Health care and non-compete agreements

Two years ago this week I got caught up in a legal dispute that briefly threatened my life. Obviously, I'm still alive, but a version of what happened to me could happen to anyone who consumes health care in America, so I figure people should know a little about it.

First, a little background on me: Because I have a sort of muscular dystrophy that weakens my diaphragm muscles, I've used a trach and ventilator to breathe for the past six years. Generally, lungs react to this artificial breathing set-up by making secretions that must be suctioned out of the lungs several times each day by a trained assistant using sterile gloves, a sterile catheter and a suction machine. I have 24-hour home care assistance for this and other help I need. But the most important thing my nurses do is to keep me breathing, put the circuit tubes between my trach and my vent back together if they fall apart, troubleshoot vent alarms and keep me from drowning in my own secretions. Life is better than you might think, but I have to have this care to keep breathing.

So. This dispute between the business partners of my vent-specializing home health care agency eventually led to my choosing the management of one set of partners over another, and that's when their legal dispute began to directly involve me. At that time my nurses all worked only with me within the agency. And I'm the only vent client my metro-area-based agency has had in my small town 60 miles outside of the Twin Cities. So my nurses followed the job and switched agencies with me in order to keep getting a paycheck. The agency I departed sued all my home care nurses for breach of a non-compete agreement (NCA). They also sought a temporary restraining order (TRO) to keep all my nurses from showing up at my house to work and, you know, keep me breathing.

Are you familiar with non-compete agreements? They are contracts between an employer and employee that restricts what the employee can do after they leave the employer for a different job. It's meant to protect an employer's business, client list, company secrets, etc. It requires the employer provide the employee "reasonable compensation" and typically restricts competing work within a geographical area for a set time.

It used to be that NCAs were mostly just for tech companies protecting research and development secrets, but increasingly these agreements are used by all kinds of businesses now, including for-profit health care businesses. What this means for ANY health care consumer is this: in the terms of an NCA all clients/patients are considered business assets. If your health care provider -- primary care physician, psychiatrist, obstetrician, oncologist, surgeon, dentist, etc. -- is suddenly barred from having you as a client because they change partnerships/clinics/employers and there's an NCA, you have no legal standing in a dispute between employer and employee. (Your provider could also suddenly lack access to your medical records, by the way -- one of many reasons you should always have copies of the most vital aspects of your medical history.) Need some sort of life-saving medical care and want the professional who knows your case? Your individual preference to stay with that medical professional likely will be no part of the legal discussion about financial harm to the employer and the livelihood of the employee.

An exception is if the legal discussion includes consideration of the "public welfare". For example, if the medical specialty of the employee in question is rare in your geographical area, an NCA may be disallowed or limited in scope to protect the public welfare. And some states disallow NCAs involving all physicians. But the "private welfare" of one individual client/patient is not "the public welfare" and your right as an individual to choose your health care provider may not be considered.

State policies vary wildly. All employment NCAs in California and North Dakota are disallowed. Florida very seriously favors employers over employees. Colorado, Delaware, Illinois and Kentucky disallow NCAs for all physicians, Tennessee and Texas protect some physicians, New Jersey disallows NCAs for psychologists, and Massachusetts disallows for physicians, nurses, psychologists and social workers.

I'm in Minnesota and my nurses being sued as third-party defendants for violation of their NCAs was considered by the court a viable part of a big messy case. I have a lot I could say about that messy case that complicated the lives of hard working people just trying to make a modest living by giving me knowledgeable and competent health care, but I'll try and stick to the topic of NCAs and health care here.

In my situation, I wrote an affidavit to the court about how my life would be endangered by the temporary restraining order (I needed both a lawyer and a notary public for that.) Then I showed up in court for the hearing when the TRO was being considered, even though -- and I find this both galling and very key to my whole point -- without me present, discussion of the TRO and my life-saving daily care would have gone on without me. Remember, as neither plaintiff or defendant in this case I had no legal right to participate. Although I'd like to believe the judge wouldn't have ruled on a TRO that interfered with life-saving medical care, I suspect it was my presence in the courtroom that day (with my vent huffing and puffing loudly) that got my former agency to immediately withdraw the request for the TRO. I do not know for sure if the judge ever read my affidavit.

