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.

IMG_7780.JPGIMG_7781.JPGIMG_7782.JPGIMG_7778.JPGIMG_7776.JPGIMG_7772.JPGIMG_7771.JPGIMG_7769.JPGIMG_7766.JPG

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.

IMG_7788.JPGIMG_7796.JPGIMG_7792.JPGIMG_7786.JPGIMG_7783.JPG

Posted in Things I try to hide

I hide what I don’t know when the blankness is huge.

A lot more of the time than I let anyone realize, most of the world is blank.  Most of what happened is blank.  Most of what is supposed to be background knowledge is blank.  Most of the past is blank. Lots of the present is blank.  Lots of things are blank.

And to let anyone know is terrifying.  Because I don’t want people to ever realize how much I sometimes don’t know at a given time.  I’m afraid of what would happen to me if people knew.

The world starts fresh over and over for me, fresh from a moment.  I start not knowing where I came from or what is happening and I wing it.  Over and over.  I am good at just acting in the moment and not letting on that I feel I just appeared in that moment.

Eventually, eventually it all filters down into awareness, memory, and I can write about it:   I just appeared where I am.  I don’t know how I got here.  I don’t know what led up to here.  Everywhere I look is blankness.  This is a common thing.

And I may not pass as not cognitively disabled but I sure as hell try to gloss over the extent.  And since people don’t expect such level of blankness it works in some circumstances.  I haven’t even managed to convey the half of it.  But I probably never will.  I’ve tried.  Hence this.

So what do I do?

Hold onto a familiar rock and hope that things beyond the rock will be familiar again one day and the world will expand again and not everything will be blank.

Photo on 6-18-18 at 6.24 PM.jpg

When I can remember the rock.

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.