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.
Posted in Being human

A request: Please avoid “gender presentation” when describing me.

This hasn’t happened any time recently that I recall. But it’s become pretty common to describe people in image descriptions as male-presenting or female-presenting if you don’t know their gender.

Please don’t do that to me in any context. I don’t have a gender identity and I don’t have a gender presentation. These are terms developed to describe people with a very different experience of gender than I have. They work for most people. They don’t work for people like me. I get that I’m in a tiny tiny minority. But just please don’t do it. No matter what gender you pick (including nonbinary ones), you’re basically tying elements of my appearance to a gender, when that’s not how my appearance works.

And to be described as male-presenting or female-presenting basically feels like being plunged suddenly into ice water with no warning. Combined with the same feelings I get when misgendered. (Which, for me, being gendered is being misgendered, so it happens a lot. I grasp that being gendered — appropriately — is very important to 99% of the population, so I don’t know a social solution to this, but just putting it out there that this is how it works for me. Not speaking for anyone else genderless. Also I’m not talking about pronouns, I actually don’t mind people getting those “wrong”, I’m talking about being forced into gender in social situations.)

A
I don’t have a gender. Neither does my clothing, hair, jewelry, or appearance. Thanks for understanding.

When I say I don’t have a gender presentation, I don’t mean that people don’t judge gender from my appearance. I mean that how I intentionally decorate my body is not tied to gender. I am not female-presenting when I wear a skirt and male-presenting when I wear my dad’s clothes. I’m just me wearing clothes. Wearing what beard I can manage to grow is not about masculinity and wearing my hair long is not about femininity. Wearing my dad’s clothes and copper nail polish is not about being nonbinary or about trying to confuse anyone. Nor is wearing my dad’s clothes including suspenders but with a skirt. These things just happen, they’re not about gender. Presenting implies at least some amount of intent.

So thanks in advance for just not going there with me. Not trying to fit my appearance into a gender box, not splashing me with ice water, not making me feel more like an outsider to every damn thing than I already feel. Nothing like this has happened recently, I just wanted to explain.

Oh also when I say I lack a gender identity, I mean I lack any internal sense that ties me to a gender. This is not a choice, a political view, or a philosophical position. I have no problem with most of the world having a gender. I just don’t. I have no idea why.

If you hear me describing myself in seemingly gendered terms, I’m likely using them in a sociological sense, or because gender-neutral terms can sound clinical and impersonal. (“Sibling” vs. “brother” or “sister”, just not the same.) Or because the world is a complex place, and so is language, and one word can have many meanings, and I have enough word-finding problems as it is to be precise about language all the time, and so many other things.

But I don’t think you’ll ever catch me describing myself as having a gender presentation. For reasons. Thanks for not doing the same.

Also don’t assume all genderless people feel as I do or that all people with genders are comfortable with the idea of gender presentation being applied to them. This request is entirely personal. People are complicated. Categories don’t always dictate preferences in this regard.

Posted in Being human

Petting the elephant

elephant-Indoor
Wow, that’s an extremely upscale-looking living room that elephant’s in…

There’s a kind of person in the world.  I’m one of them.  I don’t have a name for us.  I can’t help responding to something I know is there.  This gets me in no end of trouble.  Many social rules are enforced by everyone carefully pretending that something is not there.  Many people are incapable of seeing what is there.  Many people are in denial about what is there.  Many people use glamour to obscure what is there.  Many people are fooled by glamour, their own and others’.

I am more likely than usual to see things that are there that other people don’t, won’t, or refuse to see.  I like Terry  Pratchett’s definition of First Sight:  The ability to see what’s actually there, rather than what your brain tells you ought to be there.  Of course in the real world nobody has perfect First Sight, and everyone is fooled by our own  perceptions or by other things, but I understand the concept very well.

Anyway, my problem is that I respond to what is there.

This is not a voluntary action.

This is not necessarily saying something about what is there, or doing anything at all to consciously react to what it’s there.

It’s just there and I can’t tune it out.

A friend and I who both have this ‘problem’ were once interviewed for television.  They told us to pretend the camera people didn’t exist.  We were totally incapable of not forgetting after two seconds and striking up conversations with the camera and sound crew.  We really frustrated everyone but we couldn’t help it.  They were there, we couldn’t erase them from our brains and act like they weren’t.  I’m not sure anyone totally could, but we couldn’t even pretend well.

