Posted in Being human, cats, language

Eighties computer memories: PAWS

People often ask me how I learned to type so fast.  I don’t think they’re prepared for how normal my answer is (nor do I  think they’re always intending to ask me the same question I think they’re asking when they say it).  Because I tell them, and then I later hear it getting repeated in forms so garbled I can’t figure out how they came up with it.

It really goes like this:

I was in mainstream school for grade school (went to a public school up to fourth grade, private school repeating fourth grade then after).

I learned to touch-type the exact same way every other kid in my class at my second school learned to touch-type.  I just happened to do it more often and more persistently than most, for lots of reasons.  We had little patches we could get for learning and passing tests for different keyboarding speeds.  I practiced at the same computer program everyone else did (except much more constantly than anyone I met), until by the time I left that particular school I had a patch for 120 words a minute.  (They started at 20 or 30 and you worked your way up by 10s, if I recall correctly.)

Screenshot from Microtype Paws, with a picture of a keyboard, a cat with a smiling face, the practice line “He had cake and cola near the lake,” and a speed score of 140 words a minute.

There were probably a lot of reasons I did this more often than most kids.  But the main one was that I really liked cats.  And the computer program  (called Paws) that taught us typing was cat-themed.  That’s really all.  That and I enjoy things other people often find tedious or repetitive, and I have the potential for really good muscle memory.

But seriously?

It’s not complicated.

I just used a computer program I happened to be really drawn to.

Over, and over, and over, and over, and over, and over, and over.

For years.

And I had the right combination of skills, interests, and opportunity to benefit from that constant repetitive practice.

Also, I didn’t have an Apple at home, so I couldn’t use the computer program at home.  And, as I said, I loved the part about there being a cat.  So I played it like it was a game, and I worked my way up the speeds until I hit 120 words a minute.

I wasn’t the fastest kid in school by any means, either.  I was up near the top but there were a couple kids who got up to 130 or 140.  Which are speeds I can do now, but not then.

People seem to expect me to have been in some kind of 100% disability-segregated environment my entire life (no) and to have always had the exact same combination of abilities and difficulties they see at whatever point in time thy met me (no, no matter what those abilities are).  So somehow I tell people I learned to type using a computer program with a cat in it, and it morphs in their head into some weird story about a program (as in “special disability program” — no) that taught me to communicate (no) using an extra-special keyboard (no) that was decorated with cats (no).  Or things along those lines.

No.  I went to a grade school/middle school for a few years, that had a very nice computer lab full of Apple IIe and IIGS computers (I loved the IIGS keyboards, they had relatively thin flat keys that were much easier on my fingers than the big clunky IIe keyboards).  We didn’t have Apples at home so that in itself was a novelty.  I spent a lot of time in there playing the same keyboarding game that all the other kids learned to type on.  I just spent more time doing it than most kids did.  And, as I said, had the skills and opportunities to make use of that practice in a way where my performance improved with time.  And that’s really all there is to it.

Oh also, Paws had a combination of different typing games.  There was usually a tutorial, some stuff typing the specific letters you were learning, some stuff using those letters in words and sentences, and a few different games involving the cat himself.  We also had to, at more advanced stages, do typing tests using a part of the program that timed your typing on a full screen for a certain period of time, typing entire paragraphs.  That part annoyed me a bit because it was one of the few parts of the program where the cat wasn’t pictured.

I suspect Paws is far too slow and retro and uncomplicated for most modern kids when it comes to computer games in general, but I really don’t think it’s in any way lost its capacity to teach touch-typing.  And I think I’d still enjoy it if I was trying to learn.

Also here is an emulated version of Paws 1.1 on archive.org if you want to try it out.

And just a reminder; Being disabled doesn’t mean your life fits into some kind of Template For Disabled People Only.  In fact, it never does, although some of us hide that fact better than others (and some have it forcibly hidden for us), and some of us appear to resemble the existing templates more than others.  But nobody actually fits the Official Disability Templates 100%, and most of us don’t even come close.  When most disabled people say computer program we mean the same thing everyone else means by it, we don’t mean special disability programming ™ that happens to be related to computers (although there’s plenty of those in the world too).  And unless we have some particular reason that touch-typing isn’t something we can learn, and unless our disability involves our hands in certain particular ways, then if we can touch-type, we’re likely to have learned touch-typing in any of the huge number of ways that everyone else learns it.  Which in my case was Paws.

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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 Being human, Problems and solutions

Dreams of Robot Kittens

I’m watching a documentary about robots.

And it reminded me of a dream I had a long time ago.

Not a particularly important dream, just a cool dream.

In the dream, I was in a city.  Not sure what city, but a large city.  Kind of sprawling like San Jose, California, where I grew up.  But definitely not San Jose or any other city I’ve been to in real life.

Anyway, in this city, there were robot kittens.

