Posted in music

My lifelong nightmare in music.

At some point, my grandfather was involved in a Mason Williams benefit concert to save the Willamette River from damming.  This portion of the Willamette ran right through where my grandpa lived, and my grandpa was very musical, so it makes sense he would’ve been involved.  The upshot being that we had a bazillion records of Of Time And Rivers Flowing (a product from the benefit) kicking around our house, and listened to them a lot.

Anyway, the following song was probably the worst nightmare I could think of.  I was fascinated by it and horrified by it and felt every part of it as if it was happening to me every time I heard it.  Living without water is a terrible thing.  Think about that when you hear of water shortages, water crises, people with no access to water, people sabotaging the water supplies of would-be immigrants, take this song to heart.  I did, I always have, I always will, even when I was a little fuzzy on who Dan was (a pack mule, although I’ve heard some people say he could be a horse as well, but definitely originally a mule).

Lyrics:

All day I’ve faced a barren waste
Without the taste of water
Cool water
Dan and I with throats burnt dry
And souls that cry for water
Cool clear water

Keep a-movin’ Dan
Don’t you listen to him Dan
He’s the devil not a man
And he spreads the burnin’ sands with water
Dan can’t you see that big green tree
Where the water’s runnin’ free
And it’s waiting there for you and me?

The nights are cool and I’m a fool
Each star’s a pool of water
Cool water
With the dawn I’ll wake and yawn
And carry on to water
Cool clear water

Keep a-movin’ Dan
Don’t you listen to him Dan
He’s the devil not a man
And he spreads the burnin’ sands with water
Dan can’t you see that big green tree
Where the water’s runnin’ free
And it’s waiting there for you and me?

Dan’s feet are sore
He’s yearnin’ for
Just one thing more than water
Cool water
Like me I guess he’d like to rest
Where there’s no quest for water
Cool clear water

Keep a-movin’ Dan
Don’t you listen to him Dan
He’s the devil not a man
And he spreads the burnin’ sands with water
Dan can’t you see that big green tree
Where the water’s runnin’ free
And it’s waiting there for you and me?

Cool clear water

A mirage on the Mojave Desert, looking like water in the distance.
If you’ve never seen one, this is what a mirage can look like. That line about the devil spreading the sands with water is not really a metaphor. It actualy looks like water. Mirages are another thing that scared the crap out of me as a kid.  Water that isn’t water…

Also, always respect your environment if you’re headed somewhere like a desert because you just want to see its beauty or whatever other reason.  If you’re going somewhere without easy access to fresh drinking water, understand what that means.  Respect that you could die even if you know what you’re doing.  That should go without saying, but so many people enter harsh physical environments unprepared and don’t understand what that means.  If you don’t go in thinking you could die even if you’re prepared, you’re a fool many times over.  “Nature” won’t automatically provide and save you, “nature” may chew you up and spit you out dead.  Always respect the power of where you are, always respect your smallness in the world, always respect your fragility against the elements, always respect that if you get into trouble in such an environment other people may die trying to save you or locate your body (and still may not succeed).  Understand your responsibilities, understand danger, have some frigging respect, don’t undertake such things lightly.

More about the concert and the album:

“Of Time and Rivers Flowing” was a concert I put together during the summer of 1982. The concept was to present, in chronological order, songs about rivers and water that have been popular throughout history. The intention was to show our long-standing relationship with rivers –that they run not only through the land, but through our hearts and minds as well.

The idea of an entire program based upon rivers and water came about in this manner. In May of 1982, the Springfield Utility Board announced plans to put five hydroelectric dams on the North Fork of the Middle Fork of the Willamette River, one of the most beautiful, wild, free-flowing streams left in the country, and also my favorite trout stream.

I went with several other citizens from Oakridge to a public forum held in the high school auditorium to discuss the matter. Everyone was adamantly against the idea of the dams. Feelings ran high.

