Now I know how to run down my stamina.
Inhale stomach contents. Fuck.
I’d been doing better with stamina but I’m not up to all this.
Because not only am I out of breath.
But I have to drain my stomach and that takes time and energy.
And I did try sucking it out with the syringe. It mostly worked. But then it also got stomach stuff everywhere from the leaking part. Well not everywhere. But enough places I had to do repairs to some stuff and that took more time and energy. I did wrap it in a rubber glove and wrap toilet paper around that and that meant it didn’t get on my skin, but it did get all over the tube. I’m not sure the silicone tape I ordered will fix this kind of leak.
So I took my oxygen level because I was way out of breath after that. And my oxygen is borderline low. Which I expected. But the thing also takes my pulse. Which was 125. Which explains the out of breath more than the oxygen level did. Because my oxygen level is frequently that low anyway.
So I put the oxygen back on. Once I catch my breath I might move it up to three liters because I think this may just be the kind of situation that warrants that. That’s the maximum I’m allowed to take right now. Well they said I could take more, but if I need more, I need to also call a doctor right away because something’s wrong.
Fey was running around going wrowl, wrowl, wrowwweeeeowwwwl.
But now she’s curled up on my arm.
And you know that’s still wonderful even if my Iungs hurt like hell and my breath tastes like bile and acid combined. Disgusting bitter sour taste. But I’ve done this before I’m used to that. I just hope I live through it is all.
(Note I’m going to discuss death and my feelings about it in detail. Including my wishes for after I die, should it happen. So if that’s a problem to you, don’t read further.)
Already making my peace with if I don’t, though. You have to do that, every time, or you go absolutely crazy. Once I realize it’s okay if I die, I can relax a bit, and I need to relax if I’m going to get the best chance of living. If I’m too stressy that messes up my chances of recovery.
So in order to get the best chances of living you have to accept you could die. And then once you’ve accepted that, you can move on and do practical stuff without worry in the background.
Plus if I were upset about dying. Then if I really did die. I’d spend my last time on earth stressed out and miserable. And that would be bad for me and everyone around me.
Fey has already curled around my arm. Is smelling my breath. Purring loudly. I wonder if it’s a healing purr. Cats purring aids in their own healing, so I imagine having a cat purring on top of me helps. Sometimes she purrs really loud when she’s concerned about my health. And I wonder at those times if that’s what she’s doing. Consciously or instinctively.
Can’t stop coughing. Now it’s not getting the acid out of my lungs. It’s just irritated lungs. Already probably doing their irritated thing. Combined with their bronchiectasis thing. Which is to produce crap loads of phlegm. Which the bronchiectasis makes hard to clear. Which means I’m already in danger of puking from the amount of coughing I’m doing. And I can’t puke or I put myself in more danger.
I’ve weighed whether or not to write out all of what I’m thinking. Like in this post. But I’ve decided to do so. Because my tumblr has always been where I can be myself, including the parts of me I didn’t used to feel like I could do in public. I’m not trying to worry anyone talking about these things. But this is about as real as it gets. And I don’t want to pretend it’s not happening. Especially because if I get sick enough, I might not be able to explain everything later.
I hope I don’t get too sick though. I don’t like delirium. And I don’t like being so low on spoons that I can’t type or move in bed. And I don’t like hospitals. And I want to be around a lot longer than this.
So hopefully I can just take a bunch of antibiotics and get well like happens sometimes. But I also need to get some answers as to what’s going on with my stomach. And I need to possibly attach a bag to my g tube overnight. And other stuff. Because this isn’t okay, and there have to be ways to cut down the risk even further. Once every couple of months is better than a couple of times a week, but it’s still dangerous as hell.
I am glad I didn’t put off writing about death again. I knew this could happen any time and it’s better to have that explanation out there. Of what it’s like when this happens. And what having this happen over and over again has done to my outlook on life. And other stuff like that. That way I didn’t have to explain what I meant in my last post when I referred to precarious health. Things like that.
I’m pretty sure I’m getting enough oxygen but I still feel out of breath. And it hurts to breathe. And my lungs feel weird, not just painful, but weird.
