Posted in music

Why I admire Kate Bush.

Kate Bush, arms outstretched in a white dress on a black background, shown from two views at once, performing in the music video to Wuthering Heights.
Kate Bush performing in the music video to “Wuthering Heights”.

It’s definitely not because her style of music is the sort of thing I would normally listen to. It’s actually not, and it’s taken a while for some of her songs to grow on me. Then there are others I still don’t really want to listen to. So that’s not what I’m talking about.

I wrote a post before praising the best aspects of dorkiness. And one of those things is doing what you do without giving a crap what it looks like to other people. And that is what I really admire about what Kate Bush has done with her music and her dance and everything else.

It’s her dancing style that really caught my eye. She’s trained in both dance and pantomime pretty extensively. And in her music videos, she does this extremely theatrical dance that goes with the characters she is portraying.

That’s another thing that’s unusual about her music. She is a singer-songwriter. But she rarely writes about herself. She writes songs that portray specific characters. Sometimes the character is one she makes up. Sometimes it’s a character from movies or literature. She has said that the reason she does this is the characters are far more interesting to her than anything she could say about her own life.

One of her most famous characters is Cathy from Wuthering Heights. She has a song called Wuthering Heights. She wrote it because she saw the ending of one of the movies to Wuthering Heights on TV once. And she was fascinated by the ghost character. So she read the books and wrote a song based on that character and the perspective of that character. And then she created this entire dance to enhance what she already had there. And the music video shows this dance she did as the character.

 

Another character she did was a fetus, in a song called “Breathing”. Specifically, a fetus who has noticed somehow that nuclear war has broken out, and is afraid to leave the womb because of radiation and fallout. This is a very unusual character, and one she created herself.

It’s not the only song she did about the Cold War either. Songs written about the Cold War during the Cold War are actually one of my interests. I collect them. But that’s a whole nother topic.

Anyway, in the music video, she does the same thing. She puts everything she has into acting out this character. Even when this character is a fetus inside the womb freaking out about the Cold War. Which a lot of people would find over-the-top, ridiculous, or something along those lines. She doesn’t care. She will put everything into her version of this character, and acting out this character on her entire body.

This is something that got her mocked from the moment she made it onto the music scene. People did not want to admit they were listening to her. People made fun of her at every possible turn. And she kept right on doing what she was gonna do. She kept right on with her particular artistic bent. And people, whether they would admit it or not, kept on listening to her and watching her. The sheer numbers speak volumes.

So throughout the 1980s and beyond, people were making fun of her in public and listening to her in private. It is only in recent years that people have admitted how much influence she had over an entire generation of musicians. And how innovative her music was, and how important she was.

This is because although her music has always been popular, it has never been cool. And it was never cool to admit you were listening to her. She was influenced by psychedelic musicians and prog rock musicians from the 1960s and 1970s, and at the time she came onto the scene, that kind of music was decidedly uncool. Her music was something different, but still decidedly uncool.

But it didn’t matter that it was uncool. People still listened. People still watched. People still imitated and emulated and were influenced.

And I love that no matter how much anyone made fun of her, she kept on going wherever her particular vision took her. She just kept doing what she was gonna do. And she kept on doing it very well. And that takes a certain kind of strength that I think is very important.

People have said extremely cruel things about how I look just naturally. People always have. The way I move. The way I sound. My mannerisms. Everything. I still remember another disabled person saying he was embarrassed that I would in any way be considered to represent him. Not because of my viewpoints, but because he was embarrassed by how I move on camera. He was embarrassed by literally the way my body looks.

Having people be embarrassed by your existence is part of the sucky part of being a dork. In the least voluntary sense of the word dork. It’s not a good feeling when people are embarrassed to be seen with you because of things you will never be able to help. Or embarrassed to be associated with you. It’s just unpleasant.

And I see a lot of that embarrassment when people talk about Kate Bush. Now I don’t know how much of what she did was a personal choice, and how much was just a product of how she naturally functions in the world. But I see people who are embarrassed to watch her, or embarrassed to admit they like her music or her dancing. And that seems pretty terrible to react to someone that way. Publicly. And a lot of the mockery seems to stem from that.

But I seriously love that no matter what anyone said, no matter what anyone did, no matter how many parodies anyone made in a cruel way, she just kept on doing what she did. She just kept pursuing what she thought was the right way to be doing music and dance and art. And she made some amazing stuff.