However, one group at the meeting, the McKenzie Flyfishers, a small club of flyfishing enthusiasts from Eugene, Oregon, was organized with facts and figures about the negative effects this project would have on the river should it come to pass.

After the meeting, in spite of the fact that all felt they had done their best to speak on the river’s behalf, for me the idea persisted that if only somehow the river itself could have been at the meeting to speak for and defend itself at its own “trial,” so to speak, it would have made the most eloquent statement of all.

Music and water have much in common; rivers are like music and music is like a river. They speak well of one another. Both flow through time, purifying themselves as they go, nourishing life along the way.

Then it dawned on me that the river could have a voice, in the form of the songs and music it has inspired over the years. Music could bring the river to the meeting! I began searching for songs about rivers and water and managed to collect more than 400.

One of the people I met through the McKenzie Flyfishers was Jim Williams. An avid flyfisherman,he not only lives right on the McKenzie with a drift boat ramp in his backyard, he is a past president of the McKenzie Flyfishers and of Oregon Trout as well. He and his wife, Bonnie, became and continue to be my greatest allies and supporters.

In March of 1983, the McKenzie Flyfishers and I joined forces to present three benefit performances at the Hult Center for the Performing Arts. We sold out all three shows and the Flyfishers used the money earned to successfully lobby a bill through the Oregon State Legislature. On July 6, 1983, the governor signed a bill formally adding the North Fork and its headwaters, Waldo Lake (the purest lake in the world!), to Oregon’s system of protected State Scenic Waterways.

Only two percent of the rivers in America are still wild, free-flowing streams. Federal laws set up to encourage energy development have not adequately addressed the numerous other benefits rivers can and do provide. In the ever-increasingly industrialized world in which we live, the natural river becomes a rare gem impossible to value, possessing an intrinsic reality unrelated to economic profit.

Today the “Of Time & Rivers Flowing” concert has continued to evolve in content. A reflection of “the river” metaphorically through time, it is a chronological river of musical history spanning almost 400 years.

The songs tell the story of our long relationship with rivers. Rivers have been the routes of exploration, the boundaries of territories, the highways of commerce, and they have sustained us with water, food, recreation, beauty and inspiration. We sing of it, and in doing so, reflect ourselves. Some of the more recent songs, unfortunately, speak of the degradation the rivers have experienced in modern times.

The concert serves to draw attention to the universal experience that is the river. Of Time & Rivers Flowing makes the audience aware of the potential of our collective personality. By giving the river a voice – a chance to speak to us through the music it has inspired – it can remind us of what we mean to each other.

– Mason Williams
May, 1996

I grew up going to Oakridge (loads of family lived there) all the time, I (sort of) learned to skip rocks in its streams, and went swimming in Waldo Lake and all these places they talk about, so I know this river and the water and terrain around it intimately.  Water mismanagement is rampant in the American West and even the parts that have not been hit hard yet will feel the effects before long.  My father, like many Okies of his generation, is from the two counties at the epicenter of the California water crisis — this is personal as well as everything else it is.  But Tulare and Kern counties are only the beginning for California and elsewhere.  If you don’t pay attention, you won’t know what hit you.  Listen to the song and think about what it means to be without water.  Whenever you hear of water shortages, of people being made to live without water or safe water, of water and waterways and water sources being taken away or polluted or misused, anything, understand what no water means.  Really understand it.

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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 medical, Uncategorized

Hippie food

So I’ve been struggling to keep my potassium at normal levels even with supplements.  I’m losing fluid continuously out a hole that has to wait a long time to close naturally.  Combined with the fact I had cellulitis and ended up on antibiotics (yeah this surgery has sucked donkey balls with the complications, it was a simple surgery that went awry in a million ways) which did… things… to my digestion, I’d been losing so many fluids I went alkaline and all my electrolytes ended up askew because of that.  Even after the antibiotics stopped, still losing lots of fluids, still going alkaline.  (I have other risk factors for that but never actually go alkaline except when losing a lot of fluid.)

