Posted in joy

Lindy gets head scritches.

This is after a lengthy conversation that covered topics such as:

  • Do tubes enjoy having liquids pushed through them?  Given that this is what they are designed for, they might well enjoy it.
  • Do tubes ever get bored?
  • Do the multiple available attachments help alleviate boredom?
  • Do tubes ever have a problem with being a tube, or are they free of that particular kind of angst?
  • What do tubes do for fun?
  • Do tubes enjoy having a wider variety of things put into them?

So then I just decided to give Lindy some head scritches because I’d do that for any pet, and that was a bit of a heavy conversation to spring on hir out of nowhere.

BTW to clarify:  When I say that I see objects as alive, this is not what I mean.  This, and anything with Lindy as my pet, is me playing.  Objects being alive is something much deeper and less “They’re just like humans and other animals.”  Objects are their own things, and belong to themselves.

The closest in all of this playing that I’ve gotten to the reality of how I see things is wondering about whether objects that are designed by humans and other animals (humans are far from the only animals who make tools and houses and such, after all), enjoy doing what they are designed to do.  Where ‘enjoy’ is a bad translation for a concept that doesn’t really exist in English.

I live in an apartment, for instance, that genuinely seems to enjoy doing what homes are supposed to do:  Having people live in it, making people comfortable, protecting its occupants, etc.  It both takes those things very seriously and enjoys doing them.  Which is interesting to me especially given that I know enough of the history of this building to know it was not always apartments, it was once a factory or something like that.  But I have never before lived in a home that so much wants to be a home and dedicates so much of itself to being one.

And I have lived in some very messed-up homes.  The house I grew up in had a terrible personality that seemed to encourage violence, strife, and being trapped.  Despite learned helplessness so bad that I often wouldn’t know I could run to get away from abuse, I dedicated a lot of my childhood to spending as much time outside that house as possible. And so did a lot of people.  Nobody really liked being inside it very much, which is probably one reason we got it so cheap.

Places and things do have personalities.  They’re not human personalities, they don’t work the way humans work, and anyone who uses the term ‘anthropomorphism’ and condescends at me about this risks getting virtually trout-slapped.  But ‘personality’ is again, the closest way to translate something that doesn’t translate well.  And some places have bad personalities.

The apartment I live in is the first place I’ve ever lived in that feels like a home.  Apartment, house, converted factory, doesn’t matter, this place wants to be lived in and wants to fulfill all the functions of a home for human beings.  It loves its inhabitants.  (Love, in this sense, is not an emotion.  Sorry for all the word explanations, but things like this are all very bad translations at best.)

And there are ways the tube is alive, but being a pet is part of a game I play with things sometimes.  The way I play such games may be connected in some way to my belief that everything is alive, but they are expressions of playfulness.  For lack of a better word.

I’m saying that because a lot of people when they hear I think “objects are alive” automatically think “anthropomorphism” and proceed to behave in extremely irritating and condescendng ways.  And by the way, please don’t throw the word ‘animism’1 around in these contexts with me either, especially if you’re gonna do so in a way that manages to be both racist and ableist at the same time.  Which it usually is.  Especially when you not only paint it in the most simplistic light possible, but describe it as a phase human beings go through before we really understand the world… I’ve had so many condescending explanations from so many people who have no idea what I actually mean, that it’s gotten ridiculous.

Anyway, cute tube gets head scritches!!!!  And that’s what matters right now.  Silliness is an important part of life.   TOOOOOOOOOOOOOOBS!


1 Also I don’t call myself an animist, just so you’re aware.  There are many reasons.  One is who came up with the term, why, and how it’s normally used.   Another is that whenever people tie me to an ‘ism’ it seems to come with ideological strings attached, so I’d be wary even if I didn’t think of the term as nearly always racist and often ableist.  (The term itself, not the intent of the people using the term, mind you.  This isn’t an accusation towards everyone who says it, just why I personally won’t use it on myself.  Words mean different things to different people and this is not a request for people to use words differently than they alrady do.)

