Slumgullion #45

Yeah, I'm still here. I got new eyeglasses this weekend, and while it may take a few days to adjust to the bifocals (!) I hope to be spending less time squinting and more time online again.

In the meantime, this is the news I'm catching up on today:

"What happens when chronically ill kids grow up?" -- A June article in the Houston Press explains the gap in health care for disabled children who come of age. It's an important topic I haven't seen covered in such depth before, but, hello... the "first large generation of chronically ill pediatric patients to reach ­adulthood"? I'll be 40 in October, and I'm really tired of hearing how all the seriously disabled children before now died before needing adult health care. We're here. We've been here. A number of us have even been blogging online for quite some time. It's just that we're mostly invisible to the mainstream media.

"Girls parents and agency face charges in starvation" -- Danieal Kelly of Philadelphia was 14. She died in 2006 and the charges have just now been filed. Mark at The 19th Floor writes about Danieal and the grand jury indictment (pdf file with one very graphic photo) of nine people for her needless suffering and death.

"Immigrants facing deportation by U.S. hospitals" -- From a NYT series on how the government and others "compel illegal immigrants to leave the United States." Here's an excerpt:

Eight years ago, Mr. Jiménez, 35, an illegal immigrant working as a gardener in Stuart, Fla., suffered devastating injuries in a car crash with a drunken Floridian. A community hospital saved his life, twice, and, after failing to find a rehabilitation center willing to accept an uninsured patient, kept him as a ward for years at a cost of $1.5 million.

What happened next set the stage for a continuing legal battle with nationwide repercussions: Mr. Jiménez was deported — not by the federal government but by the hospital, Martin Memorial. After winning a state court order that would later be declared invalid, Martin Memorial leased an air ambulance for $30,000 and “forcibly returned him to his home country,” as one hospital administrator described it. . . .

Mr. Jiménez’s benchmark case exposes a little-known but apparently widespread practice. Many American hospitals are taking it upon themselves to repatriate seriously injured or ill immigrants because they cannot find nursing homes willing to accept them without insurance. Medicaid does not cover long-term care for illegal immigrants, or for newly arrived legal immigrants, creating a quandary for hospitals, which are obligated by federal regulation to arrange post-hospital care for patients who need it.

American immigration authorities play no role in these private repatriations, carried out by ambulance, air ambulance and commercial plane. Most hospitals say that they do not conduct cross-border transfers until patients are medically stable and that they arrange to deliver them into a physician’s care in their homeland. But the hospitals are operating in a void, without governmental assistance or oversight, leaving ample room for legal and ethical transgressions on both sides of the border.

Indeed, some advocates for immigrants see these repatriations as a kind of international patient dumping, with ambulances taking patients in the wrong direction, away from first-world hospitals to less-adequate care, if any.

“Repatriation is pretty much a death sentence in some of these cases,” said Dr. Steven Larson, an expert on migrant health and an emergency room physician at the Hospital of the University of Pennsylvania. “I’ve seen patients bundled onto the plane and out of the country, and once that person is out of sight, he’s out of mind.”

"Taking the long way around" -- From Oceanside, California, an example of how higher gas prices and budget cuts that have led to more crowded public transit is pushing wheelchair users off the bus. We'll be hearing more stories like this, I suspect.

"Her new role is fighting old label" -- Ms. Wheelchair America is interviewed by the Houston Chronicle. Beauty contests for disabled women have been covered here before, but I do like the approach to her new job that the current Ms. Wheelchair America, Michelle Colvard, seems to be taking. She says:

They're two main ways that the media portray women who have disabilities. It's either kind of passive, needing help, victim, suffering. You hear a lot of those words, wheelchair-bound, these negative-word connotations. ... On the other hand, women with disabilities who have done pretty well for themselves are put up on a pedestal. I think sometimes that's a bad thing, too.

The Russian

On my first night at the rehab hospital, I was about as vulnerable as a person can be. I'd been in the ICU at a different hospital for a month. I had a new tracheostomy and was using it to breathe with a ventilator -- a new and frightening experience for me. I also had a new feeding tube, a PICC line, a catheter for urinating, and I'd barely been out of bed for that whole month.

I was weak and unable to speak. I communicated by writing on paper, which required the absolute cooperation of whomever I was communicating with. Basically, they had to consent to let me "speak" by handing me paper and pen, then waiting for me to write my message. (BTW, this procedure is the reason I am kinder to spelling errors -- my own and everyone else's. Spelling used to be a pet peeve. Ah, the luxury.)

Leaving the ICU, I chose between two rehab hospitals that I knew nothing about. My parents visited each and each sent representatives to meet me, "assess" me and lobby hard for me to choose their institution. I made a wild guess, choosing the hospital farthest from my home and requiring almost an hour's more commute each way for my parents as they came to see me most every day for the next three months.

It was the right choice. I ended up at place filled with amazing, dedicated people. But that first night was terrifying. And not just because of my own uncertainties.

I've got a knobby little tailbone that sticks out. I've never ever had a pressure ulcer (also called a "bedsore" or decubitus ulcer) anywhere on my body, including my tailbone, in part because I've spent quite a bit of time lobbying on it's behalf every time I put my body into strangers' hands, lay on a hard x-ray table, or require other people's assistance in keeping it healthy. For my four months in the ICU and rehab that meant an inflatable mattress on my hospital bed and frequent repositioning.

Sometime during my first night at the rehab hospital, I woke up needing help to roll over, a rather complicated process when I was so weak and had so very many tubes to avoid yanking. I rang the bell for help and a nurses' assistant showed up. I forget her name, but she had an accent so I'll call her "The Russian" as I did at the time to family and friends.

She understood I needed to be repositioned and she told me she needed to go get another person to help. It is commonly a two-person job in acute care settings and may even be required procedure, but when she didn't return and my butt began to ache badly from laying in one position too long, I rang the bell again.

The Russian returned alone to tell me she was trying to get help, then left again. I don't know exactly how much time passed, though it was easily 30 minutes since my first call for assistance, and it may have been as long as an hour. My butt was throbbing painfully now, sparks of nerve pain shooting down my leg. In desperation, I spent significant energy wrestling the pillow wedged behind my back away enough that I could shift slightly and ease the sharpest of pain to buy some time.

Shortly after, The Russian returned. Again alone. She saw the pillow had been moved and began berating me: "Why you bother me? You don't need help! You did this yourself after bothering me? If I catch you ever moving by yourself again don't expect me to do anything for you!"

I had no opportunity to tell her what I was thinking: "You will too frakking help me! That's your job! $ & % #*&!"

In order to reply, she would have had to agree to handing me my paper and pen, and she either didn't understand that's what I wanted or she purposely refused. It was a long fearful first night after that, not knowing if help would come if I needed it (for repositioning or breathing or whatever), and for the next many nights until I learned that her behavior was not typical of the institution or people working there.

In the morning when my parents arrived, I told them all about The Russian, writing the incident out for them in detail. I didn't take it further than that and neither did my parents.

Why? Because I didn't yet know if she ran the night shift, if others held her view and I was stuck somewhere where being the squeaky wheel might further endanger me. Because I was immersed in trying to get my primary doctor to hand me the paper and pen instead of telling me about my care and walking out the door. Because the speech therapy folks were busy giving me cognitive tests and asking things like if I knew where the window in the room was. Because in addition to my serious health issues I had one giant communication problem with getting people to treat me as an aware, active participant in my own recovery. Because the principle and all-consuming job in being an inmate in any institution is self-defense, just keeping well-meaning professionals from accidentally making you sicker.

My parents were equally immersed and could certainly have reported the incident, but when the abuse didn't recur, we all ended up focusing on the next most emergent issue. And there were dozens of them.