And all of it, even though it is characters, she shows through. Who she is shows through in everything she does, not because she breaks character, but because of the styles she chooses to portray these characters with. And because her body moves in a way where you can see something of herself showing through in every movement she makes no matter what she’s doing — something true of me as well.  And she allows herself to show in these respects, extremely publicly, no matter how anyone else publicly responds to it.

I sometimes think people are embarrassed by things like earnestness, genuine enthusiasm, and authenticity.  She’s got plenty of all of that.

And that is why I admire Kate Bush.

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Posted in Being human

What fiery really means.

My hand with a large fiery-looking amber ring on it, as well as a turquoise ring with two hearts.
My hand with a large fiery-looking amber ring on it, as well as a turquoise ring with two hearts.

Someone replied to one of my posts praising my fiery and caustic spirit.

I wasn’t aware I was caustic.   I’m pissed enough about the developmental disability system at this point I’m sure I could be coming off that way, I just wasn’t aware of it.

But fiery, yes.  But fiery is so much more than angry, and I want to talk about what fire means in my life.  Because even I misunderstood it until it nearly wasn’t there, several times.

You can’t live without fire. Fire is vitality, fire is the entire force of your life. And I wrote something a long time ago about fire. And I’m gonna write it again right now:

And I reached inside of myself. And I found that fire. And now that fire is burning its way out from the center and into the rest of me, as bright as the sun.

I associated fire with the kind of anger problem I used to have, and thought it was good riddance when the anger problem disappeared, but the fire went into hiding at the same time.

But fire isn’t about anger.

Fire is about vitality and passion.

And coincidentally, right as I was reaching inside myself for that fire, I was also going onto steroids for adrenal insufficiency. And the adrenal insufficiency had, for roughly 6 years, muted my ability to feel the fire that’s always been there.

And when I went onto the steroids, fire came back, only this time it was beautiful, not destructive. It was beautiful and it was life coursing through me, and it was a sensual appreciation of everything around me, and it was everything I’d lost.

And that fire gave me a backbone I hadn’t had, and a strength, and a focus.

I was wrong, before.

Because I need that fire.

Everything is different. Everything.

And the fire means this life goes through everything I do and see, just this intense, fierce, life.

In a redwood forest, fire is what makes the trees burst out of the ground, rocket towards the sky, and make even more of themselves on their own branches to rocket towards the sky with them. Fire is what comes from the sky and gives life to all the plants, which give life to everything that lives from the plants. Beneath the ocean, fire is what comes from beneath the earth through volcanic vents to allow life to flourish in the depths.

We can’t have life without fire.

So that’s basically a combination of things I wrote about fire years ago when I finally got treatment for my adrenal insufficiency. I had been slowly drained of fire for years until I almost died. So I know that without fire, you can’t even breathe, you can’t even move.

I got a scary reminder recently what it’s like to live without fire, not enough fire. Because when I had C. diff, my already messed up guts would not give me a consistent dose of hydrocortisone. They would absorb it so inconsistently that I would have too much sometimes, not enough others, and no way of predicting how much would absorb, and how much would just not happen.

I wrote a series of messages on my Facebook when I was dealing with a extreme lack of fire. A lack of fire that comes from lack of cortisol, that is not being properly replaced with the right amount of steroids.

Here are some quotes from that:

I am not a robot. I am not a robot. I am not a robot.

I’m trying to remember things connected with being alive and keep threads to how I feel when not washed out and 2-D.

I don’t want to fade until Anne only senses me as a wispy thing and I forget fire and passion and motivation ever existed.

I’m scared of forgetting again what it means have even marginally sufficient cortisol. I’m scared of settling.

Feeling half dead should not be acceptable. There should be fire.

I am tired of having the “I am alive” feeling sucked out of my body randomly all day and people thinking it’s good enough.

Trying to remember what 3-D full-color emotions feel like and that their absence means something is wrong. DON’T GET USED TO THIS.

The ebb and flow of THIS med dose is intolerable swinging between Spockish and Spock.

I still have emotions but they’re intellectual and in the distance. I can’t feel them in my body.

Losing visceral motivation makes it hard to move or ask for help. Can’t they see the danger? Hold tight with mind and await meds.

Alarm bells flash and flash and flash and flash and flash and flash. Can’t anyone else around this place hear the silent bells?

