This is me when I'm not doing the stuff for my regular blog. That means not necessarily as careful, not necessarily as able to do things, lots of things could be different than usual. I don't do trigger warnings, and I have genuine well thought out reasons that aren't just some kind of callous BS.
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.
Anatomy of an aspiration.
I’m making this to take my mind off what just happened. If you judge me… just don’t. Most of the pictures were taken actually during this whole process, a couple were taken after to show what had happened before.
I went to sleep with the bipap on. My stomach filled up with fluid. Some of the fluid came up my esophagus. The bipap blew it down my lungs.
I woke up. I actually didn’t feel as if I’d been asleep at all, I felt as if I’d just been awake and then suddenly there was a sharp pain in my lungs. This has happened so many times before I didn’t even hesitate, I grabbed my backpack (with the feeding pump) and iPad and went into the bathroom.
I hung my backpack off one of the shoes in my shoe rack. That’s what I always do whenever I need to do anything in the bathroom.
I spent somewhere between 30 and 45 minutes sitting on the floor, coughing up bile. It tasted bitter and was yellowish. I’ve done it so often I know how not to throw up from the taste. I still taste it all the time and it’s worse whenever I cough
This is where I really got time to think. The past couple days I’ve been getting more and more stomach contents out of my g tube. I don’t know why. Recently I actually got so much out of my stomach in one night that I filled up my burp cup past the word BURP written on it. Which is more than I’ve ever gotten ever. I don’t know why I’m producing so much fluid in my stomach but it’s clearly becoming dangerous. I had fleetingly thought that it might cause aspiration, but I thought I was safe.
When this happens, my main emotion is not fear. It’s irritation. Irritation that this has happened again. Irritation that I might die from an infection before I really got to do a lot of the stuff I intended to do. This is definitely an improvement over the past few months before I got my tube, when I aspirated a couple times a week at least. But it’s still a problem. I have been wondering whether I will need to get something similar to a leg bag, only for my g tube, so that it can safely drain while I’m sleeping and the fluid will go into the bag instead of my lungs. This is now a much higher priority on my list. I would use suction from a syringe to pull it out, except that causes fluid to leak out through a seal in the tube near my skin. And that’s not fun.
As always, there’s the wondering whether this will be the last time. Because I’ve been lucky. The antibiotics have always worked, and I always get them in time. I do get really sick, but so far I’ve survived. And the wondering how severe this particular aspiration was.
For me, this aspiration was maybe moderate. That’s compared to my worst. My worst aspirations I wake up and I can’t breathe at all at first. This one, I woke up and I could breathe, but if I inhaled more than a certain amount I got a sharp pain and had to cough, and then stomach contents would come out. I had hoped maybe it was mild. Maybe it was like the last time where I felt it before the aspiration really started, and was able to get it away from my lungs in time. But no. This was real. I coughed up way too much stuff for it not to be. And while it’s better than severe, any amount of stomach contents in the lungs can be very dangerous and cause bacterial infections or pneumonitis.
I hope I don’t have to go to the hospital this time. I hope my lungs have had a couple months to heal, so it won’t be as bad. I hope a lot of things. But you never know.
The thing is, it all happens so fast. You aspirate. And then you try to cough it out, and if it’s really bad you call 911. And you get used to the routine, you know what to do. You know to call for prophylactic antibiotics the next morning. You know to look for a drop in oxygen levels, changes in phlegm color, and other signs of an infection. You know to do every single one of your nebulizer treatments.
But that doesn’t stop the speed of it all. If you get sick enough, you will be too sick to do all the things you need to do to prepare for if it’s fatal. I’ve gotten so sick from aspiration that I couldn’t even type, much less put my affairs in order. And then you get too sick to care whether everything’s in order. I hope all that doesn’t happen this time. You can often tell how sick you’ll get by how fast the infection starts and what it does. I mean hopefully there will be no infection, or minimal infection, but still.
I want to know why my stomach is making ridiculous amounts of acid. I want to know now. Damn it.
Anyway, I stopped coughing stuff up once I could breathe all the way with neither pain nor urge to cough. I mean I still keep coughing after that, but that’s when I get off the floor and start doing other stuff.
This is the wastebasket after I’m done. I’ve gone through about one and a half rolls of toilet paper. By the time everything is over, I’ll have gone through two.
I looked at the g tube part of my GJ tube. That’s the half that isn’t connected to a feeding right now. You can see the green fluid in it. That means I should try burping it — letting the air and fluid out into a cup.
I put the g tube into the cup, took the cap off, and unclamped it. There was so much in there that it spurted out at high speed, both air and fluid. Lots of fluid.
Getting the stuff out of a g tube can be a bit of an art form. I say there for quite a long time, moving the tube in and out of my gut slightly, moving my body around to move the fluid in my stomach around, swallowing to make my stomach move more, pressing on my stomach, things like that. And more came out of there than has almost ever come out at once. Last night is the only time I’ve gotten more than this.
This is the amount of fluid I got out of my stomach, in the burp cup. After I took this picture, I spent awhile dumping the cup into the toilet and washing it out.
And now I am back in bed. I’m writing this. And I’m wondering about everything. There’s this sense of unreality sometimes, like this couldn’t possibly be that dangerous, it’s happened so many times. Except it’s more like I’ve dodged the bullet a ton of times. I’m not trying to be dramatic or anything, it’s just it’s actually like this. If you get stomach acid and bile in your lungs, you get bacteria in your lungs, you can get infected, you can die of pneumonia. I’ve been hospitalized and sent to the emergency room many times before over this. It’s a huge huge deal, no matter how many times it happens.
I think the people around me get complacent. They think if I’ve survived this many times I’ll survive every time. But it doesn’t work like that. I’ve known for awhile that this could happen at any time, any night, any time I use the bipap, even sometimes when I don’t. I’ve know that any time it happens, I’m at risk of dying. This is what I meant when I said I could die at any time, that I’m not terminally ill but I am precariously ill. My gastroparesis prevents my stomach from emptying fluids as quickly as most people, so they build up and this happens.
The GJ tube prevents it happening as often, but it doesn’t prevent it from happening, especially with as much stomach acid as I’ve had the past couple days. Or whatever that stuff is. It comes out almost a deep orange color sometimes. Supposedly that’s okay. I don’t know. I worry about all kinds of possibilities that probably aren’t happening. But anyway. The GJ tube doesn’t prevent it entirely. It makes it so I’m not putting more into my stomach, which helps. It makes it so I can drain my stomach contents, which helps. But it is hard to drain stomach contents in your sleep. But now I’m determined to get a bag for it, so I can drain it more easily. Tonight, I may suck it up and use suction (pun not intended), tying something around the tube to absorb the leakage. Because I really badly need to be able to get my stomach empty.
But this time, to take my mind off things, I want to document what exactly happens. I want you to know what it’s like. You can’t know all the thoughts that race through my head, though, the ones where I hope I’ve done enough, been enough, in case my luck runs out. This happens often enough I can’t take being alive for granted. I just can’t.
Damn it I wish I could meet Anne. Not intended as pressure. Just one of those thoughts that goes through my head when this happens. Now my lungs hurt. I didn’t notice that before. They sort of burn, especially when I try to breathe. I hate aspirating. And I wish my stomach would stop trying to assassinate me.
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.
Some background, okay?
I would absolutely love it if I were ever in a position where my main worry could be about when I get to die.
Unfortunately I’m in a position where my main worry is and has to be whether I get to live.
I don’t get to tell a doctor ever, ever where I draw the line between when I want to live and when I want to die. I don’t even get to tell a doctor that I have a line.
