Friends and Family Friday is one of the (many) planned themes to organize time and blogging and whatnot. This is a placeholder until I can write a better description. As usual, if I wait for it to be exactly right for publication, I’ll never write anything. So I’m trying a bunch of new things, including posting unfinished stuff like this.
It’s good to see friends.
I remember what’s underneath the visit.
I remember pain and stuff.
I remember emergency speech.
I remember what’s underneath though.
And that’s what matters.
Underneath there’s me and Anne and everyone.
I love Anne.
I love Cal.
I love Joelle.
I love Ruti.
I love Laura.
I love lots of people I haven’t named.
I rarely get to talk to my friends. Even online. We rarely keep in touch. We all have huge trouble doing that. It’s the worst part of inertia.
I hate the myth that we don’t or shouldn’t need friends. It’s fine not to. But it’s totally okay to want and need people in your life and most people do, even most loners.
I hate the community norms in some places where it becomes almost a macho one-upmanship thing to show how unsocial you are. Like… I once described it as “A whole bunch of people socializing by competing about how much they claim to not need to socialize.”
It’s okay to want to socialize.
It’s okay to socialize.
Never let a label determine what you think you should want.
Not even a label you like or that is useful to you. If it starts ruling you instead of you using it something’s wrong.
Someone once told me “You’re allowed to want people in your life, you’re just not allowed to need them.”
I knew where she got that. And it was not from someone who said “allowed”. It was from someone describing their own experience only. But somehow other people turned it into “allowed”. And that’s bad.
It’s okay to want people in your life.
It’s okay to need people in your life.
Both of these things are equally okay.
It’s okay to like people.
It’s okay to love people.
It’s okay to socialize however you want to as long as everyone involved is really okay with it.
There’s a terrible kind of isolation very few people admit exists.
In systems like the developmental disability system sometimes all the people you ever see are staff.
For those unaware staff doesn’t mean what it seems to mean to most people. For DD people having staff means having people with lots of power over you, it’s the people who are supposed to be taking care of you. But they may or may not be. And whether they’re amazing or terrible and helping or hurting or whatever — they have power over you that you don’t have over them. Nobody can wish that away or make it go away just by wanting it to or trying. The power is built in to the job.
And sometimes every single person I interact with for months is staff.
I actually usually like staff.
They’re not the same as friends.
Not the same as strangers either. It’s a personal relationship and pretending it’s not doesn’t work any more than pretending it’s a friendship works.
But it encloses you in the agency.
It wraps around you.
If all you see is staff.
All you see reflected back at you has an agency distortion.
Even if every single person individually sees you as a person.
This still happens.
It’s just not the same as having friends.
I started having friends again.
Ruti. Joelle. Cal. Anne.Paragraph
I was a person again.
I realized I wasn’t anywhere near a horrible a person as I thought I was.
Lots of other things too.
I realized my love meant something to other people and that other people loved me.
Both of those things are important.
So many things about myself and my friends and friendship and being human.
And I started to feel human.
A little bit.
I felt like I’d woken up from a weird sleep.
It’s how I feel around people who just want to be around me and I want to be around them.
That’s why Anne and Igor and everyone are so important. Even when we don’t see each other online or off for years. We want to but we can’t always and sometimes it hurts. But knowing each other at all counts for something. And I wish we could all communicate with as many others as we want to as much as we want to in the ways we want to. Because I’ve missed years of contact and I’m sure the others can say the same or more.
This picture isn’t just about pain, it’s why I wanted to post it again.
It’s about love.
It’s about being human.
I have a different kind of relationship with each of my friends.
With Anne it’s partly built on so much of our lives and brains working the same way.
If you ever read the book Loud Hands I have an untitled chapter. It’s about Anne. I can’t do us justice here but that’s the closest I’ve come to doing our friendship justice anywhere.
Anyway we read each other underneath everything. The words almost don’t matter. We exist and resonate.
And for that friendship that’s how it works.
So the picture is about resonating and friendship and love and humanity and all kinds of wonderful things.
Those are all in there too just as much as pain is.