After months and months, the full case settled and the question of the NCAs and their validity was never ruled on. There's a Minnesota Home Care Bill of Rights (MN statutes, section 144a.44.) that states that any client has "The right to choose freely among available providers and to change providers after services have begun, within limits of health insurance, medical assistance, or other health programs." The conflict between that statute and an NCA was likewise not adjudicated or even debated at the court dates I attended. In any case, those matters would have been addressed long after the TRO, if the TRO request hadn't been withdrawn.

Things might have turned out differently. I might not have had a nurse who showed me the complaint she was served. I might have been unable to read it and understand the immediate threat of the TRO. I might not have had access to a lawyer for the affidavit, or a ride to the courthouse to attend the day the TRO was brought before the judge. I might not have had such loyal, brave nurses who stuck with me through months of threats of financial penalties to each of them. I might not have had such an excellent home care agency to choose as I currently have and been stuck under the management of the agency that aimed these troubles at my nurses and me. But because consumers of health care are basically the collateral damage of NCAs, you don't hear many stories like mine.

In fact, Googling "non-compete and health care" offers mostly lawyers selling their expertise and almost nothing about the clients every enforced NCA against a health care provider must displace. There are a few cautionary tales besides mine, however.

In May 2010, Madeleine Baran of Minnesota Public Radio reported on the story of Nadine Parker and her two daughters. The eight- and ten-year-old girls had been seeing a mental health professional for about a year and were finally experiencing some progress with troubles including bedwetting and self-injury when an NCA came between them and the one counselor they had developed trust in. The only current remedy in Minnesota for these children's traumatic loss of support appears to be litigation.

[Mental health] advocates also said that the situation serves as a valuable lesson for mental health consumers. Many clients, they said, have no idea that their therapist, case manager or other provider would not be able to see them if the provider switched to a new agency.

"Realistically, the average client is not going to be thinking that far ahead," [Frederic] Reamer, [a national expert on social work ethics and one of the chief authors of the code of ethics for the National Association of Social Workers] said. "It's usually, 'I'm depressed. I need help. Can you help me?' [Not] 'Oh, by the way, do you work in a place that has a non-compete?'"

In the 2006 Kansas case Caring Hearts v. Hobley and Hardy, the appellate court upheld the original ruling in favor of the employer and against the defendant home care nurses. In reviewing the issue of "the public welfare" the appellate court stated (italics mine) that "there is no evidence that public welfare would be harmed by enforcement of the agreements. Hobley and Hardy did not present evidence at trial that the desires of any of their former patients would be thwarted if an injunction were issued and they were denied care that they specifically desired to receive from Hobley and Hardy. But even if there were such evidence, the issue is public welfare, not the private welfare of an individual patient."

Does the court imagine that the elderly clients do not care who provides their health care? The court doesn't consider it relevant.

So, how to avoid losing your oncologist halfway through your chemo treatments? How to keep the social worker your mentally troubled child is getting support from? How to hang on to the primary care physician who has seen you through the birth of all your children? There aren't any great answers unless you live in a state that has a statute disallowing NCAs.

But here's my list of things you can do to protect yourself as much as possible:

Ask your health care provider if they are bound by a non-compete agreement.
Ask if they have any plans to leave the business where they are currently employed.
If possible, choose a provider not bound by any NCA.
Repeat this process if and when you add any new health care provider to your life.
Repeat this process if and when your health care needs become more extensive or dire and continuity of care becomes more vital to your health.
Talk to your elected officials about protecting patient continuity of care by limiting or disallowing NCAs for medical professionals in your state.