So my potassium was going low and staying low.  Not as low as it’s been in the past.  No stopping breathing, no seizures, no lab results marked “LL” for super-low instead of low, nobody telling me it’s critically low like at my last hospitalization.  But low potassium is too low potassium, and even with supplements it wasn’t staying up.

The nutritionst learned I like to go to the cafeteria and grab things like V8 to get some nutrients that aren’t in my tubefeeds.  She thought this is great.  (She seemed thrilled to have a patient whose main food craving is vegetables.  She must not get that a lot.)  Anyway she told me that they wanted to see if adding food sources of potassium would help me in addition to the supplements  So she gave me a list of high-potassium foods, which happened to mostly be foods I was already getting.  She also said I should try kombucha as a probiotic because it’s easier on my guts and on my tube than yogurt.  I’d never heard of kombucha but it is easier to digest and it smells good.

And she also gave me this nifty pass that allows me to buy anything in the cafeteria for free as long as I am a patient here!

Photo on 7-26-18 at 2.37 PM
My free food cafeteria pass!

So I go in there and the highest-potassium food in the cafeteria is coconut water.  Which comes in the most ridiculous hippie-oriented packaging.  So I’ve been stocking up on coconut water, kombucha, V8, and whatever other random liquids they have that are on her list.  But mostly coconut water because it has the highest potassium.

And it works, my potassium is up.

But I feel ridculous someimes with my cafeteria tray filled to bursing with hippie food:

Photo on 7-26-18 at 2.36 PM #2
Kombucha, coconut water, and V8. The kombucha and the coconut water feel like I’m eating hippie food.

But my potassium is up and indeed this morning my electrolytes were totally within normal range for the first time since I got here.  So the hippie food works!

So I guess I will be eating  lot of hippie food for a while.  If the hydration and potassium help keep me out of alkalosis, I’ll eat damn near anything.

But the hippie food… wow.  My friend wanted to go to the gift shop and get me some kind of stereotypical hippie items to go with my new food preferenes, but she couldn’t find any tie-dyed scarves or anything so she gave up.  She has been attempting to tell me that my plan to eventually create a prebiotic and diabetes-friendly vegetarian diet using regular food (i’m high risk for diabetes because steroids and my tubefeed diet is not good for that, and the prebiotics help prevent c diff which I’ve gotten already this year and am high risk for, meamwhile vegetarian because easier to hang in feed bags without worrying about rapid spoilage) proves that I have been a closet hippie all along who believes in natural organic everything and thinks my food choices make me one with the earth and karma and all sorts of ridiculousness.  (She gets very elaborate with her teasing but it’s all friendly.)

But in this case the hippie food is working, so I’ll put up with any jokes.  I find it kind of funny myself.

SERIOUSLY look at the packaging on that coconut water…

Posted in Death & Mortality Series, Developmental disability service system

When powerful people don’t care if you live or die…

umbridgewithteajpg
Dolores Umbridge might be the ultimate representation of Nice Lady Therapists at their utter worst…

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.

Not all of my thoughts on death and mortality are purely personal.  Although this is certainly born out by personal experience, this is much more in the ethical/political realm than my personal relationships with Death itself.  And is just as important to the whole picture of how I approach death and mortality, and one reason I’ve been so reluctant to post my actual experiences of Death being a benevolent and friendly force.

If you are disabled.  If you are cognitively disabled.  If you are developmentally disabled.  There are people who literally do not care one way or the other if you live or die.  And there are people who actually kind of wish you’d die — some more fervently than others.  And there are people in positions of power who will either fail to act in ways they would normally act, or actively push things a little more in the direction of your death (sometimes obviously, sometimes more passively with plausible deniability).  And to be unaware of this is to be unaware of serious danger.

These people can work in the medical profession.  Many do.