I want to post that picture to celebrate knowing Anne and friendship and love in general and the amazing luck of finding those things at all, for a lot of us who never expected it or even really knew what a friend was. And the importance of all this when you have it.
And so many more things I can’t name.
There’s a lot in this picture that’s really beautiful about friendship if you know what you’re looking at.
The pain isn’t separate from it either. It’s not some extra thing. If it’s part of my body right then it’s part of the picture too. But so is the love and the resonance and the catness and all the other things. They’re all wrapped in together because that’s how life works. It’s all there underneath if you know how to look for it.
I love all my friends whether I named you or not and you’re all important to me and I care about you and wish we could interact more in whatever way worked best for us.
I keep my boughs from growing
On the side you stand
So our branches won’t clash
Or fight for the sun
Your branches batter mine
Demanding more, more, more
We live in a state of siege
We strive for a state of love
I can only love you through our roots
Which nourish and protect
Without hindrance or distraction
I turn away
So I can love you
Where your grasping limbs can’t reach
Hard and swift
Your branches grasp
And stillMel Baggs, written gradually in hir mind & on paper between roughly 2013-2018, for someone sie’s known most of hir life
Swift and sad
I turn away
And dig deep
So um. Sie doesn’t have a name (well sie does by the end of this post, I decided to name hir), and I’m not sure sie’s gonna have a name. I haven’t named tubes since Enid — long story.
But I swear with the way they move, these little MIC-KEY buttons can look like they’re alive.
So meet my tube. Sie’s a 14 French MIC-KEY button jejunostomy tube, 3.5 cm stoma length. I think sie wants to say hi here:
I think sie’s adorable.
And yes, sie moves. Mostly peristalsis, the natural movement of the intestines, but it makes it look like sie has a little head that peeks around. Most of the time when sie’s in hir dressing sie moves a little less, which is good (you don’t want a J-tube spinning, sie has a long tail inside of me).
Sie’s modular. Which means that the part you can see is just the part that attachments can clip onto. There are different extension kits for different types of syringes and feeding attachments and situations, and all of them are pretty cheaply replaced. Which means if one of your extension kits breaks, you don’t have to replace the entire tube inside you. You just replace the external extension. Usually when I’ve had MIC-KEY button J-tubes they have needed internal replacing only every 6 months or less, and in my case we were usually just being cautious and could’ve gone longer. For some people they last years.
Because there’s not a big giant dangling thing coming out of you, low-profile tubes like MIC-KEY buttons are a lot safer. They don’t catch on things and yank out very often. They don’t need to be taped down to prevent movement. And the ones that do need to be taped down, taping doesn’t really prevent all movement, so they move more and that can put wear and tear on your stoma. They’re also really good for young children because children are less likely to see a giant dangling thing and play with it and yank it out by accident.
Here are some of my tube’s extensions:
This one goes to an ENfit connector. ENfit connectors were designed for everything from tube feeding attachments to syringes, to make it so that it’s impossible to confuse a feeding tube with an IV, a mistake that can be fatal. So I like the idea of ENfit, although it was messed up pretty badly when they tried to make it universal for all existing feeding tubes and it wasn’t, and neither was their alternate solution.
This one goes to an ENfit connector but allows two connections. This means you could have one part connected to your feeding pump, and at the exact same time be putting meds in the other part with a syringe, without having to unplug anything.
This one allows a normal 60 mL cath-tip syringe to put things into your tube.
This one allows two sizes of syringe — cath-tip and a smaller kind that are often used for medications.
And there are others in various shapes and sizes, those are just the four I use the most often.
Here is a video showing how easy it is to put in the extensions.
My old tube was not modular. It was a 12-French MIC* J-tube, and it is one of my least favorite tubes. But it is the only one they will implant surgically, then you have to wait six weeks minimum before you can switch to the tube you want.
As you can see in the photo above, the tube is all one piece. If one part breaks or wears out or stretches beyond usability or gets clogged, you have to replace the entire thing. It’s also a constant safety hazard because no matter how well you tape it down (and taping it down creates its own safety hazards that are different) it’s gonna still be able to move and get caugh on things.
