Posted in Being human

I’m never waiting to be alive.

Dad holding Mel as a kidThe 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.

Posted in Being human, Nature

Living stumps and the living dead: Feeding tubes aren’t unnatural

Mel wearing a hat, jeans, and a Green Mountain Self-Advocates t-shirt, with feeding tubes showing, standing next to an IV pole with a feeding bag on one side and a potted succulent on the other. There is an elaborate crocheted wall hanging showing different parts of the forest floor on a redwood forest. Including soil, water, slime molds, fungus, tree roots, plants, slugs, a snail, a newt, redwood cones, and random forest debris.
They say this is unnatural…

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:

A living stump next to a tree that is keeping it alive through its roots.
…I don’t know anyone who wouldn’t call this natural.

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.

Further information:

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.