Posted in Developmental disability, Developmental disability service system, disability rights, HCBS, medical, Self-advocacy

Best hashtag ever: #GetYourBellyOut

#GetYourBellyOut is the best hashtag ever,

I’d better backtrack.

I had an ISA meeting.  That’s Individual Support Agreement.  At the last second, they brought a Surprise Administrator.  That is what I am calling the lady who showed up at the door to the meeting even though I’d been told that the only people present would be Laura (my DPA and soon to be adoptive mother) and my two case managers.  Surprise Administrator (SA for short) was someone who works in the Howard Center administration.  Surprise because they didn’t tell me she’d be at my ISA meeting until she was at m

The ISA is Vermont’s version of a person-centered plan.  It, of course, just like in other states, does not have to be either a plan or person-centered to qualify as a person-centered plan.  The meeting was certainly not very person-centered.  It degenerated into a shouting match mostly.  And a lot of it was the Surprise Administrator telling me that I was off-topic.  At my own ISA meeting.  When attempting to explain my ISA goals.  Which were “off-topic” because they didn’t like

So it was good that there was a moment of comic relief in all that because otherwise it was just a shitshow that went nowhere productive.

This moment of comic relief came at an unexpected time.

I had defined my first goal as survival.

I meant it.

I actually had specific, concrete actions I wanted taken in order to get to that goal, but the Surprise Administrator was busy telling us that this was impossible.

So at some point an exchange very close to the following took place between Laura and the Surprise Administrator:

Surprise Administrator: Survival isn’t a goal.
Laura: Yeah it is!
Surprise Administrator: It’s a vague goal.
Laura: What’s vague about it? If her heart keeps beating…
Surprise Administrator: Yeah but some people define survival differently than others, like some people define it as being hooked to all kinds of tubes and vents and stuff.
Me: (silently but firmly pull shirt up to show two feeding tubes and an ostomy bag)

After the amount of sheer bullshit that went on in that meeting, I can’t even try to make myself feel bad about the amount of giddy, giggly, juvenile pleasure I got out of that incident.  Especially given how sleep-deprived I was at the time.

So later on I discovered the best Twitter hashtag ever: #GetYourBellyOut.

It’s the complete opposite of the Surprise Administrator’s hashtag, which I imagine would be #PutYourShirtOnMel.

The idea is people with ostomy bags are supposed to pull up our shirts, take selfies, and post the pics on Twitter under the hashtag #GetYourBellyOut.

It was started by a guy with a colostomy.  The point is to reduce shame and stigma around colostomies, ostomy bags, stomas in general, etc.  It’s mostly about colostomies but can apply to anyone with similar things.  My ostomy bag goes over a healing jejunostomy stoma after the tube was removed, and I’ll continue to need an ostomy bag to catch the bile until it heals.  Which could be months.

So this is the picture I posted to #GetYourBellyOut:                                               


Which is basically, in the above picture, roughly the same sight the “PUT YOUR SHIRT BACK ON” comment was inspired by.

I’m just… highly amused there’s a hashtag for exactly what I did spontaneously out of frustration.

Anyway here’s a Get Your Belly Out website for Crohn’s and Ulcerative Colitis.  I don’t have either of those things, but I love their website picture, which is a bunch of bare bellies with stomas and ostomy bags! 


I’m a huge fan of anything that makes people realize that bags, tubes, holes in weird places on the human body, and the like are a normal part of life for a lot of people. And not a cause for excessive bellyaching (oh come on, I had to say it) about having to see it…

Posted in medical, Speech

A (sorta) funny emergency speech story…

This post is part of a series of posts on the topic of speech.  Please read the first post in the series, New Blog Topic: Speech, to give you some idea of the backstory here.  99% of the time I’m completely unable to use speech as a primary mode of communication, and that is still true.  But this speech blog topic is about both my baseline level of speech these days, and an emergency speech mode that sometimes makes me fluent without any conscious control over the process. 

…well it’s funny when viewed from a certain perspective, and in hindsight mostly.  And it illustrates a serious problem of inconvenience with emergency speech.  It also happens to be the shortest period of emergency speech I’ve ever had1.

So one day I decided to go to the farmer’s market. Someone would drive me there and I’d walk home. I didn’t take a lot of mobility or communication equipment I really could’ve used.  I wasn’t expecting to need it.  Mistake.

A bunch of booths at the Burlington Farmer's Market in City Hall Park, Burlington, Vermont.
The Burlington, Vermont farmer’s market. I don’t know exactly what I was expecting. In California, farmer’s markets as I knew them were roadside stands where fresh produce was sold cheaply and mostly poor people (including the farmworkers) shopped there because it was cheaper than the grocery store. That is… so far from what a farmer’s market is around here that I found myself quite surprised by it all. I did find some amusement though — there were Anaheim sweet peppers with no spiciness to them at all, not even a tingle, labeled with a spiciness warning. And even the best hot sauce I could find wasn’t that hot. It made me realize how Californian my food tastes are.

Anyway, I tried to walk around a very long line at one of the booths, and hit a slippery patch of mud. I took one of the most spectacular falls I’ve ever taken.

I don’t know if you’ve ever seen someoone W-sit. I’m hypermobile and such a posture comes naturally to me. (It’s considered horrible for you but if your joints are loose it’s a very stabilizing sort of posture.) Normally, W-sitting looks kinda like this:


So just imagine that I’m lying flat on my back and my legs are kind of in that W-position except somehow they’re folded so they’re underneath my back, and you’ll get the general idea.  I’m at that point in excruciating pain.

So I yell — with total clarity and fluency and no trouble at all making myself understood, nor any pre-planning to what I was going to say — “WILL SOMEONE PLEASE HELP GET MY LEGS OUT FROM UNDER ME!?

And someone runs over and does it.

The sharpest of the pain vanishes instantly.

And then I can’t talk anymore.

And at that point there’s paramedics, and a lot of information I have to give them, and talking would be really convenient at that point.  But nope.  No fluent speech available.  Barely any non-fluent speech available.  And I’ve got several broken ribs and two sprained ankles.  (They concentrated so much on the ankles that none of us even noticed the ribs until later after I’d got home.  Fortunately(?) because I have osteoporosis, I’m used to broken ribs and knew what to do.)

It ended up okay, but this is a good example of the way that emergency speech is largely outside my control.  And how it doesn’t always have a lot of rhyme or reason in terms of convenience — it would’ve been nice if it stuck around for the paramedics, but it didn’t.  My brain has a mind of its own when it comes to the occasions it decides fluency is gonna happen.