Was The Russian just having a bad night? Maybe. But I think she was hazing me. Three long months later, on the night before I came home, she stepped into my room to tell me what a pleasure of a patient I'd been. "No trouble." Compliant, she meant, of course. Less needy than other folks. There hadn't been a night for those whole three months that I hadn't been acutely aware of whether or not she was on duty.

The most disturbing part of this story is that I didn't tell her supervisors, right? I was conscious, had by wits about me (more-or-less), had caring family visiting daily, and knew at the time it happened that she was being abusive of her power over me. But this is how institutional abuse starts, why there is space for it to lurk even at excellent institutions. I was busy surviving and her behavior was only one of the many scary things I was subject to.

What would have happened if I had told her supervisors? Would I have been believed? Would I still have been subject to her care after essentially threatening her job? Were there a dozen other employees like her I just hadn't met yet who would hear I was "troublesome"?

What if I hadn't had any visitors to tell, providing, as my parents did, psychological assurance that further abuse could be responded to? What if I had been unable to communicate any of this to anyone, as was true for many of the people in rooms adjacent to mine?

Abuse doesn't really need much space to thrive, and it needs even less to occur only once. Probably not everyone would consider this abuse. But it was a verbal threat to deny me assistance while lying helpless in a bed from someone charged to show up if, say, my ventilator quit giving me air. Like any sort of intimate violence (domestic violence, date rape, etc.), violence against disabled people is contextual and opportunistic and can happen to anyone.

Grand Rounds: Briefing the Next U.S. President

The latest Grand Rounds, a weekly carnival on medical and health blogging, is a collection around the theme of "Briefing the Next U.S. President." Check it out at Sharp Brains.

Cross-posted at Alas, A Blog

Just when you think you're safe

This past August really sucked. September did too. I got a routine feeding tube replacement at the end of July and then had weeks of agony every time I ate because the new tube was not placed right. There was too much of it in my stomach, it turns out, and when I ate the balloon at the end of it slipped down to block food from exiting into my intestines. I felt like I was being poked with a sharp stick from the inside. I was hungry all the time, then had intense pain when I dared to eat.

Of course, the cause of my pain went undetermined for all of August and half of September. It took some persistence to get medical personnel to just get that thing out and try a new one, please. And after a replacement fixed everything so that I was immediately pain-free, there was never an acknowledgment that it was the installation that caused the problem. I didn't even press for that because, well, I know the game. And I also know mistakes happen, I'm often a peculiar case to treat, and excellent doctors can do their best and still not have it work out. It may have been gross incompetence or a routine but regrettable error, and I know I won't get an official medical answer on that. I satisfy myself that I know more about who and where the risks are for the procedure and the institution I go to for it.

But that drama isn't what I want to write about.

On the day I got the successful replacement in mid-September, I first consulted with the doctor in the out-patient recovery unit. See, the painful tube was installed by a doctor I'd never met before. The guy who'd always done it before and who successfully fixed it is the one I've noted before seems to be pretty rude. I'll call him Doctor A. Doc A made some sensible comments in that consultation, saying he'd like to fix one thing at a time -- first the pain, but maybe next replacement I could switch to a Mic-Key tube. I have a G-J PEG tube which I describe here. The Mic-Key goes only to the stomach and is just a button on the outside rather than a tube and ports for both the stomach and jejunum.

In our consultation, Doc A suggested the Mic-Key and I explained that the whole reason I got the feeding tube to begin with is because of stomach troubles that made the jejunal port the key part of my anti-starvation strategy two years ago when I entered the hospital weighing 75 pounds. I can still swallow enough that I eat all my food by mouth now (and have for the last year or so since gaining weight and strength because of that tube), and while eliminating the feeding tube entirely might be a legitimate proposal, eliminating just the part of the tube that has been particularly life-saving for me does not seem logical.

Doc A seemed to accept all that in consultation. Our first priority was to change what he (correctly) thought from examining a week-old x-ray was an improperly placed tube. The week-old x-ray was from a consultation with Doc B, the doctor who had installed that painful tube. B didn't see anything wrong, but A had viewed it and immediately called me to tell me to come in and get it replaced since it looked all wrong to him. So, the Mic-Key tube wasn't the immediate issue anyway.

Then I got in the x-ray room and up on the table under the fluoroscope for the procedure. They took a preliminary look and found my wrongly-placed tube had migrated since the week-old x-ray and looked just fine where it was. (Possibly because I was avoiding food at all costs.) Suddenly Doc A wanted to leave it alone, or put in the Mic-Key. He believed the pain issue solved and had ticked it off his mental list.

I was laying prone on the table, unable to speak while horizontal, as is often the case with my trach. He was pushing for the Mic-Key, explaining how simple and attractive, how less-complicated and more comfortable it would be. The x-ray tech and assisting nurse chimed in.

"Just nod yes and we'll put it in," Doc A said. "Just nod yes. Just nod yes."

Fuck that, eh?

My personal nurse stepped in and said I needed to sit up to speak my mind. So they propped me up enough that I could tell them, "No. No no no no no!"

Get this painful thing out, please. Give me what has worked fine for the past year-and-a-half.

Doc A argued that we could put in the Mic-Key now, and I could always come back and reinstall a G-J PEG if I had trouble down the line. No problem. We'll change it when you say.

"I'm tired of being hungry," I said. If I have stomach trouble I want food that same day, in my jejunal tube.

The x-ray team tried to persuade me: "The longer you have a tube, the more trouble it is. We see this all the time. The Mic-Key is just a cute little button. You'll hardly notice it's there. If it doesn't work you can always come back."

"I've been back. I was here last week. I'm still wearing a damn diaper from the diarrhea-causing contrast dye* from that useless visit. I am hungry. I'm tired of being hungry today."

Doc A did change the tube as I wished. Reluctantly but kindly. And it's worked perfectly ever since.

But when they were saying this: "The Mic-Key is just a cute little button. You'll hardly notice it's there."

Here is what I heard: "If you work harder, you won't need a wheelchair at all. Won't that be nice?"

And: "Show me someone who can't walk, and I'll show you someone who's depressed."

And: "Wouldn't it be great to get off the vent and not have to lug that thing around?"

The answer: Appearance and conforming to the social norm is not in the interest of my health or quality of life. Sitting down to move through the world, when I finally did that in 1983, was a huge relief to me. I could engage with the world rather than being exhausted with the effort of just showing up. Ditto for the vent. Having energy is not depressing in the way that feeling like you're so short of breath you might pass out drags you down.

I don't know what mix of good medical advice and pressure to have me meet an able-bodied norm fueled Doc A and his x-ray staff. I know both were present, as well as A's apparent failure to listen to me in that consultation. In addition to Doc A's expertise in righting another doctor's wrong, here's what I take away from that outpatient visit: I am never safe. They may not be listening to me. They will ambush me when I am least able to speak for myself and try to do their own thing. Their actions will be motivated by medical knowledge and able-bodied assumptions about what I want and need. I am never safe.

--------------------------------------------------------

*Dye injected into the feeding tube shows up on the fluoroscope to assist proper placement. Until it works its way from my very slow-moving digestive system, it's all liquid poop.

On Ruben Navarro

If you read just one thing this week about disability in America, read this.

I briefly mentioned Navarro's case here but the above link has important and better detail than the news story I linked to.

Hospital violated state law performing "Ashley Treatment"

I will do more than simply post the links on this soon, but the news for now from the Washington Protection and Advocacy System (soon to be Disability Rights Washington - DRW):

Many people with disabilities have expressed great concern over the use of invasive medical procedures used to keep a young child with disabilities small. As reported at great length, parents of a six-year old girl named Ashley asked doctors at Seattle Children’s Hospital to give Ashley high doses of hormones, and remove her breast buds and uterus.

Pursuant to its PADD federal mandate, the Washington Protection and Advocacy System (WPAS) used its federally granted access authority to initiate an investigation into the use of the “Ashley Treatment.”