So my new tube… maybe I should give hir a name, I’m just not sure what name to give hir. I guess I’ll call hir Linden for now, and see where it goes. I’m just tired of not having a name. So Linden, Lindy for short.
So here are the official photos of the old MIC tube i had, and the new MIC-KEY tube. It’s night and day, even though they serve the same function. The following is a Halyard 12 French MIC* Jejunal feeding tube. And really sucks as feeding tubes go.
The following, on the other hand, is the kind of tube Linden is, called a low-profile feeding tube or a MIC-KEY button. This kind of tube is modular and generally wonderful. Again, the long tail you see is mostly inside of me. The tail is part of what makes J-tubes (intestinal feeding tubes) different from G-tubes (stomach feeding tubes).
So meet Linden again:
And I hope you find hir as cute as I do, even though a lot of people would find it weird to call a feeding tube cute. I kind of wish I could give hir decorations, but there’s no way that would either be safe or stay put, so no point. But I can name hir Linden and show people the way sie moves. ^_^
When Cal Montgomery wrote one of his most famous disability rights essays in Ragged Edge Magazine in 2001, he titled it Critic of the Dawn. He included a quote from a Phil Ochs song to explain the context:
To a nightmare of knowledge, he opens up the gate
And a blinding revelation is laid upon his plate
That beneath the greatest love is a hurricane of hate
And God help the critic of the dawn
I’ve thought a lot about that quote over the years.
I don’t actually literally believe there’s hate under the greatest love in the world. I can see a deep love that underlies everything.
But that’s not the point of the quote.
The point, as I see it, is glamour. At least, glamour always comes into this sort of thing for me.
Glamour is a term from folklore for a kind of fairy magic. It tells us to perceive something different than what’s actually in front of us. A cave may look like a castle. Rotting garbage may smell and taste like a feast. Generally glamour tells you whatever you’re looking at is better than what it actually is. It can show you what you want to see, what the fairy wants you to see. Whatever’s beneath it can just be shabby-looking, or else be sinister as all fuck.
I’ve lived my whole life surrounded by glamour, drowning in glamour, learning to see through glamour for my own protection and that of those around me. Learning to react to what is really there, not to what people want me to see, want me to believe. I had to learn early the difference between the taste of love and the taste of saccharine-coated poison if I was to survive the world.
These are valuable skills to have, and to use.
It’s also dangerous.
It’s also often thankless.
But it’s important to learn to see through glamour.
It’s important to learn when you’re being fooled by glamour.
It’s important to know that even if you can’t always see the truth, there is a truth to see.
I know it puts me at a disadvantage, sometimes even in danger, but in many interactions I can only react to what’s there, not to the glamour. I can’t help this. It’s not a choice I make.
Unfortunately, a lot of people want to be fooled by glamour. It makes them feel safer and more secure. It makes them feel the world is more predictable.
Those of us who have to live with the fallout have other ideas.
How do you tell people that sometimes it’d be safer for you as a disabled person to die on a street corner than get care in a hospital?
How do you tell people that you live in a world where the police aren’t gonna protect you?
How do you tell people that the developmental disability service system is largely a dystopia while everyone involved seems to want to believe (or convince everyone else to believe) it’s a utopia?
How do you tell parts of the disability rights movement that hospice is not the kinder gentler alternative to euthanasia, but rather can and often does become a creepy-ass safe haven for euthanasia and worse?
How do you tell people that you can close all the state institutions and group homes and ICF/DDs and have everyone receiving services in their own homes and still basically have an institution?
How do you tell the Independent Living Movement that nursing homes aren’t the end-all and be-all of institutions for disabled people?
How do you tell people that seeking psychiatric help when you’re suffering terribly may be the worst decision some people could possibly make?
How do you tell people that when people like you get murdered by caregivers and family members, most of your society including the judicial system rushes to defend your murderers before they even know what happened?
How do you tell people that people with developmental disabilities can come from utterly dysfunctional families just as much as anyone else and that relying on family for care, or even information about what care to give, is not safe for a lot of us?
How do you tell people that when people like you are abused, neglected, murdered, it’s not because you’re just so difficult to live with that everyone around you snaps?