It’s weird being propelled more by a deep instinct warning of wrongness getting wronger than by any felt emotion.

 

See, I was losing fire again. But it was happening with enough inconsistency that I could feel it and I could feel how wrong it was. Because sometimes I would have enough fire and sometimes it felt the fire almost went out.

Before I went into the hospital, I actually had a night where a friend had to help me get my steroids. Because I knew something was wrong. I could not think I could not put thoughts together. I could not feel anything anymore in terms of emotions. And all of that motivation to get you to get up and go when you need to get up and go was not there. And I was barely able to even alert my friend that something must be wrong.

And I had those completely silent but overpowering alarm bells going off. They come from something deeper inside you. But those alarm bells were barely enough to get me able to communicate what was happening. My friend had to put together the rest, and then she had to persuade me forcefully to get up. Because even though I knew my life was in danger at that point, that was not enough to get me out of bed and heading toward the fridge to get my steroids.

This was not because I didn’t want to be alive. I was not depressed. When you don’t have enough cortisol, your everything goes flat. Your emotions, your motivation at all, turn two-dimensional. You can’t even, at least at that point, I could not even string a thought together. Thoughts were these weird scattered pieces of things off in the distance somewhere.

So I have very intimate knowledge of what fire is and why it is necessary. And fire means a whole lot more than getting angry about things. You need fire to get angry. You need fire for everything.

You need fire for creativity. You need fire for passion. You need fire for emotion. You need fire for feeling alive and vitality. You need fire for resilience. You need fire for physical survival. You need fire for all these things and more. Because fire is life. And I have had the fire almost drained entirely out of be at times, and there is nothing to show how much you need fire more than the contrast between not having it and having it. Because it is night and day.

So, yes, I need to stay fiery. But I mean that in the sense that I need to stay alive, I need to stay connected to my body, I need to stay physically viscerally present in the world, all my feelings all my thoughts all my life all my creativity playing out physically in who I am.

Fire is the life inside all of us.  We can’t exist without it.

Posted in music

A musician I wish more people knew about.

So I wish there was more material online, but there is this amazing blues musician that I only really ran into by accident. I had a staff person who was involved in the local lesbian community, and involved in putting on events. So I ended up being sort of part of that entire setup crew for a woman I had never heard of or seen before.

Her name was Gwen Avery. It was one of the best concerts I’ve ever been to. I had a wonderful time. I got to contribute to the preparations, and that was a big deal. Because people tend to assume I can’t do those kind of things. But I actually tend to do really well in environments where I am clear on what I need to do, and it’s something I can do pretty easily physically. And that’s the kind of thing that had me doing. So I was actually able to make genuine contributions to the prep work for the concert.

There had been some arguments over whether to take me. Because some people thought I would behave in embarrassing ways, and that I would not be able to do anything to contribute to anything was happening. And that I would just be like a burden on everyone or whatever. And that’s of course not what happened and the person actually said she was glad I came along. And that she was glad she got to know me better.

Anyway Gwen Avery’s singing and playing is amazing. You can’t help but move to it, at least I can’t. And it’s one of two concerts I’ve been to where I had no knowledge going in of even what kind of music I was gonna be listening to, but turned out to be two of the best concerts have ever been to. So I really wish there was more of her available online. All I can really do is show you a video of some interviews with her and some of her music.

And a Gwen Avery gallery with an article about her life.

She had the kind of voice I can listen to pretty much forever.  Textured and interesting and with a lot of depth.  I’m glad I got to listen to her and even meet her before she died.

Posted in culture, music

The common thread between country music and prog rock (no really!)

This is extremely heavy on the embedded videos.  Most don’t have lyrics embedded but the lyrics can be looked up.

So I know this makes me kind of weird and a little stereotypical for an Okie. But my absolute favorite music is country music. Not whatever the hell they’re calling country these days. But actual country music from back in the day, or country music that at least sounds like country music. Not this crap it sounds like easy listening with a southern accent.  Or pop with a southern accent.  Or this weird overproduced bullshit that sometimes passes for country these days. But country country. And sometimes there is good country that’s made these days, but it’s hard to find.

But I do like a lot of other kinds of music. There aren’t many kinds of music where I don’t like some of the things that are in them. And one of the things I like sometimes is prog rock. Prog rock is kinda hard to describe, but like you know those long 70s concept albums and that kind of thing. That’s prog rock.

