Posted in Being human, cats, joy, Uncategorized

Friendship and Love and Resonance and CATS! A closer look at that picture.

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Anne, Mel, and Igor, all with the same expression somehow a bit and looking kinda cattish.

It’s good to see friends.

I remember what’s underneath the visit.

I remember pain and stuff.

I remember emergency speech.

I remember what’s underneath though.

And that’s what matters.

Underneath there’s me and Anne and everyone.

I love Anne.

I love Cal.

I love Joelle.

I love Ruti.

I love Laura.

I love lots of people I haven’t named.

I rarely get to talk to my friends. Even online. We rarely keep in touch. We all have huge trouble doing that. It’s the worst part of inertia.

I hate the myth that we don’t or shouldn’t need friends. It’s fine not to. But it’s totally okay to want and need people in your life and most people do, even most loners.

I hate the community norms in some places where it becomes almost a macho one-upmanship thing to show how unsocial you are. Like… I once described it as “A whole bunch of people socializing by competing about how much they claim to not need to socialize.”

It’s okay to want to socialize.

It’s okay to socialize.

Never let a label determine what you think you should want.

Not even a label you like or that is useful to you. If it starts ruling you instead of you using it something’s wrong.

Someone once told me “You’re allowed to want people in your life, you’re just not allowed to need them.”

I knew where she got that. And it was not from someone who said “allowed”. It was from someone describing their own experience only. But somehow other people turned it into “allowed”. And that’s bad.

Anyway.

It’s okay to want people in your life.

It’s okay to need people in your life.

Both of these things are equally okay.

It’s okay to like people.

It’s okay to love people.

It’s okay to socialize however you want to as long as everyone involved is really okay with it.

There’s a terrible kind of isolation very few people admit exists.

In systems like the developmental disability system sometimes all the people you ever see are staff.

For those unaware staff doesn’t mean what it seems to mean to most people. For DD people having staff means having people with lots of power over you, it’s the people who are supposed to be taking care of you. But they may or may not be. And whether they’re amazing or terrible and helping or hurting or whatever — they have power over you that you don’t have over them. Nobody can wish that away or make it go away just by wanting it to or trying. The power is built in to the job.

And sometimes every single person I interact with for months is staff.

I actually usually like staff.

But.

They’re not the same as friends.

Not the same as strangers either. It’s a personal relationship and pretending it’s not doesn’t work any more than pretending it’s a friendship works.

But it encloses you in the agency.

It wraps around you.

If all you see is staff.

All you see reflected back at you has an agency distortion.

Even if every single person individually sees you as a person.

This still happens.

It’s just not the same as having friends.

And.

I started having friends again.

Ruti. Joelle. Cal. Anne.Paragraph

And.

I was a person again.

And.

I realized I wasn’t anywhere near a horrible a person as I thought I was.

Lots of other things too.

I realized my love meant something to other people and that other people loved me.

Both of those things are important.

So many things about myself and my friends and friendship and being human.

And I started to feel human.

A little bit.

I felt like I’d woken up from a weird sleep.

It’s how I feel around people who just want to be around me and I want to be around them.

That’s why Anne and Igor and everyone are so important. Even when we don’t see each other online or off for years. We want to but we can’t always and sometimes it hurts. But knowing each other at all counts for something. And I wish we could all communicate with as many others as we want to as much as we want to in the ways we want to. Because I’ve missed years of contact and I’m sure the others can say the same or more.

This picture isn’t just about pain, it’s why I wanted to post it again.

It’s about love.

It’s about being human.

I have a different kind of relationship with each of my friends.

With Anne it’s partly built on so much of our lives and brains working the same way.

If you ever read the book Loud Hands I have an untitled chapter. It’s about Anne. I can’t do us justice here but that’s the closest I’ve come to doing our friendship justice anywhere.

Anyway we read each other underneath everything. The words almost don’t matter. We exist and resonate.

And for that friendship that’s how it works.

So the picture is about resonating and friendship and love and humanity and all kinds of wonderful things.

And CATS.

Those are all in there too just as much as pain is.

I want to post that picture to celebrate knowing Anne and friendship and love in general and the amazing luck of finding those things at all, for a lot of us who never expected it or even really knew what a friend was. And the importance of all this when you have it.