They did not look like this robot cat, which I had as a kid:

petstercat
This is nothing at all like the robot kittens in the dream.  This is an eighties toy that moved, purred, or meowed if you clapped in different patterns.  One of the motors on mine didn’t work so it mostly went around in circles.  I guess I had a disabled robot cat.  I was quite fond of it.

Anyway, the kittens in the dream:  They were tiny.  They were clearly robots, they made no attempt at being realistic.  So they were usually shiny, plastic, and a combination of white and some other color.  (Sometimes a color a cat would be, sometimes something like blue or purple.)  They were also completely adorable.

They didn’t look quite like this, but these modern toys are much closer to what was in the dream than my Petster:

A pink and white plastic robot kitten.
Pink and white plastic robot kitten. Doesn’t look quite like what was in the dream, but much closer tan my old Petster.

Anyway, these robot kittens made their way around the city without really being noticed by a lot of people.  People expected them and got out of their way, but they did a pretty good job of staying out of poeple’s way.

Except the person they were going to.

Because these were delivery kittens.

And each kitten delivered a small amount of food to someone who needed food right then.

And it could be that you had no other source of food.

But it could also just be that you wanted convenient food delivered to you quickly.

Or that you couldn’t be bothered to cook right then.

Or that you were disabled and found cooking and meal planning and all that too difficult.

The kitten delivery service didn’t care why you needed food, they’d just give you food.

The kitten would find you, open up a hatch on its side, and there would be your food.

And then once the kitten was assured you’d gotten your food, it would go on its way back to wherever the delivery kittens go when they’re not out delivering food.

See, in this city, and presumably in the surrounding culture, food was considered a human right.  Everyone took this as a given.  That’s one reason they didn’t differentiate between why a person wanted the kitten delivery service.  The kitten delivery service was completely subsidized and it was anyone’s right to use it for any reason at any time.

Imagine that.  Food being considered a human right.  And being delivered discreetly to anyone who wants it for any reason, by a small army of robotic delivery-kittens.

Holy crap, the world we live in…

 

 

Posted in Being human, family

“Bet your ass we’re paranoid!”

CXR0_y6W8AAFcyr
Oryx Cohen recently tweeted this photo of psych survivor/ex-patient activists with a protest sign saying “BET YOUR ASS WE’RE PARANOID.”

I grew up on stories of a great-grandma who slept with a hatchet under her pillow.

She was afraid the sheriff was coming for her, you see.  This was supposed to confirm she was crazy.

Maybe she was crazy.  I don’t know.  But the thing is, the sheriff did come for her.

And he took her to the state mental institution.

And she eventually died there.

So if she was “paranoid”, if she was sleeping with a hatchet under her pillow, maybe she had reason to be.

Society treats institutionalization as the inevitable result of disability.  It’s not.  It’s a widespread, ongoing crime against humanity.  Just because it’s socially acceptable doesn’t make any less of one.

Posted in Being human, cats, language

I used to volunteer to socialize with the cats at the local shelter.

I loved just sitting in a room with them.

We didn’t need to play.

We sat.

Little messages passed between us barely seen by most people.

The flick of an ear.  A tail.  An eye.  Just for a second.  The posture we sat in.  The direction we were pointed.  It all meant something.

I don’t pretend to have grasped all the communication going on in that room.  Some was by smell, or otherwise inaccessible to the average human, or any human.  Some was cat things only cats know.

But you could get a feel for things.

Sometimes.  Like right now.  Right exactly now.  I wish that I could show things indirectly, with ear and tail and whisker and eye movements, and be understood.

Sometimes.  Like right now.  I know where my ears would be if I was a cat.  (Cat ear muscles and human ear muscles — same muscles, very different ear positions.  :-/   Doesn’t translate well across species lines.)

But as much as I know I am not a cat, I sometimes feel a lot like a cat, sitting in a room with cats, my best communication being in Cat, and feeling helpless to do it in Human.   😦

This applies right now.  This also applies a hell of a lot of the time.

Photo on 8-27-18 at 12.36 AM
No ears, no whiskers, no tail, limits communication greatly.

Posted in Being human, Developmental disability service system, HCBS, Self-advocacy

Let’s get one thing straight.

“I tell my story, not because it is unique, but because it is not.” -Malala Yousafzai

“I tell my story, not because it is unique, but because it is not.” -Malala Yousafzai

“I tell my story, not because it is unique, but because it is not.” -Malala Yousafzai

So when a social worker told me I had to understand that my developmental disability service agency is being nice to me, I saw red.  Especially when she explained to me oh-so-helpfully that many clients are getting nothing, therefore they are being nice to me by giving me anything, and I should be grateful and appreciative of this fact.  There was, of course, the implied threat that everything could be taken away from me, but that’s been hanging over my head for awhile now.  I fully expect them to try at some point.  Possibly soon.  Possibly now.

But anyway.

So.

To be really, really fucking clear.