Anyway, I finally figured out what it is that draws me to both country music and prog rock. It’s the thing they both have in common: the storytelling. They don’t tell stories in the same way. But they do very often tell stories. I would of course love to hear some kind of fusion of country and prog rock.  But the closest thing I could find was a weird bluegrass-esque version of Pink Floyd’s “The Wall”.  Yes this exists, this is “Comfortably Numb” by Luther Wright and the Wrongs:

I can’t find country prog or prog country or whatever you would call that combination. It’s possible, but there’s reasons the two are unlikely to mix much. Unfortunately.  Because I would love to hear it.

In country music, the song usually tells a story. It’s often the story of one person.  It will be often told from the point of view of that person, even if the singer isn’t that person. The singer may take on the persona of whoever they’re singing about. And that is normal common practice in how country does these things.

The singer will immerse themselves in this character and bring it to life.  On a very personal first-person level a lot of the time. They might be singing about other people too, it’s not always in first-person. But there’s usually a story. Sometimes it’s a fairly involved story.  Sometimes more of a character sketch.  Sometimes just one character at one moment in time, and what they’re going through. And it’s usually limited to the one song, they don’t do entire albums that are all one story. Even if they do an album on a theme, they’re gonna have just one story per song.

In prog rock, you often get elaborate stories. They often have a long plot.  They may jump around between characters, not making it easy to understand what’s going on. And they take place over the course of an entire album. It’s called a concept album. I used to, not knowing the term concept album, just call them story albums. Not all concept albums tell a story that way. But a lot of them do. And a lot of them it’s a long elaborate story, told over the course of an entire set of songs. Sometimes it goes in order like a regular story. Sometimes it’s nonlinear, with callbacks to different parts of it in the shape of the music itself. It’s definitely different than the way country would handle a story.

I’ll give you a couple of examples.

One of my favorite country songs is Lacy J. Dalton’s “The Girls From Santa Cruz”. As far as I’m concerned it’s about lesbian horse thieves. That’s what I want to believe anyway.

So it’s about two women who steal a stallion. They get chased down by a Texas Ranger.  The character who is singing is lamenting the fact that she has lost her companion Kim. Because Kim and the Ranger fall in love in the end and forget about her. She sounds a lot more broken up about what happened than someone just losing a friend or partner in crime. So to me it’s about lesbian horse thieves, and you can’t convince me otherwise. But you can see either way it’s a pretty simple story.

I grew up on a prog rock album called “Pink World”, by Planet P Project. It is a long double record that tells an elaborate story. Sometimes from the point of view of many characters.  Here’s the full album, all 1 hour 20 minutes of it:

The plot is a little more elaborate:

A boy drinks bad water behind a factory and get psychic superpowers. He starts predicting the end of the world (they wrote this during the Cold War). He gets taken into a government lab where they try to study him, but they’re also afraid of him. And he escapes. He can’t talk. But he can move things with his mind and he can read people’s minds. And someone pushes the button. Nuclear war breaks out.  This boy, Artemis, starts a cult and ends up saving a bunch of people by creating some kind of barrier that they can live behind. Except everything in this place he created resembles 1984. Or some kind of totalitarian dystopian cult type thing. They stay like that unchanging who knows how long. Artemis decides he made a mistake and just abandons everyone. And that’s the end of the album.

A lot of twists and turns and weirdness in there that I didn’t even get into. But you can see it’s an elaborate plot that takes place over two whole records.

Here’s a couple specific songs from it if you don’t want to listen to the whole thing.

“What I See” (from the point of view of Artemis predicting nuclear war and what he’ll do about it):

“In the Zone” (from the point of view of a resident of the cult/dystopia Artemis creates to survive the war):

Prog rock and country obviously handle stories in entirely different ways. But they do both tell stories.