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Posted in joy, medical

Meet Linden, my pet feeding tube ^_^

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:

An ENfit syringe putting coffee into a MIC-KEY button J-tube.
An ENfit syringe putting coffee into a MIC-KEY button J-tube.

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.

A dual ENfit extension on a MIC-KEY button J-tube, with a tube feed attached through a purple connector.
A dual ENfit extension on a MIC-KEY button J-tube, with a tube feed attached through a purple connector to one side of the connector.
A dual ENfit extension on a MIC-KEY button J-tube, with a tube feed attached through a purple connector, and a feeding/medication syringe attached to the other side.
A dual ENfit extension on a MIC-KEY button J-tube, with a tube feed attached through a purple connector, and a feeding/medication syringe attached to the other side.

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.

The cath tip syringe attachment for the MIC-KEY button J-tube.
The cath tip syringe attachment for the MIC-KEY button J-tube.

This one allows a normal 60 mL cath-tip syringe to put things into your tube.

Photo on 8-19-18 at 10.03 PM
A two-port tube extension, one for a cath tip one for smaller medicaion syringes, for a MIC-KEY button J-tube. There’s a 20 mL medication syringe attached to the smaller port, with hydrocortisone in it.

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.

A picture of my old feeding tube (the one that finally got swapped out to a decent tube on my birthday), which was not low-profile or modular or just about anything else useful other than just being a J-tube. My skin looks horrible in this photor for reasons, it's nowhere near that bad now.
A picture of my old feeding tube (the one that finally got swapped out to a decent tube on my birthday), which was not low-profile or modular or just about anything else useful other than just being a J-tube. My skin looks horrible in this photor for reasons, it’s nowhere near that bad now.

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.

This is the tube that gets surgically implanted by default. It's not a very good tube, it's flimsy, it's not modular, and I was infinitely grateful to be able to get it replaced on my birthday this year. I've had long experience with this kind of tube and most of it bad. It's a Halyard MIC J-tube, 12 French. Most of what's in the picture goes inside you so you don't see it, you just see the floppy part hanging out the top.
This is the tube that gets surgically implanted by default. It’s not a very good tube, it’s flimsy, it’s not modular, and I was infinitely grateful to be able to get it replaced on my birthday this year. I’ve had long experience with this kind of tube and most of it bad. It’s a Halyard MIC J-tube, 12 French. Most of what’s in the picture goes inside you so you don’t see it, you just see the floppy part hanging out the top.

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).

Screen Shot 2018-08-28 at 10.30.20 PM
A Halyard MIC-KEY button jejunal tube shown as the tube part on the right (most of that tail is inside of you so you only see the part above the balloon generally) and then some tube extensions (which help you put things into the tube) and otherequipment on the left. A MIC-KEY button is modular, so the part that is in your body is an entirely separate piece from the part you use to put things into your body. The internal part takes a procedure to replace (you could do it at home but it’s not recommended), but it rarely needs replacing. When the external parts wear out, you can replace them quickly and cheaply without requiring any procedures or even contact with medical people. The lack of dangling parts contributes to how long-lived these tubes tend to be.

So meet Linden again:

A MIC-KEY button J-tube on a large somewhat scarred-up belly with ostomy bag behind it.
Say hi to Linden again!
Linden with hir makeshift paper towel dressing.
Linden with hir makeshift paper towel dressing.

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.  ^_^

 

 

 

Posted in Being human, joy, medical, music

Who am I when I can’t do…?

Mel wearing headphones with shadows falling over parts of hir face.
Mel wearing headphones with shadows falling over parts of hir face.

I hate being reduced to a pile of medical problems.