I’m sure everyone has heard the analogy of the elephant in the living room that nobody will acknowledge but everyone knows is there.

The best summary of my entire problem here is this:

I see the elephant in the living room, and without even stopping to think, I will do something like go up and try to pet it.

That wrecks people’s whole system.

And it makes it impossible for me to avoid doing things like this, because it’s not just a matter of voluntary actions I control, which can be hard enough.  It’s hard enough to refrain from saying “Hey there’s an elephant in the middle of our living room, why is nobody talking about it?” But even if I can refrain from saying it, my actions will give it away.  I will greet the elephant, or talk to the elephant, or feed the elephant, or try to figure out if theelephant even wants to be in our cramped living room and what to do about it, or clean up the elephant shit in a way nobody can ignore, and these things are just reactions to what is actually happening.  Even if I never explicitly mention elephants, ifI am careful to avert my gaze from the elephant, I will inevitably interact with the elephant in a way few people would, and that will give everything away and piss a lot of people off.

I believe it’s important for people like me to exist in the world.  I think we have valuable roles to play, valuable things we do, and that reminding people what’s really going on is not always a bad thing.

I also think it puts us at a disadvantage, sometimes a dangerous one.  People can get very angry, for example, when you respond directly to exactly what they are doing but have carefully constructed a bunch of words or glamour to make it look like they’re not doing the thing.  And they can use it against you, to make you look crude and unrefined in comparison.  This becomes especially dangerous if there is abuse, manipulation, or neglect involved in their “invisible” actions.

And it’s socially dangerous.

But, I think, absolutely necessary.

But it’s not just a thing I do or a role I play.  I can’t turn it off.  It’s how I interact with the world.  It’s fundamental to how I perceive and respond to things.  And it has been angering people and getting me in trouble or worse, since before I was old enough to understand what I was doing.  And something in my actions always, always gives me away…

 

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, Developmental disability service system

Please quit telling me to ‘calm down’ when I give urgent information or ask questions.

I’m going to lead with a quote from Jim Sinclair and discuss it:

Most autistic people who are capable of formulating questions have frequently experienced the following scenario: We ask for information that we need in order to prepare ourselves for a new experience. Instead of answering our questions, NT people tell us that we don’t need to ask these questions at all. We just need to relax and stop being so anxious. The fact is that being able to ask questions, and getting clear answers to our questions, and thus knowing what to expect, are often the very things autistic people need in order to be able to relax and not be anxious. Asking a lot of questions about the details of a situation is usually not a “maladaptive behavior” that increases an autistic person’s anxiety. More often it’s an adaptive strategy that an autistic person is using to reduce anxiety or to prevent being in an anxiety-provoking situation in the first place. It’s very important for us to have thorough explanations and ample opportunities to ask questions.

Jim Sinclair, Cultural Commentary: Being Autistic Together

So first off be aware this quote is from a specific context.  It’s an extremely long article on specific experiences of autistic people’s self-created communities and cultural values.  So if your first impulse is to think “But it’s not only autistic people who’d encounter this,” you’d be totally right.  But you’d also be missing the fact that it’s quoted out of context from an article that is about autistic people, so it’s gonna mention autistic people explicitly.  Just like an article by and about transgendered people is gonna mention transgendered people explicitly.  It doesn’t mean it doesn’t apply to anyone else in the world.

Anyway, I mostly agree with Jim.  My only disagreement is the role xe puts on anxiety in the first place, when I often encounter this in situations where anxiety is not even a factor.  When it is a factor, it works exactly how xe says it works.  But it’s not always a part of things in the first place, and then people just drag anxiety into it as if you must be anxious because they think you are.

Example of something that had absolutely nothing to do with anxiety:

I go into the emergency room around 8:30 pm one night to be seen for cellulitis.  I’ve been told (I later find it’s untrue) that I’m not allowed to bring meds from home to the ER.  I know that I’m likely to still be there at 11 pm, when I am due a dose of hydrocortisone that is extremely time-sensitive: I can’t survive without hydrocortisone and my body makes absolutely no cortisol.  I know that this hospital doesn’t have liquid hydrocortisone that can go through a J-tube,and that the pharmacy has to make a suspension by hand, and that this takes time.  So I know they’re gonna need advance notice if I’m going to get this medication on time.

So after describing the infection, I mention to the triage nurse that this is gonna be a serious issue if the med gets missed or delayed, so they probably want to prepare for the situation in advance.  I ask if this is something they can do and be aware of so I’ll actually get the meds.  I’m doing this in front of an on-call staff person who doesn’t really know me that well.

