Posted in Being human, joy, medical

The joy of J-tube feeding.

Picture of Harriet McBryde Johnson, next to the quote, "We need to confront the life-killing stereotype that says we're all about suffering. We need to bear witness to our pleasures."
Picture of Harriet McBryde Johnson, next to the quote, “We need to confront the life-killing stereotype that says we’re all about suffering. We need to bear witness to our pleasures.”

For decades, little noticed by the larger world, the disability rights movement has been mobilizing people from the back rooms and back wards, along with more privileged people like me, to speak plainly about our needs. We make demands. We litigate. Run for office. Seize the streets. Sit through the meetings. Mark up the drafts. That kind of work has changed the world and we need to continue to do it.

But we need to do something else besides, something that may be difficult but is, I think, vital. We need to confront the life-killing stereotype that says we’re all about suffering. We need to bear witness to our pleasures.

I’m talking in part about the pleasures we share with nondisabled people. For me, those include social engagement of all kinds: swapping stories, arguing hard, getting and giving a listening ear. A challenging professional life. Going to movies, concerts, and exhibits. Wearing a new pair of earrings. Savoring the afternoon hit of Dove dark chocolate. I enjoy those pleasures the same way nondisabled people do. There’s no impairment; disability makes no difference.

But I’m also talking about those pleasures that are peculiarly our own, that are so bound up with our disabilities that we wouldn’t experience them, or wouldn’t experience them the same way, without our disabilities. I’m talking about pleasures that may seem a bit odd.

Harriet McBryde Johnson, Too Late To Die Young,

This one may take some explaining.

So I’m fed through a J-tube, short for jejunostomy tube.  That means a tube that delivers food directly to my small intestine.  This bypasses my stomach, which is partially paralyzed and may as well be a dead end where food is concerned.

So I don’t taste food, and I don’t feel the sensations of food in my stomach.  Instead, liquefied food goes into my intestines through a feeding pump, very slowly.  It has to go slowly because while your stomach can expand to take a whole meal, your intestines can’t.  So you have to drip it in slowly, usually over a period of hours.  Some people have to do it 24 hours for a full feeding, while other people can go faster.  I used to do 24-hour feedings, but now I do 8 hours or less depending on how I’m feeling.

I get two kinds of food.  One is a formula called Osmolite.  The other is homemade vegetable soups.  I cook the vegetables and put them in a high-tech blender that can liquefy anything.  Then I strain them through a chinois so they can’t possibly clog the tube.  The vegetables provide nutrients that the Osmolite does not, and help prevent c diff, which I got when I stopped eating vegetables this way.  For more information on the risks of c diff in people who are tube-fed formula without vegetables, you can read the paper Tube feeding, the microbiota, and clostridium difficile infection by Stephen JD O’Keefe from the World Journal of Gastroenterology.  Bottom line: The vegetables don’t just make me feel good, they also feed all my little symbiotes that help prevent c diff.

Mel eating by J-tube from a full feeding bag of asparagus and split pea soup.
Mel eating by J-tube from a full feeding bag of asparagus and split pea soup.

So here’s the joy part:

I think most people experience this feeling, but they never get to experience it alone, so they probably don’t notice it.  Most people’s experience of food is wrapped up in sensations of the mouth and stomach.  Taste, texture, smell, fullness.  I don’t get any of that.  Which means I get to isolate a joyful and amazing feeling that most people never get to experience on its own.

There is a feeling when you are digesting a food that is truly good for you.  I get it from digesting vegetables most of all.  Here, I am eating asparagus and split pea soup.  The feeling is one of intense satisfaction, of rightness, of a subtle but inescapable pleasure that covers your entire body.

And once I am digesting this food, I get to feel that way without anything distracting me.  No taste, no texture, no sense of fullness.  Just the joy of digesting something my body very much needs.

I don’t think people who are fed by anything other than J-tube ever get to experience this feeling on its own.  It’s an amazing feeling.  I bet that if you ignored other sensations, you might find it underneath everything.  But it’s a unique experience to feel it on its own.  And that comes directly from being disabled and needing to bypass all the usual routes of food to your body.

Osmolite makes me feel like crap by the way.  I’m thinking of going rogue and designing my own diet.  But that would take a lot of work, so I’m not doing that right away.  (I have other reasons too, like my high diabetes risk and the lack of formulas that address that until you already have diabetes, which I’m trying to avoid.  It would be easier to design a diet similar to pre-diabetic diets, with specific attention to stuff that feeds your friendly symbiotes as well.  There’s a lot of foods that overlap there, like resistant starches.)

People think that tube-feeding, especially J-tube feeding where you don’t even get to feel a full stomach, takes all the joy out of eating.  But I have learned that when I digest foods that are good for me, I feel an intense kind of joy that I’m not sure most people ever get to feel as directly as I do.

And that’s what Harriet was talking about, these pleasures that are specific to being disabled.  Not joy in spite of disability but joy because of disability.  They are very real.  And in a world that sees disability as nothing but tragedy and suffering and a fate worse than death, they matter a lot.  Especially to people with feeding tubes and other things people are sometimes so terrified of they’d rather die.  I love life, I love my feeding tube, and I love the unique joy of eating delicious vegetables through a J-tube without the distractions of my mouth and stomach.

 

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.