I wonder if I should get someone to come out here, just so someone knows what happened. All I have to do is hit a button and they will come out. And then we can decide what to do from here. Whether it’s worth my while getting my lungs x rayed, or whether I can just get my antibiotics in the morning.
A lung x ray isn’t always a good thing this early on in an aspiration. And the ER would wear me out more than I’m already worn out. The reason a lung x ray isn’t always good, is that it takes days sometimes for the problems to show up on x ray. By that time you’re long past needing antibiotics. And if you have bronchiectasis, the thing you do is always get antibiotics right away any time you aspirate. Because to do otherwise is just asking for pneumonia.
I was so relieved once when a doctor told that to me.
Like I was at the urgent care clinic. And she walked in. I told her I have bronchiectasis and I just aspirated stomach contents. And she said okay I’ll write a prescription for antibiotics.
And I’m not used to that. So I was like… Don’t you need to x ray me?
And she explained the above. And it was kind of funny because I was the one pushing for tests and the doctor was the one saying no just get antibiotics now you need them now not after the tests come back, and the tests won’t be useful yet necessarily anyway, and etc.
And after that I set up a standing order where all I have to do is call my doc and they write a script for antibiotics.
I’ve had to use that standing order way way way more than I ever expected.
Gastroparesis plus bronchiectasis just fucking sucks donkey balls sometimes.
But just in case I die I’m going to make every moment count. I’m going to notice every good thing and I’m going to bask in it. I am going to love Fey and Anne and Laura and my parents and everyone else I know. I am going to try to be as decent to people as I possibly can, and do as much for other people as I can manage.
This isn’t some kind of bargaining thing. It’s a renewed reminder how short life can be and that I’m not going to waste any time. Because like I said. I could aspirate any time. I could aspirate tonight. And you can’t predict ahead of time if you’ll live or die, when you aspirate. And I did aspirate. And I’m not going to waste any time, whether I die tomorrow or years from now, whether it’s aspiration or something else. Because even with my heightened awareness of not having all the time in the world. Even with that awareness, there’s being aware of it and then there’s having it shoved in my face. And I just had it shoved in my face. Or maybe in my lungs.
Anyway, what’s always struck me at times like this is love. That love is the most important thing. Not the emotion. But the property of the world. The one that seems to be embedded at the deepest levels of existence. The one that is an ethical thing. The one that means giving a shit what happens to other people, doing your best to be good to people, to do the right thing. And that can’t ever be truly expressed in words. It doesn’t mean being passive and sweet and saccharine to everyone (in fact that can be the opposite of love, often — and love doesn’t mean not getting angry, either), but it does mean doing right by people.
That’s what’s important. And it hits me over the head every time I aspirate and am reminded how short life can be.
I do at first worry about whether I did everything I needed to do. Whether I got my will written, which I haven’t. I need to. Whether I got my passwords written down so Anne can get into all my accounts everywhere. Whether all my affairs are in order, that kind of thing.
But then after those thoughts have settled down. I always wonder about who I have been. Whether I’ve been good to people. Whether I’ve done everything I could for people. Whether I’ve noticed all the beauty in the world. Whether I’ve loved. Whether I’ve lived my life from inside of love as much as possible. Whether I’ve been as decent a human being as I can manage to be. That’s what really matters.
Dave Hingsburger was right. When faced by your possible death, you don’t worry so much about what you’ve done, you worry far more about who you’ve been. Because you may not get a second chance — nobody knows what happens after you die, after all.
I do think there’s something after death but I don’t think it’s heaven or hell. Because I think I’ve interacted with animals just after their death (and I think I wasn’t imagining it because the people around me perceived the exact same things). But I am not sure you actually stick around as you for very long. I think it may be more like the spiritual version of what happens to your physical body. Everything that made you yourself, goes back into the rest of the world to become part of everything else. So in a way you’re still there, but you’re not you anymore — just like parts of your body turn into fuel to help other organisms live. I think if you try really hard it may be possible to resist that process and stay you a little while longer, but I don’t think that’s the best thing to do, it doesn’t lead anywhere good. You have to be able to trust that the best thing you could possibly do for yourself and the rest of the world is to dissipate and lose yourself.