I don’t remember exactly when this happened, other than that it was the same summer I was in the ICU, after my ICU-acquired emergency speech2 had gone away.  I also remember that they actualy discovered the many healed broken ribs, along with a stable stress fracture to my T12 vertebra, the December after this.  They’d been doing a lung x-ray and my lungs were fine but other things were clearly not.  So this would’ve been the summer of 2016, I just figured out by checking some records.

But… yeah.  Apparently my brain decides when fluency is medically necessary, and it doesn’t always agree with me on the matter…

1 Understand I haven’t had this happen that many times. But the amount of time I’ve had it stay on more or less consistently has ranged from seconds to a few months. Right now I’m in a very weird period where it’s trying to stay on longer than it ought to due to a huge amount of medical crap happening, and the speech trying to turn on even past the point it can sustain itself… it’s causing all kinds of mayhem in the process. And by mayhem I mean actually dangerous to me.

2 This speech had been longer-lived than just a sentence, and lasted my entire ICU stay and then a little after I got out of the hospital. It began sometime in between when I had a long series of seizures, and when I stopped breathing. The existence of speech was actually one of the factors that caused people to call 911.

Posted in joy, medical

Meet Linden, my pet feeding tube ^_^

So um.  Sie doesn’t have a name (well sie does by the end of this post, I decided to name hir), and I’m not sure sie’s gonna have a name.  I haven’t named tubes since Enid — long story.

But I swear with the way they move, these little MIC-KEY buttons can look like they’re alive.

So meet my tube. Sie’s a 14 French MIC-KEY button jejunostomy tube, 3.5 cm stoma length.  I think sie wants to say hi here:

I think sie’s adorable.

And yes, sie moves.  Mostly peristalsis, the natural movement of the intestines, but it makes it look like sie has a little head that peeks around.  Most of the time when sie’s in hir dressing sie moves a little less, which is good (you don’t want a J-tube spinning, sie has a long tail inside of me).

Sie’s modular.  Which means that the part you can see is just the part that attachments can clip onto.  There are different extension kits for different types of syringes and feeding attachments and situations, and all of them are pretty cheaply replaced.  Which means if one of your extension kits breaks, you don’t have to replace the entire tube inside you.  You just replace the external extension.  Usually when I’ve had MIC-KEY button J-tubes they have needed internal replacing only every 6 months or less, and in my case we were usually just being cautious and could’ve gone longer.  For some people they last years.

Because there’s not a big giant dangling thing coming out of you, low-profile tubes like MIC-KEY buttons are a lot safer.  They don’t catch on things and yank out very often.  They don’t need to be taped down to prevent movement.  And the ones that do need to be taped down, taping doesn’t really prevent all movement, so they move more and that can put wear and tear on your stoma.  They’re also really good for young children because children are less likely to see a giant dangling thing and play with it and yank it out by accident.

Here are some of my tube’s extensions:

An ENfit syringe putting coffee into a MIC-KEY button J-tube.
An ENfit syringe putting coffee into a MIC-KEY button J-tube.

This one goes to an ENfit connector.  ENfit connectors were designed for everything from tube feeding attachments to syringes, to make it so that it’s impossible to confuse a feeding tube with an IV, a mistake that can be fatal.  So I like the idea of ENfit, although it was messed up pretty badly when they tried to make it universal for all existing feeding tubes and it wasn’t, and neither was their alternate solution.

A dual ENfit extension on a MIC-KEY button J-tube, with a tube feed attached through a purple connector.
A dual ENfit extension on a MIC-KEY button J-tube, with a tube feed attached through a purple connector to one side of the connector.

A dual ENfit extension on a MIC-KEY button J-tube, with a tube feed attached through a purple connector, and a feeding/medication syringe attached to the other side.
A dual ENfit extension on a MIC-KEY button J-tube, with a tube feed attached through a purple connector, and a feeding/medication syringe attached to the other side.

This one goes to an ENfit connector but allows two connections.  This means you could have one part connected to your feeding pump, and at the exact same time be putting meds in the other part with a syringe, without having to unplug anything.

The cath tip syringe attachment for the MIC-KEY button J-tube.
The cath tip syringe attachment for the MIC-KEY button J-tube.

This one allows a normal 60 mL cath-tip syringe to put things into your tube.

Photo on 8-19-18 at 10.03 PM
A two-port tube extension, one for a cath tip one for smaller medicaion syringes, for a MIC-KEY button J-tube. There’s a 20 mL medication syringe attached to the smaller port, with hydrocortisone in it.

This one allows two sizes of syringe — cath-tip and a smaller kind that are often used for medications.

And there are others in various shapes and sizes, those are just the four I use the most often.

Here is a video showing how easy it is to put in the extensions.

My old tube was not modular.  It was a 12-French MIC* J-tube, and it is one of my least favorite tubes.  But it is the only one they will implant surgically, then you have to wait six weeks minimum before you can switch to the tube you want.

A picture of my old feeding tube (the one that finally got swapped out to a decent tube on my birthday), which was not low-profile or modular or just about anything else useful other than just being a J-tube. My skin looks horrible in this photor for reasons, it's nowhere near that bad now.
A picture of my old feeding tube (the one that finally got swapped out to a decent tube on my birthday), which was not low-profile or modular or just about anything else useful other than just being a J-tube. My skin looks horrible in this photor for reasons, it’s nowhere near that bad now.

As you can see in the photo above, the tube is all one piece.  If one part breaks or wears out or stretches beyond usability or gets clogged, you have to replace the entire thing. It’s also a constant safety hazard because no matter how well you tape it down (and taping it down creates its own safety hazards that are different) it’s gonna still be able to move and get caugh on things.

So my new tube… maybe I should give hir a name, I’m just not sure what name to give hir.  I guess I’ll call hir Linden for now, and see where it goes.  I’m just tired of not having a name.  So Linden, Lindy for short.

So here are the official photos of the old MIC tube i had, and the new MIC-KEY tube.  It’s night and day, even though they serve the same function.  The following is a Halyard 12 French MIC* Jejunal feeding tube.  And really sucks as feeding tubes go.