Because that’s a luxury. And I don’t have it. Because doctors already want me dead. As in already. Not theoretical. Not an existential question about a possible future. Right now. Already been there done that. And if I gave them an inch… well they’re already trying to take miles of my life from me. They would find a loophole and use it.
It must be nice to only have to worry about when you want to die. Don’t ever forget that’s a luxury not available to any sufficiently disabled person who wants to survive the medical system intact.
It’s kind of amusing, I guess, to lightly mock my views on consciousness and spirituality rather than think about my ethical views on any level. I don’t expect anyone to agree with me about microbial intelligence or my spiritual views. But those views aren’t the actual underpinnings of my views on public policy. So if you’re going to pretend like those are my main reasons for believing as I do, think again. Those are views I have, so I put them out there, but don’t ever mistake them for my main reasons for being against euthanasia legislation. I understand though that it’s much easier to blame my ~weird kooky backwards viewpoints~ than to look at the major drift of what I’m saying. Which is that disabled people are already dying, we don’t need to make it easier.
Don’t pretend that it’s just people who are ~brain dead~ who are dying, either. It’s people just like me. Because just two months ago a hospital tried to put a lot of effort into killing me.
It must also be really nice to be able to just see that I’m still here and believe that and figure doctors must believe that too. Unfortunately it’s not that simple. I’m not always able to communicate, especially when very sick. I already have the physical appearance some people associate with mental vacantness. I’ve already had people declare to my face that I don’t exist. In hospitals. While my life was in danger.
And even at my best. Even when they know and accept all my accomplishments and my intellect. They still don’t see me as all there. I will never be fully there to them. Because a severely disabled person is never fully there never a full person always sort of a partial unperson at best. And because I have real cognitive limitations they pick up on. And because I look like their stereotype of a so called r-word (which isn’t a real thing, it’s a view of an entire large group of people as unpersons), and so they also assume cognitive limitations that aren’t there. Even at my best. And they judge me accordingly.
It would be so nice to be able to snap my fingers and make it stop but oh I forgot I can’t. Nothing I do ever convinces them that I’m fully real the way they are fully real. To them there’s always something missing from my personhood.
And I’ve spent a lot of time in hospitals in various states of consciousness and unconsciousness, and in between. It’s totally natural for me to wonder about the nature of consciousness, especially around people who judge me to not be there. It’s totally natural for me to look into the actual neuroscience behind thinking. These aren’t abstract existential questions for me, they’re things that have a serious bearing on everything up to and including whether I survive. If you think it’s obvious that I am in here, please convince the doctors next time I am hospitalized and unable to communicate adequately. It would save my advocates a lot of effort. Last time I was in there, despite them knowing I was aware, I was still considered only really a partial person, not a real person, and the fight for my life got so stressful that my DPA went home one day and threw up all her food. It would be wonderful if you jumped in and sorted it all out for us and saved us the time and stress of fighting to keep me alive when nobody wants me alive or considers me fully real.
But I guess I’m not supposed to speculate about things, to wonder, to put forth partially formed opinions, to suggest things that are fairly nonstandard beliefs, to ask what consciousness is and how we measure it, to discuss what happens with real and presumed cognitively disabled people. (And I’m both. Real and presumed.) Because those ideas, formed from my blood and bones and direct experiences of the worst of ableism, might get in the way of people wanting to die.
Unfortunately I consider disabled people’s wanting to live more important than anyone’s desire to die. Yeah it shouldn’t be an either or thing. But in this world it is. And I have to choose life or I’d be dead by now. The existing policies that make it possible for people to die when they want (which aren’t good enough apparently because people want to be guaranteed the perfect death), are policies that they already twist to kill people who don’t have any desire to die. And so it really does come down to, greater ability to die harms the ability of other people to live. And that’s where I draw the line. And why I draw the line. But that’s harder to argue against than making snarky comments about my views on how our cells interact and communicate and like to be alive.
My personal spiritual beliefs and beliefs about cells and stuff? That’s personal. That’s about me. I don’t expect anyone else to believe me. And it’s not the main reason I’m against euthanasia legislation. To me it’s far more horrible that disabled people who want to live are dying every day, many who don’t even know that what they’re being pressured into is death. That’s far more horrible than having to die later or in more pain than you want.
And having just been through an awful fight for my life against people who did believe my quality of life is too low and all that other shit. I can’t get too into people’s pain about a possible future in which they live longer than they want to. I’ll be damned lucky if I live longer than I want to, especially with the increasing pressure to die the more disabled I become. To be able to worry about living too long is a luxury, not something that should be writ into law any further than it is. Because such laws are carried out on the backs of disabled people who die because of them.
Already happening. Already known. Don’t need it worse. Sorry. This isn’t the ideal world you want it to be. I have to live in it. I’ll talk about any aspect of this as much as I damn well want to and I don’t care if it makes it harder for you to die. Because the goal is making it easier for a lot of the rest of us to live. And that’s just plain more important.
I only wish I inhabited the world you seem to inhabit.
Don’t think that we don’t think.
That’s the words on a poster I keep in my home.
I can’t stand the way people use presumed cognitive ability as a measure of who gets to live and who gets to die. Or who ought to live and who ought to die. Or who ought to have any choice about whether they live of die. I can’t stand it at all.
I came face to face with it in the hospital when those doctors were pressuring me to die. They see a cognitive impairment and they see someone whose life must not be worth it.
And I can’t stand how they see me. How they see other people.
They see our lives as nothing but limitation.
I just read a book in which the author describes trying to persuade people to let their relative die. They have a window of opportunity, he says. Because he will be a quad, and he will never be independent again. And he will have a feeding tube and a trach. And that’s the end of his life. So if they just ended his life before he wakes up in the ICU, then he won’t have to live out that life of limitation and suffering. He puts pressure on the family of the man, unconscious, with a spinal cord injury.
Supposedly, The man will always live in a nursing home. Because nursing homes are supposedly caused by us being disabled, rather than because of policies towards disabled people that say we belong in cages, cages full of people like us, cages full of people who oppress us and make us miserable daily, cages where we presumably have nothing to live for, because who would want to live in a cage?
Never mind that people built the cages, and people can unbuild them. Never mind that putting disabled people in cages is a practice that isn’t just the natural outcome of being disabled. Never mind that it’s a human rights violation of monumental proportions, happening in your backyard, around the world, and you do nothing, and you question nothing.
My neighbor got MS. A severe, fast acting kind. One day she could walk and talk, the next she couldn’t walk and had trouble talking. One day she was a person and a mother, the next day she was an unperson. One day she had a life, the next day she didn’t. One day she lived next door to us, the next day she lived in a nursing home. She’s lived in a nursing home ever since I was a little kid. Last I heard, she wanted to die. Everyone thinks that everything I just said was totally natural and the only possible progression her life could take.
I can’t stand it. I can’t stand it. I can’t stand it. I can’t stand it so badly that I can barely stand to talk about it. Barely stand to stand up to the people who defend these atrocities and think they’re right and normal and good and proper.
I read a book by an author I love, an author whose books often suggest that objects and microbes are alive. It contained a speech by a character, that seemed to be considered okay. Not just that character’s opinion, but something condoned by the author. In fact, the entire basis of the horror of the book was based in the horror that character described. The concept of people who were human in shape but had no minds.
The character described in her medical training, going to an institution for developmentally disabled kids. This is in a future that’s supposed to be nearly utopian, and they’re still putting DD kids in institutions. So she went to this place, and saw kids that she saw as having no minds, doing things that only people with no minds would do. Sitting and staring. Or rocking and doing other incomprehensible movements that only people with no minds could do. The character broke down in a way she’d never broke down in her life. She was horrified. She cried. She couldn’t function. Because the entire idea of these kids with no minds was unbearable. It was traumatic to her, to be around these kids with no minds.