Here are some more examples.  It’ll be a little country-heavy because the prog rock examples are often longer songs or entire albums at once:

COUNTRY: “Grandma’s Song” (Gail Davies)

PROG ROCK: “Thick as a Brick” (Jethro Tull)

COUNTRY: “Jesse Younger” (Kris Kristofferson)

COUNTRY:  The Devil Went Down to Georgia (Charlie Daniels Band):

PROG ROCK:  Doomsday Afternoon (full album — about authoritarianism and environmental destruction) (Phideaux)

PROG ROCK:  “Candybrain” (one song from Doomsday Afternoon) (Phideaux)

PROG ROCK: “Micro Softdeathstar” (another song from Doomsday Afternoon) (Phideaux)

COUNTRY:  “Gone, Gonna Rise Again” (Kathy Mattea)

COUNTRY: “This Van’s For Sale” (Wayne Parker)

COUNTRY: “Calico Plains” (Pam Tillis)

COUNTRY: “Up With the Wind” (Lacy J. Dalton)

PROG ROCK: Number Seven (full album — about a dormouse who survives nuclear war)

PROG ROCK: “Darkness at Noon” (Phideaux, one song from Number Seven)

COUNTRY:  “I’m Hungry, I’m Tired” (Gail Davies)

PROG ROCK: “Part of the Machine” (Jethro Tull)

 

PROG ROCK: “Moribund the Burgermeister’ (Peter Gabriel) – yeah I know people don’t count his solo career after Genesis as prog rock, but this song was.

COUNTRY: “Eighteen Wheels and a Dozen Roses” (Kathy Mattea)

COUNTRY: “Beer Drinkin’ Song” (Lacy J. Dalton)

COUNTRY: “The Legend of Wooley Swamp” (Charlie Daniels Band)

COUNTRY: “That’s Just About Right” (Blackhawk)

COUNTRY: “Mama Tried” (Merle Haggard)

COUNTRY: “Dakota (The Dancing Bear)” (Kris Kristofferson and Rita Coolidge)

PROG ROCK: “The Hazards of Love 3” (The Decemberists)

COUNTRY: “Changing All The Time”

PROG ROCK:  “Static” (Planet P Project)

PROG ROCK: “Epitaph” (King Crimson)

COUNTRY: “Somebody Killed Dewey Jones Daughter” (Lacy J. Dalton)

COUNTRY: “Little Brother” (Wayner Parker)

Music as a means of storytelling is really important to me.  Music is one of the first ways I could understand and use language. It’s still easier for me to understand something if it’s a song.  Or to communicate by singing or playing music. There’s something about music that brings language together.  It brings comprehension together. It brings lots of things about communication and understanding together.

By the way, the guy who made “Pink World”, his name’s Tony Carey. He does his prog rock science-fiction music under the name of Planet P Project. What initially drew me to Tony Carey was not that “Pink World” was this giant story album. It was Tony Carey’s accent. Because Tony Carey is an Okie. Like my family. So he sounded familiar, he had that weird combination of a California accent and a bit of southern thrown in. And it reminded me of my father’s accent so I just felt comfortable with this guy’s music.

I later found out he did a song about the Dust Bowl (“Dust”):

And the funny thing is, as prog rock as Planet P Project is, someone once asked Tony Carey if he would ever do a country song. His reply was, “They’re all country songs.”

Posted in Being human

Dorkiness is where it’s at.

It’s become, in some circles at least, cool to be in nerd or geek. It’s never become cool to be a dork. And I am a dork. I am a proud dork. I want to tell you why being a dork at its best is a very good thing. Something that maybe people should even strive for.

Being a dork is not always a choice. The moment I saw Susan Boyle on YouTube, I felt an immediate kinship. It was not because she had a developmental disability, although who knows that may have helped. It was because she was, just like me, a dork through and through. I am not using dork as an insult here. But I am talking about the kind of dorkiness that is just not a choice.

That kind of dorkiness, it means always saying something that’s wrong to people. Like something that will get you considered horrible socially or whatever. Never quite fitting. Never quite fitting even among the people who don’t fit. Managing to offend people without even trying. Making people squirm. Making people uncomfortable. Not being able to turn this off for the life of you. And always having that effect on people.  Always embarrassing everyone around you no matter what you do.

But the best part of being a dork is that it does not require any particular skill, the way being a nerd or being a geek does. It does not require a particular set of interests. It does not require anything but being yourself. And while those of us like me can’t control that part about being yourself, we can turn it into something good. We turn it into something good when we stop caring whether what we do is cool. Whether it will let us fit in or stand out. Whatever it is, we learn to be ourselves in a good way. We learn to do things that are just fun even if they look weird, awkward, disturbing, socially inept, out of place, not the time or the place, distracting, embarrassing, whatever. If we’re not hurting anyone, there’s nothing wrong with doing what works, what is fun, and not being bound by certain social restrictions. The best part of being dorky is when you really don’t care what you look like to anyone. When you just do what you do and it works because you’re just doing what you do and you don’t care.