This is the tube that gets surgically implanted by default. It's not a very good tube, it's flimsy, it's not modular, and I was infinitely grateful to be able to get it replaced on my birthday this year. I've had long experience with this kind of tube and most of it bad. It's a Halyard MIC J-tube, 12 French. Most of what's in the picture goes inside you so you don't see it, you just see the floppy part hanging out the top.
This is the tube that gets surgically implanted by default. It’s not a very good tube, it’s flimsy, it’s not modular, and I was infinitely grateful to be able to get it replaced on my birthday this year. I’ve had long experience with this kind of tube and most of it bad. It’s a Halyard MIC J-tube, 12 French. Most of what’s in the picture goes inside you so you don’t see it, you just see the floppy part hanging out the top.

The following, on the other hand, is the kind of tube Linden is, called a low-profile feeding tube or a MIC-KEY button.  This kind of tube is modular and generally wonderful.  Again, the long tail you see is mostly inside of me.  The tail is part of what makes J-tubes (intestinal feeding tubes) different from G-tubes (stomach feeding tubes).

Screen Shot 2018-08-28 at 10.30.20 PM
A Halyard MIC-KEY button jejunal tube shown as the tube part on the right (most of that tail is inside of you so you only see the part above the balloon generally) and then some tube extensions (which help you put things into the tube) and otherequipment on the left. A MIC-KEY button is modular, so the part that is in your body is an entirely separate piece from the part you use to put things into your body. The internal part takes a procedure to replace (you could do it at home but it’s not recommended), but it rarely needs replacing. When the external parts wear out, you can replace them quickly and cheaply without requiring any procedures or even contact with medical people. The lack of dangling parts contributes to how long-lived these tubes tend to be.

So meet Linden again:

A MIC-KEY button J-tube on a large somewhat scarred-up belly with ostomy bag behind it.
Say hi to Linden again!

Linden with hir makeshift paper towel dressing.
Linden with hir makeshift paper towel dressing.

And I hope you find hir as cute as I do, even though a lot of people would find it weird to call a feeding tube cute.  I kind of wish I could give hir decorations, but there’s no way that would either be safe or stay put, so no point.  But I can name hir Linden and show people the way sie moves.  ^_^




Posted in Being human, joy, medical, music

Who am I when I can’t do…?

Mel wearing headphones with shadows falling over parts of hir face.
Mel wearing headphones with shadows falling over parts of hir face.

I hate being reduced to a pile of medical problems.

I don’t care what guise it comes under, either. I’m not your intriguing case. I’m not a two-dimensional prop in your medical detective story. Or your medical melodrama about brave people who buck the system and discover the truth. Or your very private psychodramas you want to act out with me as little more then a living doll.  And that includes “positive” versions of originally medical ideas — if you reduce me to any diagnosis, no matter how positive you think you’ve changed it into, you’re still reducing me down to something I’m not comfortable being reduced down to. It’s why I’m not comfortable with communities that’ve basically grown out of a single medical label, no matter how they believe they’ve transformed it.  At any rate, if you want to reduce me to medical crap, whether you think it’s good or bad — I’m not fucking interested. If you reduce me or my life to medical issues you’ll rapidly find yourself being ignored or tolerated at best.

But sometimes it seems like things close in, and all there is time and energy to think about is the next medical thing. And I start wondering, is this all there is to me? Is my life just one medical crisis to the next and holding myself together with strings and baling wire in the meantime? You don’t want to know the sanitary conditions I’m living in right now, the compromises I’ve been forced to make for survival. If you’re physically disabled you probably have some idea either from your own life or that of your friends. The shit we do to survive and live free at the same time. It’s criminal that we’re forced to live this way. I have an elderly family member I probably inherited my congenital myasthenia from, they describe crawling around the house when they can’t walk, and can’t get up off the floor, and you don’t want to know how they drive a car sometimes. They’ve coded before, I worry about it happening far from help next time.

Anyway, eventually the world closes in and all you can think about is medical shit. Explaining it to people over and over again. Doing medical shit you need to do to survive. And it feels like there’s nothing left, nothing left to you, everything’s gone.

It’s scary.

And it doesn’t help when that’s essentially how lots of people see you. As just a pile of flesh with a lot of medical problems. You start to go crazy. You start to wonder if there ever was anything more to who you are. Medical shit can fuck with your head in huge ways.

The medical way of seeing us is incomplete. It doesn’t include the things that make us people. Those core things that really matter. So if this shit gets into your head, you can’t see those things about yourself either.

The important parts of the world never go away. They are literally everywhere, embedded in everything. Including us. When we can’t feel them or perceive them, it’s always because something is blocking our view. Not because they’ve gone anywhere.

It’s easy to get caught up in the bullshit we are fed, too. Like that we aren’t real people, not the kind that matter, unless we can make a contribution that fits in with capitalism. Like something that pays money. And people with lots of medical shit that takes over our lives to this extent are seldom fully employed. So that can eat at us too, that knowledge that whatever we contribute to the world will never be good enough to count.

But we do contribute valuable things to the world. Just existing is its own contribution, but people contribute more than our existence. Each one of us is uniquely positioned to make very specific contributions to society, whether we are trying to or not, whether we are aware of it or not. Real contributions often go unnoticed even by the people making them.

And we get so caught up on what we do, that things get unpleasant when all we can do is whatever it takes medically to ensure our continued survival. Who am I when this is all I can do?

At first I fall back on connections to place, people, family, culture. I am a child of Redwood Terrace. I am an Okie and a Minnesota Swede. I am a Californian. The landscape of California, from the cliffs and ocean of the Monterey Bay to the bare yellow grass hills with oak trees, to the redwoods of San Mateo County and Santa Cruz County to the converted swamp / desert / farmland of the San Joaquin Valley to the paved-over orchards of Silicon Valley, these things are burned into my DNA almost, they go in so deep. The graves of my recent ancestors, in Shafter and Wasco cemeteries, places likely to become uninhabitable soon. My father’s grave in the Siskiyous. All the objects my father gave me that point like a giant beacon to who he was, who he is now that he’s merged with love and become something different.

These things are important. Connections are important. And no matter how difficult and dysfunctional our families get, family is always a part of you, a connection you can’t sever, part of who you are. I try to remember my grandfather’s violin, to remind me family is family and the worst things about it can still yield surprising moments of love and beauty.

I’m still the bleakest optimist I know. I can look into a pile of shit and find something worthwhile, but I still don’t shy away from it being a pile of shit. This confuses people. I continue to believe this skill will become vital to the survival of lots of people in the world today, though. Discounting the good or pretending the bad isn’t there will lead to disaster.