The on-call staff person immediately starts all the crap they’re taught about calming me down, redirecting me, making sure I don’t have any anxiety, and telling me not to think about the hydrocortisone.  I get pissed off and tell him it’s important.  He tries to “de-escalate” me.  It goes round and round and round.

Mel attempting to look calm.
Do I appear chill enough yet to have a conversation without being told to calm down every time I say something!?!?! WTF.

The time gets nearer, and I am now back in an ER room, it’s approaching 11.  So I’m without information about whether they’re working on this, and want to make sure it’s actually happening.  So when the doctors and nurses are back there I’m talking to them about it.

And the staff person is saying it’s not eleven yet so I need to stop ‘worrying’ (preparing people in advance for something that needs to be on time and takes time to do, especially in a busy emergency room when I’m not there for adrenal insufficiency) until it’s actually eleven at which point we can address this.

And any time I seem annoyed with him, or concerned, or even try to discuss the matter, he says it’s anxiety and I just need to calm down and not think about it and everything will work out fine.

Everything did work out fine, but only because I did prepare them in advance, so they had time to write the orders and get the suspension manufactured in their pharmacy and delivered to them by eleven.

I also learned you are allowed to bring meds into the ER, that night.

But anyway, that’s a good example of where there was no anxiety at all involved.  I was not trying to alleviate anxiety by giving information and asking questions, I was trying to get something practical done that required advance planning.

I might have ended up anxious if there were signs they weren’t listening to me.  But in that case calming down wouldn’t have been relevant, what would’ve been relevant would be finding effective ways to advocate for what I needed.  Which generally requires talking about something, not pretending it’s all gonna be okay.

Doing what the staff person said in that situation wouldn’t have just been anxiety-provoking, it would’ve been physically dangerous to me.  

Often the information I am asking for, when I ask questions, is a similar situation:  I need the information in order to make an informed decision about something important.  Other people may not know why I need that particular information, but I need that information.  Without the information, I can’t make the decisions I need to make.  And the decisions may be, and often are, important medical decisions.

And I’m often deliberately left in the dark.  People give me as little information as possible.  And when I ask for information, it’s treated as an emotional issue:  Frustration, anxiety, pushiness, stubbornness, whatever.  When if you just give me the information, I generally know what to do.  And people are always trying to fix my emotions (as if they need fixing) instead of just giving me the information I need.

Quite often, anxiety won’t even arise until you withhold information from me.  And then anxiety is just the by-product of a situation that will go away once I have the information.  But even so, I’m not usually asking questions to make anxiety go away — even if it does make anxiety go away to get the answers.  I’m asking questions to get information that I need for a practical purpose.  Anxiety, if it happens, or goes away, is just a by-product of the situation, not the focus of the situation.

There is no faster way to cause me some combination of anxiety, anger, rage, fury, and frustration, though, than to try to fix my emotions rather than try to give me information.  This goes double if you try to fix them by manipulation that you think is subtle.  It’s not.  I know what redirection is.  I know what it means when you accuse me of ‘escalating’ — as if you have no part in making the situation worse.  I know what all of your jargon is and what you have been taught to do about ‘situations’ like this one.

And the best possible thing you can do is give me all the information I need, including information I don’t have access to, or assist me in obtaining the information I need, as quickly and thoroughly as possible.  Be on my side, don’t sit there trying to calm me down.  And certainly don’t tell me to take a deep breath and calm down, focus on something else, watch television with you, or some other random crap.

And by the way, the respectful way to approach a discussion about whether I have anxiety I want calming down from, is to ask.  And ask in a way that makes clear you will accept any answer, not in a way that makes it clear that you expect me to say “Yes, I am making myself anxious by thinking about this and need to take my mind off it” or something.

And then if I do say yes, then you can ask me if I want help finding strategies to do so.  And then you can ask me about whether any particular strategy works.  You don’t just apply strategies at me or shove them down my throat.

It’s really not that hard to be respectful.

But it’s very easy not to be respectful.

It’s not respectful to jump in and assume that I’m making myself anxious and want you to help me calm down.  Or that I’m making myself anxious and need you to help me calm down whether I want you to or not.