These people can work in agencies that are supposed to give you support.  Many do.

These people can work in any major position of power over you.  Many do.

And I’m not talking about serial killers, although they take full advantage of some of these situations in all kinds of ways.  I’m talking about people who mostly think of themselves as kind of normal.

But they can still kill you with apathy, indifference, and even varying degrees of malice.

My developmental disability agency just announced to me last night things that confirmed the warnings I had been receiving from friends that this kind of thing was at work right now.  They want me suddenly doing things I have never been able to do even at my physically healthiest (and they have ample documentation of my inability to do these things), things they have been doing for me for thirteen years without incident until my DPA filed a medical neglect complaint against them.

This is part of an attempt to railroad me into a service model (which requires moving out of my own home and would not get me any better care) that they prefer for me.

This is part of retaliation for filing the complaint, before which there was no talk of railroading me into this service model.

But they know.  Perfectly well.  That I was struggling to stay alive and stay out of the hospital with the amount of services I was getting.  (I have had recent unexpected cascade-effect complications from a surgery and have been going alkalotic at the drop of a hat.  Long story.  But it’s taken everything I have and every skill I have to stay out of the hospital and alive as long as I have, and I’ve been back in the hospital since Friday.)  And they knew that the reduction in services caused by a staff vacation/staff shortage contributed to my ending back up in the hospital.  They knew all this.

Then they sent me a letter saying I am no longer entitled to have anything done for me, that I must physically participate in everything.

They know, in detail, that this is not possible for me.  They know, in detail, that this would be dangerous for me on multiple levels even without a severe, acute health crisis.  They have documentation of every single reason in more detail than they probably care to know, that even moving my body through the motions is physically dangerous to me.

They know these things.

So the only conclusion I can reach when they insist that these things happen anyway, is that whether I live or die doesn’t matter to them.

The fun part is if I do die, I’m sick enough they’ll probably get away with it even if they’re very culpable in the events leading to it.

But my friends have been telling me I might not live out the year the way this agency has been treating me, when I probably would otherwise.

When I say I accept death, it does not mean I accept THIS.  This isn’t death that just happens.  This is some toxic combination of apathy and malice, and the worst part is I don’t know precisely where it’s coming from.  But people have warned me about it just before this happened.  And when I spoke to medical professionals about it, they told me this kind of thing is very real and something to always keep in mind.

So this is happening.  Now.  I am in the hospital.  And I got a letter that started out with a basic “Sorry you’re in the hospital” thing and then a “But we’re gonna try to make you do shit that’d probably kill you or land you back in the hospital to try” thing.  Which makes the “Sorry you’re in the hospital” part feel completely phony.

I was starting to feel a little better and look forward to going home sometime soon, maybe not as soon as I’d like, but soon.  But I can’t go home to being expected to physically do crap I couldn’t safely do on my best day.

And I can’t stress how much someone at some level is perfectly aware what this means that they are asking this of me just now.

And that they don’t care the risks to me (even if they think it’ll just push me into accepting their bullshit program) tells me they really don’t care deep down if I live or die.  Because people who care if you live or die don’t dangle you over a cliff (or even pretend to do so) to get you to do what they want, even if they think they have a good hold on you.  Ever.

And the fun thing is even if you see this, and even if those around you see this, and you see the patterns enough to know what’s happening, you can’t necessarily tell who precisely they are.  They may be someone you never meet directly.  But people who explicitly range from apathetic to malicious abour your continued existence are out there.  And unfortunately in our culture of familial and caregiver benevolence, nobody who hasn’t seen it for themselves wants to believe it, even though it’s something well beyond commonplace.

So you can’t always just point to an Umbridge.  Even if there’s an Umbridge, or a small army of Umbridges.  (Umbridge got into this post because someone referred to this, after reading the letters, as “Dolores Umbridge-level fuckery”.)