Anyway, family, culture, place, they all provide a firmer foundation than what you can do at any given moment. No matter how messed up that family, culture, or place is. But there’s something far more basic and far more important:

You are a small piece of the world. A very particular small piece of the world. You have a place, that’s specific to you and who you are. Everything from your best qualities to your worst faults are part of this. You are connected to everything and everyone else. Who you are and what you do, matters. You are always, always connected to the deepest parts of reality. They are a part of you, you are a part of them. You may not be able to feel that at any given time, but all that means is something’s obscuring your view. This is always there.

You are always so fucking much more than a set of categories, shitty circumstances, or ideas. And more than a set of medical problems or any other kind of problems. You are exactly no more and no less than a tiny expression of the deepest and most beautiful parts of the world.

And if we have anything we are meant to do, it’s to express that the most clearly with the least bullshit obscuring it as we can, which may be the most difficult thing in the world to do, but also the most important. But that’s not something we can or should be constantly freaking out about. Just something to keep in mind.

And sometimes the hardest times bring out the most depth of beauty in the world in weird and unexpected ways. Other times they’re just hard. But the world is a strange place. And you do have an exact and important place within it that nobody else can fill, no matter what anyone tells you, even yourself.This little piece of the world is who you are no matter what you can or can’t do. And this little piece of the world may be little but it’s also important.

I was writing this post, it’s taken me days. And I came across the perfect song to express part of what I’m talking about. I’m a huge Grace Vanderwaal fan for reasons. And she wrote this song that’s about those amazing parts of the world we can just forget are there entirely. And — those amazing parts of the world — we are a part of them, they are a part of us, and that’s who we really are, who we remain, regardless of what we can or can’t do at any given time.

So here’s the music video then the lyrics:

Sit right here, chillin’, level low
Close your eyes and just let it flow
Right next to me I hear your heart beat, beat
When the dial turns up and the music starts playing
We don’t realize in this society
Doesn’t matter how your hair looks or what they are thinking
Just, just what we are finding

Tap your foot and listen in
Ignore the world, let the music cave in
Close your phone and breathe in the air
You’ll soon realize that there’s something that is
So much more than this
It is what it is
So much more than this
Oh, oh, oh, oh, oh, oh (hey)
So much more than this
It is what it is
So much more than this
Oh, oh, oh, oh, oh, oh

The whole crowd seems to like me now
‘Cause they think I’m cool but back when I was in school
They found it very easy to hate me
Funny how always these times are changing
Back then it was so easy to shatter
But now in the end it doesn’t really matter

Tap your foot and listen in
Ignore the world, let the music cave in
Close your phone and breathe in the air
You’ll soon realize that there’s something that is
So much more than this
It is what it is
So much more than this
Oh, oh, oh, oh, oh, oh (hey)
So much more than this
It is what it is
So much more than this
Oh, oh, oh, oh, oh, oh

All of the talk, and the talk from ya
Won’t even matter when the lights come up
All of the talk, and the talk from ya, hey
Open your eyes and just wake up
Do all the things that will matter to ya
Open your eyes and just wake up, woah

Tap your foot and listen in
Ignore the world, let the music cave in
Close your phone and breathe in the air
You’ll soon realize that there’s something that is
So much more than this
It is what it is
So much more than this

You’ll soon realize that there’s something that is
So much more than this
It is what it is
So much more than this
Oh, oh, oh, oh, oh, oh
So much more than this
It is what it is
So much more than this
Oh, oh, oh, oh, oh, oh

Wow, that kid has more kitten wisdom packed into her than you normally see in a child.  She reminds me so much of Igor, right down to the ability to unfailingly be exactly who she is, even when she doesn’t appear to know.  (Kitten wisdom is what I call the kind of wisdom that often comes with youth rather than the kind that sometimes grows with age.  And Igor and Grace Vanderwaal have a ton of it.  And remind me of each other in ways I can’t articulate.  Also some of her dancing in that video is perfect.)  And I love that she writes songs about being a child her age rather than just singing artificially weird children’s songs written by adults, or just adult songs.  It’s weird, though, that this should be unusual enough to comment on.

Mel wearing headphones.
Mel wearing headphones again.

Anyway, that place that’s so much more than this is always right here.  And we are always so much more than this, so much more than we’re told we are, so much more than a role or a category or a collection of frigging problems and labels and crap.  Because we’re not separated from that place, ever, we just sometimes feel like we are.  But it’s always there, and we’re always part of it.  The stuff that makes us think we’re not, is all confusion and illusion of various sorts.

redwood terrace fungus 01
A tree with moss and fungus in Redwood Terrace photographed by my best friend.

Posted in 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 medical, Problems and solutions

I definitely stand with the local nurses union.

Mel wearing a button put out by the nurse's union at UVM Medical Center. It reads, "Put Patients First!" and in small print, "Vermont Federation of Nurses & Other Health Professionals AFT-VT".
Mel wearing a button put out by the nurse’s union at UVM Medical Center. It reads, “Put Patients First!” and in small print, Vermont Federation of Nurses & Other Health Professionals AFT-VT.

I was in the hospital for a month recently.  I was able to see the conditions that nurses were working under.  It was bad.  I am 100% behind their efforts to fight for their rights, which were gearing up even while I was hospitalized:  Nurses were carrying signs through the halls, going places with them, wearing buttons, talking about things.  This has been prolonged and their signs are now all over town.

Earlier this month, Seven Days VT published an article called Nurses, UVM Medical Center Remain At Odds Over Contract which said:

Amidst a tense contract bargaining negotiation, nurses at the University of Vermont Medical Center announced at a press conference Friday morning that they had filed a complaint against the hospital with the National Labor Relations Board. The nurses allege twenty labor violations, including unlawful unilateral changes to staffing grids and unlawful ordering of employees to remove union buttons.


Julie MacMillan, a registered nurse and the union’s lead negotiator, said the nurses feel the community should be aware of the problems at the hospital. She said in past negotiation cycles, when the hospital was not in as good financial standing, nurses took cost of living adjustments so that they could keep serving the community. But now, as the hospital reaps enormous contract margins, she said the nurses have had enough. MacMillan said the union has been inspired by the successes of other labor movements across the country.

I hope they meet all of their goals.  The conditions they’re expected to work under are ridiculous.  They are right:  This is a safety issue, both for nurses and for patients.  I constantly saw nurses having to fight just to do their jobs under the amount of work they were expected to do.  All the ones I saw were trying very hard to help all their patients, and couldn’t.  One said she spends half her time on the job not doing nursing care, but ironing out problems caused by the hospital bureaucracy.  Watching her, I believe it.

