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
Nearly every night, I walk around my apartment in the dark. It’s easier to find my footing without the distraction of eyesight. I can feel my legs, my feet, the floor, the ground, the things that lie beneath. I touch the walls to better feel the building itself. Like all buildings, it has a personality. I find and touch the oldest parts of the building, wooden pillars in seemingly random places. They stretch from the bottom of the ground floor to the ceiling of the second floor.
I explore my whole apartment in the dark, all the time. These days, sometimes I cry. People don’t understand what this place means to me. It’s more than any random home, which would mean a good deal already. I have so much more to lose than I used to know was possible.
The dark allows an intimacy with the house that would be impossible in other circumstances. I can feel the way it wants to be all the things the best houses are. It wants to be a home, a real home. It wants people to live in it. It wants those people to be happy. It wants to protect them and make sure they’re safe. It wants them to be comfortable. It wants to be a haven, a place of refuge, a place of joy. And it genuinely loves the people who live in it.
I’ve never lived in a house that was a home. Let alone one that wanted to be a home with every fiber of its being. I grew up in a house that wanted to start fights, to make violence worse, to scare and hurt and trap and imprison. It was such an unpleasant place that even from a young age I’d put myself through things I hated, like sleepovers, as long as they’d let me avoid the house. I never understood homesickness, only its opposite: dread that I’d be trapped there forever. I still have nightmares not about people or events but about being trapped alone in that house, unable to get away from it for the rest of my life. So I’m well aware that not all houses have the personality to be a true home, and how lucky I am to have found one.
I don’t normally watch horror, even cheesy horror. But I did watch every episode of Buffy. And only one truly got under my skin. It had a monster that lived in a hospital. You could only see it if you were crazy, delirious, or neurologically impaired. It sat on the ceiling above your bed and terrorized you while everyone else thought you were just hallucinating. Then it ate you.
Of all the things they showed on Buffy, that’s why I usually sleep with all the lights on. Embarrassing but true. When the lights go off, my brain starts imagining that damned ceiling monster.
The dark has always been a refuge from the pain, nausea, and chaos I associate with vision. It’s a place of calm and belonging. A place where things make sense and move slowly enough to understand. Where I can pick up all the shards of a world that comes through so fast it shatters inside my head. And just stare at the stained glass colors if that’s what happens. Or slowly put each piece back together in something like its original shape, so that something I saw earlier finally makes sense. The darkness itself feels alive, a warm and friendly presence: “Here in the shadows where everything blends, the darkness and me are the closest of friends.”
This house makes it so I can be in the dark again, comfortably, and not be afraid of the ceiling monster. The house protects me and makes me aware I am protected, even from my own fears.
I’m not sure how often I’ve said this explicitly on this blog, but religion is central in my life and redwood forests are central to my religion. The connection I have with the particular forest I was born in, Redwood Terrace, is important to my ability to practice my religion. And while it’s true that this connection exists no matter where I go, it’s also true that it’s much easier to be immediately aware of that connection in some places than others. Like a lot of things in this realm, there’s no real way to explain it, things just work like that.
Anyway, I find it easy to feel connected with Redwood Terrace from my apartment. Something is different about the ground around this building compared to other places around here. The apartment itself seems to help me connect with Redwood Terrace, as well as it seeming to have developed a friendship and connection with my best friend’s house, which has a similar personality. All of these things mean I’m more able to practice my religion in this particular home than in any other home I’ve lived in. And that matters, even if I can’t explain to you how it works or why.
I’ve got so much more to lose than I ever imagined was possible. It’s no longer just a matter of having my own place. I have my own place that I love and that loves me back. That puts things on a whole different level. I have an entire relationship with this place. It would be bad enough if they were trying to make me leave my home, any home I’ve ever had before. After all, there is never a valid reason to make anyone leave their home on the basis of disability. But now it’s not just my freedom I could lose. It’s an entire relationship with a place that matters more to me than I can explain.
Nobody should ever have to explain or justify why they want to live in their own home. Nobody should ever be told that a perfectly normal desire to live at home is
in any way deviant, selfish, stubborn, denial, unrealistic, or unreasonable. And our society should no more accept this response to disability than we accept Victorian workhouses as a solution to poverty.
But even if I shouldn’t have to explain, I do want to explain what my home means to me. Having my own place already means a lot more to me than I can express. And I’m not really able to write about that at the same time as writing about my specific home. But having a specific home I’m very attached to, means I have so much more to lose.