Triggered doesn’t begin to describe my reaction to that scene. I nearly wrote the author on the spot.
Only what would I say that could make any difference?
No matter what I said, the fact that I could say anything to her would mark me out as different than those children with no minds that her character saw.
Except I am not different, in some important ways.
Because there’s no such thing as kids with no minds. And using the idea, which is so common, as a basis for the entire reason the book was supposed to be scary. Because it was about a creature that ate minds but left people intact. Is so completely horrible. Can’t even describe how horrible.
And my experiences. I’ve had people look into my eyes and say they are empty, that there is nobody there. I’ve had people look at me and jerk away in horror at the idea that there’s nobody there. I’ve had people say in front of me that I had the cognitive functioning of an infant. All because I sometimes look and act and move in ways people associate with mindlessness.
The entire idea of mindlessness has to die. It has to.
Even people with less brain function than usual, have cell function. And cells think. And cells react to each other and act in concert with each other and do other things that show they have minds of their own, even if they’re not brain minds. And that’s true of everyone. We are all made up of little things that think and react, and not just in our brains.
But the kids in the book didn’t even have minimal brain function. They were just developmentally disabled. Many of them probably had severe movement disorders associated with autism or cerebral palsy or intellectual disability. Many of them were probably thinking in a lot of detail with a lot of complexity.
It is so strange to be considering advanced concepts in disability theory while a pair of cops are staring at you asking if you’re even alive, and if you’re alive, if anyone is home inside you. And being unable to do a damn thing about any of it. It’s so strange it would have made me laugh if I could laugh. Or cry if I could cry. I don’t know which. To be thinking more intellectual thoughts, in a way, than they are and be told you don’t exist. I have been in that situation more times than I want to count.
There’s two big problems.
One is the idea that certain people don’t think just because they are or appear to be severely cognitively disabled.
The other is the idea that the amount of standard type thinking you do determines how good you are, how real you are, how worthy of living you are.
Each of those ideas on its own is toxic. Combined, they are deadly.
But people don’t even need to suggest our minds aren’t there, to think we aren’t worth living. That helps. Because people use cognition to determine how real a person is to them. And only certain types of cognition. And only presumed cognition at that. But you don’t even need that.
Because this is a world where ICU nurses can suggest someone should die, because he will wake up a quad and his life as he knows it will be over. He will never be independent again. We have this wonderful window of opportunity in which we can kill him without being punished for it. Think about it. It’s what he would have wanted.
Please excuse me while I go vomit until there’s nothing left in my stomach. Actually never mind, there’s nothing in my stomach in the first place. And I can drain the stomach fluids out through the feeding tube that makes me an unperson in the eyes of the medical establishment.
Because once you have a feeding tube, your life is over.
So many lines they decide.
When you can’t walk. When you can’t talk. When you can’t eat. When you can’t breathe. When you can’t dress yourself. When you can’t feed yourself. They decide all of these is a line where you go from human to nonhuman, person to unperson, life worthy of life to life unworthy of life.
And then there are a lot of lines that are cognitive, too. They talk about persistent vegetative states. They actually use the word vegetative as part of the diagnosis. And they think there’s no prejudice there. They think a person in such a state can’t interact with the world, because they think that all thinking that is important, is carried out in certain parts of the brain, and they think those parts of the brain aren’t functioning.
Except then they look on brain scans and find that a lot of such people have something more akin to locked in syndrome, rather than an inability to think.
But then they decide that their life isn’t worth living in another different way. They decide that people in such a state would never want to be alive. They decide that because they assume that living is about being able to move and talk and do things.
And that’s not what living is about at all. Living is about life. And life usually wants to continue. And many of the supposedly unbearable circumstances of disabled people’s lives are not inevitable. They’re caused by how people react to us. What people do to us. And they do all these horrible things to us and then say those horrible things are a natural part of being who we are. When it’s them doing them to us. It’s awful. And they can’t see their own deadly biases.
So if you have a diagnosis of PVS, you’re screwed. Because either your life isn’t worth living because you as they know you isn’t actually there. Or else your life isn’t worth living because you are there and your life must be unbearable. Either way, they find it easy to kill those of us who reach that state. They even say it’s not a disability, therefore what they’re doing isn’t ableism.
People have all these ideas that they get out of nowhere and they call them real because doctors pull them out of their asses. Another such idea is the idea of a coma.
Supposedly, people in comas aren’t conscious at all. And some people in comas aren’t conscious. But other people in comas are conscious. The entire idea of what a coma is, is based on whether the person outwardly responds to stimuli. That’s how they measure it. Contrary to popular belief, coma is not a measure of how conscious you are.
I know people who have been conscious during comas. They remember things that happened. They heard everything going on around them. Many times, they even remember hearing people talking about killing them.
Then there’s “When I Woke Up” by Rus Cooper-Dowda:
Here’s an excerpt:
“In February of 1985, I woke up in a hospital bed in Boston, MA. I couldn’t see very well and I couldn’t move much — but boy could I ever hear!
I heard a terrifying discussion then that I will never, ever forget.
Around the end of my bed were a “school” of doctors in their white coats, planning when to disconnect my ventilator and feeding tube. I immediately started screaming, “I’m here!!” No one but me heard me.
They did notice my sudden agitation. They heavily sedated me. For a time, everytime I woke up I would make as much noise and move as a much as I could to show them I was “in there.”
And they would, in response, heavily sedate me…
I then started spelling the same word in the air, “Don’t! Don’t! Don’t!….”
The doctors decided that the letters I was spelling in the air were repetitive seizure activity and just happened to occur most often when they were in my room discussing killing me…I even took to writing them backwards to make it easy for them to read…
And their response was to sedate me even more….
But, the nursing staff began to believe I was really and truly with them.
One, in particular, starting bringing in a clip board and a broken pen when she talked to me. She would put ink on my fingers, the clip board under my right hand and then ask me yes and no questions in the beginning.
With her I secretly progressed to answering in sentence fragments. However, by doctor’s orders she was not allowed to document in my file what she was doing and that I was giving meaningful responses.
But…she did save my inky answer sheets and recorded the questions she asked. She got into a lot of trouble for that.
Yet, it earned me a final conference where the doctors had to prove to the nursing staff for political reasons that all my communication was just agitation and seizures.
At that meeting, my then husband, who was a doctor siding with the other doctors who wanted to let me die, held that clipboard which was my lifeline up in the air in front of me. He was not going to make it easy.
The purpose was to prove that the nurses were basically hallucinating and that I was really and truly brain-dead.
To prove I could not communicate, he then put ink on my fingers and asked while laughing, “There isn’t anything you want to tell us, is there?”
In response I spelled out, “D-I-V-O-R-C-E Y-O-U!” The laughter got very nervous then. The doctors called for medication because I was obviously having a seizure.”
So she woke up unable to see or talk, with great difficulty moving, and everyone assumed she wasn’t there. I thought of her when I read in that book about ICU patients who periodically went into frenzies of movement that were explained as happening because they didn’t really understand their situation. And were sedated into unconsciousness every time it happened. And this was standard operating procedure. It couldn’t be that they were trying to indicate that they were in there and had a mind and understood all too well what was happening.
I’ve been severely delirious. Delirium is on a continuum with coma. And it’s a weird state. Most people assume it’s a state where you’re not really conscious of your surroundings, and you may do things but you don’t really understand what you’re doing. In reality, it’s a lot more nuanced than that.