And in another way you’re always there no matter what. Because if you look at things from outside of time, everything that has ever happened is still happening — at that point in time. Pardon my difficulty with verb tenses. And I think looking at things from inside of time is unavoidable to our minds to some extent, because we are part of a kind of matter that is bound to time. But that there is an outside of time, still.
I don’t expect anyone else to share these beliefs, but they are my beliefs.
I’ve already written out what I want to happen physically after I die, too. That part is already in my living will. Which is kind of weird. It’s a “living” will, but it’s got stuff about funeral arrangements. Anyway, I want most of my ashes scattered or buried as close to the Mother Tree as you can possibly get. The rest can be kept by Anne and Laura and possibly other loved ones, to use as they see fit — urns, necklaces, whatever strikes their fancy.
If it existed, I’d want to be composted the way the book _Stiff_ said someone in Sweden was working on, and then have that buried near the base of the Mother Tree or, failing that, in the surrounding forest in Redwood Terrace, California. But barring that it will have to be ashes.
I’d prefer burial of at least some of the ashes, to scattering, because I’d like them to go back to the soil in that particular redwood forest. Because I have a strong connection to that place, and the forest floor there has particular meaning to me. But that may not be possible, so scattering may have to do. And it has to at least be in Redwood Terrace. And Anne should pick the spot if the Mother Tree is impossible for some reason. (Shane knows where the Mother Tree is, and lives closest to it.)
As Laura put it when she heard my plans, “Oh, so you want to be a redwood tree when you grow up.” :-)
And honestly. Once I get over all the worry. I find the whole idea beautiful. The idea of my remains becoming part of the carbon cycle. The idea of my spirit, for lack of a better word, becoming part of the rest of the world in its own way too — if that’s what happens, but I am pretty sure it is. I think Rowling may have been more right than she realized, when she said the happiest people don’t become ghosts, because they’re more willing to allow their being to dissipate and move on. Yes I know she’s saying that about a fantasy world, but I suspect it’s true in the real world, if long term ghosts exist at all.
I have only perceived them immediately after their death. Not seen them visibly, but seen things vividly in my mind’s eye that I was not expecting, and felt them, while other people “saw” and felt something almost identical. I’m not capable of imagining things up that vividly, especially given that I am terrible at visualization. So I have to think it’s possible that we were seeing something genuine. But within a short time — hours or days — they dissipated.
What struck me every time was that it wasn’t scary. No. It was more than not scary. Fear was impossible. Literally not possible. And there was light everywhere. Not visibly, but in my head. Like the cleanest light possible. And I’d see in my head, the animal, only (sometimes) made out of light itself. In one case, the cat seemed to try to convey to me and another person present that she was okay, she really seemed to want us to know that she was okay. And neither of us were expecting it, I didn’t even believe in ghosts.
I’ve had a few instances like that, and it’s made me believe that ghosts are at least possible. Especially given that in most instances, someone else perceived what I perceived. It makes me think of Harry Potter again. Where Harry asked if something was happening in his head. And Dumbledore told him of course it was in his head, but why on earth did that mean it wasn’t real? It was like that. Me and another person (different people in each case) would perceive something, at the same time, in our heads. But since it was mutual, we had to conclude that it was at least possible that we were perceiving something real, that our minds were reacting to the presence of something or another.
From private conversations I’ve had with a huge number of people, it seems like experiences like that are extremely common. But there are many cultural taboos about it, so most of us don’t admit it in public. We are afraid of being considered crazy. In fact, it was experiences like this that made me wonder whether I really was psychotic, for awhile. But I’ve talked to a wide variety of people who are definitely not psychotic, and it seems to be incredibly common. Just also incredibly not talked about. I wouldn’t even be shocked if most people experience things like this. And in my experience, autistic people were far more likely to be sort of… unable to pretend to themselves that they were imagining things if they perceived anything like this. Whereas a lot of nonautistic people seemed better at shutting out their awareness of it.
But both autistic and nonautistic people experienced these things in such large numbers that it seems to be more common for people to experience things like this, than it is for people not to. So at minimum this is a common human perception. And at maximum it’s a real thing. I suspect that there is something real that we are perceiving. I suspect that because whenever I’ve actually been around someone else who perceived it, we perceived such similar things. Whether what we perceived was exactly what was happening, I don’t know, but I pretty firmly believe we were perceiving something.