You can’t just replace one home with another, any more than you can replace a human being with another. Even when you don’t mind moving, even when you choose to move, the new place is not the same as the old place. It should always be a choice.
It’s wrong for one person to have the power over another that it takes to tell them their disability means they have to leave their home. But it’s also wrong to use that power if you have it. And each person who uses this power over another human being, bears some of the responsibility for the damage done. And there’s always damage. Taken as a whole, the removal of disabled people from our homes is a large-scale crime against humanity.
Participating in such a thing isn’t trivial, no matter what your role. Maybe you make the policy. Maybe you enforce it. Maybe you grudgingly go along with playing it out, but you play it out on us nonetheless. Maybe you persuade us to give up ourhomes and move somewhere else. So many things you could be doing, but it means you bear some responsibility for somethin terrible. You can’t escape that. I can’t sugar-coat it for you.
This is my home.
That’s all there is to it.
This is my home. And anyone who participates in trying to take it away from me, is doing something terrible.
Because this is my home. Living here is my right. Having the assistance required to live here is my right. Nobody gets to chaange that. And anything that calls itself the Home and Community Based Services Waiver should never include services of a type that force or coerce anyone to move out of their own home. They’re not home and community based if they force you to choose to leave your home and community for somewhere else, no matter where that somewhere else is located. This is my home, you can’t just exchange it for another and pretend they’re the same.
Generations of self-advocates with developmental disabilities have fought for the right to live exactly where I am living now. Lois Curtis fought for this. Elaine Wilson fought for this. They were two women with developmental and psychiatric disabilities, and don’t forget it. They are what the Olmstead decision was all about. Everyone has fought for this and I will not give it up lightly. I will fight for it for me and for everyone who comes after me. And it doesn’t matter if you don’t understand what it means to grow up thinking you’ll never live in your own home, but I did grow up that way and it nearly killed me. I don’t want any child ever growing up again believing they’ll never have a chance at freedom and a home of their own if they have a disability. My apartment may not mean much to anyone else but it means the world to me and that’s the only thing that matters here.
This is my home. You don’t get to tell me that’s not important, or that giving it up is inevitable or necessary. I know better. I know my rights. THIS IS MY HOME. And this is how much I have to lose. And more. I will fight to stay here with everything I have in me, and never stop fighting no matter what happens. Because it’s not just my home at stake. As long as any disabled person can be told their disability is too severe to live at home, none of us are truly free, because true freedom isn’t conditional. THIS IS MY HOME.
This is a reminder that not everyone on the Internet speaks to communiate and some of us use picture symbols to write.
Shortly after I came home from the hospital, I stood outside next to a tree. I leaned on the tree because the short walk had wiped me out.
I felt my entire body at once. I was shaking. I felt like the thinnest and most fragile leaf, with holes in it. I started to feel transparent.
Light shone through the transparency that affected everything. With it, love, connection, change, truth, things that can never be named or described. Still aware of my entire body at once, the immense struggle it took to physically continue on any level. How close I was to death. Light through the leaves on the tree above me. Light through me invisibly, through everything.
I understand important things through the workings of the redwoods. Things without names, things without words. Redwood Terrace is holy ground embedded in my soul. Under my feet is earth, and roots, and many things unseen. And a connection to Redwood Terrace, outside time. And I am there, as well.
The fungal mycelium people never think about, under their feet all the time. Life, and death, and life, connected, changing, moving, things becoming parts of one another. An old, familiar, comforting promise: If you die this time, if you must step over that edge, we promise, we promise this is in store for you on every level, and if you want, we will eat you, we will change you, you will become life for so many, and on it goes, and this is love, this is our offering to the world.
If I knew I was dying and there were no consequences to these acts, I would put my last ounces of energy and effort into going to Redwood Terrace. I would find a hollow tree or the closest thing, curl up, and wait. The end might be painful, terrible, messy, but nothing is tidy about dying and none of us is guaranteed it will be easy. I would die in the place I have the most connection to. My last act to offer myself over to that place, body and soul. Everything from microbes to plants to animals to fungi would have a feast and I would turn into life, and things would be happening on levels that have no words and can’t be spoken of.
I will never do this. The person who found me. The pointless waste of resources looking for a crime that never happened. These are enough reasons, and there are more. But it’s what I’d want. I’ll settle for being composted and the results returned to the ground as close to the Mother Tree as possible. Nobody is guaranteed the life we want or the death we want. But that is the death I want.