One of the key features of delirium is actually the way you fade in and out, from more severe to less severe. You may be unconscious for part of the time you are delirious, but conscious in others. And when you are conscious, your consciousness may be highly altered in ways that make hallucinogens look like a walk in the part. You may hallucinate. You think differently. In the least severe forms of delirium, you are fairly aware of things, but you may be a little disoriented and have some cognitive problems.
I’ve had pretty close to every severity of delirium, including some that resembled coma a little too close for comfort. And I’ve had both excited delirium and quiet delirium. Excited delirium is where you thrash around and try to pull out your catheter and do other really active things. Quiet delirium is when you just lay there and slip in and out of consciousness. Most attention gets paid to excited delirium, but it’s quiet delirium that is more severe and linked to worse healthcare outcomes including death. I’ve done my homework. Quiet delirium is under diagnosed because hospitals like their patients to just lie there quietly, so we do not attract attention the way excited delirium does, and may not pay much attention to whether the patient is actually aware of their surroundings or not. One time this past hospitalization when I was sliding into a mild quiet delirium and my DPA was alarmed by it and trying to get me to come out of it (it’s possible to affect delirium severity by orienting people to their surroundings, and it improves healthcare outcomes to do so). A nurse actually told her, “I know delirium. That’s not delirium, she’s asleep.” I was moving my hand and had my eyes wide open. She didn’t even notice. That is how quiet delirium gets overlooked.
I can’t describe what severe delirium is like. The parts you are conscious for. It’s not the hallucinations that make it weird. It’s the way your mind seems to be fractured into pieces in a way that doesn’t happen outside delirium. It isn’t like being asleep, being awake, or being on drugs (except maybe deliriants, hence the name). It’s kind of a half awareness. Large parts of your mind aren’t functioning, and the parts that are functioning, are functioning in strange ways. It’s not even like an autistic shutdown, even the kinds where you don’t feel like you have any thoughts or awareness of your surroundings. It’s just different. Different from everything else you could know.
But you’re still there. You’re still a person. You’re still real. You can still suffer and you can still experience joy. I’ve experienced beautiful things while delirious and also terrible things. Usually if I’m delirious I’m in severe pain, like a nine. I don’t know where the pain comes from. But it’s there, always, and it makes things miserable. Maybe your brain generates pain when your higher order functions go wonky.
I’ve also experienced a lot of strange partially odd cognitive states during autistic shutdown, but it’s different from delirium. I’ve had thoughts disappear and the world disappear until all I can remember of those periods is that time must have passed because I remember something. But I couldn’t tell you what I remember. I often lose the ability to understand language, or to use conceptual thought. The world becomes sensory and motor rather than intellectual. Sometimes I lose all ability to move volitionally. That’s usually when people start saying there’s nobody there. But the ironic thing is, that when they think I am not there is when I am the most capable of intellectual thoughts. Because being unable to move frees my brain up for thinking. If you want to see me at a time when I can’t do intellectual thoughts very well, it’s far more likely to be a time when I’m moving but immersed in the sensory side of the world. At none of these times do I stop being a person who ought to have the same right to be alive as any other person.
Some autistic people, like me, live in a constant state of flux between all these different states. Other autistic people’s brains make a sort of bargain. Where they get to keep abilities more permanently, but at the expense of other abilities. I frequently meet autistic people with far more intellectual skills than I have, who find it difficult to move voluntarily, at all, ever, and can only type with the greatest of difficulty. That’s because their brains have sacrificed movement skills for intellectual skills. That’s a very common pattern, yet they are often the autistic people believed by others to have the fewest intellectual skills of any of us. That again shows that people equate intellect with movement.
Often I have to do something similar but more temporary. I write a lot of my writing when I’m unable to move. And I’m unable to write easily when I can move. So I do a lot of my writing frozen. Or in the past, letting my body run around the house on autopilot with no conscious control. It doesn’t do that much anymore because of neuromuscular problems. But either way. My brain sets up all the ideas and concepts at the times when I look the least intellectually capable. And then, at the times when I’m able to type, I wait for an opportunity for all those stored words and concepts to come tumbling out my fingers, but am often unable, at the time, to do any complex thinking. Because I’m using all my cognitive abilities on certain aspects of movement and perception.
A lot of what autism is, is trade offs between one ability and another, because of a brain flooded with information and incapable of handling all of it a once. So we handle a tiny bit and make trade offs between one skill and another. Some of us make permanent trade offs, some of us are constantly switching, and some of us go in between somewhere. Some of us also go from one set of long term tradeoffs to a different set — depending on what set is which and which skills people value, this will get seen as either progress or regression, regardless of what is actually happening. My brain once made some ultimately wonderful changes in my life, setting firm limits about what tradeoffs it was willing to accept. But because speech was one of the skills on the chopping block, other people choose to call it a regression. Because speech is that important to them, even though to me it’s a peripheral skill I barely notice in the scheme of things other than for its capacity to cause pain and wreak havoc on my other abilities.
Dementia is another condition that people love to use for the way people see you as nobody there. If I survive to old age I have a pretty high risk of dementia, because of the amount of time I’ve bashed my head into things. So I think about it a lot. The prospect of dementia itself doesn’t scare me that much. In fact, to me it would signal that I survived long enough to get it, which would amaze me if it happened given some of my other health problems. But what scares me is how other people would react to dementia.
I’ve spent a lot of time around people with various kinds of dementia. I can tell they have a lot of cognitive problems. But I can also often see that they understand more than people give them credit for. As my particular sort of autistic person, whatever that is, I’m very attuned to subtle movements that indicate reactions to one’s environment. And I see those movements all the time in people with dementia. Movements that show they are processing information about their environments. Movements that show they are thinking. Sometimes I can see the gears turning in their heads as they think about things and try to come up with responses.
But there’s that ridiculous thing about speech and movement again. Other people are not attuned to those little movements that give off information about what you’re seeing and thinking. They’re only attuned to things like whether the person can talk, and how fast they react. And how fast they can talk. Many times I’ve seen people with dementia left behind in conversations. They want to say things. They are trying to say things. But the thoughts are moving to words too slowly. By the time they come up with the words, everyone has moved on, and their out of place words aren’t even seen as having to do with the prior conversation. They’re used to prove the person is disoriented even if they’re not. I was not surprised when they did studies and found people with dementia who can’t talk at all have their cognitive abilities underestimated constantly. Because people use speech and a limited set of movements as proof of whether someone is thinking or not.
It’s funny how doctors and nurses usually seem to overestimate their ability to detect consciousness, and lack of it, in their patients. Just as their ability to detect our quality of life is severely limited, so is their ability to detect consciousness.
If you want real information about how hard it is to decide whether someone’s conscious or not, talk to a good anesthesiologist. It’s their job to mess with consciousness so that people won’t suffer during surgeries and invasive procedures. They’re very good at it. But even the best ones can’t guarantee that someone won’t be conscious. In fact the best ones will tell you they can’t ever guarantee what gou will and will not feel. Consciousness is a slippery thing. We can’t even define it, much less measure it, much less use it to determine who is really human and who isn’t.
Yet to many people, consciousness is something they think they can see. And they think that so intensely, that they refuse to consider how unaware they really are. I have had people decide that I had no awareness or understanding of the world based on nothing but photographs. I have also had people decide that I had awareness and understanding of the world and tons of abilities I might not have had at that moment, also based on photographs. I’ve had to prove that I can write, that I can understand things, that I am a real person, over and over again, based on people’s faulty understandings of me. And yet, there’s still the ones who say “She has the cognitive functioning of an infant,” in front of me. And others who say I’m not delirious when I’m barely aware of my surroundings at all. It goes both ways because people overestimate their ability to judge what consciousness is and who has it. Something even philosophers and anesthesiologists, who make their work in that area, can’t agree on.