And the conditions really are dangerous to patients — I was frequently in danger not because of malice or indifference, but because they were having to spread themselves too thin.  Which results in things like not noticing I take seizure medications.  Or one situation where I could no longer perform a small but vitally important medical task I normally do for myself, a nurse offered to do it for me, and I had to explain to her that I greatly appreciated the offer but that there was no way she had the time or resources necessary to do it.  Most of the dangers I faced from the hospital this time were tied in some way to short staffing, not to anything malicious on the part of the staff.  Who went out of their way to help as many patients as they could as thoroughly as they could, but nobody’s superhuman, and the long hours and lack of sufficient staffing take a serious toll.  Nonetheless, people were being their own small, quiet versions of Vasili Arkhopov every day — following their consciences even when it might be easier not to, and profoundly affecting, even saving, lives as a result.

Which is why there are signs everywhere that read NURSES FOR SAFE STAFFING and the like.

Nurses carrying signs, one reads “Safe staffing saves lives!”

Safe, if you’re wondering, means patients don’t risk death or serious harm from the lack of adequate staffing.  The nurses I met this stay were almost all amazing, dedicated, and trying their hardest.  But without enough of them, without the resources to do their jobs, that’s just not enough.

I really, really hope their negotiations succeed.

Posted in Being human, Californication, culture, family, history, medical

Every part of your life makes your perspective vital to the world.

We all come to the world from a particular place. Each of us it’s a little different. Sometimes a lot different. Some of it is culture. Some of it is background and life experiences. Some of it is our families. Some of it is the way our body works. Some of it is location. There are so many things that influence our perspective on the world.

But we all have one particular perspective. And that perspective is important. Without many perspectives on the world, the world would be in a lot of trouble. We need people from different backgrounds, different thought patterns, lots of different things.

But every part of your perspective, everything that makes it up, is important. And that includes the things that seem to contradict each other. And all the things you’re ashamed of. Or afraid of. Or all the little details that seem to make things a little more complicated. Those things are all important to who you are, where you come from in the world, and what makes your perspective important.

I’ve talked before about being an Okie. I may have even talked about how ashamed I was and afraid I was for a long time of recognizing I was an Okie. There were a lot of reasons for this. But I could not understand myself, or my culture, or the things that made me different from my neighbors where I grew up.  Not without understanding both that I was an Okie and what an Okie is. And the history behind Okies in California.

Mel wearing an orange t-shirt that says "California Okie" with a picture of a redwood tree and a map of Oklahoma.
Mel wearing an orange t-shirt that says “California Okie” with a picture of a redwood tree and a map of Oklahoma.

But it goes beyond just being an Okie. There are tons of specifics to it. There is how long most of my family was in Oklahoma and the surrounding area before coming to California. There is why each specific part of my family came to California. There is when they came to California. There is what opportunities were open to them and not open to them compared to other Okies. There is what states they came from both originally and before they came to California. There is who stayed behind, who came to California, and who went back. And why. There is the specific ethnicities of different parts of my family.

There is also the fact that we left that San Joaquin Valley and ended up in Silicon Valley. There is the fact that my father was a very specific kind of person who existed in Silicon Valley, even though their presence was rarely acknowledged. Which is he was an Okie techie. There were Okies who left what were usually farm jobs and made it into some part of the Silicon Valley tech industry.

In my father’s case, that meant he was an electronics technician. He, like many Okie techies, came from a small farming or farm working background. He grew up tinkering with electronics in the attic of his farm. His high school in Kern County had an excellent program. Every year, they built a house. The carpentry class would build it. And the electronics class, which my father was in, would wire it. And so on. They would sell it as cheap as they could to a family who needed a home, and use the money for next year’s house. My father got practical experience with electronics while still in high school.

He went to a two-year college and got a degree that allowed him to be an electronics technician. But like many Okie techies, most of what he learned in the world came from practical experience of some kind.  His on-the-job experience gave him enough knowledge that he could do the work of an engineer without the schooling.  He even trained engineering grad students.

This all meant that I was born in San Mateo County in the redwoods. Because this was very close to the physics research facility where my dad had a job when I was born. And it meant when we left the redwoods I grew up in Silicon Valley, mostly San Jose. I have also lived in the San Joaquin Valley, Santa Cruz County, Santa Barbara County, and other places. But that’s the basic area I was in.

And that means that while my culture was Okie, this was not the culture I was surrounded by. And I was exposed to a lot of things that most Okies would not believe in. Like all the stuff I call California dreaming. A large, destructive part of California’s culture where a lot of people try to live in a dream world. It’s most famous I guess as a Hollywood thing. Because it’s easy to see that Hollywood is based on a lot of people’s dreams about the world. But it’s around a lot of mainstream Californian culture. There’s a whole branch of the Silicon Valley tech industry where people  live with their head in the clouds and don’t seem to have any idea that there is a basic physical world they have to live in. There are also the new agers who think you can wish physical reality into existence using only your mind.

And so I was exposed to all these ideas, even though within my family they got very short shrift. Because like anyone who’s done farm work pretty much knows that you depend on the physical world and you cannot wish it away. And any Okie with any sense remembers the dustbowl and how you could not wish or dream that mess away, and how people created that mess by ignoring the realities of their physical environment. So my cultural influences push me very far away from the sort of thinking that gives us dream worlds, and thinking the Singularity will save us or kill us or whatever, and things like The Secret and the Law Of Attraction. Which are a lot more connected within Californian culture than you would expect.

But exposure to those ideas while young led me to try them out. And I tried them out in a pretty spectacular way. And I never could shake a pretty iron sense of the real physical world, even though I did my best to pretend. And part of that is my cultural background kicking in. But I heard if you pretend something it’ll happen, so I tried my best to pretend reality didn’t exist. But I couldn’t pretend to myself at all. So these were these two influences fighting in my head. What I heard around me and what I kinda knew in my bones.

My exposure to those conflicting cultural values shapes my understanding of the world. If I had only been exposed to one or the other, or if I had come from a different direction, my perspective would be extremely different. And I do think my perspective on this gives me insight into things that are important.

There’s also the specifics of my family, like my personal specific family history. Three of my grandparents were Okies, the other was the daughter of Swedish immigrants. My mom’s family tended to be FDR Democrats, my father’s family were Republicans. Both of my parents had political and religious disagreements with their parents. There were frictions in the family over politics and religion. There is the combination of political liberalism or leftism and a sort of cultural conservatism or traditionalism that’s pretty hard to nail down in words, but that definitely exists in my family and in me. There’s a lot more diversity among Okies in this regard than you will ever hear. And these things factor into everything as well.