And so many more things I can’t name.

There’s a lot in this picture that’s really beautiful about friendship if you know what you’re looking at.

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Anne and Mel and Igor in Mel’s apartment.

The pain isn’t separate from it either. It’s not some extra thing. If it’s part of my body right then it’s part of the picture too. But so is the love and the resonance and the catness and all the other things. They’re all wrapped in together because that’s how life works. It’s all there underneath if you know how to look for it.

I love all my friends whether I named you or not and you’re all important to me and I care about you and wish we could interact more in whatever way worked best for us.

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Posted in Being human, joy

What I’m eating these days

I haven’t hit on exactly the right foods to eat, yet, or maybe the right amounts.  But what I’m eating is both so much better for me than the Nutren was, and feels so much better, that I wanted to tell people what my current set of foods generally looks like.  Note that I am not telling anyone else what to eat — what food works for someone varies so much by person, culture, and circumstance that I’d never presume to tell anyone else what they ought to be eating.  Plus it’s much healthier (and happier) to not worry about food too much than to spend all your time freaking out about whether you’re eating the ‘wrong’ kind of food or not. 

Homemade blenderized food, and a water/Powerade mixture, hanging from an IV pole with a feeding pump.

So there’s several elements that go into most meals.  I don’t eat the exact same thing every time though.  I sort of have an overall category, and then I can pick and choose what I want from within that category.  So generally my food looks like this.

Food (combo of something from each category put into high-powered blender with water, then chinois, then feeding pump):

  • Beans:  Black beans, black-eyed peas, lentils, split peas.
  • Texture vegetable:  Squash (any of a huge number of kinds), sweet potatoes
  • Green vegetable:  Spinach, collard greens, peas, asparagus
  • Fat: Olive oil, flax oil, avocado, guacamole, coconut milk curry, etc.
  • Seasoning: Soy sauce, Sriracha, fish sauce, assorted kinds of chili peppers, spices, sauces.
  • Other things: Mushrooms, seaweed, rice, sunchokes, assorted veggies.

Drinks (usually put directly into  feeding tube with a syringe, sometimes put in feeding pump):

  • Water
  • Coconut water
  • Coffee
  • Tea (mostly green or oolong)
  • Kombucha
  • Powerade Zero
  • Kefir

We started calling certain vegetables texture vegetables because at first we were so focused on getting me enough beans, that the texture of the resulting soup felt and behaved like cement once it got into my guts.  So we found that adding squash or sweet potatoes got rid of some of that cement quality.  Not that that’s the only reason I’d eat squash or sweet potatoes, but that was definitely the original purpose they served.

Anyway, while this is far from perfect, it’s so much better than eating Nutren, and I’m satisfied with it more or less.  I also like that unlike Nutren, I can vary foods within each category very easily.  So I get more of a variety in my food than I did on Nutren.

I’m not a vegetarian and have no desire to become one.  But my food ends up being mostly vegetarian for a couple reasons.

One is just that I prefer vegetarian foods most of the time.  Not for ideological reasons, but I just like it better than meat.  With notable exceptions usually involving hot pastrami sandwiches.

The other is that since I’m fed by J-tube, my food takes a long time to get into my body.  That means it’s sitting out in a feeding bag for hours while it goes through a feeding pump into my body.  Meat goes dangerously bad faster than, say, beans.  So hanging blenderized meat in a feeding bag is usually more hassle than it’s worth.

But I do use meat or animal products in limited ways.  Like I’ll fry mushrooms in fish sauce.  And if there was a nutrient I was missing that’s most easily found in animals, I would have no problem supplementing with an animal product to get that nutrient.  

Also, I do like my food to taste good.  I always make sure that the soup (what I call the resulting liquid that happens after you put all these ingredients in water in a high-powered blender and then strain the results through a chinois) is seasoned in a way where I’d want to eat it even if I was eating it by mouth.  Bonus points if I can convince people with functioning stomachs to eat it on purpose.

I swear that matters.  It matters that the food smells and tastes good, even if I never smell and taste it beyond the taste test at the beginning.  I don’t know if that has any medical benefit, but you don’t just eat food for the medical benefits.  You eat food because you like it.  And making my food enjoyable really frigging matters.  It matters for both disabled and nondisabled people:  You should like what you eat, when possible.  And that shouldn’t have to change just because you’re fed through a tube.