And for the record, accepting death as a whole does not mean I accept this kind of death for an instant.  If I die because I’m expected to do crap I’ve never been able to do and is now physically dangerous for me to even be walked through the motions of, that’s not just dying because I’d die anyway.  And there’s a huge difference.  And I hope I don’t have to explain that difference to anyone.  I’ve long said that dying because I’d die anyway is fine with me, but dying out of someone’s apathy or stupidity or malice will leave me the world’s most pissed-off ghost.  If I had any intention of being a ghost, which I don’t (not sure it’s possible but very sure that trying would be destructive).  But you get the idea.

Posted in Death & Mortality Series

I saw Death another time.

Yesterday.

She made her usual offers, silently.

Silently, I said not yet.

Silently, she turned away.

She is patient. She can wait forever. This happens often.

[Originally written sometime last week or the week before. In between two hospitalizations involving alkalosis.]

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.

A woman sits next to a grim reaper in a laundromat, both reading books looking bored.
When your relationship with Death becomes this casual…
Posted in Death & Mortality Series

Life has the fragility of a leaf full of holes shaking

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.

Shortly after I came home from the hospital, I stood outside next to a tree. I leaned on the tree because the short walk had wiped me out.

I felt my entire body at once. I was shaking. I felt like the thinnest and most fragile leaf, with holes in it. I started to feel transparent.

Light shone through the transparency that affected everything. With it, love, connection, change, truth, things that can never be named or described. Still aware of my entire body at once, the immense struggle it took to physically continue on any level. How close I was to death. Light through the leaves on the tree above me. Light through me invisibly, through everything.

I understand important things through the workings of the redwoods. Things without names, things without words. Redwood Terrace is holy ground embedded in my soul. Under my feet is earth, and roots, and many things unseen. And a connection to Redwood Terrace, outside time. And I am there, as well.

The fungal mycelium people never think about, under their feet all the time. Life, and death, and life, connected, changing, moving, things becoming parts of one another. An old, familiar, comforting promise: If you die this time, if you must step over that edge, we promise, we promise this is in store for you on every level, and if you want, we will eat you, we will change you, you will become life for so many, and on it goes, and this is love, this is our offering to the world.

If I knew I was dying and there were no consequences to these acts, I would put my last ounces of energy and effort into going to Redwood Terrace. I would find a hollow tree or the closest thing, curl up, and wait. The end might be painful, terrible, messy, but nothing is tidy about dying and none of us is guaranteed it will be easy. I would die in the place I have the most connection to. My last act to offer myself over to that place, body and soul. Everything from microbes to plants to animals to fungi would have a feast and I would turn into life, and things would be happening on levels that have no words and can’t be spoken of.

I will never do this. The person who found me. The pointless waste of resources looking for a crime that never happened. These are enough reasons, and there are more. But it’s what I’d want. I’ll settle for being composted and the results returned to the ground as close to the Mother Tree as possible. Nobody is guaranteed the life we want or the death we want. But that is the death I want.

But as I stand there I am aware of that promise, aware of the ancient threads under my feet tying death and life as essential parts of each other. Aware that should death happen there is beauty and love, not fear. How everything left of me can be absorbed into new life and timeless love. Aware how close I stand to the line, aware of the silent, patient presence of Death.

Death by now is an old friend. I’ve had too many close calls not to become acquainted. I once spent five weeks pretty much abandoned to live or die in a series of hospital rooms where for the most part I was unwanted. Doctors have said they’re surprised I pulled through without the ICU that time. I was alone for vast stretches of time, I was delirious and terrified. Death was there, though.

And I came to know Her as kind, caring, a friend. She was in no hurry. She can wait forever, She’ll find all of us one day. But when you sit close to her, sometimes you have choices nobody talks about. Where you could go with Her right away, or try and stay. And nobody would know. Trying to stay alive doesn’t guarantee life of course. I chose Death’s companionship, which doesn’t mean choosing to die. But every time, I chose to stay alive.

