Posted in Death & Mortality Series

“Are you at peace with your decision?”

This post is part of my Death & Mortality Series.  Please read my introduction to my Death & Mortality series if you can, to understand the context I write this in.  Thank you.

What do you imagine is happening when you see this scene:

I am lying in a hospital bed, very ill with aspiration pneumonia and starvation.  I have a visitor from out of state, someone who recently lost her father to pneumonia and wants to see me just in case.  A doctor walks in.

This is a teaching hospital, so he’s not alone. He’s followed into the room by a line of assorted med students, residents, and the like.  I call them ducklings, because they followt he main doctor around in a line.  Someone online said “Not ducklings, doclings.”  So now they’re doclings.

So the pulmonologist — not my pulmonologist, just a pulmonologist — walks into my room followed by a gaggle of doclings, who fan out around my bed.  And the first thing out of his mouth is a solemn, “Are you at peace with your decision?”

I say yes.

He repeats his question, “Are you at peace with your decision?”

I say yes.

This keeps happening until he solemnly leads the doclingsgout

What would you assume was going on there?

Because I’d assume that I’d chosen to end my medical treatment and go home and die, or something along those lines.

But that’s not what he was doing.

His question was about whether I’d be at peace with getting the feeding tube that ultimately saved my life.

Guess what, doctor?

I’ve had feeding tubes for six or seven years now.

I’ve had my share of complications.  Infections, abscesses, a tube wrapping around my intestine.

I.  Still.  Want.  My.  Tubes.

My tubes are life, not death.  When you get a feeding tube, nobody should ever treat it as if you’ve just chosen to die.  But they do.

For my 38th birthday dinner, I had soup:  Sweet Pea (sweet peas) and Super Greens (spinach, broccoli, green peas, and coconut).

Mel eating green soup through hir J-tube.

Then I had kombucha.

Photo on 8-16-18 at 1.25 AM #2

I enjoyed all of it.

And I’d never have reached the age of 38 without my feeding tubes.

So the answer to the question is still the following:

Yes, but your question and the way you’re asking it could get someone killed.

Stop treating people choosing to live as if we’ve chosen to die.

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.