The investigation revealed that legal the rights of the child were violated when the hospital involved proceeded with the hysterctomy portion of the treatment without a court order first being obtained.

The hospital acknowledges its mistake and has agreed to implement many procedures to prevent similar legal violations from happening in the future.

Please read the WPAS Investigative Report Regarding the “Ashley Treatment” for more information about what happened to Ashley and how to prevent it from happening to other children with disabilities.

Update: Ashley X's parents respond to today's report:

Parents of Ashley X's Position on the Legal Findings on Hysterectomy

As the loving parents of Ashley X we support the vigilance of WPAS in their effort to protect the vulnerable members of our society.

In 2004 Ashley X was indeed given a hysterectomy without a court order. Prior to the surgery, we had consulted with a disability lawyer and learned that the state law, which is intended to protect the rights of the disabled to procreate, did not apply to Ashley's case since:

1- Given Ashley's developmental state and prognosis, which is well-documented by her doctors and was reported to the Ethics committee, voluntary procreation is not meaningful or applicable to her case and will never be.

2- Sterilization is not the intent of the Ashley Treatment but a byproduct of it

While we support laws protecting vulnerable people against involuntary sterilization, the law appears to be too broadly based to distinguish between people who are or can become capable of decision making and those who have a grave and unchanging medical condition such as Ashley, who will never become remotely capable of decision making. . Requiring a court order for all hysterectomies performed on all disabled persons regardless of medical condition, complexity, severity, or prognosis puts an onerous burden on already over-burdened families of children with medical conditions as serious as Ashley's.

As responsible and loving parents, deeply concerned for the wellbeing of our child, we provided a better quality of life to our Ashley, who is doing very well under our love and care. We hope that other families of the many children like Ashley will likewise be able to care for and benefit their children without undue obstacles.

We appreciate your continued support, prayers, well wishes, and respect of our privacy.

Ron Kovic on war

This is a video of activist Ron Kovic by MoveOn.Org speaking about war, the disability it causes and the cost to Americans. Thanks to Trinity for the link.



Description: Visually, it is a close-up of Kovic speaking. He's a genial-looking, balding white man with a trim white beard and mustache, wearing wire-rimmed glasses. He's wearing a button-down white dress shirt, unbuttoned at the collar, and a black vest. Preceding his speaking is a black screen with the words "Video Vets interview with Ron Kovic" and then a cover of his autobiographical book Born on the Fourth of July. And following his speech is another black screen and the web address MoveOn.org

Audio: "My name is Ron Kovic. And I joined the United States Marine Corps out of high school in 1964 inspired by President Kennedy's "Ask not what your country can do for you, but ask what you can do for your country." I asked what I could do for my country. I volunteered for two tours of duty in Vietnam. I was ready to- I was willing to risk my life and I was willing to die for my country. I so- I trusted- I trusted my leaders, I trusted this government. And all of that was shattered after Vietnam.

"On January 20th, 1968, while leading my scout team across an open area. Leading an attack on a village, I was shot in the right foot, the first bullet went through my foot and blew out the back of my heel. The second bullet- I continued to return fire in a prone position. The second bullet hit my right shoulder, went through my lung and severed my spine from my mid-chest down. I became paralyzed for the rest of my life. Vietnam changed my life and that wound changed me forever.

"I'd seen the cost of war, the human cost of war at the intensive care ward in Danang. I'd seen it at the Bronx VA. I'd lived amongst the rats and the overcrowded conditions. Patients pushing call buttons, aides never coming to their- men lying in their own excretement. And a government- a government that could pay for the most- the most technologically-advanced weaponry, the most lethal weapons you could imagine. Millions of dollars, billions of dollars, and yet could not care for their own wounded when they came home.

"Over the last month and a half, I found myself amongst the wounded once again at the Long Beach Veterans Hospital. I was told that there were two young men in the room next to mine. They were in their early twenties. They were Iraq veterans who'd just been paralyzed in the Iraq war. And it just touched me very deeply.

"I spent that month and a half in the Bronx VA. I met some of the most wonderful people, very dedicated people, very caring human beings. But there were the same overcrowded conditions. There was- there was the equipment that broke down, the equipment that did not work, the need for more funding, the need for more caregivers, more aides. And there were patients who continued to have to wait for assistance, same as the Bronx in 1968. There was a shortage of nurses.

"How can you send young men like myself and those of this generation to Vietnam and to Iraq? How can you send them and spend billions of dollars on a war that is lost, a war that cannot be won? A senseless war. A wasteful war. How can you do that? How can you put their lives at risk? How can you put them through that emotional trauma and not care for them when they come home? This is- this is unacceptable. I love this country. I was willing to risk my life. I gave three-quarters of my body to this country in Vietnam. And I'm watching this same thing happen all over again.

"What is it gonna take? How many more have to die? How many more have to come home wounded and maimed like myself?"

Coming Tuesday -- Info pulled upon request

The full info on Tuesday.

Update: Info here.

Medical professionals who are excellent, asses and part of a failing system

My posse and I trekked into the Twin Cities this morning (despite threats of dangerous weather that have come true all around Minnesota over the day) because of a malfunctioning G/J feeding tube that needed immediate replacement. The balloon part that inflates in my stomach to hold it all in place had deflated itself and the damn thing was trying to come out, which it cannot really do without also pulling away from where it enters my upper intestine (jejunum).

This deflation and migration caused me some discomfort but not any intense pain, the hospital that installed it worked me into the schedule this morning and it was easily replaced. I returned home before people started sliding off the icy roads and all is mostly well with my world.

But there's this little drama that plays out each time I get the tube replaced and I've only just today discerned the pattern among the cast of medical professionals I spend about a half hour with -- usually every three months. The nurse who comes to get me in the radiology recovery room (for outpatient procedures I am unfamiliar with) is always male, which is fine, but curious since nursing is a predominantly female profession. He's also always incredibly personable and relaxing to be around, which I appreciate since he is my host to Events That Thus Far Have Gone Smoothly But Do Involve Medical Risk. This host has been several different specific guys in the past year, all kind and competent.

The x-ray techs are also mostly male in this high tech procedure, though today there was one woman present other than myself and the nurse I brought with me from home. These x-ray techs do non x-ray-ish things like sterilize my stomach with Betadine and arrange the surgical drapes. I expect the specialization of the nursing and x-ray tech requirements somehow explains the male predominance I've observed, but I don't know exactly how or why.

The nurses and x-ray techs have all always been reassuring, professional, caring, kind, responsive -- everything you want in medical people. The doctor shows up for five minutes to yank the old tube out and thread the new one in. The guy I usually get calls me "sweetheart" and comes and goes rather politely but quickly. He seems skilled, and I appreciate that.

But here's the thing: He's a total ass to the other people and, in subtle ways, to my nurse. It's not one isolated incident. He's displayed asshattery on several occasions now, belittling the employees under him at the hospital and treating my nurse like she and others like her are either negligent or incompetent. Today's deflated balloon and faulty tube, he asserted to my nurse, was the fault of her and others in my employ who just won't leave it alone and must have manually deflated the balloon.

The doctor discussed this with my private nurse out of my hearing, basically giving her professional chiding and advice without ever once consulting me about my care. It didn't dawn on me until today that not only am I just a body on the table that he does a quick procedure to and then leaves, but he doesn't even consider me a partner in my own care of the equipment he installs in my body. Perhaps because I have a nurse, I don't know. Maybe it's part of his abrupt pragmatism and crowded schedule, but I doubt it's as simple as that.

Meanwhile, the other employees of the hospital that he seems to consistently belittle and treat like dirt continue to shower me with thoughtful care. It's unlikely he's like that just when I'm around once every few months, right? This is a working condition for these other professionals that serve me well and might someday decide that they don't deserve this crap and move on to another job.