It’s odd that a vivid picture has formed in my mind of what Death would look like to me if she were human. She looks very much related to me, like an ancestor I’ve never met who strongly resembles many people on my father’s side of the family. Very old with long white hair. I guess she has some qualities in common with George McDonald’s multiple-greats-grandmother character in The Princess and the Goblin series. She’s very powerful, has the potential to be very kind and loving, and does not actually bear any ill will towards the living.

But She isn’t human and I imagine She looks different to everyone. I’ve never seen Her with my eyes, only had this vivid image of how She would look if human. But really my encounters with Death are more wordless and imageless and impossible to put down in writing, including that endless five weeks of Her. But I can feel when She’s hanging around me, and so can some of my friends. It always means something has slipped too close to completely guarantee survival.

Most people think of the survival instinct as something rooted somewhere in the brain. And there certainly is one there. But it goes deeper than that. All life from the first single-celled organism tries hard to live. Being alive is extremely difficult and takes work and energy. Without some drive for survival, nothing would bother. Every living thing has some version of this drive for survival.

And I am not just a brain, and my brain is not separate from my body, and my body is not just a carrying case for a brain. I’m made of all these cells, some working together, and all kinds of things. Each wanting individually and collectively to live. When I say I chose life, I don’t just mean my thoughts chose life. I didn’t always have enough thoughts to string that kind of choice together. My whole body chose life and fought hard for it and that’s why I’m still here. It seems arrogant to reduce myself to the little part of me that sits and reflects on things, then claim full credit. There’s nothing like delirium to show you the brain is just another body part. And when my mind wasn’t functioning right the rest of me still fought like hell to be here.

I’m well aware the things I’m saying could terrify people. But they are real for me. Death is welcome in my life. This is easily misunderstood, though. I don’t have a death wish. I used to. A grinding, unrelenting one that tormented me every second of the day and caused a big conflict with my survival drive, which I alternately thanked and cursed. That was a long time ago. Certainly long before I befriended Death.

Coming to know Death intimately has been one of the most life-affirming things I’ve ever experienced.

Posted in Death & Mortality Series

Death & Mortality Series.

Hello, and welcome to the first post in my Death & Mortality series.  You can read my Death and Mortality posts any time with the Death & Mortality Series category on this blog.  This post is essential to understanding the context of any post I make about my experiences and viewpoints around death and mortality, so if you’re able to read it please do.  It will explain what I do mean, what I don’t mean, and why I am planning to write so much about death at all.  And especially this post explains a particular way I do not ever want my posts about death taken or used.  So moving on…

Light shining through the canopy of a redwood forest in San Mateo County.
Canopy of Redwood Terrace with sun shining through.

I have meant for a long time to write a long series of posts about my relationship with death and my own mortality.  But the sensitive and complex nature of the topic has always stopped me.  It’s not the kind of topic where my views can be summed up in a single post.  At the same time, if I posted some of the things I believe and experience, I worry they could be used out of contexts to support viewpoints that have real-world deadly consequences for disabled people.  So I have hesitated to post about it except in certain selective contexts.  And I have let many important things go unsaid.

Because death is an important topic for everyone.  It’s the one thing that all people are guaranteed to experience.  And there are a lot of taboos about even discussing death.  So I want to discuss my relationship with death in detail.

But I also want to say up-front that I speak for nobody but myself and maybe any others who may feel the same as I do.  (It’s not uncommon, but goes largely unspoken.)  And that I never mean to imply that my experiences ought to be the same as another person’s experiences.  Your relationship with death is deeply personal.  Everyone has a different one.  That is not a bad thing.  Lots of people see death very differently than I do.  Lots of people experience their own mortality and that of others in a very different way than I do.  That diversity of experience is probably a good thing.  I in no way intend to say that everyone can or should view their own death or that of of others in the same way I do.