Other stuff to know about NCAs:

The American Medical Association believes "restrictive covenants" to be unethical:

Covenants-not-to-compete restrict competition, disrupt continuity of care, and potentially deprive the public of medical services. The Council on Ethical and Judicial Affairs discourages any agreement which restricts the right of a physician to practice medicine for a specified period of time or in a specified area upon termination of an employment, partnership, or corporate agreement. Restrictive covenants are unethical if they are excessive in geographic scope or duration in the circumstances presented, or if they fail to make reasonable accommodation of patients’ choice of physician. (AMA Code of Medical Ethics, Opinion 9.02)

A physician in internal medicine in rural Idaho where doctors are scarce writes about taking a two-year sabbatical as the only reasonable way she can find to escape an NCA.

An academic paper on how NCAs affect the labor market for physicians. (If the math scares you, skip to page 27 for the research conclusions.) Spoiler: States most supportive of NCAs have fewer docs per capita.

In 2005, the Tennessee Supreme Court ruled that NCAs for physicians were against public policy and unenforceable. In response, the state legislature has repeatedly tinkered with statutes mostly having the effect of overruling that court decision and allowing NCAs for most physicians.

One researcher finds that NCAs often derail careers.

For a good primer on NCAs read the paper "The Law and Policy of Non-Compete Clauses in the United States and Their Implications" by University of Illinois professors Jay P. Kesan and Carol M. Hayes.

Hiya gawkers!

Yesterday I went to Great Clips to get my hair cut. The hairdresser I've had for the past year got a job at the local bank around Christmas, so I've been badly in need of a trim. But I was also very conscious that in the two years I've had a trach and used a vent I have never gone anywhere "cold" and required a non-medical person to, well, touch me.

Knowing how weird people can be about wheelchair users, I expected a wheelchair user with a trach and vent would make the experience even more of an adventure. I was so right. The level of gawking -- outright staring -- from people less than five feet from me far surpassed anything I've experienced in my 25 years of being visibly disabled.

People stare all the time, right? Three women, close enough for me to reach out and kick them, sat or stood with their jaws hanging down as they stared. And stared. For several very long minutes. It may have been much longer. I had to look away from the rudeness.

I've felt comfortable challenging that in the past, at the very least with a pointed look back, but this time I found myself unprepared and struck silent. I looked back and found absolutely no recognition that they were looking at fellow human being. They stared like I was an alien or three-headed dog. My nurse, a smart outspoken woman, was stunned into silence too.

Then I got busy with what I came there for and the calm business manner of the woman who shampooed and cut my hair. But I felt the Othering shame of those stares in a way I haven't for a couple decades. And here I thought I had this worked out. Damn.

Disabled in Gaza

From a Reuters report:

By Nidal al-Mughrabi

Reuters - Monday, January 21 02:02 pm

JABALYA, Gaza (Reuters) - Ready to act fast to save his life, Maher Al-Assali's young siblings stand at his bedside, poised to pump air through a hole in the 12-year-old's neck when the ventilator that keeps him alive cuts out.

Since being paralysed in a car accident seven years ago, Assali has depended on a mechanical ventilator to supply his lungs with oxygen. During the electricity blackouts that have plagued the impoverished territory for months, his family used to hook the machine up to a generator at a nearby clinic.

But Israel has cut fuel supplies to Hamas-run Gaza as part of sanctions it says are meant to stop militants firing rockets across the border. The clinic generator has shut down. So now, when the power grid fails, Assali's family keep him alive with a rubber hand pump.

"I am afraid," said the boy in a voice that was barely audible. "I could suffocate while asleep if the electricity suddenly goes off, I am afraid to die."

Gaza City plunged into darkness on Sunday night when the enclave's only power station shut down after Israel closed the borders and cut fuel supplies. The Jewish state has vowed to keep up the restrictions until militants stop firing rockets.

The plant supplies about 30 percent of the Gaza Strip's electricity but almost all power to the main city, where about half the territory's 1.5 million people live. The European Union and United Nations have urged Israel to lift the blockade.