One of my favorite examples of utterly wonderful dorkiness was when a caregiver and I, both of whom are extremely dorky, were in a local thrift store. And a song came on the radio. And without even looking at each other, the two of us just at the same moment broke into dance, and danced through the entire song in the middle of the store, and we just enjoyed ourselves. We didn’t give a shit what we looked like. We only gave a shit that we were having fun.

Ever since I got out of the hospital, I’ve been trying to move around more now that I can. And for me that’s involved a whole lot of dancing. And it’s the kind of dancing where I’m just moving to the music, not where I care too much what I look like. So in the spirit of dorkiness in its best version, here is a bit of me dancing.

 

I’d encourage everyone to be a bit more dorky.

Posted in death, poetry

R.I.P. Peri

Peri, the Iron Parrot as we called her, because of her ability to survive damn near anything, has died of fatty liver disease. May she rest in peace.

And I can only give her this poem that I wrote to her when we were sure she was dying before, but she wasn’t done yet.

Now, it is hard to imagine my friend Laura without this parrot, the two of them were a pair. They went together somehow.

Anyway, all I have to give is this poem and these pictures.  I’ll miss her.  A lot.

Over the trees
I see
A flock of birds
Made out of nothing but light
A flock of birds
Waiting for your final flight
So don’t be afraid
Don’t be afraid when they come
They’re only coming
To welcome you home
When it’s time to fly away
Then fly away
Don’t hold out too long
Trying to stay
You have the whole of eternity
To fly into
And everyone there
Will join with you
So when you know it’s time
And you’ll know
Fly away
Leave us behind
Our love will ensure
We won’t be long behind you now
We won’t be long behind
Behind you now

Peri, a Quaker parrot, standing on her cage with her back to the camera.
Peri with her back to the camera.
Peri, a Quaker parrot, standing on her cage dancing a little.
Peri dancing with me on her cage.
Posted in Being human, Nature, redwoods

This is the heart of everything I do and everything I am.

 

Elaborate crocheted wall hanging depicting the forest floor of Redwood Terrace.
Elaborate crocheted wall hanging depicting the forest floor of Redwood Terrace.

This is an excerpt from a book by Terry Pratchett. It’s called The Wee Free Men. It’s a children’s book set in the Discworld universe. Children’s books are where a lot of wisdom about the world is hidden. If it’s the right kind a children’s book.

“Oh, they’re around…somewhere,” said the Queen airily. “It’s all dreams, anyway. And dreams within dreams. You can’t rely on anything, little girl. Nothing is real. Nothing lasts. Everything goes. All you can do is learn to dream. And it’s too late for that. And I…I have had longer to learn.”

Tiffany wasn’t sure which of her thoughts was operating now. She was tired. She felt as though she was watching herself from above and a little behind. She saw herself set her boots firmly on the turf, and then…

…and then…

…and then, like someone rising from the clouds of a sleep, she felt the deep, deep Time below her. She sensed the breath of the downs and the distant roar of ancient, ancient seas trapped in millions of tiny shells. She thought of Granny Aching, under the turf, becoming part of the chalk again, part of the land under wave. She felt as if huge wheels, of time and stars, were turning slowly around her.

She opened her eyes and then, somewhere inside, opened her eyes again.

She heard the grass growing, and the sound of worms below the turf. She could feel the thousands of little lives around her, smell all the scents on the breeze, and see all the shades of the night.

The wheels of stars and years, of space and time, locked into place. She knew exactly where she was, and who she was, and what she was.

She swung a hand. The Queen tried to stop her, but she might as well have tried to stop a wheel of years. Tiffany’s hand caught her face and knocked her off her feet.

“Now I know why I never cried for Granny,” she said. “She has never left me.”

She leaned down, and centuries bent with her.

“The secret is not to dream,” she whispered. “The secret is to wake up. Waking up is harder. I have woken up and I am real. I know where I come from and I know where I’m going. You cannot fool me anymore. Or touch me. Or anything that is mine.”

I’ll never be like this again, she thought, as she saw the terror in the Queen’s face. I’ll never again feel as tall as the sky and as old as the hills and as strong as the sea. I’ve been given something for a while, and the price of it is that I have to give it back.

And the reward is giving it back, too. No human could live like this. You could spend a day looking at a flower to see how wonderful it is, and that wouldn’t get the milking done. No wonder we dream our way through our lives. To be awake, and see it all as it really is…no one could stand that for long.