But all that, all those influences, all those oddly specific things about my personal, family, and cultural background. Those all and far more things that I could not get into, contribute to what my particular perspective is and what I have to offer based on that perspective. Even my weird little personal aversions to being an Okie, my attempts to hide from being an Okie, my attempts to become something I’m not, my final understanding that regardless of anything I am an Okie. All those things, all those twists and turns, are important to who I am.

It is all of these extremely specific things that are specific to each person that are very important in so many ways. And culture is just one part of what I am describing.

Like you can go into anything. And all the specifics matter.

Another example:  I have a severe kind of inertia. So severe that in the medical world it’s been diagnosed as a form of catatonia since I was a teenager. First just as a description and later as an actual diagnosis. Severe enough that sometimes I need help with physical movement through physical prompting. But also not always that severe, fluctuating a lot throughout my lifetime. And fluctuating a lot based on a lot of things. And something that started out not as severe and became more severe over time.

That means that I intuitively understand a lot of the mechanics of how prompting works and does not work. I intuitively understand the vulnerabilities created by inertia.  These vulnerabilities are not well-understood by most professionals or family. I understand how things can go right, and how things can go wrong. This is true of many of us who have this kind of inertia.

Some people have never consistently done a voluntary unprompted movement.  Unlike them, I have had a degree of privacy to develop certain abilities. When I was a certain age, I was able to go on the computer, in a room by myself, and dial in to BBSs.

A BBS, or Bulletin Board System, was a computer system or network that you dialed into using a modem. At its simplest, it would have message boards where people can leave messages for each other. Kind of like if you’ve ever used a web board for some topic or another. It could also have email, whether within the BBS or with an Internet feed. Sometimes it would have Usenet which was again kind of like a web board in its way. Sometimes it would have what we now call chat rooms. Sometimes it would just have the ability to chat with the sysop, or systems operator, who is the owner of the BBS. Sometimes it would even have Internet relay chat. But not all BBSs connected to the Internet. Many were one computer.  Some had their own small networks like NirvanaNet. Which I used a lot.

But my time on BBSs was a time when I could type anything into a computer screen, and watch whatever reaction I got back. At that age, anything I said or typed had a lot of echo to it. So it was not necessarily reflective of what I was thinking. Sometimes it was. But that was not consistent for me. It was formative to privately and anonymously type words into a screen and get words back. Even if the fruits of that experience were in no way immediately obvious.  My communication skills would never have been the same without that.

And there are people who have a lot of inertia. Who have the same awareness I have of how it works and does not work. But who because of either their life circumstances, or their degree and type of inertia, have never had that formative experience of typing with nobody seeing what you’re typing. Or speaking without anyone hearing what you are speaking. And as minor as that might sound to someone who doesn’t know what that means, it fundamentally and hugely affects many things about how you communicate and even what you can communicate.

It also affects what you can safely communicate about. Because if you are dependent completely on other people for your communication, there are things that have consequences if you say them. And some of those consequences may be having your communication taken away forever.

But even aside from the risks, the lack of the experience of ever having communication privacy has an enormous effect on a huge amount of things. For me, having the ability to at least some of the time, and for me it’s most of the time, communicate or even just use words in private means there’s a lot of things I am able to say. Including a lot of things about the mechanics of inertia. And the mechanics of prompting. And the inherent dangers of prompting that cannot ever be erased.

And talking about those dangers is hard for people who depend on physical prompting to communicate. Some people do it, some people try. But they can’t always manage it. And when they do manage it, they may face very severe consequences.

So there are these dangers built deeply into any way of helping someone overcome inertia. And I can’t get into all of what they are right now. I’m not always actually that good at describing the exact nature of them. But I am able to say they are there. I am able to say that they can’t go away.

I am able to say that they are different from, vastly different from, the dangers that most people are aware of. I am able to say they operate in ways that have absolutely nothing to do with the fucking ideomotor effect. That human beings are not Ouija boards. That the fact that this takes place does not mean communication does not take place. But also the people who create, develop, and promote the many different forms of assisted typing do not understand this either. I don’t think some of them want to understand it. But others they just can’t understand if they’re not aware of what the actual problems are. And of course because of the stakes, there’s a lot of pressure to not even acknowledge there is a problem. Or to oversimplify the problem.

And the problem is someone like me is in a position to know and understand the dangers very well, and to be able to say hey there are dangers here. And that is so specific to my position in the world. Like my exact experiences with inertia. My exact experiences with prompting and assisted typing. My exact fluctuations in abilities. My exact background in this entire area, my entire personal history, the ability I had to experiment with language in private for years without anyone knowing who I was and what I was saying and why I was saying it.

And I’m also in a position to understand that even saying there are dangers carries dangers for those who rely on assisted typing of one kind or another. I know that anything I say can be used as ammunition to try and shut down attempts to allow people to communicate. And I take that very seriously, so if that’s your position on this is that all assisted typing is nonsense, I can tell you that is wrong. And I know exactly why it is wrong. Because I have used it.

So I exist in this borderland that is an extremely useful borderland to exist in. And all the twists and turns, all the little details, give me a perspective that is important to the world. I know other people with this particular perspective. Just as I know other people of my basic cultural and family background, both general and weirdly specific.

I’m not saying that I’m uniquely important in my perspective. We all have, each one of us, because of all the specifics of everything about us, an important perspective. We need every perspective we have. Even, or maybe especially, where our perspectives contradict each other or disagree. It doesn’t mean every single one of us is right. But every single one of us has something important to give to the world in terms of how we see the world and how we react to it. And when we try to hard to force everyone into the same perspective, we lose that.

Even weird things matter. Like being seen as high IQ and being seen as low IQ, both officially. Having gone from an early entry college to special education high school in that order. All of these things create understandings of the world that each of us has. Each of us has weird little specifics in our life that all matter.

Often it’s the things we don’t want to know about ourselves, or don’t want to think about, that are important. It’s the things we’re ashamed of. It’s the things people give us crap for. It’s the things we’re afraid of. It’s the things that aren’t even true, but other people’s belief in them has changed our lives.