The residents of Jabalya in northern Gaza still have some electricity but Assali's father said power usually cuts out several times during the day and night.

Hamas Islamists who refuse to renounce violence and recognise Israel seized control of Gaza after routing Palestinian President Mahmoud Abbas's Fatah forces in June.

Since then, Israel has opened U.S.-backed peace talks with Abbas but has shunned Hamas and isolated the Gaza Strip.

Clinics and hospitals in Gaza halted all but the most urgent surgery on Sunday for lack of power, and thousands of factors have stopped work. Shoppers have been stockpiling food.

Khaled Radi, spokesman for the Hamas-run ministry of interior, said hundreds of sick patients were at risk because there was no fuel to power generators. He said vaccines for children may soon go off because they cannot be kept cold.

Assali's family say they try to keep someone at his bedside at all times in case the
power cuts out. His eight brothers and sisters and even his cousins help out.

"I'm giving him some oxygen," said his 13-year-old brother Udai as he squeezed the rubber pump in his fist. "I don't want him to die."

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.

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*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.

Lately, at the Compound

I love unpredictability in my friends. People who say or do things it wouldn't immediately occur to me to say or do either intrigue or frighten me. Those who do not frighten me I often want as friends, and I've had some success in getting what I want in that regard.

In the past two years, I've learned that unpredictability is just about the last thing I want in the people who help me daily with personal care, trach health, vent upkeep, etc. I have 24-hour nursing assistance (the "nurse" part being required for state financing of assistance because I use a vent), and other than reliability and competence, predictability is what I crave most in my assistance. When someone is fluttering around me helping with suction or hygiene or other stuff that directly affects my person, the last thing I want is to be watching them and thinking "Now, what the hell are they doing with that?" Predictability requires less mental energy than astonishment or confusion and the less energy I expend with my assistants, the more I have for the rest of my life. And while predictability has been a little elusive at the Gimp Compound lately, it's not my biggest challenge.

It's been my biggest challenge these past two years to adjust to always always having someone present to assist me and keep me breathing. I don't go for strolls around the neighborhood alone, I don't stay home on my own for even ten minutes and I don't wander around the mall by myself. That's new these past two years. I'm a person who has always enjoyed being alone. I like my own company.

The idea behind this constant assistance is that my vent circuit could pop apart (as it does now and then) and no one wants to be responsible for my accidental death from lack of air and suffocation. I can breathe a little bit on my own, and in certain circumstances I can put my circuit back together again, but not so easily that it's a sure thing. So, the trade-off is that I get more supervision than your average toddler.

Having someone always waiting in the wings to assist is not nearly the luxury you might imagine it to be. Intimate discussions are weird with someone close at hand. Lively political debate at dinner always seems peculiar when a silent (and generally professional and discrete) presence sits in the next room. And, in fact, on days when the household has indulged in a big pot of chili it can be downright stifling to family entertainment.

Constant personal assistance is a serious challenge to privacy and personal autonomy, and I've learned a lot about myself and other people while trying to negotiate the space I need. My mp3 player is a key part of my "leave me alone" strategy. So is closing my eyes and pretending to sleep. If you can't escape people -- or even leave the room -- you sometimes must simply shut them out.

I first learned that two years ago while in hospital. If you can't walk away and someone is invading your space: be unapologetically rude. Ignore them. Wave them imperiously away. All young women should be taught this early. I can't believe it took a dire health crisis at age 38 to experience the freedom of blowing someone off when they're in your face and won't go away. Nice Minnesota girls just don't get that memo in their ordinary lives.

Predictability and privacy are linked. To be able to have assistance always around but not intrusive requires that assistance knows what to do without constant negotiation or discussion complicating the day. Home health care provides at least the hope of achieving that in ways inmates of nursing homes can almost never expect. No doubt those who do this care appreciate consistency too, since mistakes happen more easily in unfamiliar situations.

