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 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, death, family, joy

My cat has scattered my dad’s memorial shrine again.

There’s very little he’ll leave alone, if given the chance.

My father's memorial shrine, with the picture knocked off-kilter, only one rock out of dozens, and a few of his childhood belongings including a small denim treasure bag and a couple wooden toy swords. The slide rule is not visible, and the other slide rule is missing. Lots of things are missing or moved from where they should be.
My father’s memorial shrine, with the picture knocked off-kilter, only one rock out of dozens, and a few of his childhood belongings including a small denim treasure bag and a couple wooden toy swords. The slide rule is not visible, and the other slide rule is missing. Lots of things are missing or moved from where they should be.

But the more I think about it… I like having a memorial shrine, I will put it back together again, but the cat will knock it over again unless I buy some museum putty or something, which I’m not sure I’m willing to do.

And the more I think about it, the more fitting it is that my dad’s things are sometimes all over the house, reminding me of him in everyday life.

I sleep with his rocks in my bed.

I wear his clothing.

I find things he owned everywhere.

I use his tools.

I’ve said before that objects are my best form of communication.  With my father, this is true.  All of his things don’t just each remind me of him. Each one had a specific relation to him.

Taken together, they point back to who he was with the precision of a laser beam.

And they will do that whether they are properly arranged on the shrine or scattered everywhere by the cat.

And I love remembering my father.  I love finding him in my current life, in who I have become.  I love relating to him in an ongoing way even though he is dead.  Because who he was can’t be erased and his influence on the world still exists and will always exist.

I don’t idealize him the way some people do when someone dies, though.  I remember the worst parts about him.  But I don’t feel like I’d be remembering him if I did otherwise.  It would feel like an insult to his memory to turn him into an image of something he never was.

But I also don’t feel the horrible feelings most people expect with grief, for the most part.  I feel like he is still in my life, just not present.  His things remind me of who he was, and his influences and actions ensure he’s still around in everything I do.  I still have an ongoing relationship with him.  Most of the time I remember him with joy.

Bottom line is, I love my father.  And maybe sometimes overzealous kittens make you put things in perspective.  Remembering my father is not confined to one part of the house, it is integrated into my life.  Memorial shrines are a good thing, don’t get me wrong, but having them disrupted can make you think.

 

Posted in cats, death

Death can’t erase Nikki from the world.

Nikki in a kittyloaf position staring straight at the camera.
Nikki in a kittyloaf position staring straight at the camera.

Once you have existed, nothing can erase you from existence.

I’ve been thinking about Nikki.  Nikki is always in existence because she can’t be removed once she is there.  She may not be here, in this place, this time, where we can see her.

But she is here when she was kitty larva.

And she is here when she was a kitten exploring the world and forming her personality.

And she is here as she went into that gangly-legged elongated kitten phase.

And she is here as she became an adult cat, just barely.

And she is here as she matured into a real adult cat, and then matured further.

And she is here as she became middle–aged, for a cat.

And she is here as she got old.

And every single one of those things is part of her existence.

She is there sick and she is there healthy.

She is there in every mood she’s ever been in, everything she’s ever done.

It’s all indelibly marked onto the pieces of existence she was around for.

And somewhere in some other time those things always exist.

They can’t unexist.

And that’s besides all the people who cared about her, the people she cared about, the dog she fought with even over Skype, the trio of formerly-feral-kittens she grudgingly accepted and then loved and protected, the houses she protected, the Cat Things she got up to on her own that humans can’t possibly know about that had immense value to the world.

All of these things still exist because things don’t unexist just because time rolls on.

And now, she is buried just under the roots of a tree, and will physically go on to nourish all the things underground that will decompose her, and I think that’s beautiful.

And the less tangible aspects of who she was, that fiercely independent, stubborn, protective, dutiful on  her own terms, hard-to-sum-up personality she had, will go on in other ways just like she’s nourishing the plants and bacteria and fungus in the ground.  All those things get distilled into a particular expression of love that goes on to affect the world.  (This is not as separate from decomposition as it seems.  I’m working with the English language here.)

don’t just want to remember her when she was ‘in the prime of her life’ or something.  Everyone always wants to do that for some reason.  I want to remember her at every phase of her life.  I want to remember her when she was dying just as much as I want to remember her before that.  And I want to remember her during the long phase of chronic health problems that went on years before her death.  Like most people, she wasn’t always healthy, and pretending that part of her life didn’t happen doesn’t work for me.  She’s everything she ever was at every stage of her life, not just one piece of it.