That said, I do have certain views about death that go beyond the personal.  For instance, my views on the way disabled people face ableist assumptions that kill us on a regular basis.  Those are not just my personal views about facing my own mortality.  Those are views that I do think are important on a wider scale than me and people like me, because those ableist ideas are out there killing people every single day.  They have almost killed me more than once.  And I draw a distinction between what’s essentially a political standpoint (my views on death and disability), which is intended to be taken broadly, and things that deal with my very personal, very subjective relationship to death and my own mortality.  Hopefully you can understand there’s a distinction here, even if the two have some overlap.

And it’s that tension between a very private and subjective personal experience, and a political view about ableism that is already killing people, that makes this such a difficult topic for me to discuss.  Because my relationship with death is extremely friendly in nature, my views of death are very positive.  But part of that deadly ableism out there is the idea that disabled people are better off “accepting” death, or just plain better off dead.  And I don’t want my personal acceptance of death to ever in a million years be used to justify the idea that disabled people should just accept our fates to die and not fight for our lives like anyone else would.  That’s not the kind of acceptance I talk about when I talk about my personal acceptance of death, and anyone using my personal acceptance of death to justify DNRs for all disabled or potentially disabled people or something is flagrantly misusing my words out of context to support things I would never support, and will be treated as such.  (And no, I will never have a DNR, that’s not what I mean when I say I accept death.)

But the real reasons I want to talk about death are more related to the unexpected personal experiences I have had along the way.  Far from feeling morbid, my relationship with death has long been extremely life-affirming.  And while it may sound like and dovetail well fo the most part with certain viewpoints out there that are becoming more popular or at least more openly spoken of, there are sometimes differences that are important.  And everyone’s various experiences of these things are important, and not things that should have to be hidden in the shadows to make a death-terrified society comfortable.  Nobody should have to talk about these things in public, but it should be something people can have a public discussion about.

Obviously the topic is also highly emotionally charged for just about everyone.  Most people have strong feelings about death whether they think about it regularly or not.  It’s something everyone encounters and has to grapple with, and everyone responds to in different ways based on everything from personality to culture to personal experiences in life.  Our own mortality shapes us, the loss of loved ones shapes us, and these things can make death an extremely difficult topic.  So does the fact that it’s in many cultures something you’re just not supposed to talk about.  And where there are often rigid views that people are expected to hold.  So I totally understand how emotional and difficult discussions of death can be for people in a huge variety of ways.

Also, my posts may get into specific religious and spiritual views, or things that sound like religious and spiritual views, that are personal to me.   All cultures and religions have extremely varied views on death, and many people are atheist, not religious, or have very specific personal views that don’t follow any particular religious view.  I respect all of those viewpoints and how they can differ both between and among themselves.  Please respect my own views, and that my holding and discussing those views does not mean I am trying to force anyone else to believe the same things I do.  These things are, again, very personal.

All of these things have made making even one of the posts I want to make, very difficult.  But I do want to make a series of posts dealing with death specifically.  And writing this, so you understand the context I’m doing it in, is the first step.  And the step that has kept me from writing any of the others.

I don’t know how fast I will write more posts, or how many I will write.  Whether I write one or dozens, be aware that each is only a small piece of a larger whole.  Some posts may even seem to contradict each other at first glance, especially if you’re unfamiliar with views similar to my own.  (People often expect one view to be clustered with a bunch of other views in a certain way, and my views on just about anything do not tend to follow those expectations very well.  It makes it hard to communicate sometimes.)  Like many people would be a little confused by I completely accept death and even welcome it as an important and beautiful part of life and I want to live as long as I possibly can even at costs other people would find unacceptable coming from the same person.  But those are viewpoints I hold and they don’t actually contradict each other.  And many people assume the only reason someone could possibly want “extraordinary measures” medically is an extreme fear of death — not true either.  So just… please try not to assume too much from a single post, or you’ll get confused.  If I could make one post that summed up everything, it would’ve happened already.