This is where my mental energy has been these past several months when I've been blogging much less. I've switched home health care agencies, said goodbye to four nurses, met and trained three nurses, and some other stuff I'll write about soon. I'm hoping to get back to writing more here this month, and I've joined up for NationalBlogPostingMonth to encourage myself.

Image description: The black-and-white photograph above is the upper back of a man with a tribal art tattoo across the shoulders and the following "tattooed" just below: "NaBloPoMo '07 Blog Free or Die" with a little skull image after the "'07".

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.

3 perks to using a ventilator

Yes, perks.

1. Sleeping with your head under the covers while still getting very fresh air.

2. No histamine buzz in the nose from allergies since inhaling doesn't happen up there.

3. And one I learned today: Sometimes, when the vent alarm sounds, a male cardinal sitting outside at the nearby birdbath will cock his head and answer back. "Beep! Chirp! Beep! Chirp! Beep! Chirp! Beep! Chirp! Beep! Chirp!"

Overdue bill threatens life support

From The Flint Journal in Flint, Michigan:

Bedridden with a chronic lung disease, Patricia Alsteen depends on machines to help her breathe.

But the mother of four said she's worried that her electricity will be shut off because she can't pay a sizable power bill that accrued, in part, because of her life-support equipment.

For weeks, Consumers Energy Co. has been threatening to shut off her services, she said.

"I understand I owe them money," said Alsteen, 43. "I would pay it if I had it."

A spokesman said Consumers is holding the account open while she works with agencies that might be able to help with her energy bills.

"We are waiting to hear back from the customer about contact she made with some other agencies, and we're continuing to work with her on a payment plan," said spokesman Terry DeDoes.

Alsteen said she is on Social Security and hasn't been able to work for several years. She has a caregiver and lives with her four children, ages 7-18, and a grandchild, 2.

She's been hospitalized several times over the past year, including once for a bout with pneumonia that nearly killed her, she said.

"Every time I go in the hospital, I have to pay somebody to come and take care of my children," she said.

During the day, she receives oxygen from a machine through a trachea tube. At night, she is on a ventilator.

Over the winter, Alsteen paid about $230 a month to Consumers under a seasonal billing protection plan, she said. But because she used about twice that amount of energy, a bill of more than $2,000 came due when the plan ended in May, she said.

A recent television news report on her situation drew a couple of donations, including $450 from an Owosso woman who took up her cause and started a fund at Charter One Bank in Owosso.

The benefactor, Jenny Roberts, said the overdue power bill is literally a life-and-death situation for Alsteen.

"When she was crying, I was crying," Roberts said. "She said, 'If they shut off my life support, I'll die.'"

DeDoes said Alsteen didn't need to pay the entire balance.

Consumers granted a 14-day extension for her to pay an agreed-upon sum, then cut the payment to $321, DeDoes said. A church stepped in and covered that bill, he and Alsteen said.

The utility also sent forms on a discounted rate for life-support equipment, along with a list of agencies she might call for help, he said.

Alsteen said she already receives the discounted rate and hasn't been able to find much assistance.

"I called agencies, I called churches - everywhere I could think of or where people told me to call," she said. "None of the agencies had money.

"I feel kind of like a bum asking people for help. I'm not that kind of person."

Consumers planned to speak with Alsteen on Monday to discuss her situation, DeDoes said.

"We encourage customers to call us as soon as they believe they are going to have a problem paying a bill, and not when they receive a shutoff notice," he said.

"That way, we have more time to set up payment plans and work with a customer."

Donations can be sent to The Patricia Alsteen Fund, c/o Jenny Roberts, c/o Charter One, 200 E. Main St., Owosso.

Olmstead Anniversary and the "right to die"

Today, June 22, 2007, is the eighth anniversary of the Supreme Court decision in Olmstead v. LC and EW. LC and EW are Lois Curtis and Elaine Wilson, two women in Georgia who had spent most of their lives in institutions because of disabilities, despite it having been determined that they were each capable of living in a much freer environment. For disabled people, the Olmstead decision is comparable to Brown v. Board of Education in the way it has legally declared that segregation is an unacceptable public policy. And Olmstead was only possible because of the ADA.