I have my own ideas about what goes on (or not) after death, but they’re only ideas, and that’s all any of us can have.  I think people can forget how individual and powerful and not-to-be-fucked-with-sacred and important each person’s death is.  Death makes life possible, is impossible to separate from life, and is not the enemy.  But life matters.

And… most of what I’m talking about here, doesn’t require any particular set of beliefs about what happens after death.  Just that if you take time a certain way, the way we exist now is marked upon existence forever, both in right now and in the ripple effects we cause, which never go away.

So Nikki is gone, to us, right now, and that is cause for grief at the separation.

But all through her life, every moment of her life, is still there in the time Nikki was in when she was alive.  And everything and everyone she affected is still being affected.  And in those ways she can’t be un-existed just because she’s dead.

I’ve been meaning to write a series of posts about how I think about death.  Which is extremely complicated in some ways.  But this is how I feel when someone I know dies.  And this is how I feel about Nikki right now.

Posted in cats, death, poetry

R.I.P. Nikki

Nikki, a Siamese cat, looking watchful from a tree branch.
Nikki, a Siamese cat, looking watchful from a tree branch.

My best friend’s cat Nikki just died.  Nikki was an amazing cat, and very complicated and hard to sum up easily.  She was a lot like Fey in parts of her personality and body language, but Fey was a Gryffindor and Nikki was a Slytherin, for whatever reason.  She was, to my knowledge, 17, the same age as Fey when she died.

My favorite thing Anne ever wrote about her was Nikki the Guarding Cat.  There’s also Meet the Cats: Nikki.

She always lived her own way, and died her own way, fortunately peacefully while unconscious, despite it being bowel cancer.  She seemed to be in less and less pain towards the end, which is oddly how my father experienced his death from cancer.  (Not what you’d expect, but it happens.  He had no pain the last two weeks of his life, he said it just vanished and never came back.)

She was in many YouTube videos like these, with Brodie (who is Hufflepuff to the core):

He was the first of the younger cats (a trio of formerly feral littermates) to be able to approach her because his social skills are amazing and he gave her the respect she commanded.  (She always acted a little like royalty and expected to be treated as such.)

Brodie and Nikki touching foreheads with love and respect.
Brodie and Nikki touching foreheads with love and respect.

Brodie actually, while she was dying, mirrored her movements for 20 minutes one night, almost as if to show her that he’d be able to take over guard duty when she was gone and she didn’t have to worry about that.

All the other three cats (Coraline, Brodie, and Shadow) clustered around her and kept watch while she was dying.

Nikki on the couch she spent most of her time on while dying, with Brodie, Coraline, and Shadow all lying down nearby keeping an eye on her.
Nikki on the couch she spent most of her time on while dying, with Brodie, Coraline, and Shadow all lying down nearby keeping an eye on her and keeping her company.

Anyway, the only poem I can offer in tribute to her is by Longfellow, “The Light of Stars”:

The night is come, but not too soon;
  And sinking silently,
All silently, the little moon
  Drops down behind the sky.

There is no light in earth or heaven
  But the cold light of stars;
And the first watch of night is given
  To the red planet Mars.

Is it the tender star of love?
  The star of love and dreams?
O no! from that blue tent above,
  A hero’s armor gleams.

And earnest thoughts within me rise,
  When I behold afar,
Suspended in the evening skies,
  The shield of that red star.

O star of strength! I see thee stand
  And smile upon my pain;
Thou beckonest with thy mailèd hand,
  And I am strong again.

Within my breast there is no light
  But the cold light of stars;
I give the first watch of the night
  To the red planet Mars.

The star of the unconquered will,
  He rises in my breast,
Serene, and resolute, and still,
  And calm, and self-possessed.

And thou, too, whosoe’er thou art,
  That readest this brief psalm,
As one by one thy hopes depart,
  Be resolute and calm.

O fear not in a world like this,
  And thou shalt know erelong,
Know how sublime a thing it is
  To suffer and be strong.

 

Nikki, an elderly Siamese cat, on the couch.
Nikki on the couch.
Nikki standing on a fence watchfully, underneath her there is a red “BEWARE OF DOG” Sign that has been altered with yellow paper to read “BEWARE OF CAT“.