Tiffany draws her strength and everything she is, from the land she was born on. In her case this is The Chalk, the Discworld equivalent of the Chiltern Hills chalk country that Terry Pratchett himself was from.

I also draw my strength and everything I am from the land I was born on. It’s a place called Redwood Terrace. It’s very small, and even people who live nearby have rarely heard of it.  But it means everything to me, and to the few other people I’ve heard of who were born there.

Everything described in the passage is something I have experienced with Redwood Terrace. That is why the place is sacred to me. That is why no matter where I go, I have roots that go down right into that soil. And I may live in Vermont, but a part of me is always in Redwood Terrace.  It doesn’t go away with distance.

Jar of dirt from Redwood Terrace.
Jar of dirt from Redwood Terrace.

The photograph at the beginning of this post is actually a wall hanging I made. I designed it, and I crocheted it. It is my tribute and reminder of the soil the forest floor in Redwood Terrace. I also keep a jar of that because my connection to that dirt and everything under and inside of it it is that important.  I’ve heard of someone else from Redwood Terrace who does the same.

I won’t say a lot more. Because there’s a point where you’re trying to talk about something that doesn’t really have words. And if you put too many words on it you just confuse people including yourself. But Terry Pratchett did an incredible job of writing around an experience that I have had with Redwood Terrace. And that other people I know who have that kind of strong ties to a particular place, they’ve experienced similar things as well.  The book may be children’s fantasy, but the description is something more real than you’ll get in a lot of nonfiction.  You find that in a lot of children’s books if you know where to look.

So this is really the heart of my existence. It’s not something I always talk about. But it is always there.

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A tree with moss and fungus in Redwood Terrace photographed by my best friend.
Posted in Developmental disability service system

Big Words

An old-fashioned girl and boy, she is older, and she is pointing in his face as though lecturing to him. A caption says, "People think I'm too patronizing. (That means I talk down to people.)"
“People think I’m too patronizing. (That means I talk down to people.)”

So years ago I took a sexuality and relationships class from my developmental disability agency.  The class wasn’t actually half bad and I learned a lot. One of the two instructors, though…

So there’s a bunch of us in the lobby of the building waiting around for class to start.

And they decide to do some kind of introduction to the class down there in the lobby before we go up to the room the class is in.

And there’s two instructors, a woman and a man.  I know the man, he’s okay.  But the lady is one of those people who’s secretly terrified of people with developmental disabilities and masks it with twenty layers of condescension.  And they always think we don’t notice. We always notice.

So she’s talking down to us, and asking us what we expect to learn in the class, and so forth.

And a guy with an intellectual disability very deliberately asks, “Are we gonna learn about cunnilingus?”

She flinches, tries to recover, goes five times as sing-song, and says, “Woowwwwwww, that’s a biiiiiiiiig woorrrrrrrrrrrrrd.”

We were… unimpressed with her, to put it mildly.  And she had no idea what an ass she was making of herself.

Anyway, I wish I could think quicker on my feet, or I’d have quoted Terry Pratchett:

“Hello, little girl,” he said, which was only his first big mistake. “I’m sure you want to know all about hedgehogs, eh?”

“I did this one last year,” said Tiffany.

The man looked closer, and his grin faded. “Oh, yes,” he said. “I remember. You asked all those… little questions.”

“I would like a question answered today,” said Tiffany.

“Provided it’s not one about how you get baby hedgehogs,” said the man.

“No,” said Tiffany patiently. “It’s about zoology.”

“Zoology, eh? That’s a big word, isn’t it.”

“No, actually it isn’t,” said Tiffany. “Patronizing is a big word. Zoology is really quite small.”

-Terry Pratchett, The Wee Free Men (exchange between a girl named Tiffany and a wandering teacher trading knowledge for food)

As it is, I think we all settled for rolling our eyes and the like, which our instructor of course missed entirely.   Just like she missed the point of the guy choosing a word like cunnilingus when being talked down to…

Posted in medical

Big fat hairy deal: Why I wasn’t diagnosed with a deadly disease until it became truly life-threatening.

I recently read “Doctors Told Her She Was Just Fat.  She Actually Had Cancer” from Cosmopolitan.

I didn’t know the full story behind this until I talked to my doctor recently, but I do have a similar story to tell.