It’s not respectful to jump in and start manipulating me into calming down.  By manipulating, I mean all the things you have been taught about how to calm people down without telling them that’s your actual intent.  Like distraction, redirection, and other things that rely on the person not knowing what you’re trying to do.  Anything where you’re not being open and explicit about your intent to calm the person down, and anything that uses covert force, is manipulation.

Staff manipulate clients more than clients manipulate staff, but clients get called manipulative for doing ordinary people things that have no manipulative intent whatsoever.  So it might surprise you to hear these things described as manipulative.  But they’re manipulative.  (Clients do manipulate staff sometimes, but we generally do it because we have to in ways you may sometimes have trouble understanding.  Staff are taught to habitually manipulate clients, it’s very hard to be staff and not manipulate clients.)

Just about every strategy for changing someone’s behavior and feelings without them knowing is maniplative by nature.  That’s what manipulation is.  Many strategies for changing people’s behavior with them knowing is manipulative.  All behavior modification is by defintion manipulative whether it’s obvious behavior mod or subtle behavior mod.

Manipulative is not always bad but it is always an exercise of power.  Staff manipulating clients is especially dangerous at the best of times, because of the direction the power flows.  It should not be something you just pull out of your pocket every time you think someone needs to calm down.

It also helps not to be afraid of other people having and showing emotions other than happy shiny ones.  Sometimes people get stressed out, pissed off, freaked out, upset, and all-around discombobulated.  Sometimes people show it.  It doesn’t always need to be fixed and tidied away to accommodate your discomfort.  And often it’s a sign something is going wrong — like not having enough information, or not being listened to, or not getting the chance to give the right information to the right people — not a random thing a person is just feeling for no reason that needs to be brought under control before you even understand it.  These are perfectly natural reactions, you don’t have to manage them for us at the first sign we’re less than 100% chill.

Attempts to manipulate me into calming down will nearly always backfire because I can spot the manipulation a mile away and will get pissed off.  If you don’t want that result, don’t manipulate me.  Treat me with respect instead.  It’ll get you far.

 

 

Posted in Being human, Things I try to hide

Memory is complicated.

A sentence that may be difficult to understand:

I use my excellent procedural memory to hide wild variation in the reliability of my declarative memory.

Procedural memory, or implicit memory, is how you just know how to do things.  Especially physically — the classic example is riding a bicycle — but other ways as well.  Procedural memory is not only rarely a problem for me, but often a strength.  It’s why I’m such a good touch-typist, among other things.

Declarative memory, sometimes called explicit memory, is the kind of memory you’re generally aware of when you remember something.  You remember facts, and events, and words and concepts associated with them, and those sorts of things.  That’s declarative memory.

Sometimes I gloss over the intricacies involved here and just say I have memory problems.  But that’s not entirely the case, even though it basically functions as memory problems  And it’s not a consistent thing even when it does exist.  And it’s not like I just, across the board, have trouble with memory.  Nor do I have trouble with memory along the lines most people know about to divide memory up into different types.

As mentioned, my procedural memory has been excellent for as long as I know.  So much so that I almost overuse it to compensate for fluctuations in declarative memory.  So much so that I use it as a gateway to declarative memory in certain ways.

This is important:  This is the way cognitive abilities shape themselves around patterns of ability and difficulty that are unusual.  Just like physically disabled children may learn to walk in a way that’s completely out of line with how most medical professionals define how walking development should happen, cognitively disabled children learn to think in ways that are completely out of line with how most medical professionals believe cognitive development should happen.  Then if they notice at all, they frame it entirely in terms of what we can’t do, what delays we have.  They never look at it as another variation on what humans can do.  I love seeing physically disabled children who are too young to be self-conscious about the unique ways they get around.

Anyway, back to memory.

So, my memory issues are probably in several areas, but the biggest one is simply a voluntary retrieval issue.  In other words, it’s more about my general inertia than about actual problems with memory.

Inertia, for me, is all about volition.  Which is the ability to do things, directly, on purpose.  It’s not about the want to do things.  It’s not about the ability to do the things if the ability is triggered properly.  It’s about getting from want to do.  Most people have very little idea that there can even be a gap there.  For some people, that gap is so wide that we get various medical labels: catatoniaParkinson’sapraxia.  For some people, the gap is wide enough to cause trouble but it goes unrecognized,

Anyway, one very under-recognized thing about inertia is that it doesn’t stop at the connection between thought and action.  It’s not just the inability to stand up and move when you want to, or the inability to carry out a complex plan.