I would indeed beware of Nikki.  A cat who can never be summed up no matter what you do.  May she rest in peace.

Posted in Being human, death, Developmental disability, medical

Why I’d sometimes feel safer dying on a street corner than going to the hospital.

The IV pole in my hospital room during the stay described in this post. I spent days just staring at it making absolutely no sense of what I was seeing, but I must have snapped a picture of it at some point.
The IV pole in my hospital room during the stay described in this post. I spent days just staring at it making absolutely no sense of what I was seeing, but I must have snapped a picture of it at some point.

The thing is, on a street corner, at least someone would see what was happening to me.  

(TL;DR summary at end of post in bold.)

People have this idea of hospitals. You go to the hospital and you are safe. You are looked after. Someone is taking care of you. Someone is watching to make sure you’re OK. And if you’re not OK, someone will at least try to do something.

And that’s how it sometimes goes. That’s how it has sometimes gone for me. I am not going to say I have never had a good hospital experience. I am not going to say that there are not wonderful people going way above and beyond the call of duty, working in these hospitals. Often people working thankless jobs for long hours with little pay. And still dedicating a lot of their time to try and do their best by their patients. So don’t get me wrong, I am not saying that the image of what a hospital can be at its best never happens. But there’s a dark side and I have to talk about that.

See, sometimes there are patients who don’t matter. I have been a patient who doesn’t matter. And if you’re a patient who doesn’t matter, and you are in a ward where it is OK to abuse or neglect patient who don’t matter, and you are extremely sick, you will be lucky to get out alive.

I’m a patient who doesn’t matter for a lot of reasons.

I am on a feeding tube, which already means to many medical professionals that I am dead. I am maybe physically alive to them. But to many medical professionals, and I have heard this directly, once you have tubes or a trach or anything along those lines, people will see you as a corpse who happens to be still a little too lively. Or they see you as just a step away from death waiting to die.  Either way, not worth putting the time and energy into treating like a regular patient.

I also have a developmental disability which means I am not entirely human.

Most of the time I can’t speak, and that only adds to my inhumanity.

I am in so many ways an unperson.

There are other things that factor in, to larger and smaller degrees. There is everything from the way I interact socially, to the fact my gender can look ambiguous, to being fat. Lots of things add together big and small.

But they all add up to one thing: I am an unperson.

In the eyes of a lot of people, I am not a human being.  Iam somewhere midway between corpse and object and eyesore. Or even just a nuisance where my existence as a living being is an actual annoyance to some people. And they would just rather I stop annoying them.

I am not saying that all people see me that way. But it doesn’t take a lot. It just takes the wrong people in the wrong places. And I have been in the wrong place at the wrong time way too many times.

So that means I’ve had experiences like the following:

I have gone to the hospital for aspiration pneumonia. I am unable to eat and have been for a while. I try to tell them that and they ignore me. They tell me people get pneumonia without eating all the time.

I get very sick from the combination of antibiotics they’re giving me. I began vomiting uncontrollably.

I have a few things to make this extremely bad. One of which is a neuromuscular condition that makes you weaker the more you use a muscle. This is violent full body vomiting. And the more it happens the weaker I get.  I also have adrenal insufficiency, which means any illness will be worse, will drain your cortisol, and low cortisol causes its own life-threatening set of problems.  Including full-body muscle weakness.

I am on a cardiac ward,. This is called being overflow. Overflow means you’re a patient with one thing where you get put on a ward for another thing.  Because they don’t have beds on a ward with whatever specialty you’re supposed to be undder.

So I’m overflow on his cardiac ward. And cardiac wards are generally pretty quiet places.  The culture of this ward is they like it quiet.  At all costs, it turns out.

So their response to my vomiting is to shut the door and get my roommate out of there and ignore my call light.

But I am hitting the call light because I am getting weaker.  I am unable to clean myself.  I am shitting the bed.  I’m having trouble breathing and I am getting so weak I will soon be unable to move.

The first couple times, they’d answered my call light. But they stopped. And I thought the ward was just busy. Because one ward gets busy sometimes. You don’t get your goal and answered for a long time because there’s something else happening more important. And it was a cardiac ward, so I thought maybe someone having heart problems.

I know there was concern over what was happening to me. But it was not coming from the hospital workers. The nurses were ignoring me. The doctor said is his official position that he would not treat anything about pneumonia because pneumonia was all I’d come in for.  I didn’t know any of this until someone told me later.