One reason I can’t stand the (extremely white middle class male able bodied etc.) skeptic community, is because they make these judgements about disabled people all the time. They say it’s impossible that people judged to have a profound intellectual disability could possibly communicate, entirely based on their judgement of what a profound intellectual disability means, and how you measure it, and what such a person could do. They don’t even think about their biases when it comes to disability of any kind pretty much ever, and they push my buttons a lot. They are sure confident about consciousness in a way nobody who studies it actually is. And they always judge in the direction of people lacking consciousness.
The other odd thing about consciousness is that not all thinking is conscious. I’m not talking about a Freudian idea of what is subconscious. I am talking about how the brain works. A lot of thinking and learning takes place in more parts of the brain than people know. And a lot of thinking and learning takes place on levels that we aren’t aware of. So it’s possible to have someone where the ability to be aware of things in the way we call cosnciousness, is impaired or absent, yet they are still doing things and responding to their surroundings.
I experienced that in delirium once. I slid from not conscious, to sort of conscious. And I felt this weird sensation but couldn’t place it or even consider placing it. I woke up all the way and my arm was trying to pull out my Foley catheter. I was horrified.
But in my view, the person I was when I was pulling on the catheter, before I woke up, that was still me. That was still a person. Just as I was still me before I woke up… I have no idea what happened previously. But I woke up to a group of men trying to pry my arms and legs off the rail of my hospital bed. I had a death grip on the rail and was having none of it. I still don’t know what happened to get me to that state. But I don’t think I’d have been any less real, any less me, if I’d stayed less conscious. And people forget that, they think their conscious thoughts are all they are. But thoughts are built on a huge foundation of thinking and learning that is purely instinctive and either not conscious of less conscious.
But consciousness is such a strange thing. I think part of me was still conscious during those times, just not the kind of conscious where I can remember. I think every part of my body has its own sort of consciousness. And not in some sort of fluffy metaphysical way. But rather that cells think and groups of cells work together and other things like that. So it’s not all in the brain and it’s not all in one part of the brain. I came up with this on my own, but I found out it’s considered one valid philosophical theory. I’m not big on theories though, or long names with ism at the end. It’s just now I experience things. I am more than my forebrain and more than my brain and the part of me that thinks with my brain is not the only part of me that wants to be alive, strives to be alive, in its own way.
A lot of medical professionals find all these ideas grotesque. They find the entire idea of disability grotesque, and cognitive disability perhaps the most grotesque of all. When I say cognitive disability, I mean all cognitive disabilities not a substitute for intellectual disability. It also means autism, learning disabilities (both UK and USA), dementia, delirium, brain injury, etc. Anything affecting thought.
I think it might especially bother doctors, who often prize their intellectual skills, that there exist people who have trouble in all those areas and are still alive.
But it’s not just cognitive disabilities. To many of them, all out lives are grotesque. Not just the most extreme cases but most of us at all. Many people even think that it’s bad that medical science has advanced enough to keep lots of people alive who would have died in the past. Even though that includes themselves as often as not, they don’t think about that. They only think it about those of us who are disabled in some way. Especially those of us who are “kept alive” by some “artificial” means: Tube feeding, respirators, dialysis. People think machines are grotesque, that we are grotesque, that science has gone too far and invaded us and made us something less than human.
Disabled people are usually grateful to be alive. We vary on our opinions of various machines, but we generally are glad to have the chance to exist regardless of our other capabilities. But every step of the way we are pressured to accept death instead. Told we are selfish. That we are disgusting. People tell us. They tell our families. Our lives will never be the same. We should die. We should die. We should die.
They repeat it like that. And what people hear over and over, we often come to believe. It can be hard to resist such pressure. Especially if we are already sick or disoriented.
This is in a world where, in most cases, it’s not legal to just up and kill us in most circumstances. Yet it happens all the time, by pressuring us not to accept medical treatment necessary to save our lives. We are pressured to be DNR, or DNI. We are pressured to refuse or withdraw treatment. And it’s no accident that the slick ads for euthanasia everywhere in my state are paid for by insurance companies.
There is a doctor who thinks he’s doing the world a favor. He makes videos of people with severe dementia and shows them to people with mild dementia and their families. He uses those videos to pressure them into signing DNR orders. By scaring them into believing they will turn into empty husks with no person inside. Because that’s what our society believes when they see the movement patterns of a person with severe dementia. He also does videos of people with feeding tubes to try to get people not to accept feeding tubes. And I think he also does videos of people doing codes, to get people to sign DNR orders. He’s trying to get people to avoid treatment. He believes he is doing the world a favor. Really does. It’s chilling. Better dead than severe cognitive disability. He thinks that just because he doesn’t narrate his videos, that they’re impartial, that he’s not pressuring people into a decision. He’s wrong. You can narrate a video without saying a damn word.
When I get my computer battery working again, I am going to make a video about how wonderful feeding tubes are. The world needs that. My feeding tube is my life line. You can’t put a price on life.
What terrifies me is that I’m in such a minority. That most people don’t see the problem with any of this. That they take for granted what they think they know about consciousness and cognition. That they even think physical disability is a life of such horrible suffering that people with it would be better off dead.
Disabled people tend to be just as happy — or unhappy — as our nondisabled counterparts. But when we are unhappy everyone blames our disability. Sometimes we ourselves blame it. When really we might just have depression. Of we might have had a huge loss in our life. One woman applied for assisted suicide right after she lost her husband, I think there was a death in the family, she was grieving, and suddenly, after a lifetime of being okay with life, she wanted to die. Instead of accepting that she was in a state of grief and possible mental illness, people championed her right to have help killing herself. She didn’t have a terminal illness. She just became suicidal. In a way nondisabled people become suicidal every single damn day. And yet because she was disabled, instead of helping her live, people wanted to help her die. That’s how messed up things are. Many times disabled people asking to die, cite things like living in crappy nursing homes that could drive anyone, disabled or not, to suicide. Yet our oppression is seen as inevitable. Our depression and suicidal thoughts are seen as coming from being disabled, as natural if you’re disabled, as anyone who was disabled would think that way. Rather than as depression, as PTSD, as grief, as any of the other things that drive ordinary people to suicide.
And every time a disabled person blames their disability for their suicidal thoughts, nondisabled people pick up the idea that suicide is the natural response to disability. Often nondisabled people who themselves are terrified out of their mind at the idea of becoming disabled. But actually if you take into account an adjustment period, disabled people tend to be as happy or unhappy as nondisabled people in the same situation. Because happiness doesn’t work the way people think it does. Sometimes our quality of life gets rated lower. But you usually find that such tests of quality of life are usually surveys where they score you as having automatically lower quality of life based on what you can and cannot do with your body. Meaning it becomes circular reasoning. You have lower quality of life because you flunk a test of quality of life, that assumes that people like you have lower quality of life. It’s ridiculous but practically nobody questions it.
And practically nobody questions any of this stuff. I hate hearing about it because I know it’s a threat to my life and the lives of pretty much everyone I love. I hate hearing about it because people don’t question their own assumptions about disability, especially cognitive disability. I hate hearing about it because people get all excited about giving us the freedom to die when we don’t even have the freedom to live. When they are already killing us in so many ways, when no safeguard is good enough, and they want to make it easier.
And it’s not that I don’t understand why a person truly at the end of their life wouldn’t want to be able to die easier. In a lot of places this is possible already, but people want to make it even easier. But that means people are pressured to die faster so their children can collect the inheritance. And all sorts of other abuses. No safeguard can stop that. And it also means that disabled people can die easier, even if we aren’t considered terminal. Because it’s easy to nudge disabled people into that territory. Non terminal disabled people have always been part of the ones covered by the euthanasia movement no matter how the laws are framed. And the insurance companies laugh as people pass these laws and call themselves progressive.