“Food is not just physical or medical.  It’s emotional and cultural and lots of other things.  You ignore that at your peril.”

One thing that I really hate about being tube-fed is the fact that my food is treated as a medicine and eating is completely medicalized.  The Nutren is listed in my medical file as medication, not food.  Regulations state that I  need a note from my doctor to allow Howard Center staff to put blenderized food into my feeding tube.  Which has to do with the nurse being able to keep her license — she finds this all as absurd as I do. 

When I’m in the hospital, how I get water or coffee has to be written up by doctors.  If I disagree, I am not technically allowed to, say, vary the timing of water flushes during tube feeds.  I have to argue with a doctor about water because it’s suddenly a medical treatment rather than just drinking water.  And I have no medical reason for fluid restriction, so they don’t even have that excuse.  It’s entirely because the water goes into a tube rather than into my mouth, even though it’s getting to the same place in the end.

Anyway, one of the biggest antidotes anywhere to seeing food as medicine, is to prepare the food for the blender in the same way you would prepare an actual meal.  You want it to taste good, or smell good.  You want it to be something you’d be willing and even eager to eat if you were eating it orally.  These things aren’t trivial or afterthoughts.  They’re a serious and overlooked part of being tube fed. 

don’t think it’s generally a good idea to ignore this and pretend like your food is a some kind of laboratory experiment.  There’s nothing wrong with eating a feeding formula if that’s what works for you, but if it doesn’t work for you, or you’d just rather for whatever reason use blenderized food?  It’s important where possible that the food be enjoyable and not just a chore you have to get done.  Or at least, that it not be actively unenjoyable.  Food is not just physical or medical.  It’s emotional and cultural and lots of other things.  You ignore that at your peril. 

Anyway, I’m looking forward to my nightly tube feeds instead of dreading them like I used to.  That in itself is a good sign.  In the end it doesn’t entirely matter (except between me and my doctors) why Nutren made me so physically miserable and the food I’m eating now doesn’t.  What matters is that I’m eating food I enjoy and that I seem physically much healthier this way.  And that I’ve found a way to make it work even with a feeding tube.

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.)

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, music

The cello music you’ll never hear.

 

I don’t usually trust people’s accounts of my talents.  There’s too much reason for people to get distorted opinions of them, and to pass those distortions on when describing them to me.  But when I was six years old, I fell in love with the violin.  For real, not because anyone made me.  You normally started violin at nine at that school, there were no other six-year-olds playing any instrument.  And I was the only six-year-old in the junior high orchestra.  I’m glad I was oblivious enough not to understand that it even was the junior high orchestra.  Later, I am sure this contributed to my label of idiot savant.  But at any rate, until circumstances changed, violin was my thing, despite the amount of physical effort it took to play at all.  And there’s enough fairly objective information to tell me that I was unusually good at this, at this age.

But actually.

What happens in my head is cello music.

A cello with notes and othershapes spiraling out of it.
You’ll never hear this, but it’s there.

A lot of the time, there is elaborate cello music interweaving itself with everything I experience.

Not just one cello, but many cellos, doing complicated reactions and interactions with each other.

I can’t play cello.  My hands are barely big enough to handle violin or viola and it’s just to heavy these days too.  You’ll never hear even one strand of these songs.

I also lack the background in music theory to be able to analyze or write down this music, especially since I am feeling and hearing it fully formed and in all its complexity (or simplicity as the case may be).

I am sure someone would call me idiot savant all over again if I were able to articulate this cello music in a way others could hear, but this is why I have said that not all savant abilities are visible from the outside.  And they don’t need to be.

So this is music only I will ever feel or hear.  It’s fully formed, it adapts itself to every situation, and it is often elaborate.  It’s beautiful.  When it’s happening, it springs from everything that happens and acts like a soundtrack to every part of life.  It interweaves itself into everything, and springs fully formed as if it was already interwoven

But I lack the skills necessary to even begin to share it with anyone.

So I will just say:  It’s there.  You will never hear it, you will never see it written, and it is there.  It is there.  It is there.  Some things are like that.  Some things may never form in the full way people want.  But they’re still there and they still matter.