There's gender, ableism and a kind of professional classism at work in these dynamics I observe, and it's taken me a year of quarterly encounters and some quizzing of my nurse to get a fuller picture of it, since I'm not privy to all of it that occurs even in my specific interests. And this is an example of medical competence, really. In all ways medical, it's basically a successful encounter. And yet that successful-ness seems precarious to me because of all the power dynamics involved with this one doctor, and that's been on my mind all day.

Genni McMahon, who blogs at Ilyka Damen's, has had much more dramatic, critical problems with medical care on her mind today. Read it all, but here's a taste:

My mother became very ill the night before last with a high fever, extreme body aches, and weakness. She’s 62, swims three times a week and uses her Nordic Track everyday. She’s a partner in an accounting firm, takes no prescription medicine, and is a health nut. She couldn’t get out of bed, so my sister and I went to her house and called her doctor; he’s a skilled physician, but like most of the system, he’s a doc for profit. His office told us to take her to the ER. There, we had a really bad experience and they managed to nearly kill her, which I’ll share in a moment.

First, though, let me say that in spending the entire day in an ER, with momentary breaks to go get things from my mom’s house and take a kid from one caretaker to another, I noticed what I think is the absolute cornerstone of What’s Wrong With Healthcare In America. I’m sure you’re curious as to my discovery, so I’ll let you experience it as I did.

Poetry Monday: Their Sudden Tongues

Tulips
by Sylvia Plath

The tulips are too excitable, it is winter here.
Look how white everything is, how quiet, how snowed-in
I am learning peacefulness, lying by myself quietly
As the light lies on these white walls, this bed, these hands.
I am nobody; I have nothing to do with explosions.
I have given my name and my day-clothes up to the nurses
And my history to the anaesthetist and my body to surgeons.

They have propped my head between the pillow and the sheet-cuff
Like an eye between two white lids that will not shut.
Stupid pupil, it has to take everything in.
The nurses pass and pass, they are no trouble,
They pass the way gulls pass inland in their white caps,
Doing things with their hands, one just the same as another,
So it is impossible to tell how many there are.

My body is a pebble to them, they tend it as water
Tends to the pebbles it must run over, smoothing them gently.
They bring me numbness in their bright needles, they bring me sleep.
Now I have lost myself I am sick of baggage ——
My patent leather overnight case like a black pillbox,
My husband and child smiling out of the family photo;
Their smiles catch onto my skin, little smiling hooks.

I have let things slip, a thirty-year-old cargo boat
Stubbornly hanging on to my name and address.
They have swabbed me clear of my loving associations.
Scared and bare on the green plastic-pillowed trolley
I watched my teaset, my bureaus of linen, my books
Sink out of sight, and the water went over my head.
I am a nun now, I have never been so pure.

I didn't want any flowers, I only wanted
To lie with my hands turned up and be utterly empty.
How free it is, you have no idea how free ——
The peacefulness is so big it dazes you,
And it asks nothing, a name tag, a few trinkets.
It is what the dead close on, finally; I imagine them
Shutting their mouths on it, like a Communion tablet.

The tulips are too red in the first place, they hurt me.
Even through the gift paper I could hear them breathe
Lightly, through their white swaddlings, like an awful baby.
Their redness talks to my wound, it corresponds.
They are subtle: they seem to float, though they weigh me down,
Upsetting me with their sudden tongues and their colour,
A dozen red lead sinkers round my neck.

Nobody watched me before, now I am watched.
The tulips turn to me, and the window behind me
Where once a day the light slowly widens and slowly thins,
And I see myself, flat, ridiculous, a cut-paper shadow
Between the eye of the sun and the eyes of the tulips,
And I have no face, I have wanted to efface myself.
The vivid tulips eat my oxygen.

Before they came the air was calm enough,
Coming and going, breath by breath, without any fuss.
Then the tulips filled it up like a loud noise.
Now the air snags and eddies round them the way a river
Snags and eddies round a sunken rust-red engine.
They concentrate my attention, that was happy
Playing and resting without committing itself.

The walls, also, seem to be warming themselves.
The tulips should be behind bars like dangerous animals;
They are opening like the mouth of some great African cat,
And I am aware of my heart: it opens and closes
Its bowl of red blooms out of sheer love of me.
The water I taste is warm and salty, like the sea,
And comes from a country far away as health.

More on Emilio

I posted about baby Emilio Gonzales on Wednesday, but here's a petition to sign for him. It does appear that public attention and involvement has had an effect so far.

Emilio has not gotten much national mainstream media attention so far, but for further info on the Texas futile care law, which was signed into law by then-Governor George W. Bush, you can check out the ever-dubious Wiki as a starting point. It lists several cases that have come under the Texas law since it was signed: Sun Hudson, Tirhas Habtegiris, Andrea Clark, and Baby Emilio.

Sun was the infant of a mentally ill woman and the first American child to be refused medical care against his parent's wishes. Habtegiris was an African immigrant woman who couldn't pay her medical bills, and Clark was a 54-year-old heart patient.

It's fairly clear that this law is principally applied to people without resources, since there have been no cases of people dying under this law who were, for example, adult white males or terminally ill people who can better pay their bills or access adequate insurance. This is euthanasia for the poor.

Little Emilio and the Texas Futile Care Law

The AP story here:

A dying toddler facing removal of his life support system received a reprieve Tuesday when hospital officials agreed to keep his breathing device running until at least April 10.

The decision came hours after attorneys for Emilio Gonzales, a 16-month-old who doctors believe has Leigh's disease, filed a temporary restraining order request to prevent removal of his life support. Gonzales, who has been at Children's Hospital in Austin since December, was scheduled to be taken off life support Friday.

The deadline extension also came hours after Catarina Gonzales, Emilio's mother, appeared at the Capitol with lawmakers who support a bill that would prohibit hospitals from stopping life-sustaining treatment while a family pursues a transfer or other care.

Under the current law, doctors are obligated to give only 10 days notice before withdrawing treatment when further care is deemed medically futile, even over the wishes of the patient and family.

From the letter FRIDA (Feminist Response in Disability Activism) wrote to Texas Governor Rick Perry:

.... It is not the severity of Emilio's illness that is at issue here. Rather, we are opposed to the state-sanctioned removal of Emilio's life support and the violation of his human and civil rights and protections. We also join his mother, Catarina Gonzales, in her condemnation of doctors "godlike position," and believe her fight for the right of Emilio to live is life-sustaining and life-affirmative. Counter to the perspective of doctors, we do not believe it is undignifying to be on life support....

Compare Texas' law and the hospital's decision to this recent NYT story on hospice for infants and the comfort and closure it provides for family.

Anniversary -- Escaping institutionalization

This Tuesday, March 6, was the one-year anniversary of my returning home from my four-month hospital stay. What makes the date so important is that my insurance company tried very hard to have me sent to a nursing home after I'd been at the rehab hospital for two months. I was progressing with occupational and physical rehab, I was attempting to wean off the vent, and I was learning how to speak with the trach and ventilator. I was gaining weight -- up to 92 pounds from my low of 75 when I entered the ICU in November 2005.

Had the insurance company gotten it's way, I would have gone to the one nursing home in the entire Twin Cities they considered "in network" and accepting of vent-dependent clients. And I firmly believe that would have led to my death -- quite possibly in this past year.

From the beginning of my medical crisis, my parents and I had talked about how we would try our best to adapt to my changing needs -- the increased need for skilled assistance, the steep learning curve for the vent, trach and feeding tube, the medical bills threatening their financial security as well as mine. The insurance company assigned me a case worker. The hospital social workers helped us begin to navigate the system for state and federal aid. I signed over the title of my van to my folks, an act that terrified me because of how necessary and tenuous being asset-less appeared to my survival. (It's back in my name now, but at the time it was suggested as necessary.)

While I was busy at the rehab center with the minutiae of movement and breath, my parents were working to secure a home health agency and nursing care with state funding approval. Then, one morning, my Mom got a call from that insurance company case worker.