How do you tell people that the scary violent kids often come from scary violent environments but are scapegoated as The Troubled One as if everything going on around us isn’t happening… and then are subjected to even more scary violence that everyone applauds?
How do you tell people that all the systems supposedly set up to protect elderly and disabled people (among others) are just as likely to contain us, trap us, even kill us?
How do you tell those people trying so kindly to convince the elderly woman one bed over from you in the hospital, that she needs to go to a nursing home because she falls, that people fall and die in nursing homes too, and people die faster in nursing homes, and nursing homes aren’t protective against anything, they’re just places to forget about people?
How do you tell people that when it comes what’s directed your way, much of what is called loving, benevolent, supportive, wonderful, perfect, even utopian… is a whirlwind of hate and destruction and death?
How do you show them that things aren’t what they have been taught, aren’t what they seem, aren’t what they expect, pretty much ever?
How do you show them what’s underneath the glamour?
How do you show them what’s underneath the glamour?
How do you show them what’s underneath the glamour?
How do you make anyone care what’s happening to people like you?
People who are invisible beneath all the glamour thrown on top of you?
I don’t know. I keep trying. I keep hold of my rocks with holes in them and I keep trying, I keep trying, I keep trying. If we all keep believing the glamour, we’ll end up eating poisonous garbage and calling it baklava.
One rule of thumb: Love and hate can be actions, not just emotions. If someone tells you they loved their child so much they just had to at least consider murdering them, that ain’t love, people.
God help the critic of the dawn, indeed.
“Noncompliance Is A Social Skill” t-shirts come from RealSocialSkills.org, an amazing website by Ruti Regan. From the about page: “‘Social skills’ is often a slur meaning ‘teaching disabled people to be seen and not heard.’ I am reclaiming that slur by taking ‘social skills’ literally. Social skills really do exist, and they’re not about fading powerlessly into the background. Real social skills are about learning effective and ethical ways to interact with other people. Some of these skills enable us to stop internalizing ableism, misogyny, and other forms of dehumanization.”
Thank you to Cal Montgomery and Ruti Regan, among many others, for continuing each in your own way to do your best to show the reality underneath some of people’s most cherished glamour illusions. It means the world to me that there are other people doing this.
People react a lot to my hats.
Maybe it’s because I’m in Vermont. I don’t know. People come up with a lot of weird meanings for my hat. They think it’s a cowboy hat. Or an adventurer hat. Or some kind of costume. It’s not any of the above. It’s my father’s hat.
Maybe it’s an Okie thing. People wear hats. Wearing hats has specific meanings I can’t put into words easily. I can look back in generations of family photographs and find people wearing similar hats, similar clothes.
My father always wore a hat. But he wore them for different reasons.
One of my favorite memories of my father and his hats was the way he’d wear it when he was headed out to do something important. He might still be wearing his usual jeans and shirt, but the hat meant things were important and he was dressing up. You could tell by how deliberately he put it on.
And he wore these hats as if the hats grew out of his head.
I saw hats in family photos, hats on family members, I saw the way people treated their hats, the way they touched their hats, the way they wore their hats. Hats are important in my family and culture.
When my father died, he sent me a lot of his hats, and a lot of his shirts and suspenders. I began wearing his clothes, or his style of clothes, every day, including his hats.
People told me for the first time in my life I looked comfortable in my own skin.
It wasn’t a conscious thing.
But the clothes started looking like they grew on me, the same way they looked like they grew on him, the same way similar clothes look like they grew on many of our relatives who dress similarly.
I started feeling more connected to him.
It sounds like a cliché, but maybe some things are clichés for a reason: Wearing his clothes made me able to feel connected to him, I found the parts of me that he left deep inside of me when I wasn’t looking. It wasn’t about how I looked in the clothes, it was about how I felt in them. I felt connected to him, connected to my family, connected to my culture. I felt things that have no words, no names, more depth than you’d imagine from a set of clothing.
But then I always connected to the world well through objects and the connections between them.
And, it turns out, so did my father.
I continue to discover him inside of me in ways I could’ve never imagined.
I continue to discover the things he has passed down to me without word or instruction.