This has been a continuation of my last post on music.

Posted in Being human, joy, music

The song and dance underneath everything.

Grace Vanderwaal and her kitten wisdom strike again.  (Note: Some lights may be flashy.  I don’t know how to gauge which are a potential problem, so assume in videos and music videos I post especially, watch at your own risk.)

Lyrics (“City Song”, Grace Vanderwaal):

Fresh laid concrete
Melodies blowing
Don’t care where we’re going
But the day is wasting
Just keep moving
And take it all in
The rumble of voices are the bass to our song
The horns are just on the beat
Honkin’ along
Let’s be the harmony
But no note is wrong
And let’s take the city
And make it our song
Our song
Our song
Let’s take the city
And make it our song
Pencil tapping
Feet speed walking
Cars just driving
Daydream gazing
Just keep moving
And take it all in
The rumble of voices are the bass to our song
The horns are just on the beat
Honkin’ along
Let’s be the harmony
But no note is wrong
And let’s take the city
And make it our song
Our song
Our song
Let’s take the city
And make it our song
Everything going on around you
Just close your eyes and disconnect for a moment or two
And hear
The rumble of voices are the bass to our song
The horns are just on the beat
Honkin’ along
We’ll be the harmony
But no note is wrong
And let’s take the city
And make it our song
Our song
Our song
Let’s take the city
And make it our song

There’s music underneath everything.  Everything.  It doesn’t matter where you are, there’s music.

There’s music in a city, there’s amazing music in a city, any city.

There’s music in countryside sounds, wilderness sounds.

There’s music in silence.

The music you want to listen for especially, is the music in between the sounds.

Not the music of the sounds themselves. But something that happens in between the sounds, in the silences, in between the silences themselves.

And there will sometimes be singing, in those silences.  Silent singing inside silence.

Every sound is a part of the music.  Every silence is a part of the music.  Every sound in between the sounds, every silence in between the silences, every singing in silence, every singing between sounds.  It’s all part of the music.

And if you listen just right, you can hear it sometimes.  Maybe even dance to it.

Sometimes my body moves to the rhythm and beat and melody and harmony of these sounds, and silences, and sounds between sounds, silences between silences, songs within silence, silence within songs.  And I can feel them more than I can hear them, feel the rhythms of everything around me moving through me and making me a part of them, and it’s important.  Even if nobody sees me dancing to this music, or understands that it is dancing,   Sometimes it doesn’t even look like dancing, sometimes it looks like wandering into the right place at the right time and doing the right thing and leaving.

But there’s music in everything.  And I think there’s a level where we can all either hear it, or physically feel the rhythm of it, or otherwise react to it, whether we’re aware of all this happening or not.

And that music goes deep down into the depths of things.

Momo listened to everyone and everything, to dogs and cats, crickets and tortoises — even to the rain and the wind in the pine trees — and all of them spoke to her after their own fashion.

Many were the evenings when, after her friends had gone home, she would sit by herself in the middle of the old stone amphitheater, with the sky’s starry vault overhead, and simply listen to the great silence around her.

Whenever she did this, she felt she was sitting at the center of a giant ear, listening to the world of the stars, and she seemed tohear soft but majestic music that touched her heart in the strangest way. On nights like these, she always had the most beautiful dreams.

Those who still think that listening isn’t an art should see if they can do half as well.

— Michael Ende, Momo, 1984 Brownjohn translation

Momo listened to everyone and everything: dogs, cats, crickets, toads, even the rain and the wind in the trees. And everything spoke to her in its own way.

On some nights, when all her friends had gone home, she wouuld sit alone for a long time in the old theater’s large, stone rotunda listening to the deepening silence while the starry sky arched high above her.

Whenever she did this, she imagined that she was sitting in the middle of a giant ear that was listening in on the entire cosmos, and she often thought she could hear soft but powerful music that went straight to her heart. On those nights she always had especially beautiful dreams.

Anyone who still thinks that listening is nothing special should simply try to do it half as well.

— Michael Ende, Momo, 2013 Zwirner translation

Even silence has a song, and it can be heard even with things that are not ears.  Any time you can hear or respond to it, you’re experiencing something important about the world.  And you may not even always know you’re doing it.  But… this is stuff that’s real, this is stuff that can remind you the important things in life.