I don’t really mind if there’s nothing after death, though. Because I’ve still had a life before death. And nothingness isn’t that scary to me. If there’s nothing, then there’s nothing. It’s weird to think about suddenly disappearing and never reappearing. When I’ve been out under anesthetic, that’s hard enough to fathom. It’s such a strange experience to not be there, so much weirder than sleep. Because at least with sleep you feel something. With general anesthesia there’s nothing, and no memory of anything, and it’s weird. Just like seizures are weird that way too. But with a death where there’s nothing afterwards, then there’s no waking up to further ponder the experience of nothingness. There’s just nothingness. And that’s not something I can imagine. I can believe it might be true, but I can’t imagine the experience itself.
Even in my own idea about what probably happens after death, though, you’re not around as you forever. You might stick around for minutes, hours, days, longer if you stretch it in unhealthy ways. But then you dissipate and you aren’t necessarily you anymore. So that’s still going into a state where you probably won’t be having any new experiences, after a certain point. Or if you are, you’d be so changed…
It’s such a strange thing to think about. The sheer nothingness of it. Not scary exactly, just so weird I can’t even imagine.
But I also think that my view of what happens may be incomplete. Because identity doesn’t work the way most of us think it does. Experience is a strange thing. Much stranger than most people are even aware of, much less willing to imagine. It may be that after I die, something of me will experience things. Just not as me. I don’t mean reincarnation. I mean something far stranger and harder to put into words. I don’t even think English has words. I think people put a lot of effort into seeing themselves as separated from the rest of the world in ways that aren’t true. And so, things not being as separate as they seem, who knows what identity and experience do after death. There’s a lot about the world that nobody talks about because there’s so much cultural baggage that people stack on top of it until they aren’t even able to try and look at what may be going on underneath. And what, if anything, happens after death may be one of those things — different cultures and religions and lack of religions have specific ideas, and what’s there may be different than all of them for all we know.
What I do know is that it’s important not to be scared. Because if I live my life afraid of death, then I’m also afraid to live. And if I’m sitting there scared all the time. Then if I do die. Then I’ll have wasted all my remaining time being afraid of everything, instead of experiencing life as fully as possible. Well the question isn’t whether I die, it’s when I die. And if that’s next week, or next half a century, this advice still applies. It’s just a little more urgent advice if death is near.
It seems important to experience everything. To actually be there, not halfway tuned out thinking about something else. To love. To do right by people, to the best of my ability. I have to remember what kind of person I want to be, or no matter when I die, I’ll regret that. And I have to avoid becoming complacent the way I see happening with people around me sometimes. Because they assume I’ll always get through these aspirations and infections. And I might. It might be something else that gets me in the end, a long time from now. But it could also be this time. Or the next time. Or the time after that. And it’s best not to forget that.
Damn how am I going to get antibiotics on a weekend. Sounds like I might have to eventually go to the ER or urgent care anyway. I will talk to Laura. She’ll know what to do. I hope. Maybe I can wait a day, but that sounds like a bad idea in a big way.
So now I’m going to hit the button and report to someone what is going on, so at least I’ll have that.
“I won’t let my body win.”
Forget where but someone said that about their chronic illness.
I can’t… I just can’t do that. Can’t think that way. I don’t know if I ever did. But I can’t anymore certainly.
I wish I knew how to explain. I keep coming up with a blank when I try to think of good words for this.
I can’t see myself as at war with my body.
My body is important.
My brain is not separate from my body. It’s a part of my body. It’s an organ like any other organ. My brain is not my identity.
My body is an amazing collection of cells each with their own kind of intelligence each working together with the others to make things work. Trying to cooperate. I am a collection of microbes that have figured out how to live together symbiotically. Microbes have awareness and intelligence of their own whether they are involved in my brain or not. A brain creates a specific kind of intelligence but it’s not the only kind. Every living thing has awareness of its surroundings, ways of making its way through the world. Not just living things with brains. Animals, including humans, are not just living things, but collections of tiny living things all living together. And this is amazing and wonderful and cool.
I feel a duty to the tiny living things that make up who I am, that don’t, alone, have a voice in most of what human beings have to say about ourselves, even though without them we wouldn’t exist.