And those things, that love, are the most valuable things of all. They form connections and bonds between people. They’re important.
So when you see me in any of my dad’s hats. It’s not a costume. It’s not a cowboy hat. It’s not an adventurer hat. It’s a connection to things I didn’t even know were inside me, between me and my dad, between me and my family, between me and my culture. It’s remembrance and love but it’s so much more.
People are often taught to view clothing as superficial and vain. To view objects as just meaningless dead things. But clothing can tell you a lot about where you come from. It can connect you to your roots, however loving, uncomfortable, and complicated those roots might be. It can be a reminder of who you really are.
I’m glad I wear my father’s hats.
I need a couple of feeding tubes, and sometimes a chest port, to stay alive. One of the feeding tubes drains fluid out of my partially paralyzed stomach so it doesn’t overflow into my lungs. The other feeding tube goes straight into my small intestine, and you put all the food, water, and medication in there. That bypasses my stomach, which doesn’t empty properly so most things just sit there or backflow into my lungs instead of being used. People can need feeding tubes for lots of reasons, but in my case it’s to get around the fact that my stomach resembles a dead-end street. Luckily you don’t really need your stomach for digestion. Small intestines do it just fine.
There’s a lot of things people don’t understand about feeding tubes, but one of the objections I hear most often is that living with a feeding tube is ‘unnatural’. It’s modern medicine run amok, going too far, keeping people alive who’d be better off dead, and lots of other cheery bullshit. And the very idea creeps people out because it’s supposedly artificial, unnatural, and disturbing to even think about. It’s hard to know where to begin with that kind of thing, but I have a lot of objections to the idea it’s unnatural.
First off, human beings using technology to keep each other alive is the most natural thing we could possibly do. We are built to have compassion for each other, to take care of each other. We are built to solve problems, both alone and as groups. We pass on our knowledge and build on it from generation to generation. We are skilled at making and improving on technology. These are our natural skills, our natural instincts, and there is little more natural for a human being than using them.
Feeding tubes also aren’t that recent an invention. They date back at least to ancient Egypt, where they were tubes stuck up people’s butts to try to get food into them that way. Butt feeding tubes were the norm until people started figuring out how to use a tube down the throat to bypass the windpipe on the way to the stomach. They used those for everything from torturing and force-feeding prisoners to making picky children eat food they didn’t want. Butt tubes were still around though. When President Garfield was shot, they were able to keep him alive for awhile using a butt-based feeding tube.
It wasn’t until anesthesia made surgery possible and antibiotics reduced the infection risk, though, that people really made headway with the kind of feeding tubes I have. These are implanted through a hole (stoma) directly into the stomach or intestine. When done properly, these days, this is reasonably low-risk and reversible. The hole heals if you take the tube out. Even while the tube is in, it’s perfectly possible to eat by mouth if you’re capable of it. Nothing about the tube itself will prevent you from doing that, only whatever condition is making feeding difficult in the first place. So if you have the feeding tube and don’t need it anymore, you can get used to eating again before having it removed.
It may be obvious that I have a problem with the way people divide things into artificial and natural. Lots of animals use tools and technology. Lots of animals do things to solve problems. We’re not different there. The things we make are just as natural as the things beavers make. Whether we, or beavers, cause problems with the things we make, is a completely different question. But just the act of making things isn’t defying nature. It can’t be. That’s not possible. And it’s perfectly in line with every natural human instinct out there.
But for people who find what human beings do hopelessly unnatural… here’s this other thing that happens:
In case you don’t know what you’re looking at, that’s a couple of Douglas fir trees. One of them is a regular tree, the other is a stump. The stump is alive. Even though it has no leaves to make food out of, the stump is still completely alive.
How is this possible? The roots of the two trees are connected. The tree sends nutrients to the stump, so that it doesn’t have to make its own food. This can keep the stump alive indefinitely. This happens all the time. It’s tube feeding for trees.
Douglas firs, like the redwoods depicted in the wall hanging in my first photo, are a social species of tree. Many social species of tree connect at the roots, either directly root to root, or through a network of roots and fungus. They can send signals, nutrients, and other chemicals through the roots. They even show preference for family and for trees that — however trees decide this — are friends. Just because they’re a social species of plant and work very differently from us, doesn’t mean they don’t share with humans the desire to help each other survive.