I don’t care what guise it comes under, either. I’m not your intriguing case. I’m not a two-dimensional prop in your medical detective story. Or your medical melodrama about brave people who buck the system and discover the truth. Or your very private psychodramas you want to act out with me as little more then a living doll.  And that includes “positive” versions of originally medical ideas — if you reduce me to any diagnosis, no matter how positive you think you’ve changed it into, you’re still reducing me down to something I’m not comfortable being reduced down to. It’s why I’m not comfortable with communities that’ve basically grown out of a single medical label, no matter how they believe they’ve transformed it.  At any rate, if you want to reduce me to medical crap, whether you think it’s good or bad — I’m not fucking interested. If you reduce me or my life to medical issues you’ll rapidly find yourself being ignored or tolerated at best.

But sometimes it seems like things close in, and all there is time and energy to think about is the next medical thing. And I start wondering, is this all there is to me? Is my life just one medical crisis to the next and holding myself together with strings and baling wire in the meantime? You don’t want to know the sanitary conditions I’m living in right now, the compromises I’ve been forced to make for survival. If you’re physically disabled you probably have some idea either from your own life or that of your friends. The shit we do to survive and live free at the same time. It’s criminal that we’re forced to live this way. I have an elderly family member I probably inherited my congenital myasthenia from, they describe crawling around the house when they can’t walk, and can’t get up off the floor, and you don’t want to know how they drive a car sometimes. They’ve coded before, I worry about it happening far from help next time.

Anyway, eventually the world closes in and all you can think about is medical shit. Explaining it to people over and over again. Doing medical shit you need to do to survive. And it feels like there’s nothing left, nothing left to you, everything’s gone.

It’s scary.

And it doesn’t help when that’s essentially how lots of people see you. As just a pile of flesh with a lot of medical problems. You start to go crazy. You start to wonder if there ever was anything more to who you are. Medical shit can fuck with your head in huge ways.

The medical way of seeing us is incomplete. It doesn’t include the things that make us people. Those core things that really matter. So if this shit gets into your head, you can’t see those things about yourself either.

The important parts of the world never go away. They are literally everywhere, embedded in everything. Including us. When we can’t feel them or perceive them, it’s always because something is blocking our view. Not because they’ve gone anywhere.

It’s easy to get caught up in the bullshit we are fed, too. Like that we aren’t real people, not the kind that matter, unless we can make a contribution that fits in with capitalism. Like something that pays money. And people with lots of medical shit that takes over our lives to this extent are seldom fully employed. So that can eat at us too, that knowledge that whatever we contribute to the world will never be good enough to count.

But we do contribute valuable things to the world. Just existing is its own contribution, but people contribute more than our existence. Each one of us is uniquely positioned to make very specific contributions to society, whether we are trying to or not, whether we are aware of it or not. Real contributions often go unnoticed even by the people making them.

And we get so caught up on what we do, that things get unpleasant when all we can do is whatever it takes medically to ensure our continued survival. Who am I when this is all I can do?

At first I fall back on connections to place, people, family, culture. I am a child of Redwood Terrace. I am an Okie and a Minnesota Swede. I am a Californian. The landscape of California, from the cliffs and ocean of the Monterey Bay to the bare yellow grass hills with oak trees, to the redwoods of San Mateo County and Santa Cruz County to the converted swamp / desert / farmland of the San Joaquin Valley to the paved-over orchards of Silicon Valley, these things are burned into my DNA almost, they go in so deep. The graves of my recent ancestors, in Shafter and Wasco cemeteries, places likely to become uninhabitable soon. My father’s grave in the Siskiyous. All the objects my father gave me that point like a giant beacon to who he was, who he is now that he’s merged with love and become something different.

These things are important. Connections are important. And no matter how difficult and dysfunctional our families get, family is always a part of you, a connection you can’t sever, part of who you are. I try to remember my grandfather’s violin, to remind me family is family and the worst things about it can still yield surprising moments of love and beauty.

I’m still the bleakest optimist I know. I can look into a pile of shit and find something worthwhile, but I still don’t shy away from it being a pile of shit. This confuses people. I continue to believe this skill will become vital to the survival of lots of people in the world today, though. Discounting the good or pretending the bad isn’t there will lead to disaster.