I feel a duty to all the symbiotic organisms that live within me, making it possible to do things like digest food.
These things don’t lessen just because my body doesn’t always work the way I want it to work. To be at war with my body is to invite an early death. I might die early anyway. But I mean an earlier death.
I am amazed by my immune system. By the way all those little tiny cells know exactly what to do to fight things off. Even if, like much of my family, they occasionally attack the wrong parts of me, that doesn’t mean they’re useless or bad. I’m amazed that they get things right so much of the time.
Yes, lots of parts of my body don’t work well. They hurt. They go numb. They fire off when they shouldn’t and fail to fire off when they should. They deteriorate when they need to be working. They make me feel like throwing up most of the time. They don’t let me walk much or do a lot of things most people can do.
But for the most part I don’t hate my body for it.
My body will lose eventually. The day my body loses is the day I die. The day I die is the way my body, and possibly my soul, get absorbed into the rest of the world, to become part of everything else, fuel for other living things. And that is amazing and wonderful in its own way.
But I think it’s better to be alive. And letting my body win, temporarily, means staying alive. Human beings aren’t Vulcans, we don’t live in little receptacles where our minds remain forever. We live in bodies. And in general it’s best for us to live as long as we can. Best for ourselves, and best for others, because we are a social species that rely on each other for survival. Life is temporary enough that every moment is precious.
As a physically disabled and chronically ill person, I hear all the time, as Harriet McBryde Johnson has pointed out, people pressuring me to divorce myself from my body. People saying my life should be all mental not physical. Even people acting like mental isnt physical, like the brain isn’t part of the body.
Way too much experience with severe delirium has taught me that my mind is very dependent on my body. That if my body gets sick enough, my mind stops functioning too. The two are absolutely interconnected. The brain is one more body part and it can do bizarre things when other parts of the body start malfunctioning. I will never forget that terrible feeling where my mind feels as if it’s being ripped apart at the seams. Not even at the seams. The seams would be too tidy. Ripped apart in random places in terrible and painful ways. Thrown into fragmented hallucinatory worlds that make no sense yet consume everything in their path. Wondering every time I regain a little bit of lucidity, if I will die sometime in the more heavily delirious state when I’m too unaware to even comprehend death coming. If each lucid moment will be my last. I wouldn’t wish it on anyone.
That’s what happens when your body starts losing. For real.
I want my body to win for as long as it can. Eventually it will lose but for so many reasons I want to put that off. Because I love life. Because I feel it’s my duty to stay alive as long as I can. Because life is temporary and death is permanent and I want to get everything out of life that I can, before experiencing death. Because I feel like I owe it to all the microbes that make up who I am, that don’t always get a say in how things work because they aren’t in ultimate control over my body except in smaller ways. So many reasons to keep living. I don’t mind putting my life at risk to help others, but that’s different.
So I will le my body win. For as long as I possibly can. I can’t use “my body” as a shorthand for everything difficult about my physical existence, because it is and always will be so much more than that.
It’s weird how I set out to write these things thinking I can never put them into words. And then, even if I can’t put everything into words, suddenly words happen. Of course every time words don’t happen, you guys don’t see it. You only see when they do happen. That can create a lot of illusions. But nonetheless I often end up being able to write things even though before I put my hands to the keyboard, I was certain nothing of value would come out. And even though I’ve had to fight my way through typing gibberish or automatically back spacing every time my brain decides to check out on me. I still did it. And that’s sometning, whether it feels like it or not.
Anyway there’s a lot of things I have to fight against, even in order to just type this — as I said my brain likes to check out and make me type gibberish or hit backspace over and over. And I have to struggle against that in order to write sometning need. I am struggling against it as I type this.
But that is my body malfunctioning. And a malfunction isn’t the same thing as my body. My body is much more than that. My body is a beautiful and amazing place where microbes have figured out how to live together and work together to create something much more than the sum of its parts. And therefore my body is something I respect. I want my body to win because human bodies are amazing, whether they also happen to do things we hate. So I will let my body win, for as long as it can. As much as I joke about wanting a new body at times, this one is all I’ve got and it’s pretty cool regardless.