I mean, I’m talking in terms that sound very human, but there’s no real words out there for saying what trees want and how. All life wants to be alive, though. For social species, that often involves helping each other out. That goes no matter what kind of life form you are and how different you are.
I’ve never met even the most ridiculous nature purist who’d claim trees are unnatural. And if it’s not unnatural for trees to use their time and resources to feed each other when they can’t make their own food, it’s not unnatural for humans to find ways to do the same. Including feeding tubes.
So don’t call my feeding tube unnatural. It’s as natural as the redwood forest in the crocheted wall hanging next to me in the first picture. And using technology to help each other survive is one of the most natural things human beings can possibly do. All these tubes and machines don’t have to horrify you. I’m a living stump, not the living dead.
You can read all about the history of tubefeeding and more in Complete Tubefeeding: Everything you need to know about tubefeeding, tube nutrition, and blended diets by Eric Aadhar O’Gorman. I’d recommend the first half of the book much more than the second half, however.
The first half is well-researched information on tubefeeding in general. The second half reads like a cross between a sales pitch for blenderized diets and regurgitated Michael Pollan stuff. I use Osmolite for my main nutrition and supplement it with blenderized vegetables to get things you won’t find in elemental formulas. But when you’re reading along and the book starts referring to food the author thinks is bad for you as “edible food-like substances” and all the recipes specify the vegetables need to be organic, seriously? I don’t want orthorexia when I already can’t eat, thanks. It does tell you how to properly blenderize food for a feeding tube, though. It focuses on G-tube feeding and doesn’t mention the steps you have to do (like using a chinois) to make sure blenderized food can’t clog a longer and narrower J-tube, though.
If you’re interested in the social lives of trees, the following TED talk may be of interest:
Here is a link to a page with a transcript: How Trees Talk To Each Other.
Books regarding plant communication, cooperation, and senses:
The Hidden Life of Trees: What They Feel, How They Communicate – Discoveries From A Secret World by Peter Wohlleben. This is a combination of personal observations from decades in a German woodland, and scientific discoveries backing up those observations. Living stumps are described in detail.
What A Plant Knows: A Field Guide to the Senses by Daniel Chamovitz. This one describes the sensory experiences of plants in a way that is pretty easy for a layperson to understand and dispels many popular myths about plant senses. The things described are in line with the scientific knowledge at the time the book was written in 2012, most of which is likely to surprise people. There is a lot of bullshit out there about plant senses, this is the real thing as far as we know right now.
Do not confuse these books with The Secret Life of Plants, which is largely garbage. Be careful of information that comes from that particular book, it’s made its way into popular understanding but most of it is nonsense or misleading at best.
I’m hearing it a lot lately. A sense that the future is already doomed to be terrible no matter what we do, so why should we do anything, what could we possibly do that would make any difference at all?
I have a lot of thoughts on that. They’re hard to put into words. So I’ll tell you a true story.
A few years ago, I was dying.
Obviously, I’m still here, so something changed. More on that later. But, what’s important is, I knew I was dying. Without anyone intervening, giving myself a year was a little too generous. I was pretty sure I’d never see 34.
I kept coming close enough to death to touch it, close enough that if I had simply stopped trying to be alive, my body would have shut down and nobody would have known I had any say in the matter. It was happening more and more often. I was getting weaker. I started passing out and becoming unable to breathe on my own. I’d wake up at 3 in the morning to the sound of my bipap alarm going off. This alarm was supposed to wake me up if the settings designed to jump-start my breathing again didn’t start me taking breaths on my own. My head would be flopped so heavily on my chest that I couldn’t lift it, and the tissue in my neck was so strained it was excruciatingly painful. I’d try to move my hands to press a button to call for help, but they were so weak I could barely move my fingers. I’d realize that even though I was awake, I wasn’t breathing on my own even a little. The alarm was still blaring. The bipap was shoving a whole breath of air into my lungs, they’d deflate on their own, and then the bipap would shove another breath in. I’d know I could die right then. But I felt no emotion. The alarm kept going. I’d try to stay awake, but I’d get woozy and pass out, only to have this repeat a few times, alarm still going, and then in the morning I’d be able to move again, at least as well as I could move at the time, which wasn’t very.