Anyway, family, culture, place, they all provide a firmer foundation than what you can do at any given moment. No matter how messed up that family, culture, or place is. But there’s something far more basic and far more important:

You are a small piece of the world. A very particular small piece of the world. You have a place, that’s specific to you and who you are. Everything from your best qualities to your worst faults are part of this. You are connected to everything and everyone else. Who you are and what you do, matters. You are always, always connected to the deepest parts of reality. They are a part of you, you are a part of them. You may not be able to feel that at any given time, but all that means is something’s obscuring your view. This is always there.

You are always so fucking much more than a set of categories, shitty circumstances, or ideas. And more than a set of medical problems or any other kind of problems. You are exactly no more and no less than a tiny expression of the deepest and most beautiful parts of the world.

And if we have anything we are meant to do, it’s to express that the most clearly with the least bullshit obscuring it as we can, which may be the most difficult thing in the world to do, but also the most important. But that’s not something we can or should be constantly freaking out about. Just something to keep in mind.

And sometimes the hardest times bring out the most depth of beauty in the world in weird and unexpected ways. Other times they’re just hard. But the world is a strange place. And you do have an exact and important place within it that nobody else can fill, no matter what anyone tells you, even yourself.This little piece of the world is who you are no matter what you can or can’t do. And this little piece of the world may be little but it’s also important.

I was writing this post, it’s taken me days. And I came across the perfect song to express part of what I’m talking about. I’m a huge Grace Vanderwaal fan for reasons. And she wrote this song that’s about those amazing parts of the world we can just forget are there entirely. And — those amazing parts of the world — we are a part of them, they are a part of us, and that’s who we really are, who we remain, regardless of what we can or can’t do at any given time.

So here’s the music video then the lyrics:

Sit right here, chillin’, level low
Close your eyes and just let it flow
Right next to me I hear your heart beat, beat
When the dial turns up and the music starts playing
We don’t realize in this society
Doesn’t matter how your hair looks or what they are thinking
Just, just what we are finding

Tap your foot and listen in
Ignore the world, let the music cave in
Close your phone and breathe in the air
You’ll soon realize that there’s something that is
So much more than this
It is what it is
So much more than this
Oh, oh, oh, oh, oh, oh (hey)
So much more than this
It is what it is
So much more than this
Oh, oh, oh, oh, oh, oh

The whole crowd seems to like me now
‘Cause they think I’m cool but back when I was in school
They found it very easy to hate me
Funny how always these times are changing
Back then it was so easy to shatter
But now in the end it doesn’t really matter

Tap your foot and listen in
Ignore the world, let the music cave in
Close your phone and breathe in the air
You’ll soon realize that there’s something that is
So much more than this
It is what it is
So much more than this
Oh, oh, oh, oh, oh, oh (hey)
So much more than this
It is what it is
So much more than this
Oh, oh, oh, oh, oh, oh

All of the talk, and the talk from ya
Won’t even matter when the lights come up
All of the talk, and the talk from ya, hey
Open your eyes and just wake up
Do all the things that will matter to ya
Open your eyes and just wake up, woah

Tap your foot and listen in
Ignore the world, let the music cave in
Close your phone and breathe in the air
You’ll soon realize that there’s something that is
So much more than this
It is what it is
So much more than this

You’ll soon realize that there’s something that is
So much more than this
It is what it is
So much more than this
Oh, oh, oh, oh, oh, oh
So much more than this
It is what it is
So much more than this
Oh, oh, oh, oh, oh, oh

Wow, that kid has more kitten wisdom packed into her than you normally see in a child.  She reminds me so much of Igor, right down to the ability to unfailingly be exactly who she is, even when she doesn’t appear to know.  (Kitten wisdom is what I call the kind of wisdom that often comes with youth rather than the kind that sometimes grows with age.  And Igor and Grace Vanderwaal have a ton of it.  And remind me of each other in ways I can’t articulate.  Also some of her dancing in that video is perfect.)  And I love that she writes songs about being a child her age rather than just singing artificially weird children’s songs written by adults, or just adult songs.  It’s weird, though, that this should be unusual enough to comment on.