There’s a handy chart that I always pull out at these times.  It was developed by Martha Leary and Anne Donnellan.  They developed it eons ago to quickly explain movement difficulties — where movement is understood to involve a lot more than just physical movement:

Marked difficulties in: Starting, Stopping, Executing (speed, intensity, rhythm, timing, direction, duration), Continuing Combining, or Switching. May impede: Postures, Actions, Speech, Thoughts, Perceptions, Emotions, Memories. Martha Leary & Anne Donnellan, 1994.
Marked difficulties in: Starting, Stopping, Executing (speed, intensity, rhythm, timing, direction, duration), Continuing Combining, or Switching. May impede: Postures, Actions, Speech, Thoughts, Perceptions, Emotions, Memories. Martha Leary & Anne Donnellan, 1994.

Anyway, you’ll notice memories at the end of that list.  Like thoughts, perceptions, and emotions, those are not what people normally think of as actions.  But they are actions.  My inertia is across the board, affecting all of the things on the right-hand side of that chart in different, extreme ways.  And memory is far from unaffected.

So I have what seems to be an inconsistency to my memory:  I can’t recall things on purpose, and at any given time I can’t recall most things.  When people see this, and they see it often, they say I have a terrible memory and leave it at that.  And I test badly on most formal tests of memory.

But.

If something happens to jog that exact same memory I couldn’t recall to save my life before, I will not only recall it, but recall it with more precision and accuracy than average.

Since memory is imperfect and fallible for literally everyone, I haven’t just gone by what it feels like.  I have looked for instances where my memory of things can be corroborated by documentation that existed at the time, and compared my memory of events to the memories of other people I’ve known.  Generally — not always — when I have access to a memory, my memory is extremely good.  Including my memory for extremely distant events, earlier in my life than I’m supposed to remember anything.

Good doesn’t mean perfect.  It just means good.  My memory is as fallible and malleable as anyone else’s.  Anyone who thinks theirs isn’t is fooling themselves.  But I often remember details others don’t, and I remember things more accurately on average, when I do remember.

I cover for the lack of access to most of my memories in a variety of ways.  One is by relying on procedural memory for more than most people rely on it for.  This gives the impression of more competence.  I also can often memorize a vague description of something even if I don’t actually remember a thing about it at all.  And I rely on what I can remember — if you can remember something, people assume you can remember everything. And people don’t expect people to have the massive memory gaps I often have, even people with memory issues.  I also find ways to trigger retrieval of memories indirectly, but I can’t always do that.

So there’s a problem of access to memory that has to do with inertia.  And inertia is all about the difference between a voluntary thing and an involuntary or triggered thing.

But there’s more to it.

Sometimes my memory of the world shrinks so extremely that I can’t remember or perceive anything outside of what I am perceiving in the moment.

Often, events and sensory input that are too much for my brain to process, crowd out memory and mess up something about my ability to remember recent events (past few weeks or months at least) clearly.  After a time (days, weeks, months), those recent events come back into memory.

When I’m delirious, I’ve lost memories .  Sometimes even after I’m not delirious anymore they never come back.  I’m lucky I can remember the period around my father’s death, because several months later I lost it all while delirious.  When I got better I got back that period, but lost a couple months in between, never returned.

But at any rate, with all this going on, it is not unusual for the whole world to be new to me, my only guides for how to behave not consciously available to me, some pattern laid down by decades of repetition of this process so that I can normally function.  But where the entirety of time besides now is blank, and the entirety of the world outside here is blank, and I am starting anew, all over again, until memory comes back.

And it does come back.

But the world is a very weird, scary place when most of is blank.

Especially when I can perceive something is supposed to be there, out in the blankness, but all I can find is white nothingness.

I have recently begun telling people about this because my friends have told me to hide less from them.  But it’s frightening.  I am concerned if people knew the extent to which this happened, they’d see me as incapable of making decisions.  And that’s dangerous.  There are reasons i cover for it.

But understand that I am always covering for it.  This never goes away.  It’s never not been there.  There are additional issues over the years what with delirium, but this happens all the time.  It happened to me pretty extremely this week because of an overly long, tense medical appointment.

And I’ve given you the simplistic version.  There’s a lot more to it than this.  Sorry for all the technical language, but it’s more precise than the language most people use for memory, and I needed that.  And I need to be more open about how my mind actually works.  There’s a lot of things I have trouble doing, or do very differently than usual, that I am always covering for out of fear.  I’m tired of covering for thm.

 

 

 

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.