"I've got good news!" she said. "We're moving Kay to a nursing home that's closer to you so you won't have to drive so far to see her! The home is sending someone to assess Kay today!"

This is a person who knew we were working hard to get nursing coverage for me at home. And I don't know how long the insurance company had been planning to drop this bomb, but because I didn't have a telephone in my room (or, really, the ability to speak into it), she was basically telling my Mom the bomb was about to be dropped on me. My parents say they raced to the hospital -- a 90-minute drive -- to keep it from looking like they had decided to ambush and abandon me.

When I was in ICU at first, I was intubated with the breathing tube in my mouth and down my throat. For various reasons, including the Thanksgiving holiday and some scheduling around it, I was intubated for about three weeks and conscious for all but the first couple days before surgery to install the trach at my neck. Intubation by mouth is very painful on the jaw and tender throat. And frightening. During that time -- November 2005 -- I shifted emotionally from wishing I could die and stop the misery, being overwhelmed by the small kindnesses of people and the company of friends and family, and compulsively wondering if this was leading to the end. I was sure it was not, despite my on-and-off despair. I've had pneumonias that felt very deadly and like I might be rattling my way toward death, but this felt like a living transition that I would survive.

And yet, three months later, after the hardest-working, most character-building time of my life, when my parents rushed to my room at the rehab hospital to tell me the insurance company was planning on sending me to a nursing home, my absolute first private thought was, "So this is going to kill me after all."

That's not just drama. I've made a study of how institutionalization leads to the abuse and death of disabled (and elderly) folks -- especially those using ventilators. Like we feminists follow the state of reproductive choice, I have followed the freedoms and lack of them for disabled people in institutions. Abuse and death in institutions has been a theme, along with the basic immorality of warehousing people, in small activist publications like Mouth and Ragged Edge for decades.

As details about this particular facility I was slated to enter became known, it became clear to everyone I talked to at the rehab hospital that being there would likely endanger my health and most definitely halt and reverse specifics of the work I'd done in physical therapy.

As it happened, the one person at that nursing home responsible for assessing incoming inmates was away on a holiday in the tropics and did not visit me that day the insurance company woman said he would. My parents were able to break the news to me, and there would be a weekend reprieve. We learned more about the home in that time -- this home that none of the doctors, nurses, therapists, or RTs that I quizzed at the rehab hospital had any familiarity with. They couldn't recall sending any other patient there, though that was possibly due to a name change, I don't know.

Here are some things I learned about this nursing home I narrowly escaped being sent to, from my parents' on-site tour and my doctors' communication with the facility:

There was a vent wing with about a dozen people there using ventilators to breathe. When my parents visited in mid-afternoon, all these people that they saw through open doors were stuck in their beds.

I was slated for the last room at the end of the hall, as far as you can get from supervision and assistance.

There was no internet access anywhere available to inmates. And no TVs in the rooms. Patients were expected to provide their own if they wanted something to do while immobile in their beds. I suppose this is true of most nursing homes? I don't know.

There was a dining room, but when my Mom asked the home rep if I would be eating in it, she was told it was doubtful. Because of the vent, the woman said, unless I had someone of my own to assist me, I would be staying in my room for meals, and likely for everything else.

Much of the population was warehoused homeless people, probably mentally ill as well as formerly indigent, whom no other place would accept. My parents deduced that a young woman (okay, middle-aged) who cannot walk and is stuck in bed on a ventilator at the end of a long hallway without the power of speech might be vulnerable to physical attacks from mobile, minimally-supervised people with mental issues of their own.

There were RTs (respiratory therapists) on staff but all of them were off-duty every day from 3 p.m. until the next morning. (With my body adjusting to the trach and vent at that time, I was experiencing frequent "mucus plugs" that completely blocked off my airway and required immediate suction relief -- all of these events occurred for me at rehab during evening and night times. More than a dozen times I experienced these plugs, which often hit without notice. Once, I blacked out completely while the RT worked to clear my airway -- and this occurred with a night-duty RT who came immediately to my vent alarm from a desk just a few yards from my bed.*)

The ventilator I would be required to use would not allow for any weaning and would not be portable on my scooter.

I might not be allowed to use my own scooter, which in any case, would be of limited utility without a portable vent.

There was no physical therapy available to help me maintain or increase my strength, which I'd been working on daily to rebuild.

This was the only "in network" option my insurance company was giving me. Without home nursing assistance yet in place, the rehab hospital would not allow me to go home, but the insurance company expected this place would be suitable. My parents were so afraid for my safety and health that they were planning to take turns sleeping in the nursing home room with me, fighting whatever policies might prevent even that. The home care agency we were working with was racing to hire nurses, but expected it would take three weeks to a month.

It did take a month to get the nurses for home care -- and even then, only partial coverage. In the meantime my respiratory health took a little dip, likely because I was crying quite a bit from all this. Concerned, the rehab hospital doctors would not release me to the nursing home, the assessment dude never showed up, and one day, quite suddenly, the insurance company called the social worker and completely relented with the institutionalization plan. I'm sure this is because I had people: my parents to speak for me when I literally could not and wouldn't have had the energy or heart anyway, doctors and RTs who I was awake and conscious enough to build a relationship with so that they perhaps fought a little harder for me in a battle they faced with insurance companies daily. I had resources to keep me from that nursing home I believe would have caused my death. Other people do not.

This one-year anniversary reminds me of how very afraid I was to leave the hospital and the trained professionals behind for my parents' newly-learned suctioning skills and nurses we newbies would have to train. I'm home and happy, though unemployed and baffled as to how anyone who has to manage full-time assistance does anything else useful with their time. I'm hoping to figure that out in the coming year. This is a bittersweet anniversary to celebrate when I understand how very very lucky I am, and how the story is much different for other people who do end up in nursing homes and other institutions.

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* Because of medication, adjustment to the vent, and a lowered cuff that prevents sudden total blockage, plugs are not an emergency I have had for about ten months now. This is the result of a lot of hard work and vigilance on my part. Conscious, alert, and in charge of my own health care here at home, I can weigh all the factors and adjust medication that prevents plugs, refuse meds if I don't need or want them, ask for suction, request more or less water in my cuff -- all without being institutionally "noncompliant" or having something decided without my input or consent. Until I was able to verbally express these wishes, my written communication was respected and "heard" by people who my family and I were able to assure cared about my preferences.

Cross-posted at Echidne of the Snakes. Check for more comments and discussion over there.

Losing my religion, part 3

In August of 2005, before my medical crisis that November, and prior to the long hospital stay and the thoughts and prayers offered by so many good people, I wrote Losing my religion, part 1 and part 2. I've thought on writing the promised part 3 many times since, but haven't been able to clarify my complex feelings enough to write more.

But last week, Chris Clarke of Creek Running North (and, recently, Pandagon) lost his beloved dog Zeke and was compelled to respond to the many blog comments and emails he's received that insisted on reassuring him about an afterlife for his lost friend when he has made clear he is atheist. He felt the need to specifically ask the people of the internets to stop pushing their beliefs upon him while he grieves. He said this:

But when people persist, in what they know is one of the worst weeks of a person’s life, in telling that person his belief system is wrong and misguided as a way of ostensibly showing sympathy and compassion, that, my friends, is an example of religious intolerance. When people respond to a politely worded request to can the heaven stuff by ramping up the heaven stuff, that is an example of religious intolerance. When a person has to take time out from grieving to forgive people who’ve made him feel a lot worse, telling himself that he has to give them slack because they’re upset over the death of his family member, that he has to remember they’re just trying to make him feel better with promises of meeting again despite his express request, that is a symptom of religious intolerance.

And I find myself thinking: This is why I quit going to church and why I cannot reconcile the community I experienced as a less visibly disabled child with any sort of meaningful participation in organized religion as a visibly disabled adult.

