigmine and the oxygen will help with that. There’s still some possibility my guts could go back to making blockages all the time. Or something totally new could happen.

I do wonder if I’ll get to forty or not. Sometimes it seems like I won’t. Like there’s just too many close calls and one of them will catch up to me before then. You can only dodge fate so many times. But it’s also possible I’ll continue dodging and live well into middle age, or even old age.

That’s what I mean by precarious. My entire life could collapse at any time. And yet it could also remain more or less stable for decades. And there’s no knowing until it happens.

Living with that uncertainty has changed me.

There’s a lot I used to care about that I can’t make myself care about anymore. I just can’t. Because if my time is potentially limited, I have to focus on what’s actually important to me. And things that used to seem important to me have dropped completely off the map. I don’t even notice them anymore. People who used to be able to hurt me can’t even touch me now. Because they just don’t matter. I never believed I could get to that point, but I did. It’s too bad it took choking on bile a bunch of times to get there though.

And it’s made me realize what’s actually important to me. I know that’s kind of a cliche. But I’ve gotten ruthlessly practical with myself. I’ve reasoned that if there’s even a chance my time may be more limited than usually I have to treat it as if it is, and focus on doing the things I would very much regret not doing.

Weirdly enough, there’s only one major thing there that’s for myself. I want to meet Anne (feliscorvus). The two of us are so close we practically share a brain. We’ve probably met without being aware of it. But I want to be able to experience being in the same room with her, the kind of communication we could come up with without having to rely on text or video.

Everything else is for other people.

A lot of it has to do with my recent experiences in the healthcare system. I want to make it so that nobody has to go through what I went through, to get a tube that saved my life. So that medical professionals aren’t even allowed to attempt to talk people into dying. So they leave that up to people’s personal choice. That includes giving people an array of options to continue to live, so that they don’t feel obligated to die due to a lack of options or feeling like a burden. It shouldn’t be up to doctors, who almost always have a lower opinion of our lives than we do.

And it’s other things like that. I want to use my bad experiences for something useful, to give something back to other people who might otherwise not make it through such experiences. I don’t know all the ways I want to do it, but I know I want to do it. That includes making sure people know that feeding tubes aren’t a sign your life is over, they’re a means for continuing your life as long as possible. And they don’t have to be an unending tragedy the way some doctors try and make it sound.

So that’s the sort of thing this has made me focus on. Sometimes I find this all very difficult. But other times, it seems all very matter of fact and practical: These are the things I want to make sure I do no matter what. There aren’t many. Or at least, there aren’t many on paper. When you actually think about what to do, it becomes a lot of things, because there are so many different ways to help people survive.

And it’s not just what I want to do. It’s who I want to be. I know someone who had a close encounter with death and he said that when he was certain he was dying, his regrets weren’t things he hadn’t done. It was the person he hadn’t been. And I very much agree with him on that. That’s the things that come to mind for me the most too, and have ever since I first recognized that death was a possibility when my blood pressure dropped to dangerous levels from dehydration in my early twenties.

I don’t seem to approach death with a lot of fear. I certainly get the adrenaline going at times that I come anywhere close enough to be worrisome. But actual existential dread at the concept of death just isn’t there for some reason I don’t understand.

Sometimes it makes me feel things more. Both good and bad things. The concept that at any moment I might not be there, seems to amplify everything. The other day I was thinking how wonderful it felt just to be lying here with my cat reading a book. I kept thinking how content Anne was at that moment, too. Everything was just perfect for a few minutes. But other moments there’s this sadness that’s hard to break out of.

And it’s not the same as knowing how long you have. It’s more like knowing you might have only a day, and knowing you might have decades. But knowing that given how many close calls you have, it’s likely you won’t have a normal lifespan. That it will be somewhere in between tomorrow and decades. Perhaps just years, that sounds the most likely to be right. And having to deal with the uncertainty of all this. And knowing you could die tomorrow.

The reality of course is that all of us could die tomorrow. But most people are able to keep that knowledge hidden deep inside their head. They pretend, even to themselves, that they’re immortal. And when death happens to them, they’re completely taken by surprise.

For me, the concept is no longer a surprise. Certainly it’s surprising to wake up choking. But the fact that this could be life threatening is no longer surprising. Neither is the fact that it could happen at any time. Neither is the fact that I have plenty of other problems that could also be life threatening.

So while I’m not exactly obsessed with death, it’s something I think about. I think about it’s impact on me, but also its impact on other people. I try to plan for the practical stuff. And I hope that whenever it happens, I’ll be ready. As I said before, death itself isn’t something I’m that scared of. Dying before my time because of bigotry or stupidity however, that scares me a lot more. And there’s nothing like my recent experiences with the medical system to get you thinking about your own mortality.

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