I knew that eventually this would happen while I was awake and not already hooked up to the bipap. And that if nobody saw me, I would die. I also knew every time I got sick, I got much sicker than I should, and often became so weak that it took willpower to keep my blood pumping and my lungs breathing. Weaker than some people I knew had been on the last days of their lives. It got worse every time, and I knew it was only a matter of time before I got too weak to power through it with effort. I could also feel, on a deep, instinctual level, the knowledge that my body was preparing to shut down for good.
I didn’t tell anyone how bad it was, not even the people closest to me. But I was not in denial. I was grappling with the emotional and moral implications of my impending death. I just didn’t want to deal with other people’s reactions. Later, when my father was dying of cancer, he didn’t tell anyone until he ended up in the hospital so sick that he’d been given a week. (He turned out to have pneumonia, which they treated, but he died a few months later.) I understood why he did that, but I began to realize that if I had died, it would’ve robbed my loved ones of a chance to say goodbye to me. At any rate, I didn’t realize it at the time, but I did think about my own death a lot, and how it affected my life.
Obviously, I’m still here. What happened was two different doctors happened to run two different tests just as time was becoming short. They showed I had a severe hormone deficiency (the amount in my body was too small to measure, and it’s necessary for physical survival), and a neuromuscular disease. Both of which were treatable. So I survived. But this isn’t one of those ~never give up hope for a cure~ stories. One, I’m not cured by a longshot — instead of facing an inevitable slow decline into death like before, I now exist in a precarious state where, if I get the right support and treatment, my health is like a house of cards: It can get very tall indeed, but one thing pulled out at the wrong moment and I could die in hours. And two, I had no reason to think anyone would figure out what was going wrong with my body, and most people in my position would have been diagnosed in autopsy. In fact, it was phenomenal luck many times over that I hadn’t died before the time they actually found what was going on. So the point is, I really had to face my death in the same way that anyone facing imminent death has to. I had no realistic expectation of an out.
So where did this leave me? Well, I lost my fear of death pretty early. In fact, I had beautiful dreams about dying sometimes. I didn’t have a death wish, mind you. If I had, I wouldn’t be here. I just had seen death closely enough to stop fearing it, and to find beauty in aspects of it.
Everyone handles their impending death differently. I had a number of occasions to put it to the test: I would wake up aspirating a large amount of stomach acid, and from then on, I would be taken to the hospital, knowing that from the moment I woke up choking on bile that this could be the aspiration pneumonia that would kill me. I was rapidly too exhausted to put my affairs in order, or to do much in the fight against that pneumonia other than let doctors treat me, so I’d resign myself to uncertainty. This happened over and over again.
I’ve heard people talk about how they’d feel bad if they were dying and had never traveled the world like they always want to. But when I was faced by “My life could be over within hours or days,” that was not the kind of thing I regretted. In fact, I could barely give a shit what I’d done in those regards. But I was very preoccupied with who I’d been. Had I been a person who acted from love to the best of my ability? Had I been a moral person? That was the kind of question that made me nervous. I wasn’t sure I measured up to who I should have been. I wasn’t sure I’d affected enough people’s lives for the better. I’d resolve to do better if I got out of this. With some success. I’m far from perfect, but I think my focus and priorities have shifted.
But the reason I’m telling this story is because I feel like how we deal with our own personal mortality mirrors how we deal with the mortality of our entire species. We are facing the very real prospect that either humans won’t survive a lot longer, or not many of us will survive much longer.
One response I hear a lot is, “We’re doomed anyway, so why does it matter what I do?”
And some people do respond to their own personal death in that way. They start caring only about their own pleasure and stop giving a shit how they affect other people.
But the thing I discovered around my own death is — my end is not the end. That’s an understandable but self-centered way of looking at life. I’m not talking about life after death. I have some guesses about that, but they can only ever be guesses until I experience it. I’m talking about the fact that even if I am no longer in the world (whether death is the end for me, personally, or not), other people still will be.