See, my friend was not able to visit me. But she sent over one of her caregivers. That caregiver had been through cancer. She’d been in that hospital and had known many people who’d been in that hospital and had seen the worst of that hospital. And she came in and apparently what she saw was terrifying.

Every nurse on the ward was aware my call light was going off. Everyone knew why. I was vomiting very loudly. It was audible from the hall. My door was shut. No other lights were going off. Nobody was busy. Everyone was ignoring my existence in a very pointed way.

So the caregiver apparently started throwing my door open. And the nurses would come and shut it without saying a word. And she’d throw my door open again. And the nurses would come and shut it again. And this back-and-forth went on until the only part I remember happendd. Which is the caregiver shouting at the top of her lungs, “If you kill her, I will have every lawyer in Burlington down on this place!”

I didn’t realize this was about me. I just remember hearing it. I was at that point dealing with the combined effects of the pneumonia, the weakness from not having had a square meal in weeks already, the antibiotics and their side effects,  untreated congenital myasthenic syndrome, and untreated adrenal insufficiency.

So I could barely move. I remember thinking this out:   I was alone and I knew I was alone.  I needed to use whatever strength I had to get into a position where I was the most likely to survive. And that meant in that moment, climbing into a very odd position on the bed.

So the hospital bed was… like a hospital bed. The top of it was tilted upward. So I climbed onto that part. Just the top of the bed. And then I curled myself so that my legs were it one side of the bed, my torso was parallel to the top of the bed with my back facing the top of the bed, and my head was angled downward. So when I became unable to move, the vomit was most likely to pour out of my mouth not end up my lungs if I could help it.

This is not a position that anyone who is in a hospital within reach of help should ever have to be in. What I had to do, and the resources I had to muster, are far more typical of someone lost in the desert using the last of their strength to preserve their energy for rescue.

There’s a show called “I Shouldn’t Be Alive” where people talk about exactly these situations. The difference between the survival stories on that show and the survival stories I could tell, is not a difference in the physical and mental lengths you take to survive in situations where it shouldn’t quite be possible. The difference is their survival stories always have that happy ending that starts in the hospital. My survival stories always start in the hospital.

And while I am in the hospital I am enduring what these people endure in the desert, in the middle of the ocean, in remote wilderness places where there is no help. And yet this is the closest I can find my experiences anywhere on TV or anywhere else. That should say a whole lot about how people like me experience hospitals.

So they did as far as I know pretty much leave me to die or survive on my own steam. Doctors have said many times I should not have survived this. Doctors have said many times that I needed to be in the ICU. I’ve been told a lot of things. But I did survive it.

But it was a grueling, traumatic, dangerous, and totally unnecessary experience. That particular hospital stay is one of the worst experiences I’ve ever had with medical care.

It was not just being left for dead. It was this long, long period where I was alone in a way I have rarely been alone. The only time I saw another human being is when they came in to change my IV bags. And I was adrift and did not know what was happening. I didn’t even know if I was dead or alive.

I was very severely delirious. I was in more pain than I can ever remember being in. I was having a kind of seizure that meant that even in the absence of all these other thing it made time crawl, time just stretched out into eternity. So I pretty much felt like I had discovered the ninth circle of hell from Dante’s Inferno or something and it was located on that particular floor of  that particular hospital. When I even knew I was in the hospital.

After that experience with the curling up on the bed that was really the last lucid moment I remember. I remember wondering it one point whether when I died I was going to be aware I was dying. Because I knew that was happening. I know when Death is hanging around my hospital bed.  It’s something you learn to notice if you encounter enough. And Death was really my only companion for a lot of this experience.

So I got weirdly friendly with Death. But other than that it was like I was living in some kind of nightmare that never ended. The first thing I remember after curling up like that is the light being different, day being different I guess, and not even connecting with who I was, where I was. I thought there little dapples of sunlight all over the room. I thought I was the dapples of sunlight.  I thought that’s what I was, I didn’t know I was physically there. And I was all in pieces all scattered all over the room.