Elaine Wilson died in 2004. Here, from The Atlanta Journal-Constitution article published at the time of her death:

In 2000, [U.S. District Court] Judge Shoob accepted a settlement that the state would guarantee the women community-based housing, training programs and employment.

At that hearing, Ms. Wilson testified to Judge Shoob: "When I was in the institution, I felt like I was in a little box and there was no way out."

Of the plaintiffs' testimonies, Judge Shoob said: "I was amazed. They were both so articulate. At a party after the hearing, they gave a talk about how it felt to take care of themselves and what a wonderful life they were leading. I went up on the podium and hugged each one of them. I'd never done that before."

Ms. Wilson had been shunted among institutions and shelters from age 15 and subjected to shock treatment and psychotropic drugs "that knocked her out and ruined her kidneys," said her mother, Jackie Edelstein of Atlanta.

"When I first met Elaine in 1999, it was very hard to see someone with a valuable talent," said Harriet Harris of Lithonia, executive director of Circle of Support Inc., which provided Ms. Wilson with caretakers. "She was very angry and defensive, having spent so many years fighting for survival. Like someone who had been wounded over and over, it was very hard to trust anyone."

Once Ms. Wilson was placed with a caretaker and given independence, her life changed dramatically.

"She blossomed," said Legal Aid attorney Sue Jamieson of Atlanta, who took on the case in 1995. "She took an interest in cooking and church and her personal appearance. She wanted to do advocacy for other people so [she] acquired training in presenting workshops and giving speeches.

"She developed a PowerPoint presentation that described her life. When I heard it, I was extremely moved. I had no idea that Elaine had acquired that level of sophistication. She had exploited her natural skills and abilities to a degree I would never have believed possible. It makes you wonder how many other people like Elaine are out there."

In 2004, on the fifth anniversary of Olmstead, activist Zen Garcia noted:

Olmstead v. LC & EW began as a civil rights case for two women who desired life in the community, but it ended up being a case representing the rights of all people, symbolizing to many of us the decades of legal government segregation and civil rights abuse.

We learned that, at the same time states were fining nursing homes for abuse and neglect, they were giving them bonus for keeping the cost per resident down. This caused an outcry from advocates across the nation.

Since incurring my own disability I had noticed a cycle of misrepresentation that condemned people like myself to nursing home placement. At the time, I was involved with the Georgia Department of Medical Assistance's Long Term Care Advisory Board, and I gave speeches at most of the DMA's Public Outreach Forums, declaring on several occasions that "It is not a lack of money that is the central issue when it comes to long term care, but whether states and corporations have the right to profit at the expense of the people."

Michael Gottesman, a Georgetown University Law Center professor, says it costs less money to provide for mentally disabled people in the community than in an institution. "The evidence is overwhelming in that regard," he insists. "It's politics that explains the states' resistance. It's a combination of the employees in these institutions don't want to lose their jobs, the administrators don't want to lose their kingdoms, and there are still lots of folks out in the community who are happy with continuing to lock these people up and keep them out of sight."

And, of course, Georgia is also where, in 1989, quadriplegic Larry McAfee languished in nursing homes and a hospital ICU for so long that he petitioned the courts for the right to die. Mainstream media mostly leapt on the story of a crip who felt he'd be better off dead, but as history professor and disability activist Paul Longmore writes:

He told Joe Shapiro of U.S. News and World Report that the worst thing about his disabillity was that people treated him as though he was "invisible." He told ABC's Nightline: "If you're a citizen or resident of Georgia and you become ventilator-dependent, you'd better be prepared to become an outcast unwanted by the state." His mother said that he was "thrown around like a bag of rotten potatoes that nobody even wants." "You're looked upon as a second-rate citizen," McAfee told Shapiro. "People say, 'You're using my taxes. You don't deserve to be here. You should hurry up and leave.'" "It gets to the point," he said, "where you realize that this is your life, . . . and in my case, it's not worth pursuing."