I have severe adrenal insufficiency.  By severe, I mean that by the time they actually checked my cortisol levels, they couldn’t find enough to measure.  Nor any ACTH to measure either.

There had to be some cortisol or I would’ve died.  But I was already waking up nightly too weak to hold my head up, move my hand, or breathe on my own (I had a bipap with central apnea settings that saved me by going into vent mode, but the alarm would go off endlessly because even awake I couldn’t get a breath).   So it was a close call by the time they found it, and I’d been aware I was headed towards dying for awhile by then.

It turns out I was tested four years earlier.

It turns out that my cortisol levels were low — not as low, but low enough they’d normally be of concern — during the test.

It turns out the woman who did the test did not bother to tell anyone this or do further testing to confirm something was wrong.  Even though my health was already going to shit in a major way at the time.

Why?  Because I’m fat and hairy.  Basically.

She didn’t test my cortisol just randomly.

She didn’t test my cortisol because she was concerned about adrenal insufficiency.

She tested my cortisol because she looked at my body type and assumed I might have Cushing’s syndrome.  Which is the opposite of adrenal insufficiency:  Too much cortisol.

I have had more hair on my body than the average female for a very long time.

I have fat in my abdomen and in other areas people see as Cushing’s-esque.

I have fragile skin and stretch marks because I’m hypermobile (I’ve had them since I was a skinny kid).  Nothing to do with Cushing’s.  Lots of people in my family are hypermobile.

Also practically everyone in my family is hairy and has this fat distribution pattern.

None of us have Cushing’s.

I can’t fault her for checking me for Cushing’s.  Generally every new gynecologist I see freaks out about my hormones until they figure out there’s not much abnormal about them.

But.

When the test came back low on cortisol.

She didn’t tell someone.

She didn’t retest.

She didn’t order further testing such as an ACTH stimulation test.

She didn’t forward this information to other doctors.

She just thought to herself, “Well it’s not high so it’s not Cushing’s so no problem.”

Four years before I was diagnosed.

Four years before I was absolutely sure I was gonna die before they figured out what was wrong.

FOUR YEARS because I was fat and hairy and looked like every other person in my family who doesn’t have Cushing’s.

Of course given the amount of steroids I’m on now, this poses a new question — how would we tell if I developed Cushing’s from my steroids?  But I assume it’s gonna be because of something other than the fact that I look like I’ve always looked.

(And apparently while I was in the hospital, an on-call doctor asked my doctors what on earth they’d done to me with the steroids.  My doctors had to say I’d always looked like this.)

Just take a look at these photos for a moment:

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My dad and me standing facing forward.  Same body type.
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My dad and me standing facing sideways. Same body type.
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My dad’s and my faces.  Same basic face, same basic areas of hairiness (unibrow, upper lip, chin), he’s just hairier.  (Also his face is thinner than usual there because he has cancer in that picture.)

My body type is basically exactly a shorter version of my father’s.  We’re just fat hairy people who carry a lot of weight around our bellies, among other places.  So are lots of people in my family.  Nobody in my family has Cushing’s.  As I said, it’s fine to check, prudent to check.  But when the test shows the opposite, shouldn’t someone be concerned before it becomes a life-threatening medical issue?

This isn’t the only time being fat has delayed a diagnosis, either.  It delayed my gastroparesis diagnosis, because they wouldn’t believe I hadn’t eaten until I was visibly not eating in the hospital and losing even more weight.  I lost a total of 75 pounds before they treated the combination of gastroparesis and adrenal insufficiency that was causing the weight loss — and I was still fat after I’d lost the 75 pounds.  I just weighed 170 pounds instead of 245.  Still fat.  Still a dangerous amount of weight to lose in a hurry.

But it looks like I’m gonna have to deal with “Are you sure this isn’t Cushing’s?” thing the rest of my life probably because I’m not gonna stop looking like this anytime soon, I’m not gonna stop taking steroids anytime soon, and because Cushing’s can be a real possibility when you’re on steroids for adrenal insufficiency.

But the amount that doctors can discriminate based on appearance — and it goes way beyond weight, especially if you add in sexism — is alarming as hell.  As well as the fact that with my old gynecologist, the bias was unconscious as far as I can tell, so it’s not like she was able to say “Hey wait a minute…”

Or in old doctorese medical chart slang, I’m FLK-JLD:  Funny-Looking Kid, Just Like Dad.