TL;DR:

  • I’m making a series of posts about death and mortality.  I don’t know how long it’s gonna be.  You can find it in my Death & Mortality Series category.
  • Some posts will deal with highly personal views.
  • Some posts will deal with more broad political and ethical views, especially around disability rights and deadly forms of ableism.  When it comes to these broader topics I am going to sometimes say when I think certain views and policies and systems actually harm and kill people.
  • Each of us deals with our own death and mortality differently for a huge number of reasons, and just because I deal with mine a certain way doesn’t mean I’m telling you that you have to deal with yours the same way.
  • I respect the many different cultural, religious, and spiritual perspectives that exist out there regarding death, please respect mine.  In stating mine I’m not trying to say yours are bad or that everyone should share mine.
  • Please understand each post is once piece of a complicated issue.
  • If this is too intense for you, feel free to skip it.
  • This is all extremely important to me.

 

Posted in history

We got the cutest little cameras hangin’ everywhere oh yeah…

We got the cutest little cameras hangin’ everywhere, oh yeah…
After awhile you just forget they’re there, oh yeah…
What a perfect place

-Planet P Project (Tony Carey), “This Perfect Place”

Or if you want the entire song, with the lyrics in large subtitles across the screen:

I grew up on that.  The album came out in 1984, and the song is clearly highly influenced by the novel 1984.  It’s actually part of a very long concept album, and in fact was my introduction to prog rock, concept albums, and Okie singers with recognizable Okie accents who weren’t singing country.  (Although when he was asked if he’d ever do a country album, he said “They’re all country songs really” or something like that.)  So I heard this song a lot.  I won’t get into the plot of the thing, it’s long and complicated and not the point here.

When I was growing up, the idea of cameras everywhere was something out of a dystopia.  If someone said it could happen people would probably think they were a conspiracy theorist or paranoid in some way.  It was certainly something to be afraid of if you thought about it.  Not something normal.  Not something people would accept.  Something that would creep people out to think about.

These days in a lot of countries there are cameras everywhere, used for far more than the security purposes they’re claimed to be used for, and people are just frigging desensitized or something.

I know people who are very concerned with the role of surveillance in modern societies, who dedicate a lot of their time and energy to it.  I’ve never done that.  I’ve never liked the situation, I’ve detested the situation, I’ve feared the situation, but I’ve never been able to devote much time or energy to understanding it or doing anything about it or thinking about it much of the time other than in passing or when it affects me or someone I know.

It doesn’t sit easy with me, but even I’m used to it by now.  I hate it, but I’m used to it.

How the hell did we get from there to here?  I remember a time when nobody would’ve been used to it.  I can’t even remember how or when they were phased in.  How quickly or how slowly.  What changed.  What made people accept this.

I used to live in an apartment complex full of cameras, supposedly for security purposes.  In reality they were rarely used for security.  They were used for everything from finding lost items in the halls, to making sure tenants didn’t use the bulletin boards without authorization.  (I ran afoul of that one by posting landlord-tenant law on them.  Nothing but a snippet of actual landlord-tenant law printed out.  At 3 in the morning.  They were gone in an hour.)  Which is a free speech violation but they never did care about violations of our rights, it was low-income housing and they pretty publicly didn’t think highly of their tenants.  And they were largely used as part of the War on Drugs — catching any drug deals that happened to take place in the halls and evicting people.  None of which had anything to do with actual security or safety, the claimed purpose.  I can’t ever remember an instance where they were used to protect anyone.  There could be one, I just never heard of one.  They certainly didn’t use them to catch the people yelling death threats at me and a roommate through our door, during the same time period they were using them to police their bulletin boards.  Or the guy running around threatening to murder people with a crossbow.  Long story.

Anyway, I just wonder how we got there from here, and why people are okay with it, and how and why it happened, and what happens when everyone who remembers what it was like before is dead.

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.