Painful as some of these things are to think about, the more we understand them, the more we accept that all these things are a part of us, the better equipped we are to understand where we’re coming from. The more you understand the perspective you’re coming from, the more you can contribute from that perspective. It lets you know your exact place in the world and that is a very powerful thing to know. It gives you choices. It gives you understanding. It gives you insights that you would not otherwise have. It gives you more of an in-depth comprehension of both the strengths and limitations of your particular point of view.  It makes you understand your place within human diversity, and the importance of that diversity in all its forms.  It makes you understand why and how it is that diversity can never be neatly summed up.  It lets you know how you can use all of this.

So I’ve used a lot of examples of my own life here. But that’s to illustrate something that applies to every single person on this planet. Our culture matters. Our background matters. Our family matters. Our life experiences matter. Our physical body’s makeup matters. Everything about us contributes to this. And the less we can hide from the parts of ourselves that we don’t want to see, and the things about this that are so painful we don’t want to look at them, the more powerful we can be. And the more powerful our perspectives and our use of those perspectives can be.

So I guess the short version of this is:  Know thyself. But know thyself in detail. Know thyself fearlessly or at least courageously. Know all parts of thyself. Know the parts of thyself you would rather not know. Know the parts of thyself that you are proud of, that you’re ashamed of, that you’re indifferent to, that you are afraid of, all of them. Know how they all fit together. Know the parts of thyself that seem like contradictions and like they throw everything else about you into question. If something scares or repulses you, look twice, and look harder, and overcome the fear enough to see whatever is really there. I guarantee it’s important.

This is not navel gazing. This is how to understand where you fit in the world, where your perspectives come from, what contributions this makes you capable of or even obligated to, and what you can do about it. And it will go on your whole life. But the more you understand, the more power you have to do something good in the world.

Posted in medical

Beware of medical fatalism.

I’ve experienced this for a long time, but several years ago I met a doctor who really brought into focus what the problem was.  It’s one way ableism can turn deadly, but you can’t always catch it because it sounds almost like normal medical advice.

I had a GJ-tube at the time.  This is a tube that goes into one hole into your stomach, but contains two sections, one of which ends in your stomach, one of which ends in your intestines.  This means that part of it winds through the inside of your stomach into your intestines.  But the stoma (hole) itself is just a single gastrostomy hole.

A labeled diagram of a common type of GJ-tube (gastrojejunal or gastrojejunostomy tube). Which is a type of feeding tube that goes in only one hole in the body but connects to both the stomach and intestines separately.
A labeled diagram of a common type of GJ-tube (gastrojejunal or gastrojejunostomy tube). Which is a type of feeding tube that goes in only one hole in the body but connects to both the stomach and intestines separately.

Anyway, I had two separate and unrelated problems.

One, the part of my tube that went into my intestines was rubbing on an ulcer right over a blood vessel, so a lot of blood was coming out of the tube.

Two, a giant nasty abscess had appeared on my stoma practically overnight.  Like one day it was a red spot, the next day it looked like a blister, the next day it was this giant two-inch monstrosity that had popped in several places and was oozing pus everywhere.  To make matters worse, it appeared to have a hole that opened deep into the stoma, so that stomach fluid flowed into it, making it impossible to keep clean.

I was seeing a surgeon to see what, if anything, he could do about the abscess.  Which, at this point, had been there for two months.  (Antibiotic scripts were being mismanaged which made it last far longer than it needed to and in potentially dangerous ways, according to the infectious diseases specialist I finally managed to see after four months of this.)

His immediate response:

“I can’t do anything.  Even if I could get rid of it, you’d just get another.”

This seemed like an odd statement to me.  I’d had my tube for years and never had more than minor skin complications.  I got compliments all the time on how well I took care of my stoma.  This was the only time something like this had happened.  And even if it was likely to happen again, that seemed like no reason to allow a giant painful disgusting infected pusball to fester indefinitely and get worse.

But I realized this wasn’t just his considered professional opinion when I mentioned offhand that I was soon going to get surgery to insert a separate J-tube to replace the GJ-tube and get rid of the ulcer.

“I don’t see the point in that.  Even if you make one ulcer go away, getting a new tube in a new spot will just rub somewhere else and create a new ulcer.”

That’s when I realized a pattern.

And the pattern wasn’t that he actually would have said this under ordinary circumstances.

The pattern was he had already written me and my situation off as not just unfixable, but there being no point to fixing it.  Then he wrote off any problems as inevitable and likely to recur.

Imagine if you took your child to the doctor for an ear infection, and were told, “We won’t treat that, he’ll get another anyway.”  Yes, he probably will get another anyway.  You still treat ear infections.

I’ve never gotten another abscess so far.  It’s been years.

I’ve never gotten another ulcer so far.  It’s been years.

But even if I did, those aren’t things you leave alone if you want to live.

And that’s the thing.

If you have a feeding tube, some people see you as half-dead already.

If you have a developmental disability, some people see you as half-dead already.

I knew a guy with a developmental disability who had to go to the emergency room for a bad infection.  His communication system was limited to actions, facial expressions, and seven signs in sign language, he had spent most of his life in a state institution, he was brown, and he was a ward of the state.  That makes him an unperson to most medical professionals.  They told his staff, “He won’t live out the night,” without even examining him.  Then they tried to walk out without ordering treatment.  She had to scream at them to get him basic, simple medical treatment that would’ve been given to anyone else. He got it, he got over the infection quickly.   This was at least 15 years ago and last I heard he’s still alive.

That’s standard.

I’ve gotten it more times than I can count.

A relative has a lot of health conditions (many of which run in the family), and at one point was told there was no point in treating them because she was in her late sixties at the time.  This meant to the doctors that she was likely to die soon anyway so what was the point?  She had to argue that her female relatives often live into their nineties in order to get any medical care at all at times.  That is not something she should’ve had to say.  Her medical decisions matter no matter what the average lifespan is.  She was facing a combination of age discrimination and ableism (some of her conditions are rare and complicated and they didn’t want to put in the effort of learning, and I’m sure there were assumptions about quality of life and better off dead anyway in there).

This means that in actual situations where I’m trying to do a risk-benefit analysis, it’s very hard for me to trust that the information I’m getting from doctors is accurate.  Because there are situations where it really is not worth intervening to deal with something that’s gonna come back anyway.  Where the treatment is more damaging than the condition.  I have a few of those (including one where the condition is harmless but unslghtly and the treatment is painful and risky, for example).  But when doctors act like that’s the default situation, it’s extremely hard to know if they’re telling you the truth or not.