Recently I went through hell trying to get a feeding tube. I would have died without it. People knew I’d die without it. And they did everything in their power to convince me to die. I had pneumonia already. I’d had it five times in three months. I was getting weaker. Without the tube, I would have continued losing weight from not being able to eat, continued getting pneumonia from stuff in my stomach coming up into my lungs. And I would have died one way or the other. It may have happened by now. I was getting worse and worse.
I’m pretty sure if I’d gotten pneumonia bad enough, they could have declared I only had so much time to live. And then it would have been a matter of pressuring me to accept death even faster. And faster. And with all the pressure I might have caved. Especially while severely ill, especially if delirious. And then what then? That’s how easy it is to kill off a disabled person already. We don’t need it easier. We don’t live in a perfect world where these so called freedoms don’t come with a horrible price for most disabled people. And I won’t ever agree with a law that allows people these so called freedoms when people don’t have the freedom to live as we would want. Such bills dovetail wonderfully with the austerity measures happening in a lot of countries right now. The oppression of disabled people is rising and so is out rate of suicide attempts. We don’t need it easier to die. It’s already too easy. It’s so hard to stay alive.
But the part I just can’t stand. I can’t stand it. Can’t stand it.
Is the part where I suddenly look at myself and see how other people see me and it’s terrible and frightening.
They see me as a list of my impairments in the most pity invoking language and idea possible. Bedridden. Wheelchair bound. Tube fed. Suffering from endless pain that has never gone away a day in my life. Nonverbal. Cognitively disabled. Constantly nauseated. Constantly ill. Progressive diseases. Motor impairments. Neuromuscular conditions. Needs care in every area of life.
They make it as ugly as they possibly can. That’s who they see me as. And they can’t see all those things alongside being a real person. Even one of those things causes them to look down on me, but all of it, and I’m grotesque and pitiful maybe but not a real person.
They don’t see that I’m an artist, a writer, a thinker, a film maker, or anything like that. They don’t see any depth to me. They don’t see my personhood or the ways I express it. Even if I wasn’t any of those words that mean I was doing something. Even when I can’t be any of those things. I’m still a human being. Because the heart of who we are is about what we are, not what we do.
Once, based on pictures, a man talked about how he’d never want his daughter to be like me. He said I was unable to sample the richness that life has offer. He hadn’t even met me. People make that judgement of me all the time. And my response has always been this.
The world is infinitely rich. Nobody can sample all of that richness. No limitation can limit it enough that you have any less of it than any other person. It’s everywhere. It’s embedded in everything inside us and around us. No matter how small the area of the world you are aware of, it’s impossible to avoid being utterly saturated with it. And no matter how much of the world you’re aware of, it’s impossible to get more of it than another person. The richness of life is sort of like love, it’s infinite in the amount that a person can experience, and the more you have, the more is there.
And while some people would disagree with me, there’s a spiritual element in all this. Nobody is in a position where they’re too severely disabled to have a spiritual life. You don’t get to a certain level of dementia and suddenly their spirituality is gone. Because its not dependent on how much ability you have at what. That sort of thing just exists.
And no, I’m not a Christian, and no, that’s not why I believe any of these things. I get so sick of people assuming that if you believe any of the things I believe about death and disability, you must be a conservative Christian. Many disabled people agree with me because they’re disabled and they have life experiences that say the same things to them that mine do to me. They include atheists, agnostics, Christians, pagans, Jewish people, Muslims, Buddhists, Hindus, and just about every religion and lack thereof that is out there. Because, surprise, disability has nothing to do with what religion you are, and viewpoints like mine usually come from a certain disability experience, not religious beliefs.
My viewpoint doesn’t come from a fear of death, either. I’m to afraid of death. I actually see death as a rather friendly thing that will welcome me into rest, as my body and soul dissipate and become part of the rest of the world, where they came from. If you need to ask, that’s my view on death. It’s even a rather beautiful thing in its own way, because it represents how everything is part of everything else. I have enough close experience to not fear death itself. But I know I only get one chance at this life. And I want to make the most of it. And I don’t want to be killed for being disabled any more than I want to be killed for being a lesbian. But in the society I live in, that kind of hate crime against disabled people — pressuring us into dying by not accepting medical treatment, for instance — is in many cases perfectly legal if you pull it off correctly. And that, that scares me. Just because I don’t mind dying, doesn’t mean I want to die before my time because some jerkass doctor wants it that way.
So yeah. Whenever I catch a glimpse of myself or my friends the way most people see us, I feel like throwing up. It’s so easy to kill us. It’s too easy. And it starts with that thing where we become grotesque, lesser, and scary, because we are disabled, or especially cognitively disabled. People fear our lives and that shifts nicely into wanting us dead which has real consequences for al of us. And it’s terrifying when people think we have no mind, and when they think that means we aren’t people.
We are people, and we think, and we are real, and we have lives, and those lives contain the same richness and beauty as anyone else’s life. And to see us otherwise, to see us as less than people, that’s the first step in killing us. Which is why I can’t bear to see it sometimes. And yet all this is invisible to the people who see us as automatically pathetic or unpersons.
Chronic illness has not been a wholly bad experience.
But I am at a loss as to how to explain that properly. In a social world where people see health as the same thing as happiness and virtue, it’s very hard to even talk about this. I don’t think the language has words for all the experiences I wish I could describe. But I’m going to try, because I’m determined to talk about this, because I know I can’t be alone in either my good or my bad experiences with chronic illness.
I also want to be clear that nobody is forcing me to say this. In fact, if anything, I get the sense many people would rather I didn’t. For good reason: People with chronic illness are always hearing all kinds of ridiculous platitudes about how we should feel about our bodies. It’s easy to fear that this will just be another platitude, another description of how healthy people think we should feel. But it’s not. Nobody forced me to say this. Most healthy people can’t even imagine the things I’m going to try to talk about, let alone pressure anyone to feel that way. And I’m not saying anyone else ought to feel like this. I just know that lots of people do, and we don’t always know how to put words on it.
Part of it has to do with my connection to my body. When I am at my most connected to my body, I am usually happiest, even when my body is feeling terrible. It took me a long time to figure this out. My impulse is always to disconnect, shut off, go away. But I’m never truly comfortable again until I’m back in the warm brown sensation of feeling completely within my body.
And when I feel wonderful and at home in my body like that. All the sensations of my illness aren’t gone. In fact, they can’t be differentiated from all the other sensations in my body. You can’t chop parts of my body off and say, this part is ill, that part is normal. My whole body is everything that it is, which includes illness. You can’t separate it from me, like it’s an add-on to who I am.
You can’t even go back to a time without chronic illness. Because I was born with a lot of mine. And other ones seem to have been in my genes, inside me, waiting to become visible.
So when I look to who I am on the deepest physical levels — and I don’t believe in the stuff where I’m a disembodied mind and my body is just a piece of meaningless trash that I have to fight against, I feel icky even writing about that here — illness is there. It can’t be separated out from the rest of me. It’s woven in, down deep where nothing can get at it and tease out the “good” parts from the “bad”. And I wouldn’t want to do that. It’s written into everything I am, in its own way.
Don’t get me wrong, I’ve experienced the bad things as much as anyone else. The endless nausea, and the vomiting that often results. The pain that has never gone away for a day in my life. Breathing and breathing but never feeling like I am getting enough air the way I used to. Waking up in the middle of the night unable to breathe, coughing up stomach acid and bile, wondering if this will be my last day on earth. Losing the ability to eat by mouth, presumably forever. Long stretches of delirium, alone, in pain, in hospital rooms. Wondering if I’ll make it to forty. Or hell, thirty-five.