I was going to die, but the rest of the world wasn’t, at least not right then. And dying may have meant I needed to conserve my energy in ways that made it harder to do certain things, or any obvious thing, for other people. But it didn’t mean I had lost the obligation to behave like a decent human being when it was possible to do so. If anything, that obligation seemed more important than ever the closer I got to death. If my life was going to mean anything, it was going to mean that I’d tried hard to do my best by other people, whether in big ways or small.
And this has really changed things for me. I haven’t become some kind of saint. I’m still saddled with the same confusion and self-centeredness that seems to plague human beings in general, but I make my best effort with what I’ve got. Which is all any of us can do.
And I see a strong parallel here with the way people respond to the thought of human extinction. “We’re screwed anyway, so might as well enjoy ourselves before we go out and forget about what we’re doing to the environment.” It might seem like the end of our species should mean we’re let off the hook, even if our own personal death doesn’t. After all, not only is any one individual person not going to be around, no other human being will be around either. There’s a lot of problems with this, though.
I’m going to start from the idea that total human extinction is soon and inevitable. Which it isn’t. Yet. But just saying it was.
We still have a responsibility to each other in the meantime. The reality is that nobody gets out of life alive. And yet most of us care about how we live in the time we’re still here. Treating each other decently is part of that. Because until we’re not here, we are here. And while we are here, how we treat each other matters. We can’t just throw everything to the winds and do whatever we feel like. For one, that’s actually a recipe for misery and unsatisfaction, even if it doesn’t seem like one. But also, it screws over everyone else we’re sharing the planet with in the meantime. And if screwing people over is bad even though each person you screw over will one day, individually, be dead, that isn’t actually changed by the entire species being dead.
There’s also this slide of inevitability that keeps us passive. One bad thing follows from the next bad thing follows from the next bad thing. We haven’t stopped it, so we won’t likely stop it, so let the next bad thing continue and go about our lives.
But the thing is. Again, even if it’s true we’re all universally doomed as a species (which it isn’t — yet). It doesn’t mean that we have to kill as many of us off as soon as humanly possible. Let’s say we knew that no matter what we did, nobody would be alive in 150 years. Would that make it okay to make a decision to just continue escalating things until it’s 75 years, and a huge bunch of people would die younger, and harder, and another huge bunch would never be born? Killing us off as soon as humanly possible because you didn’t think it would affect you personally whether it’s 75 years or 150 years because ou won’t be here is the kind of mentality that got us into this. If you don’t like it as things are now, how do you think your grandchildren or great-grandchildren will feel when they discover you could’ve at least ensured they’d grow up? How do you think the last people to die will feel when they know they could’ve had more time, could’ve faced a less extreme end?
But also, equally important when talking about human extinction is that humans are not and never have been the only life on the planet, or the only ones that matter. Very powerful people thinking humans are the only ones that matter, and only some humans at that, is a big part of what’s killing us. If we all die off, it still matters how many species we take out with us. It matters what we leave for the species most likely to survive us. We can’t just sit here and pull down the roof over our heads. That’d be like me deciding I’m dying anyway so I might as well blow up the whole hospital or something, who cares about everyone else there and what they might want. There has been life for far longer than humans have been around, and life will doubtless outlast us. Animals, plants, fungus, microscopic life of all kinds, all of these things deserve a chance. Failing to give them the best chance possible is like nuking your entire city because you’ll be dead from cancer tomorrow anyway. It’s selfish, destructive, and irresponsible.
So no matter what’s ahead — for you or for all of us — try like hell to contribute, to make the world better for other people, to stop terrible things from becoming even more terrible. Nothing gets us out of that obligation, ever. Sometimes we can do big things, sometimes we can do small things. But always try to find what you can do to the best effect, and do something. Hope isn’t always about knowing you won’t die right then. Hope is sometimes about knowing you could die, even knowing you will die, and doing the right thing anyway, because it’s still the right thing to do.
[This post was written recently. I kept it as a draft and planned to edit it. But I’m posting as-is.]