Mel wearing headphones.
Mel wearing headphones again.

Anyway, that place that’s so much more than this is always right here.  And we are always so much more than this, so much more than we’re told we are, so much more than a role or a category or a collection of frigging problems and labels and crap.  Because we’re not separated from that place, ever, we just sometimes feel like we are.  But it’s always there, and we’re always part of it.  The stuff that makes us think we’re not, is all confusion and illusion of various sorts.

redwood terrace fungus 01
A tree with moss and fungus in Redwood Terrace photographed by my best friend.
Posted in Being human, death, family, joy

My cat has scattered my dad’s memorial shrine again.

There’s very little he’ll leave alone, if given the chance.

My father's memorial shrine, with the picture knocked off-kilter, only one rock out of dozens, and a few of his childhood belongings including a small denim treasure bag and a couple wooden toy swords. The slide rule is not visible, and the other slide rule is missing. Lots of things are missing or moved from where they should be.
My father’s memorial shrine, with the picture knocked off-kilter, only one rock out of dozens, and a few of his childhood belongings including a small denim treasure bag and a couple wooden toy swords. The slide rule is not visible, and the other slide rule is missing. Lots of things are missing or moved from where they should be.

But the more I think about it… I like having a memorial shrine, I will put it back together again, but the cat will knock it over again unless I buy some museum putty or something, which I’m not sure I’m willing to do.

And the more I think about it, the more fitting it is that my dad’s things are sometimes all over the house, reminding me of him in everyday life.

I sleep with his rocks in my bed.

I wear his clothing.

I find things he owned everywhere.

I use his tools.

I’ve said before that objects are my best form of communication.  With my father, this is true.  All of his things don’t just each remind me of him. Each one had a specific relation to him.

Taken together, they point back to who he was with the precision of a laser beam.

And they will do that whether they are properly arranged on the shrine or scattered everywhere by the cat.

And I love remembering my father.  I love finding him in my current life, in who I have become.  I love relating to him in an ongoing way even though he is dead.  Because who he was can’t be erased and his influence on the world still exists and will always exist.

I don’t idealize him the way some people do when someone dies, though.  I remember the worst parts about him.  But I don’t feel like I’d be remembering him if I did otherwise.  It would feel like an insult to his memory to turn him into an image of something he never was.

But I also don’t feel the horrible feelings most people expect with grief, for the most part.  I feel like he is still in my life, just not present.  His things remind me of who he was, and his influences and actions ensure he’s still around in everything I do.  I still have an ongoing relationship with him.  Most of the time I remember him with joy.

Bottom line is, I love my father.  And maybe sometimes overzealous kittens make you put things in perspective.  Remembering my father is not confined to one part of the house, it is integrated into my life.  Memorial shrines are a good thing, don’t get me wrong, but having them disrupted can make you think.

 

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 culture, family

It’s not a cowboy hat or an adventurer hat or a costume.

People react a lot to my hats.

dadhatanother
Mel wearing a brown brimmed hat I wear all the time.

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.

ancestors with hats
Some of my Okie ancestors, with hats.

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.

Ron holding baby Mel.
My dad in one of his hats holding me as a baby.
Dad squatting in woods
My dad squatting in the woods in one of his hats.

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.

Me in my dad's clothes
Me wearing my dad’s clothes and hat, feeling utterly natural.

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.

Photo on 3-2-18 at 2.58 PM #3
Mel slouched over in bed wearing my dad’s clothes and hat, with my cat Igor looking on.
orangeshirtdadhat
Mel wearing one of my dad’s orange shirts and hats.

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.