Yet, while McAfee petition to die was granted, he lives on. Significantly, the granting of his petition stated that permission for McAfee's ventilator to be turned off so that he would die would not be ruled a suicide, but the natural consequences of his paralyzing injuries many years earlier. This is just how deep the "better dead than disabled" idea runs: Allowing McAfee's wish to die through assistance in flipping a switch would've been legally ruled a natural consequence of a car accident.

But it turns out that being freed from the nursing home made McAfee's life worth living again. (Joseph Shapiro's report of McAfee's adventures is well-covered in his book, No Pity, an excellent, concise and readable account of the history of disabled people in the United States.) As for institutionalization and assisted suicide, the general consensus among disabled folks who speak on this is that being treated like a human being does that -- it makes life livable and worthwhile.


Photo description: The picture is by photographer Tom Olin from a recent ADAPT action in Washington, D.C. A black woman wearing a pink t-shirt solemnly holds a bright orange placard that reads "Real People, Real Choice" while dozens of demonstrators are visible behind her.

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.

__________________________________________________

* 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.

Like a lion -- A rant

Last weekend we got 15 inches of snow here at the Gimp Compound. Since I'd managed a successful Parts Replacement Event with my feeding tube just a few days before and had no place I needed to be, a snow day or two was cool with me.

But this week. This week has been more of an on-going adventure. Tuesday, a family member wandered over to the local Menard's and tripped over some poorly-placed lumber, cracking bones in her wrist and knee, spraining an ankle and breaking a toe. Half my nurses -- those who are licensed LPNs attending the local college for their RNs -- are bogged down in what appears to be a departmental failure to provide the needed education. A suddenly-changed school policy requiring they do their online computer homework at the college instead of at their convenience means that one of my nurses has had to cancel a night shift, which means my gimpy relative with the weak bones has two nights per week to try and help me in ways she can't possibly, at the moment.

And the snow plows have given up for now. Visibility is too low. Tonight's nurse made it here over slippery roads. Hopefully tomorrow will see the roads clear. In the meantime, my back-up batteries are ready in case the power goes out. I can last for 16 hours on them, if I need to.

And yet this is not the most distressing news of the week. My medical supply company called today to say that Medicare will not allow them to give me more than 90 trach suction kits per month -- that's three per day, when I always need an average of maybe five, and some days easily nine or ten. Trach suction kits consist of sterile gloves, a sterile container for the sterile water used to lubricate, and a sterile plastic catheter that slips down my windpipe to suction up the lung gunk that bypassing the upper respiratory system triggers my body to make. The catheter is connected to a little vacuum machine that provides the suction. This is the key service my paid help must provide in a sterile format in order to keep me, or anyone with a trach, healthy. Without suction I will literally drown.

And I cannot pay out of pocket for what Medicare will not cover because that would mean I do not need the state to help pay for my nursing help. Have I mentioned that while most all of my nurses have needed to be trained to do this suction (because it is not a basic skill all nurses learn to qualify as nurses), the state nevertheless requires that nurses be provided if it pays for my help? I'm happy with the women who work here -- though we need twice as many of them -- but their required qualifications do not mean they are trained to do what I require. And of course, they cost more to employ than a non-nurse who would have to be trained to suction in the same way. And with the shortage of available nurses, I do not have the staff that I need.

The Medicare rules about three suction kits per day are not new and do not affect only me, of course. As I understand it, I can get some sort of medical waiver through my doctor certifying I need to not drown and must have suction available when I need it instead of just three times per day, rain or shine. Apparently that waiver will be required attached to every sale of every kit beyond the allowed amount for as long as I need them, which will be until I stop breathing, basically. Somewhere there are people paid to look at these waivers all day, in perpetuity. From a listing of these rules:

If Medicare determines there is medical necessity, the standard allowable for the following items are listed below. Medicare may sometimes approve larger quantities, but that decision is made on a month-to-month basis by the individuals reviewing the claims. They may approve larger quantities one month, but disapprove them a different month. For the most consistent reimbursement by Medicare, you may want to consider placing one order per month, staying within the limits listed below.