There is nothing that I am demanding for myself that I don’t think every other client of the Howard Center should have.

The fact that some people there have nothing right now is obscene.

I am not causing them to have nothing by demanding what is both my right and their right.

Hell, I’m not demanding as much as I deserve.  I’m not even demanding all of my actual rights as a client of the developmental disability service system and a Medicaid waiver recipient.

Right now, I’m just demanding what i need to survive and live in my own home.

Survival is a human right.  Living in my own home is a human right.  As a client of the developmental disability service system, these are things that all 700-odd people under the Home and Community Based Services system in this agency are entitled to.  Every single one of us is entitled to the supports we need to survive and live in our own homes.  The fact that the agency doesn’t do things this way is an ongoing violation of those rights, not a thing that should ever be considered an acceptable state of affairs.

If I ask for these rights for myself, I am asking for them for every single other client of the agency as well.  I am not asking for them so they can take them away from someone else, and it’s fucking insulting, not to mention dangerous, to every client involved here to even imply that.  And it belittles — deliberately, in many cases — the work of the self-advocacy movement which has worked very hard to secure these rights for every single one of us.  I am here because other people demanded these rights for themselves, and they became known as rights we all deserved, and then they became available to me as well.  In asking for what I need, I am merely doing the exact same thing.

So don’t ever tell me that in asking for my rights i’m somehow taking away from someone else’s.

I’m able to live in my own home because Lois Curtis and Elaine Wilson demanded the right to live in their own homes.

When I demand that this right be upheld for myself, I am demanding that this right be upheld for every single other person with developmntal disabiliites and beyond.

I refuse to play their divide-and-conquer games.

I refuse to say that because other people are getting nothing, I should be happy I’m getting anything at all.

If I don’t get what I need to survive, I’m not getting enough.  If other people are getting nothing, they’re not getting enough.

I might not even be involved in this fight if it weren’t for knowing how many other people this is happening to.

So don’t ever get the idea in your head that all I care about is what I get.  I want to survive and live in my own home without being endangered by the very system that is entrusted with assisting me to live in my own home.  These are not excessive demands.  These are bare minimum demands.

They are playing a lot of head games and a lot of word games.

But I can still see what’s happening.

And I will continue fighting because I am not unique, my needs are not special, and an agency that exists to meet those needs, meeting those needs, is not a fucking favor.  Every single one of us deserves to survive and live in our own home, these things are basic human rights (and even legally considered them at this point, not that this should be the measurement of whether something is or not), and failing to meet them on such a large scale is evil.

Also, less than I need to survive safely is still less than I need to survive safely.  The fact that I could get even less doesn’t change the fact that I need more than this.  And that until recently, I was getting more than this without increasing my hours or changing anything.  (In fact, what they want me to be doing would require an increase in hours probably, so they can’t even truthfully argue this is about resources.  The proposed changes in my services would, even if possible, require far more time and effort on the part of staff than what was going on already.)

And no, I am not unique, that’s part of why all this frigging matters so much.  If I were the only person this was happening to, it would be a problem, but not the kind and scale of problem that is actually happening here.

Posted in Being human

The things that really matter

There is music that runs through everything.  There is.  And it’s a kind of music that doesn’t require ears — it can be heard, it can be felt, it can happen through any sense.  But it’s music because of the way it falls together.

And when I crochet, I can feel the way the world is woven together, weaves itself together, with every movement.

Walking around, dancing, moving, I can feel the world, I can feel the way my movements bounce off the world and come back to me, I can feel things fitting together.

I have felt that I have become redwood soil before, felt the mycelium inside me, felt all the things growing and changing, the way the world fits together.

This reality, this depth, it is there underneath anything if you look at it right.

These are the things that matter in life.  Or, they are connected to the things that matter in life.  The things that make the world what it is, us who we are, being tiny pieces of this amazing world ourselves.

And when we are forced to see ourselves along one-dimensional lines, these important things drop out of our view, and we’re stuck with ideas and illusions that leave us cold and empty.

Until we can find some way to perceive the things that matter in life.  The love, the connections, the depth, the reality.

And sometimes it’s seemingly little things.  Like wearing your own clothes in the hospital.  Like having rocks.

Mel wearing hir own clothes (button-down shirt, suspenders, hat) in the hospital the other day, with a piece of granite near hir shoulder.
Mel wearing hir own clothes (button-down shirt, suspenders, hat) in the hospital the other day, with a piece of granite near hir shoulder.

But when you’re being forced to see yourself as a collection of deficits and medical problems, or anything else that makes you lose sight of these things, these ‘little’ things make all the difference in the world.

Because the world and all the good things in it haven’t gone anywhere.  It just sometimes feels like they have.  When people are pressuring us to see ourselves in a light that fits nobody, one which attempts to eliminate the core and depth and soul of our existence in this world.

It’s still there.  It’s still there. It’s still there.  All the things that really matter are still there.

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.