From the perspective of so many people, being disabled is like living the worst week of your life all the time, and therefore justifies the imposition of their religious beliefs on you all the time. You know, to be helpful. Combined with the persistent beliefs in many religions -- reinforced by religious texts -- that disabled folks are afflicted because of past sins or will only have worthwhile lives when healed, the weight of other people's religious convictions can drive away even true or possible believers who are disabled. It's been the case for me and some commenters here.

To clarify, I'm agnostic, and also so distracted by the disability attitudes of others in a religious environment that I cannot separate the good aspects of religious community from the overbearing ableist ones. Even in non-religious settings, the "God bless yous" from strangers can be impressive in quantity and fervor. It's clear that an enormous portion of the population believes disability equals a greater need for prayer. And I'll say it now: that just is not true. By and large, this determination that disabled people need special spiritual consideration has a lot to do with visual disability and the perception of who is and is not suffering. For example, when I was a pre-wheelchair teen struggling to walk and not trip over clumsy feet, I did not get the "God bless yous" that I did when I began traveling by chair. From a practical perspective, my life became easier and less exhausting when I started living on wheels, but the public perception seemed to be that I needed more input from God.

Disability is not equivalent to suffering. It's reasonable to say that impairments and the challenges that surround them can and frequently do involve a variety of human suffering, but the relationship is not certain or necessarily acute and it's insulting when people assume that it is. Pain, hardship and fear are qualities of human suffering, and during my medical crisis that has ended with my continuing use of a ventilator to breathe it is sometimes hard to separate my social experience of disability, the essential bodily experiences of my neuromuscular disease and the impairments it has caused, and the slightly different quality of having an illness or deteriorating condition that does definitely cause suffering. Exploring this has led me to write much more personally here in the last year.

One can be severely impaired, conscious of it all and not feel in need of special kindness from other people, though, of course, general kindness is appreciated. That was the position I typically felt myself in when I began this blog and it is how I feel most often now on a daily basis, though it would be true to say I experience more pain, hardship and fear than I have before in my life. My health and upkeep are much more complicated than they've ever been before and won't ever improve significantly.

My parents and most of my extended family are church-going Christians who probably cannot separate their lifelong relationships with their rural communities from their membership in a church congregation. Through them, I've been offered spiritual support from their communities, to which I don't really belong. While I was in hospital, I cherished visits from my parents' pastor and the rehab institution's chaplain, mainly for the focused attention to my spirit and emotions without familial baggage. But I also specifically appreciated prayers, though try as I might, I cannot fully connect with the religious purpose of them. Because I needed the emotional support so desperately for a time, I found myself able to translate other's prayers into what I could use -- loving thoughts and positive energy.

So I don't participate religiously anywhere and feel unable to explore my spirituality in public religious settings because of the "special needs" status so often afforded disability. If there were a Unitarian congregation anywhere remotely near my home, there's a chance I could work something out, but I live in a conservative rural area and there is no thoroughly liberal church available to lessen the overall dissonance and make me feel welcome enough to belong. Maybe that's optimistic or wishful thinking about Unitarians. I had mostly good experiences with a congregation in Arizona when I visited it, though it seemed less challenging mainly because I was able to attend with openly lesbian friends. Acceptance of all kinds of difference is spiritually connected -- this I know.

Hugo Schwyzer, blogging about his friend Chris' post and his own religious beliefs writes:

Do I pray for non-Christians? Sure I do. Do I tell them about it, as if I’ve done them a special favor and tucked the spiritual equivalent of a $20 bill in their purse when they weren’t looking? No, I don’t.

He describes how he sometimes carefully parses his words to convey his loving thoughts to people in ways that don't distract by imposing his religious beliefs. I'm much more uncertain about my relationship to prayer, yet less careful of what I say to others going through difficult times. Ironically, that's a reflection of my ambivalence rather than any form of religious certainty. I certainly don't push any particular religious doctrine (since I don't have one) but to me it feels more like using a French phrase in a sentence -- if infrequent and unpretentious, only a little cultural conversion is required. Then again, I also don't offer these good wishes unless I've been told of actual suffering and hardship, as opposed to something I assume.

Doctors involved with Ashley Treatment not as unified in support as previously indicated

From today's Salon.com, Rebecca Clarren reports in "Behind the Pillow Angel" that:

Doctors at the Seattle hospital that operated on a disabled girl to keep her from reaching sexual maturity -- the controversial "Ashley Treatment" -- were more troubled by the procedure than has been reported previously.

While it's not paticularly surprising that some of those on the ethics panel did have and do continue to have misgivings both about the specific case and the broader ramifications of the Ashley Treatment, the details of those misgivings are an important addition to the debate, which has frequently included declarations that the situation must be acceptable because a panel of experts signed off on it.

From the Salon article:

The committee members met Ashley and watched her interact with her parents. They saw her in a wheelchair and how she responded to her father's voice. "We got to see this little girl and see a little slice of what her life was like," Diekema told Salon. "It's very clear that Ashley's life is pretty small, that it's about her family. It's not about running around on the playground or dating. Her life is what a 3-month-old's life is like."

After Ashley and her parents left the room, the committee spent two hours in debate. At the end, no one voted with a show of hands. But in the ensuing discussion, the air was fraught with tension. The committee grappled with the following questions. How does keeping Ashley smaller help her? Does the treatment take away anything important to Ashley's own life?

Dr. Douglas Diekema has been the public face of the Seattle hospital, charged with explaining and defending the medical institution's actions, but statements made by Ashley X's parents on their public blog have apparently characterized the situation -- and the treatment's future for other children -- in ways problematic for hospital and those who were on the ethics panel. Again from the Salon article:

The public omission of the debate within the hospital and at the ethics committee results in part from federal medical laws to protect patient privacy. But because the public has been left unaware of the nuance and complexity of the ethical debate within the hospital, doctors worry that other disabled children could be more easily subjected to the Ashley Treatment. (On their blog, Ashley's parents write: "It is our hope that this treatment becomes well accepted and available to such families.") It was in part this fear of the case setting a precedent that initially spurred doctors at the Seattle hospital to question the surgical procedures.

"There were a number of people who were not very comfortable with the idea, and other people who weren't comfortable with it at all," said John McLaughlin, director of the neurodevelopmental program at the hospital. "In the end, the parents' articulate and assertive approach to wanting this done is what carried the day for that one child. However, most of us have major reservations about it for anyone else. My bottom line is that this is one more example of well-intended, but poorly thought-through treatment of kids with disabilities."

Put more succinctly, as her guardians, the hospital gave the final authority to Ashley's parents because they didn't have better medical solutions than the growth attenuation that was proposed and didn't necessarily believe it was a good idea at all.

Most troubling (and though I've seen it discussed on disability listservs, this article is the first I've seen to note this) has been the lack of candor about the whole procedure, from the actual medical treatments included in the endeavor to improve the child's (parents'?) life to the full process of the ethics committee:

What also has Merkens and other doctors and bioethicists worried is that key details of the case have been kept hidden. The article on the Ashley Treatment in the Archives of Pediatrics and Adolescent Medicine left out several critical details. The authors wrote that Ashley had begun her growth spurt but omitted what percentage of her final height she had already achieved. If she had already reached 85 percent of her final height, the hormones may only have saved her an inch or two, said Dr. Robert Nickel, a developmental pediatrician at the Oregon Health and Science University in Portland. "The real question is: Is there any benefit to this treatment?" said Nickel. "I would have counseled them to wait, to sit back and see what happens over a year because this child might accomplish most of this on her own."

The article also never mentions the breast-bud removal, ostensibly the most contentious element of the Ashley Treatment. (The parents' blog provided that piece of the story.) Taken as a whole, the Ashley Treatment may appear more beneficial than it really is, said Dr. Christopher Feudtner, a pediatrician and bioethicist at the University of Pennsylvania. That's troubling because the treatment, he said, "is prone to abuse."