But as I stand there I am aware of that promise, aware of the ancient threads under my feet tying death and life as essential parts of each other. Aware that should death happen there is beauty and love, not fear. How everything left of me can be absorbed into new life and timeless love. Aware how close I stand to the line, aware of the silent, patient presence of Death.
Death by now is an old friend. I’ve had too many close calls not to become acquainted. I once spent five weeks pretty much abandoned to live or die in a series of hospital rooms where for the most part I was unwanted. Doctors have said they’re surprised I pulled through without the ICU that time. I was alone for vast stretches of time, I was delirious and terrified. Death was there, though.
And I came to know Her as kind, caring, a friend. She was in no hurry. She can wait forever, She’ll find all of us one day. But when you sit close to her, sometimes you have choices nobody talks about. Where you could go with Her right away, or try and stay. And nobody would know. Trying to stay alive doesn’t guarantee life of course. I chose Death’s companionship, which doesn’t mean choosing to die. But every time, I chose to stay alive.
It’s odd that a vivid picture has formed in my mind of what Death would look like to me if she were human. She looks very much related to me, like an ancestor I’ve never met who strongly resembles many people on my father’s side of the family. Very old with long white hair. I guess she has some qualities in common with George McDonald’s multiple-greats-grandmother character in The Princess and the Goblin series. She’s very powerful, has the potential to be very kind and loving, and does not actually bear any ill will towards the living.
But She isn’t human and I imagine She looks different to everyone. I’ve never seen Her with my eyes, only had this vivid image of how She would look if human. But really my encounters with Death are more wordless and imageless and impossible to put down in writing, including that endless five weeks of Her. But I can feel when She’s hanging around me, and so can some of my friends. It always means something has slipped too close to completely guarantee survival.
Most people think of the survival instinct as something rooted somewhere in the brain. And there certainly is one there. But it goes deeper than that. All life from the first single-celled organism tries hard to live. Being alive is extremely difficult and takes work and energy. Without some drive for survival, nothing would bother. Every living thing has some version of this drive for survival.
And I am not just a brain, and my brain is not separate from my body, and my body is not just a carrying case for a brain. I’m made of all these cells, some working together, and all kinds of things. Each wanting individually and collectively to live. When I say I chose life, I don’t just mean my thoughts chose life. I didn’t always have enough thoughts to string that kind of choice together. My whole body chose life and fought hard for it and that’s why I’m still here. It seems arrogant to reduce myself to the little part of me that sits and reflects on things, then claim full credit. There’s nothing like delirium to show you the brain is just another body part. And when my mind wasn’t functioning right the rest of me still fought like hell to be here.
I’m well aware the things I’m saying could terrify people. But they are real for me. Death is welcome in my life. This is easily misunderstood, though. I don’t have a death wish. I used to. A grinding, unrelenting one that tormented me every second of the day and caused a big conflict with my survival drive, which I alternately thanked and cursed. That was a long time ago. Certainly long before I befriended Death.
Coming to know Death intimately has been one of the most life-affirming things I’ve ever experienced.
The last time I saw my dad, he flew out to see me in Vermont. I was in my early thirties, he was in his early seventies. Older than just about any man on his side of his family ever got. Both of us were dealing with serious health problems. We never said it, but we knew we’d never see each other again.
I think he’d only heard secondhand and thirdhand about how I was doing, for a long time. Neither of us were big on phones or emailing at the time. He’d gotten some weird ideas into his head over the years. But they’re pretty common weird ideas to have.
At the time, I’d been very sick for years. Doctors really didn’t know what was going on, despite looking. I’d bounced in and out of the hospital. They’d find out pieces the hard way, but something more was always going on than what they’d expected. They could never really figure out what. I’d always get sicker than I should under the circumstances. At home I was mostly in bed. I’d use a tilt-in-space powerchair if I got up, but every second was exhausting.
Anyway, I wasn’t constantly looking for a cure. I wasn’t holding out hope that one day someone would figure out everything, and my life would be better. And longer. And easier. Or whatever. That just wasn’t where I was focusing.
Somewhere along the way, he’d mistaken that for giving up on life. People do that. They don’t get it. At all. That that isn’t even the thing. I wasn’t depressed or hopeless. I was reasonably happy. I didn’t have a death wish. I hadn’t accepted my fate that I was just gonna die and that’s what happens to people like me. It wasn’t any of the stories people tell themselves about disabled and sick people to make themselves feel better. And I wasn’t doing what some disabled people do, I wasn’t repeating those stories back to myself.