To many people, that’s the only side of chronic illness, a uniformly terrible thing that you can easily separate from the rest of you. I don’t know why I can’t do that, but I can’t. And my instinct tells me that neither can a lot of people, who never speak up because they don’t have the words, or because they are afraid of offending someone.
It’s not just that it is deeply embedded in who I am, either. It’s that illness has a depth all its own. Just like every other part of the world, every other part of ourselves, it has depths that healthy people are totally unaware of. Hidden depths, interesting depths, impossible to explain depths.
And with those depths come a kind of meaning. I hear all the time that people who find meaning in our illness do so because of a defense mechanism. That we have an emotional need to find something useful there, so we do, even if there’s nothing. That may be true of some people. But for me, the meaning to be found in illness is not some kind of sophisticated denial mechanism that I use to avoid handling how much my life sucks. It’s much more than that. It’s independent of my other feelings. It’s just there, the same way the bad parts are just there. Odd how it’s easy to understand that some parts of chronic illness just suck, but harder to swallow that other parts just have meaning. So don’t even think of telling me that I’m just romanticizing an awful situation. Just because your experience of illness is only the bad side, doesn’t mean everyone’s experience is the same.
Like the depth, the many layers of meaning are not easy to put into words. It has something to do with my way of seeing the world. A way that is deepened, not destroyed, by an experience of pain. Some days pain is just pain. It just makes me miserable. Other days, the pain levels out and creates joy.
One night, I was lying in bed, in absolute agony from trigeminal neuralgia and other neuropathic pain. I fell asleep. I knew in the dream that I was asleep, and I was in terrible pain. But in the dream, I felt no pain. The sky was a deep, vibrant blue that you only see some days, after sunset or before dawn. I explored a city on foot, feeling no pain, no weakness, no nausea, no discomfort at all. Going into buildings and out of them again. Looking at the sky, and the ocean. Everything was silent. My mind was silent, the pain was silent, the world was so silent and expectant that you could hear more than you ever could with noise. And the whole time, I knew that I was being given a break from that terrible pain. I knew that I would wake up, still in pain. But I knew that I would wake up refreshed, and able to handle the pain.
When I did wake up, all of that came true. And instead of feeling the pain as wholly negative, the pain carried some of the joy of the dream along with it. It was as if the pain had hollowed out a place deep within me where life and joy could live. In a way that they couldn’t, if the pain had never been there.
I felt similar this morning, but in a way that was more subtle. At around five in the morning, I was curled up with Fey, and a book. I could smell the fur around Fey’s ears and feel the warmth of her love. And as always, I could sense the connection that exists between me and a close friend of mine who lives thousands of miles away. And everything in that moment was beautiful and meaningful. And it hit me that the beauty and meaning wouldn’t be as complete if I hadn’t been through all the recent aspirations and infections, the knowledge that my life could be taken away at any moment.
And that’s just one of a whole spectrum of ways that illness affects how I see the world in a good way. There’s even more. But none of it is easy to put your finger on, so I’ve just tried to give you a glimpse.
The meaning I find isn’t just within myself, either. If it was, it wouldn’t be very meaningful, or very beautiful, or anything else good. It’s true that illness can sometimes make people unable to see past their own selves. Sometimes in a way that’s understandable under the circumstances, other times in a way that’s just plain ugly. But it can also help people see past ourselves, into the lives and needs of other people. And anything that helps anyone avoid self-absorption can’t be entirely meaningless or terrible. Anything that lets people get past their ego can’t be one hundred percent terrible or meaningless.
George MacDonald wrote an interesting book, “At The Back of the North Wind”. It’s almost like a fairy tale. It is eerie, beautiful, haunting, and meaningful. And he wrote it to come to terms with the death of his own son. It rarely mentions illness directly, and yet the North Wind strongly reminds me of that side of illness that nobody talks about. The side that is powerful, and terrifying, but also deep and beautiful in ways I don’t have words for. Yeah, the book has elements that a lot of modern readers would roll their eyes at. But that element rings true for me in a way that few modern books do. When I explored that city in my dream, it was just like the boy’s travels with the North Wind. And there’s an unspoken, unspeakable beauty beneath the surface that I see all the time in my regular life, connected in some way with illness.
Another thing about illness that can’t be overlooked, but everyone does seem to overlook it:
When I’m severely ill. Severely ill enough that by that point I’m often hospitalized or even delirious. There’s a way that the illness tears down my defenses against many of the bad things in the world. And they swarm through me as if I am made of Swiss cheese.
At the same time that my defenses are down against the bad things of the world, my defenses are also down against the good things of the world. Every day, throughout our lives, people put up all kinds of defenses against the best, deepest, most important parts of the world. We put up such good defenses that most of us can go through life believing that those good things aren’t there, or are kept at a “safe” distance. (Why “safe”? Because our egos have no true defense against the deepest parts of the world, and they know it.)
But when I am seriously ill. When I’ve exhausted my energy reserves. Not just the way many ill people are exhausted by the end of the day. But as in, the energy reserves that allow us to keep on living. When those reserves start going down far enough to be scary to me and anyone else who wants me alive.
Then I have no defense against the good parts of the world.
And the good parts of the world flood through me. And they give me a glimpse of the ultimate depth and the ultimate beauty and the ultimate meaning and things there are not and will never be, can never be, words for. And they change me, for the better. Those changes are the most important part. The part that makes this, any of what I’m discussing at all, actually deep or meaningful, and not just an exercise in aesthetics or something.
That sort of thing doesn’t happen every time I have a medical crisis. And it never happens on command. But it happens often enough to show it’s no coincidence. The changes are long lasting and deep enough to show me it’s not an artifact of delirium, even if it happens while delirious. And here and there, when I look for it, I find plenty of evidence that things like this have happened to other people during severe illnesses, whether acute or chronic. It’s not something people talk about much anymore, but it’s out there, and it’s not a bad thing. Severe enough illness can make you vulnerable to reality.
Hopefully, even if you’ve experienced none of these things, I’ve at least convinced you that I have. That all these good parts about chronic illness aren’t platitudes I thought up in order to “think more positive” (eurrrrgh), but rather real, flesh and blood experiences I’ve had that contradict the common idea that chronic illness is nothing but neverending tragedy and heartache. Because they are. I can no longer get rid of these experiences than I can get rid of the good ones.
And I recently decided that it’s very important I begin writing about these things. Because not many people are writing about them. And that usually signals to me a need to put into words something that many people experience (or experience something similar), but have no words for. Because there’s no way that I, or my experiences, can be that unique.
I also know that even people who have good experiences may not be willing to admit them. Nearly all chronically ill people have been taught at some point, the toxic and false idea that there is a good side to being chronically ill — and that is getting out of the responsibilities and demands of ordinary life — and that deep down, we all desire that, and that’s why we stay ill. And that if we thought hard enough, we would find our areas of so-called “secondary gain”, and get well again once we admitted to ourselves what we were doing. Even many doctors believe that bullshit.
And after being exposed to that kind of crap on a regular basis, it can be scary to admit that we have any positive experiences associated with illness. I once read a review of a book by a terminally ill man, who described himself as enjoying being taken care of. The reviewer went on to basically blame the guy for dying, so that he could be helpless and taken care of. I wish I was making it up.
When ill and disabled people are hearing that all the time, it’s no wonder we get nervous at the idea that there’s anything good about getting ill. We often fear that if we admit anything positive, it would mean admitting that we did it to ourselves, or that we could get out of it if we only wanted to badly enough, distanced ourselves enough from the good parts of illness.