Pink insects ate my eyelashes. The clouds took on the form of ancient mythological creatures. These empty empty people showed up — gray black and white images of people that would appear in front of me and carry emptiness with them.  They vanished and carried even more emptiness when they did. There was a grid that went through the entire hospital of all the people who died there and were stuck on the grid. They invited me to join them. I didn’t know sometimes if I’d already died and joined them. A garden trellis appeared on the back wall one of the rooms.  Vines would go down in and out of it and back to it and down in and out of it and back to it all night long, covering me and uncovering me, endless time, endless pain.  All these things, disjointed, not coherent.

These things don’t sound like a lot. But they came with the most excruciating pain and the sense of time passing as slowly as possible. If you can imagine when you have really bad insomnia and you can’t sleep but you can’t really concentrate on anything either, so you’re just lying there with time seeming to go by like every second is a month. Like that only more.  And I was in that hospital for five weeks.

And not all of my experience that hospitalization was as bad as the start. In fact some of the neglect and abuse stopped due to other people advocating for me. But there was a long period of extreme neglect. And it was brutal.

And when I was able to think enough to make these thoughts, I was very aware of some things.

  • My life was in danger.
  • Nobody there cared that my life was in danger.
  • Because I was in the hospital people thought I was safe.
  • Nobody would know I was just in a room by myself without even a monitor.

Like usually they at least least have a pulse ox on you or something. They didn’t even have that.

And I was unable to do much for myself.  Being punished for that.  At one point they actually said that because I had a developmental disability, if I got used to shitting the bed I’d never want to use a toilet again.  I can’t fathom what world exists where shitting the bed is preferable to a toilet.  But that’s what they thought of me.

And I was being left alone for every single hour out of the day that did not involve changing an IV bag. And the people came to change the IV bags did not interact with me. Nor did they do anything check on my status.

So this was a terrible experience. But it was also an experience where I knew I was alone and I was in danger I rarely had means of getting word to anyone.

And I was in a place where people think you’re safe. So nobody would think that nobody was looking after me. Nobody would think that nobody cared that I hadn’t eaten. Nobody would think that nobody care that I got so weak I could barely breathe sometimes. Nobody would think this was happening or even that was possible for this to be happening.  And there’s so much more to this story than I can even tell in one blog post.  It’s actually much worse than I’ve described.

Which is exactly why I’ve said that there are times when I think I would be safer dying on the street corner then I would be safe in the hospital.

And I think that is true for many disabled people and many other people who are part of groups that are not considered fully human.

But people want so badly to believe that hospitals are a place of love and caring and safety.   People don’t want to hear this is a reality for the unperson patients, the unwanted patients, the annoying patients, the difficult patients, anyone who gets labeled such.  Which is often disabled people.

And yet if I talk to people who had to be in the hospital, especially people don’t matter to a lot of people with power, I hear stories like this one and worse all the time. And disabled people of all kinds have tons of stories like this and worse.

When Esmin Green (a black woman with a psych label and therefore didn’t matter to people on so many levels at once) dies in a hospital waiting room in full view of patients and staff and security guards for an hour and it’s all caught on camera, what the hell do people think is going on?  She, like all of us, was an entire human being and they ignored her humanity until she died in full view of lots of people who could’ve done something.

This happens.  This happens all the time.  It’s not just a matter of funding or something.  It’s a matter of certain people’s lives are not valued and certain places have cultures where that is okay.  There are cultures in some medical establishments where doctors and nurses abuse or neglect people they consider not really alive, not really people, or too annoying.  Sometimes this is as simple as choosing a blunter (more painful) needle to inject someone with.  Sometimes it’s as huge as leaving people to die or even doing things to hasten death.

This kind of shit happens all the time.  Listen to the stories told by those of us who’ve actually survived such ordeals.  Every single one of us is a real person.  Every single story we tell is important.  Even if it flies in the face of everything you want to believe about the safety of hospitals and the benevolence of the helping professions.  What you want to believe doesn’t change that people are being made to needlessly suffer and die for not being the right kind of person.

TL;DR:  Some people — often disabled people, poor people, people of color, and other people who can easily become people who don’t matter — experience severe medical discrimination in hospitals.  To the point that we may be simply left to die, or given the minimum possible medical care.  We may experience severe abuse and neglect in what is meant to be a place of safety.  Some of us survive it.  Some of us die.  Some of us feel that we’d at times be safer dying on a street corner than dying in a hospital.  Because in a hospital, we’re hidden in a room where nobody can see what’s happening to us except the people neglecting us.  At least if we died on a street corner, someone might see what happened.  Maybe.

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.