"We're manipulating her body so that she can fit in better to society, while neglecting the inner manifestations of pain, and that's a radical extension [of current medical philosophy]," Feudtner added. "Some child, somewhere, with much less severe mental disability than Ashley, will get this treatment. It will happen and there needs to be more people standing up and saying this will have side effects we didn't anticipate."

On the ethics panel (italics mine):

Again, the lack of detail about the discussion inside the Seattle hospital has medical observers concerned. "If we don't know exactly the reasoning and the debate that took place formulating that position, there's no way to understand how [the ethics committee and doctors] thought it through," said Feudtner. "It would be analogous to a judge rendering a verdict with no published ruling. This lack of an auditable record leaves any internal dissension or debate squelched from view, leaving the sense this was an easy decision for the committee to make, when that may not have been the case."

The presence of bioethics panels or consultants at other hospitals offers Feudtner little comfort. Medical bioethics is a relatively new field. While nearly all hospitals now have some kind of ethics board or consultant, 72 percent have no process to evaluate themselves, according to a report to be released later this month by the American Journal of Bioethics. There are no national standards or guidelines for ethics committees to follow. There are no standard ethics committee guidelines that aim to address the prejudices and preconceptions, even very subtle biases, of its members. Less than half of all people who conduct ethics consultation have had any formal training.

Also, the article reports that the Seattle hospital alone has had inquiries from three other families asking this "treatment" since the story went public.This puts the hospital and it's ethics panel in rather a quandry, I'd think, since the original news Dr. Diekema gave was that the procedure made perfect sense and was agreed to be beneficial by all involved.

Like a sieve, only not so much

I had that ABG draw this morning, as scheduled, to determine if recent dizziness is caused by my ventilator settings or something else. That went well. An RT I'm acquainted with did it cautiously but easily and with very minimal pain. It had to be done by her in the local hospital rather than the adjoining clinic because, well, I don't know. Fear of arteries, I guess. But it was good to see her (except for the "aww, look at poor you on the vent" part) and tell her I've felt very healthy and appropriately-oxygenated or whatever since I got the hole in my neck and all.

For reasons possibly due to Gimp Compound breakdowns in communication, I also had an appointment for a regular blood draw to examine my levels of potassium, magnesium, and other yummy -esiums that were dangerously low a year ago. They were checked six weeks ago and I've been choking down lots of bananas and potatoes and other starchy colorless joys since then because those levels were only borderline acceptable. If French fries qualified as hot and greasy little mediums for the -esiums, this dietary addendum would be more fun. If I ever did get a thrill from a banana, that joy was killed last year when I was eating two each day for months to get the potassium up.

The ABG was what I really thought I needed, but I went along with this extra blood draw because, well, when six people are involved with arranging your clinic visit and you wish to live in harmony amongst them, what's a little poke with a needle. And maybe I could ease off on the bananas if all went especially well, right?

Things looked worrisome when the clinic receptionist said, "Hmm, this appointment was for yesterday. Have a seat in the central waiting room and we'll see what we can do." See what I mean about harmony at the Gimp Compound? Which of us screwed that up? Shhh, never mind.

I didn't wait long to see the Woman-Masquerading-as-a-Phlebotomist. I spent that time listening to the sick dull ache of my right inside wrist. Those nerves around arteries know how to discourage activity in their territory. I knew it wouldn't last too long, but it's a uniquely-flavored pain. I once had an RT take an ABG without me feeling the stick at all, which shouldn't be physically possible, but I enjoy contemplating the perversity and competence of that moment from time to time.

When called upon in the clinic waiting room, I did everything I could for the WMAAP. I told her past successes in springing healthy leaks in me usually involved the "butterfly needle," tiny enough to match my little veins. I sent her confidence vibes. I sat calmly while she dug around in the crook of my left elbow, the edge of my left wrist, and had a friend dig around the top of my right hand.

Then she pronounced me too dehydrated to bleed and told me to go away and come again another day.

No, really.

In the many hundreds of blood draws I've had in 38 years -- including some very unpleasant situations when I was actually sick and dehydrated -- individuals have sweated, apologized and passed the needle off to colleagues, but no one has ever told me it was not possible to make me bleed.

"You have no available blood today. Sorry. Go home."

Actually, since I had gotten the ABG I believed was important, and we had reached the limits of my commitment to family harmony, I was prepared to tell them to back away with their needles anyway. But still.

The pain from the ABG has abated almost entirely now and there's just the most minute sensation in the nerves to remind me that anything happened there at all. The other needle holes in my hands and arms hurt and are bruised blue. I did get results of my ABG and though I haven't yet talked to my primary, apparently the numbers look good.

I wish I'd had the chance to see my doctor's face when all this occurred with the WMAAP. She sometimes surprises me with hilarious breaks from her stoic, thoughtful professionalism, and I'd like to have seen which way it would go today. And who she would have found to get the job done, because she would have found someone or elected herself.

In the meantime, more bananas.

Death of 14-year-old only tip of the iceberg of abuse

From the Atlanta Journal-Constitution, "A Hidden Shame: Death and Danger in Georgia's Mental Hospitals":

Alone in the darkness of a state mental hospital, Sarah Crider, 14, lay slowly dying.

She complained of stomach pain at 4:30 p.m. She vomited about 8:30. When the only physician on call at Georgia Regional Hospital/Atlanta came at 9:20, Sarah had vomited again, but the doctor did not examine her, medical records suggest. She threw up around midnight and once more about 2 a.m., this time a bloody substance that resembled coffee grounds. But hospital workers did not enter Sarah's room again until 6:15 a.m. By then, it was too late.

A few hours later, two hospital employees drove to Cobb County to tell Joyce Dobson, Sarah's grandmother. Dobson adored Sarah for all her complexities: artistic but troubled, challenging but comic. Now she could think only of two nights earlier, when she had last visited Sarah and heard another patient's haunting scream.

I hope nobody killed her, Dobson blurted out.

In fact, what happened to Sarah was beyond anything Dobson could have imagined.

Read the rest.

Friday at the Gimp Compound or Dizzying up the Girl

So, about ten days ago, my trach's cuff burst. In my throat, in the middle of the night. And just for fun, this happened when I was just coming down with a virus of some sort and happened to be sitting on the toilet. I was with a new nurse -- new to me and new to the profession, so she'd never seen a trach switch before. And my Mom had never done one, but we woke her up for the opportunity. Dad was there too -- it was an exciting event for us all.

But it went very well. When I'd last had a scheduled Parts Replacement Event, I'd asked the doctor to show both my mother and the nurse present how to do it. We were mostly prepared. We only lacked sterile lubrication to make it easy to slide the new one in. But in the excitement, we didn't pay the usual attention to the exact amount of water to fill my cuff comfortably with.* And we didn't adjust the strap around my neck just right -- because I have a scrawny neck, the trach can be shoved in too far so that it curves against the back wall of my windpipe and the opening is curved up against the front of my windpipe, which both hurts and impedes delivery of air.

What with the virus and this trach switch requiring fine-tuning for optimum breathing and comfort, I've been pretty dizzy the last ten days. Oh, and I've just finished weaning off the Effexor Dr. Perky placed me on in rehab, so that might be contributing to my dizziness too.

I've got an appointment for a blood gas** next week and I've spent part of today with the cuff filled beyond speaking-capability in order to better approximate the exact settings I used in the hospital, which is when I was last monitored by RTs and a pulmonologist. I've been the vent expert in my life since I came home with the machine last March.*** Ironically, state-paid home health care for a vent user requires hired nurses, but nurses are not trained in the specialty of vent management unless they get special training to be ICU nurses or the like. Nurses also are not typically allowed to do trach change procedures, though obviously it is necessary that they be prepared to step up in a setting like mine if I need one in an emergency.