So much of life disconnects us from the music and our innate awareness of it, makes it hard to feel, hard to hear, hard to respond to.  But it’s there.  And if we don’t hear it, we feel it, or move to it, or respond to it.  It’s there.  It tells us what the world is.  It tells us who we are and our place in the world, and our place in the dance.  And the dance is many and varied and beautiful and everything and everyone in the world is part of it.

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, joy, Nature, redwoods

Dirt and plants and rocks MATTER.

Bear in mind, I remain firmly convinced that the ninth circle of hell is located somewhere in Fletcher Allen Hospital.  Or maybe hospitals in general.  And I don’t even believe in hell.  There’s a lot of great people working there, and I encountered many of them this time — including lots of nurses wearing bright red pins saying “WE’RE WINNING” — but a hospital is a hospital.

And I was stuck in a room I’d previously been massively delirious in towards the end of a five-week stay from hell.  This room:

A bare hospital room, facing the window.
A very bare isolated hospital room. Not bad or uncomfortable as rooms go, but alarmingly delirium-inducing in many of its qualities. Also unique on the whole ward so you can’t mistake it for any other room.

I was forgetting things.  Things like the redwoods.  I knew they existed but I couldn’t remember them.  I was forgetting who I was.  Large chunks of my normal thinking were falling out.  And I couldn’t fucking remember the redwoods.  I knew I should know them, but I didn’t, and it frightened me.

It reminded me too much of the blank delirium.  The kind where white blankness fills up more and more of the world until the world goes away, and you’re lost in the snow.  I didn’t want to be lost in the snow.

So I was looking out the window one day and I saw this:

Trees and plants and pathways viewed from a sixth-story hospital window.
Trees and plants and pathways viewed from a sixth-story hospital window.

There was a child running and playing down there.  I wondered how the hell you get down there.

A wonderful LNA — i’d name her, but I don’t want to invade her privacy — made it her personal mission to figure out how to get down there.  I heard her asking around all day.  She finally came in with a post-it with written instructions on how to get down there.  It involved a lot of weird back routes.  They don’t make it simple.  The hospital is actually several unrelated buildings kludged together by a maze of corridors, with that unexpected garden in the middle of it all.  I’ve explored a lot of the corridors, but I’ve never found the entrance to the garden.

Anyway, when my evening caregiver arrived to visit, the LNA and I were ready with a wheelchair to get me down there.  She went over the instructions with him, and he pushed me down.  We found it pretty easily, she gave good directions.  I’d actually been very close to the entrance before, and never known it.

It turns out it’s this place called Peter’s Garden.  It didn’t take much thinking it out to know that Peter must be someone who died.

A sign in a garden, reading: WELCOME TO PETER'S GARDEN. "What lies behind us and what lies before us are tiny matters compared to what lies within us." -Ralph Waldo Emerson. Donated by the friends ofPeter's FUNd Racer.
Peter’s sign.

You can read more about Peter and the garden here, it includes a link to a Powerpoint of the construction of the garden.  From what I understand, he died in his forties of cancer and his family and friends raised the money to put the garden in.  I heard later that the chemo ward overlooks the garden directly.

Anyway, I got up and walked around a little.

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When my feet touched living soil, I could remember the redwoods.  I could feel my body.  I could remember who I was.  I could feel the way things connect together again.

I still have big holes.

I still have gaps in my head that didn’t used to be there.

But something happened in my soul.

In the middle of that hell place, there’s life.  There’s dirt.  There’s plants.  There’s beauty.  There’s dead plants.  There’s amazing flowers.  There’s REAL.

Someone put it there, someone made it this way on purpose.

I’m really grateful to whoever decided to do that.  And to the LNA who made sure I could get down there when I was losing touch with everything that mattered to me.  It gave me back a lot of strength in a really scary situation.  It got me through a night where every time I closed my eyes I thought a bunch of black blobs were coming to eat me.  It got me through a tense, scary morning with an uncertain future.

The gaps are still there, the tenuousness of my health is still there especially now that I’m out of the hospital, the uncertainty is still there, and I’m not working with all the thinking I should need to survive what’s in store.  But I can feel who I am, where I come from, and that can mean the world.

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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.