And in the wrong situation it can kill you.  Or lead to lots of work and unpleasantness and illness that could be totally avoided.

Feeding tubes are definitely one area where this happens a lot.  Many doctors don’t really know a lot about feeding tubes, assume complications are the norm, and assume that anyone with a feeding tube has no quality of life worth preserving by keeping us alive anyway.  That combination means they’ll assume any problems are automatic and inevitable consequences of having a feeding tube at all.  That any complications shouldn’t be fixed.  Either because they’ll come back right away or because they can’t be fixed at all.  And that there’d be no point in fixing anything because why prolong or improve the life of someone suffering as badly as someone with a feeding tube anyway?

These are all potentially fatal assumptions.  Fatal fatalism, I guess.  If you have any kind of unusual medical equipment or conditions.  Or if you are in any way not valued by the medical profession.  Especially if you’re not valued in a way that makes them think of you as dead, half-dead, terminally ill, socially dead, better off dead, or just waiting to die. Then watch out for this like a hawk.  Always think of the ear infection analogy.  If you weren’t better off dead to them, would they treat this?  Do they repeat this advice no matter what your actual problem is?  This is not valid medical advice, this is prejudice dressed up as medical advice.  And it’s an excuse not to treat you.  And it could kill you.  So be careful.

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 Being human, joy, medical

The joy of J-tube feeding.

Picture of Harriet McBryde Johnson, next to the quote, "We need to confront the life-killing stereotype that says we're all about suffering. We need to bear witness to our pleasures."
Picture of Harriet McBryde Johnson, next to the quote, “We need to confront the life-killing stereotype that says we’re all about suffering. We need to bear witness to our pleasures.”

For decades, little noticed by the larger world, the disability rights movement has been mobilizing people from the back rooms and back wards, along with more privileged people like me, to speak plainly about our needs. We make demands. We litigate. Run for office. Seize the streets. Sit through the meetings. Mark up the drafts. That kind of work has changed the world and we need to continue to do it.

But we need to do something else besides, something that may be difficult but is, I think, vital. We need to confront the life-killing stereotype that says we’re all about suffering. We need to bear witness to our pleasures.

I’m talking in part about the pleasures we share with nondisabled people. For me, those include social engagement of all kinds: swapping stories, arguing hard, getting and giving a listening ear. A challenging professional life. Going to movies, concerts, and exhibits. Wearing a new pair of earrings. Savoring the afternoon hit of Dove dark chocolate. I enjoy those pleasures the same way nondisabled people do. There’s no impairment; disability makes no difference.

But I’m also talking about those pleasures that are peculiarly our own, that are so bound up with our disabilities that we wouldn’t experience them, or wouldn’t experience them the same way, without our disabilities. I’m talking about pleasures that may seem a bit odd.

Harriet McBryde Johnson, Too Late To Die Young,

This one may take some explaining.

So I’m fed through a J-tube, short for jejunostomy tube.  That means a tube that delivers food directly to my small intestine.  This bypasses my stomach, which is partially paralyzed and may as well be a dead end where food is concerned.

So I don’t taste food, and I don’t feel the sensations of food in my stomach.  Instead, liquefied food goes into my intestines through a feeding pump, very slowly.  It has to go slowly because while your stomach can expand to take a whole meal, your intestines can’t.  So you have to drip it in slowly, usually over a period of hours.  Some people have to do it 24 hours for a full feeding, while other people can go faster.  I used to do 24-hour feedings, but now I do 8 hours or less depending on how I’m feeling.

I get two kinds of food.  One is a formula called Osmolite.  The other is homemade vegetable soups.  I cook the vegetables and put them in a high-tech blender that can liquefy anything.  Then I strain them through a chinois so they can’t possibly clog the tube.  The vegetables provide nutrients that the Osmolite does not, and help prevent c diff, which I got when I stopped eating vegetables this way.  For more information on the risks of c diff in people who are tube-fed formula without vegetables, you can read the paper Tube feeding, the microbiota, and clostridium difficile infection by Stephen JD O’Keefe from the World Journal of Gastroenterology.  Bottom line: The vegetables don’t just make me feel good, they also feed all my little symbiotes that help prevent c diff.

Mel eating by J-tube from a full feeding bag of asparagus and split pea soup.
Mel eating by J-tube from a full feeding bag of asparagus and split pea soup.

So here’s the joy part:

I think most people experience this feeling, but they never get to experience it alone, so they probably don’t notice it.  Most people’s experience of food is wrapped up in sensations of the mouth and stomach.  Taste, texture, smell, fullness.  I don’t get any of that.  Which means I get to isolate a joyful and amazing feeling that most people never get to experience on its own.

There is a feeling when you are digesting a food that is truly good for you.  I get it from digesting vegetables most of all.  Here, I am eating asparagus and split pea soup.  The feeling is one of intense satisfaction, of rightness, of a subtle but inescapable pleasure that covers your entire body.

And once I am digesting this food, I get to feel that way without anything distracting me.  No taste, no texture, no sense of fullness.  Just the joy of digesting something my body very much needs.

I don’t think people who are fed by anything other than J-tube ever get to experience this feeling on its own.  It’s an amazing feeling.  I bet that if you ignored other sensations, you might find it underneath everything.  But it’s a unique experience to feel it on its own.  And that comes directly from being disabled and needing to bypass all the usual routes of food to your body.

Osmolite makes me feel like crap by the way.  I’m thinking of going rogue and designing my own diet.  But that would take a lot of work, so I’m not doing that right away.  (I have other reasons too, like my high diabetes risk and the lack of formulas that address that until you already have diabetes, which I’m trying to avoid.  It would be easier to design a diet similar to pre-diabetic diets, with specific attention to stuff that feeds your friendly symbiotes as well.  There’s a lot of foods that overlap there, like resistant starches.)

People think that tube-feeding, especially J-tube feeding where you don’t even get to feel a full stomach, takes all the joy out of eating.  But I have learned that when I digest foods that are good for me, I feel an intense kind of joy that I’m not sure most people ever get to feel as directly as I do.

And that’s what Harriet was talking about, these pleasures that are specific to being disabled.  Not joy in spite of disability but joy because of disability.  They are very real.  And in a world that sees disability as nothing but tragedy and suffering and a fate worse than death, they matter a lot.  Especially to people with feeding tubes and other things people are sometimes so terrified of they’d rather die.  I love life, I love my feeding tube, and I love the unique joy of eating delicious vegetables through a J-tube without the distractions of my mouth and stomach.