But there are good parts of illness, for many of us. They just aren’t in any of the places that healthy people tend to think. They go much deeper down, and are much less about our own egos, than the “you chose your own illness” jerks could even imagine. And admitting them isn’t admitting that we chose this. Hiding from them won’t make us less ill.
For those of us who experience the good side of chronic illness, that side of things is just there. It just happens to exist. That’s all there is to it. It’s hard to see, hard to touch, and hard for anyone outside the experience to imagine. But it’s there nonetheless. And I’m talking about it, because not many other people are. And that’s what I do.
Feeding tubes and weird ideas | Ballastexistenz
My Blogging Against Disablism Day post over on my main blog. Deals with the struggle I had to get a feeding tube, over the objections of doctors who would rather I have died. And also the strange prejudices people have about how if you have a feeding tube, your life must be over. When I feel like after getting a tube I finally have the chance to be alive again.
There’s nothing more disturbing in an emergency room than hearing screams of anguish from bereaved family members.
I’ve heard at least three today. That’s more than I ever want to hear in my life. They have a distinctive, awful sound.
Fey is snuggled up to my arm (The weird mark on my arm is the remnants of a blown vein from the hospital.)
And I’m trying to think of a way to persuade her that she isn’t the only person who takes care of me.
People think it is just a joke, when I say that she sees herself as my mother, and me as a huge, stupid kitten that she loves with everything in her.
Except its true. That is how she sees me. And she thinks she has to protect me. She doesn’t understand that lots of other people protect me. That lots of other people care about me and take care of me. She thinks she has to do it all herself. And she drives herself crazy from anxiety all the time about how she is going to help me. And if she can’t help me at all, like when I am in the hospital, she completely loses it until she can.
And it’s not good for her to think like this. She needs to be able to relax. I’ve told her over and over again that she doesn’t have to do this, that she needs to calm down a bit and stop freaking out because I have tons of other people in my life who love me and take care of me and protect me. And that one cat can’t do all of these things forever.
I know she thinks about what will happen when she dies. I don’t know how I know. But she does. Like all mothers do. I worry that if there’s some kind of afterlife she might resist going because she wanted to stay and take care of me, and that would be horrible for her, and less effective for her purpose of helping me, than allowing herself to become part of everything the way she should. And somehow before she dies I need to convince her it’s okay to leave me.
People think animals don’t know about death but that’s completely stupid. They know. She knows. I can see her thinking about it sometimes. Don’t ask how. I don’t understand how cats communicate these things, but they do, and she does, and I can see it. Sometimes I can see the worry written all over her body and I just want to hold her and tell her everything will be okay whether she’s here or not.
This is totally different than what I mean when I say she looks old, though. When she looks old, I mean she looks deep, the way some people become deepened with every year of their lives. She’s one of those people and her age shines out of her in a. Beautiful way sometimes. I try to convey my respect sometimes by calling her Grandma Fey. I thought her aging would terrify me, but it only fills me with wonder.
Anyway. Both for her sake now and in the future, somehow I have to convince this cat that my fate isn’t on her shoulders alone. She takes too much on as her sole duty alone. And it fills her with stress and worry that she doesn’t need. She’s overly responsible when it comes to me.
Again, I don’t fully know how all this is communicated. It seems to be written all over her sometimes. Cats are like that. They have all these layers of meaning that change and shift with their thoughts and mood, and if you can read at least some of those layers, which many people never know to learn or never bother to learn, then you can see a lot about them. That’s how a whole lot of feline communication works, and to them it’s perfectly ordinary.
I just never want to see her again so worn out and exhausted with anxiety that she flops down on the floor instead of eating her food. And I don’t want her worrying about her big stupid kitten so much that she fears dying — or moving on after death, if that’s how things work — entirely for that reason. And it’s painful to watch her worry every single day since I’ve been home from the hospital. When I go to the hospital I am more concerned about her than me, because she gets scared that I won’t come home, and she lives with that terror every single day I’m in there.
And it’s hard to explain things to a cat. They may communicate certain things very well. But it is hard, very hard, to say certain things to them. I try mostly to think about those things and let the thoughts sort of flow into my body language so she can read them from my body. But even then. How do you tell someone who’s been taking care of you for most of their near 14 years, that their drive to take care of you is… sort of overly driven? That’s hard even to tell humans, let alone cats with the big language and cognitive differences. It’s not that they’re unable to comprehend these sorts of ideas — mothers of any species that cares for their young, feel this way and think about these things. It’s that for cats, thinking and communicating is somewhat different than for humans. And bridging that species barrier can be difficult for anyone, regardless of now good they are at communication with cats in general.
And I want her to feel better. All mothers worry, but some mothers worry too much. And she worries too much. She doesn’t understand that this job isn’t entirely hers and hers alone. That other people will protect me, other people will take care of me, other people are already doing these things, she’s got plenty of backup.
Maybe it comes from her earliest years with me. When it was us and us alone, with only one other person helping me on a daily basis — but only from afar. When she learned quickly how to get me moving if I couldn’t move, how to watch over me during a seizure, how to make sure I didn’t overexert myself. And all sorts of other things that put her more in the role of mother than baby even though she was basically still a kitten. (And that qualified her as an assistance animal.) People call her my baby but she is more like my mother. I seem to have three different people in my life who’ve taken on a maternal role — my real mom, Fey, and webmuskie.
And Fey takes that role quite seriously. The problem is she takes it too seriously. And that’s not good for either her or me. How does a big stupid kitten convince a real cat that she doesn’t need to put herself in such an intensely responsible position? I still don’t know the answer, but I have to figure it out.
Attitudes about disability prove almost lethal
This link is an article by Laura Hershey about how her disabled friend almost died after being pressured into signing a do not resuscitate order. Hey, I’m not making this stuff up. It happens to disabled people all the time that we are pressured in the medical system to die. I even heard it in the sound of the nurses voice as she said “to each her own” when I asked for all heroic measures to be taken to save and continue my life.
What a lot of people don’t understand is that resisting is not easy. There’s a force of attitudes towards disability that grinds you down. And you are incredibly vulnerable when you are sick enough to be hospitalized.
Just earlier today, I almost wished I hadn’t agreed to the feeding tube. Why? I was in severe pain. My IV had sensitized my entire hand to pain, which sensitized all my other nerves and joints. I ended up in so much pain I was crying, which is a rare response for me. And in that moment, I felt like maybe I didn’t want to exist after all.
But it was just a moment. The thing is that the worst of the healthcare system sits there and takes those vulnerable moments and stretches them out. Builds on them. Makes sure you’re vulnerable while they ask you questions about life and death decisions. Because they think its easier that way. People like you always die anyway, why prolong the inevitable? Or whatever other little bit of bigotry they have stuffed up their asses.
But it’s that vulnerability. And it is an extreme vulnerability. That makes it easy to say no I don’t want the procedure. Yes I will die of pneumonia. They make it easy. Easier than living. At the moment when you have the least fight in you.
I have found amazing allies in the healthcare system. But there are those who don’t understand. Or who understand too well and really don’t want you around. Either way, being sick, tired, in pain, and so exhausted that just to type a few words to communicate can be a struggle at times, and it’s an exhaustion that healthy people just don’t know. And when you’re weary, that’s when they get you. And that’s when you need to somehow be on your guard or have someone else guarding you.
I think some of my crying today wasn’t just the pain but the exhaustion of having to fight for my existence. Nobody should have to do that, least of all with aspiration pneumonia or some other exhausting disease that seems to pull all the energy right out of you. Thank you so much to everyone who has spoken up for me. You’re telling them that I have a community, that I am a person who like them is loved and wanted and cared for. I only hope they transfer that information onto the next DD patient they want to mess with.