Respiratory therapists get training on ventilators, what the settings all mean, how they effect a patient, and they learn to do trach changes and take blood gases (and do the lab work) as part of their routine in a rehab hospital like I was at. I very much enjoy the individual women who are employed as nurses for me, but geez. The rules don't quite fit the purpose and I need an expert just now.

Oh, and there's a new nurse coming to work here tonight. I don't know if she's ever done suction, worked with a vent, or what. So finding that out is my job tonight. I'm dizzy and tired and fed up with these regulations that don't really give me the full expertise they claim they do.

______________________________________________

* The cuff is the inflatable part of a trach that puffs up in the windpipe to ensure that the air going in the tube gets to my lungs and doesn't go upward and out my mouth and nose instead. The trach I currently use, a Bivona TTS, inflates the cuff with sterile water instead of air, which other kinds of trachs use. So when it burst, I immediately got about 7 or 8 ccs of water in my lungs in addition to not getting the vent air where I needed it. And we added about 5 ccs more before being certain the cuff was blown.

The photo above is the Bivona TightToShaft trach kit, which includes the trach itself (top left), the obdurator (shaped in a gentle curve like the trach, it's hard plastic that fits inside the trach tube to help with insertion), and the wedge or "tooth" (top right, used to unhook the installed trach from the vent tubes for suction or getting on clothing). The red cap to seal off neck breathing while leaving the trach installed and cheapo trach tie I do not use but both are also in the picture above. You can't really see the cuff, but it looks just like a little condom on the end of the naked trach. The tiny photo inset shows the cuff inflated.

** A blood gas (or arterial blood gas, ABG) is a blood draw taken from an artery in order to measure oxygen, carbon dioxide and other stuff. In this case, it helps determine if my ventilator settings are giving me too little or too much air.

*** When I say that I am the vent expert in my life, I mean that I know more than any person who comes in contact with me -- including the dude from the medical supply company who is supposed to come monthly and do a maintenance check on my machines. I know what the codes are for the various alarms when they go off, I know what the settings of frequency, sensitivity, tidal volume, expired tidal volume, PIP, PEEP, MAP, etc. all mean generally and in terms of what I suposedly need. I know how to cancel the alarm and change settings depending on if I am getting sufficient air, which varies according to how full the trach cuff is. I know that a high pressure alarm usually means there is condensation in the sensor tubes and I know the ways to fix that. I'm happy and proud I have learned all this in the past year, and it was my responsibility to do so, but given that I am required to have nurses in my presence constantly in order to receive state aid for home care, I am not thrilled that I know more than every single professional around me and that their nursing training does not mean they bring the actual vent machine expertise to the job.

Saturday Slumgullion #22 -- Best of 2006

This is the last slumgullion of 2006, and like Hugo Schwyzer, I've gathered a list of what I feel like are my best posts of the year. They aren't the ones that created the most discussion, by any means -- and in any case, whatever controversy I managed to create occurred when I crossposted over at Alas. The top five posts listed below seem to all be fairly personal accounts of my disability experience. Make what you will of the fact that I am proudest of them.

Also, go ahead and look over your own blogging of the past year and either leave a link to your "best of" list, or put the list in the comments here as part of my last slumgullion. Disability isn't a topic requirement.

August 13: Until every single penny is gone

September 4: The joys of impairment

September 25: "Is your life hard or super-hard?"

November 6: My déjà vu

December 7: Last year

Don't expect any original content on my blog here for at least a week.

Happy New Year!

This week at the Gimp Compound

It's been busy around here. On Monday I spent time with four new nurses who will be helping me out. It's been hard for the home health care agency to find them and my parents have spent about four sleepless nights per week for the past two months taking care of me because of the shortage in medical professionals required for state funding of assistance to a vent user. (How's that for a confusing run-on sentence?)

Two of these nurses I met a couple weeks ago and they worked actual shifts where we were adjusting to each other and they were still learning the routine. The other two nurses dropped by for the first time ever, and one of them shadowed another nurse around the house for a couple hours to start learning what the job entails. These new people were in my house and watching me or caring for me in every daily situation from 8 a.m. until about midnight, which was mentally exhausting even though they all seem like competent women who will eventually fit right in.

Tuesday I had a doctor's appointment that consisted partly of getting my primary's script for various things I having the nurses do or not do that need to be medically official. This too, is to satisfy all the state departments and supply and insurance companies that insist on being up in my life. This is the price I pay for not being able to afford severe disability myself.

I did also get weighed, which requires some sort of equipment that accommodates a person who cannot stand. (A chair with a scale attached isn't a complicated idea, but most clinics don't have one so I have to visit the ICU and lay on a hospital bed with a scale built in.) Good, good news there, and I'll write on that separately.

Wednesday I went shopping for the first time since I was sick well over a year ago! Long before I went into the hospital I was ill enough to not go anywhere for fun, so this was a big, fun deal. Yeah, I've been to Target a few times since coming home, always after local doctor's appointments. And I have eaten out and browsed a few places during trips to the Twin Cities for parts replacements events. But I haven't gone anywhere just for the fun of it since 2005. So Wednesday was fantastic!

I went with my sister and a nurse I've employed since I came home last March, and I learned something new about myself during the course of the day. Since I first became visibly disabled around about age twelve, I've always been hyper-aware of disability as a public spectacle and performance. That is, I've always known people are curious and watch, and until now I've never shaken the self-consciousness that is part of the invasiveness of physical difference.

Now, apparently, I no longer give a damn. I'm more visibly interesting than ever, of course, with the puffing vent and tubes coming out of my neck, and I still have to manage interactions caused by public curiosity, but I don't feel vulnerable to other people's gaze in the way I always have. I'll probably write more on this as I think it through.

While at a bookstore (!) looking at a table of fiction, I turned and found a man standing right next to me. Caught staring, he was quick: "I was just admiring your chair," he said.

My chair is hardly the most interesting thing about me, as noted above, but I thanked him and edged my scooter forward a bit. From behind me now, he asked some weird technical question that proved he is probably a medical professional of some sort and was likely admiring my small laptop-sized vent, which even the highly-skilled respiratory therapists at my rehab hospital don't normally get to play with in the vent-users wing where they work. It was surely professional curiosity, and he asked something about whether it provided "oxygenation blah-blah-blah."

He was behind me and I simply shook my head and that was the end of it. But I was thinking, "Dude! I'm in a bookstore for the first time in forever! Look! A new print edition of Pride and Prejudice! Gabriel Garcia Marquez has a new book out! Let me fondle and feel the joy!"

Lunch was T.G.I.Friday's because I wanted a massive menu of cheesy or spicy or breaded and bad-for-me foods. Curiosity at the restaurant too. Did I imagine a couple people pondering for the first time how a woman with a hole in her neck at the next table would affect their appetite? I don't think so, but the difference is I didn't care.

Have I mentioned that I've been speaking now for about two months? The quality of my voice varies but I am able to leave the trach cuff loose enough that I have the constant capability and almost never write notes to communicate anymore. Out shopping, talking, eating -- a tremendously big deal.

Meanwhile, the past two nights have been spent with a hesitant new nurse, so I've felt "on the job" even while sleeping, and I'm pretty tired. But it's been a good, busy week.

I completely missed out on the latest Disability Carnival which is up today over at Planet of the Blind. Stephen and Connie have done a fabulous job and I can't wait to visit all the links.


For those who need the description: The photo above is of my portable vent where it is mounted on the front of my scooter, with the control box of my scooter in the foreground since the picture is taken from my point of view. Hanging from the handlebars is an ugly but functional homemade bracelet that holds the wedge for getting the circuit (vent tubes) disconnected from my trach for suctioning or getting dressed. The wedge looks like a large flat white forked-shaped tooth and because my sister and I are nerds and love the movie Dune, we call it "the tooth! the tooth!."