My orders to the medical supply company are already monthly. I have no idea how complicated getting this waiver and getting permission for the medical supply company to give me extra kits will be (is there a special form? can I get kits on credit in the meantime? will I need to get a doc to sign the form every single month for the remainder of my life?), so it's a lucky thing I have a few extra kits just now. As I said, I cannot buy out-of-pocket what I need to breathe because my state-paid nursing care would be cancelled altogether.

As far as I can tell, this is how it works. You qualify for Medicare, and muddle along until one of the obscure rules bites you in the ass and threatens your life. Then you see what you can do to survive. Or the system fails you.

It's not a matter of wise or difficult funding choices. No one is out there allowing sterile catheters to be shoved down their windpipes willy-nilly, recklessly suctioning when they don't really need cleaner airways. The kits I currently use cost about $5 each, which, let me assure you, is peanuts compared to many other innocuous pieces of plastic that I also require. If I didn't have enough kits, or had to use non-sterile equipment that caused an infection and forced me to go to the hospital, my Medicare would kick in to pay for much more than a few extra measly kits per day.

And I finally saw my pulmonologist yesterday, for the dizziness of seven weeks ago, which has abated almost completely now. I think it was caused by weaning off Dr. Perky's Effexor. I confirmed that I more or less know what I'm doing with the ventilator settings, and a blood gas proved all is well. (A competent RT had absolutely no trouble making me bleed.)

I like this doctor, and we discussed a drug I use in a nebulizer that the pharmacy has insurance reimbursement problems with. The pharmacy will only give me the big bottles of the liquid medication (30 ml as opposed to 4ml bottles), which then expire and must be thrown away before I have used half of each bottle. Half my prescription goes into the garbage because of the size of the vials I'm sold. Then my monthly prescription runs short and the insurance company freaks out because I need more too soon. I will try to wean off that drug, if I can. The doc says that's best anyway, and may be possible. Or switch to mail order drug supply and see if that doesn't work. (Incidentally, this drug -- Mucomyst -- keeps the lung gunk from getting too thick, allowing me to need less suctioning.)

None of this is about insurance or Medicare providing what I medically need or even necessarily saving them money. It's about policies that don't fit individual needs and apparently are not to be budged.

Do not even get me started on the single-use sterile saline bullets sometimes used to dilute thick lung secretions so that suctioning is easier and causes less trauma. Medicare simply states they are not necessary and will not be covered at all. They were used frequently at the first-rate rehab center that taught me what I need to know to keep myself healthy. I have some in a box here, and use one or less per day. Now I learn they are completely unnecessary and the comfort I have noticed from their use is a figment of my imagination.

Gah.

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.

Random Parts Replacement Fun

Ventilator traded in for one which does not randomly turn itself off:

Check.

New ventilator's obscure nonprescription default settings changed (by an adventurous nurse!) to match the other one I have here at the house so that I can use it without getting an immediate headache:

Check.

Trach changed by my mother while the local doctor watches so that she can stop having nightmares about what might have gone wrong during the emergency switch last month:

Check.

Appointment to get my scooter fixed so that it will stop drifting backwards randomly and risking sudden trach/vent tube crisis:

Check.

Plans with a local welder to fix the rack that holds my vent to my scooter so that it will stop threatening to fall off randomly:

Check.

Appointment for routine feeding tube Parts Replacement Event:

Call tomorrow.

Whew.

Once more for 2006

Inclusion Daily Express lists the top disability rights news stories in the U.S. for 2006.

Less obvious stories about disability rights that carry into 2007 are the Medicare Part D drug plan and the war in Iraq.

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.

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.

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* 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.

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!."