I just wasn’t on their map of life at all. And most people, they don’t want to look too hard at the place I was. It scares them.
Anyway, my dad was genuinely worried about me. I wanted to make him understand. And I struggled to find words.
I told him I’m not waiting around to be alive.
I’m not staking my happiness on something that does not happen to most disabled people, ever.
I’m not staking my happiness on certainty. Even healthy people don’t have the certainty they think they have. Nobody does. You can’t actually ever be happy that way, because you’re grabbing something that’ll never be there, unsatisfied without it.
Honestly I’m not even staking what I want to do with my life on happiness. I’m reasonably happy, but if I’m not, I’m not gonna wait around to be happy before making a contribution to the world.
Because there’s nothing more that close shaves with death and living long periods of time with Death as almost some kind of companion that’s nearby but not quite there, has done to me, than made me want to do things for other people. When I can, of course. And not in the weird sense like you have to have a job to do that, because that’d be ridiculous.
Anyway, I was insisting pretty forcefully that I don’t know how much time I have and I’m not gonna spend that time waiting for something that just does not usually happen to people. I’m going to do whatever I can with whatever I can to live the life I can, like anyone else. I’m not different. And I’m not fucking waiting around to be alive, especially if I don’t know how long I have.
I was pretty intense and fierce and passionate about this and he could see that.
And something shifted.
He went from seeing me as giving up on life, to someone who was living my life.
And I think he finally went from seeing me as a child he worried about to an adult he thought was gonna be okay.
I don’t remember what he said either.
I just remember you could feel the air shift, like he had not even realized what I was doing was a thing you could do. And as soon as he understood, he knew I’d be fine no matter what happened.
We hugged, and we cried, and he left.
He died before I ever saw him in person again.
I… wasn’t cured. But they figured out what was going on. Really three things that were going on, one thing after the other after the other. One I’d been born with, one probably developed ages ago, and one had started recently. And they treated or modified my body to handle those things. And I’m still alive long after I would’ve been if they hadn’t.
I’m not cured.
My life is not any more certain.
The treatments have their own risks.
I’m alive right now and that’s all any of us can say.
But my health is precarious. It always will be. Everyone’s is. Mine is much more obviously and easily.
And all of us have to make a life where we are, not where we might have maybe could’ve been in the future sometime if we hoooooooooope enough for a cure.
Like yeah if they can do something that’ll keep me around awhile, I’ll do that, and I’ll adapt, like I already have. But knowing how limited time can be, I’m sure as hell not gonna spend that time just waiting. Even when I can do nothing else but keep my body breathing and my blood pumping and I look like I’m waiting, I’m still living. Life hasn’t gone anywhere.
And really what already happened was extraordinary and rare. The chances that all things came together so that I was still around and they happened to be looking in the right direction to figure things out (especially since they’d already tried those directions before, but wrong, and figured they’d found nothing)… that really doesn’t happen to too many people. It makes a good story. People like to find it inspirational. It’s not. I got extremely lucky. If people sit around being wistful about that not happening, and not doing life in the meantime no matter what it looks like, they’re gonna have problems whether it happens or not.
And to be clear — I’m not half dead. I’m not partially dead. I’m not dead but still being kept alive. I’m right here.
But I’m alive. Until I’m not. Like everyone else. My body and my health and all that doesn’t change that in any way. I’m not less alive, partially alive, technically alive, creepy-artificially alive. And that’s gonna stay true no matter what until I’ve actually got a toe tag, guys.
(In which case have me composted and dump as much as you can of the results in the ground in Redwood Terrace as close to the Mother Tree as you can get, if you want to know. But not until. Geez. I have all the time in the world to feed trees and fungus and crap, and I’m glad to do so, I think it’s a wonderful thing in fact, but I have to actually be a corpse first. And there’s plenty of people who seem determined to declare me a corpse while I’m still breathing. And I will fight them as hard as I can as long as I can for me and others.)
But right now. I’m alive. And I’m not gonna spend my life waiting for a cure that’s unlikely to happen. I’m living right now. Always. I don’t wait to be alive. And as soon as my dad realized what I meant by that, he knew I was gonna be okay no matter how long I had left.
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.