Scarier Than Ebola, Worse than Guns

During the couple of weeks that my wife’s body was building up bacteria from a urinary tract infection, we almost had to turn off our regular news shows because all they could talk about was THE EBOLA THREAT.

What was THE EBOLA THREAT? As I’ve written before, it had nothing whatsoever to do with our personal prospects for dying. The only people who contracted it in this country were health care workers who had the misfortune to fall victim to some small flaw in their Personal Protective Environment (PPEs– the space suits) and thereby come into brief contact with the virus.

But what about the one person who did die of ebola in this country? Thomas Eric Duncan came here from an affected nation to fulfill a long-held dream of marriage and family reunification. When his symptoms appeared, he did what he was supposed to do: isolated himself from his family, and then, as his fever rose, went to the hospital, and told them he had just come from Liberia. And what did they do? They gave him some antibiotics and sent him home, with a fever of 103 degrees.

This kept coming back to me as my wife and I struggled home from our first emergency department visit two weekends ago. She, too, had a fever — very rare for her — and she, too, was given antibiotics and sent home. They had watched her for hours for concussion, but she refuted every possible symptom, every hour on the hour. She flexed her feet, pushed back their palms. Most humorously, although she could not correctly tell them what year it was, she could tell them whose names she had checked on her absentee ballot earlier that week. Perhaps the medical staff do not believe Progressive Democrats need to be able to walk, because when they threw us out at 3 a.m., exhausted and frightened, my wife declined to put even one foot on the floor. What was the person thinking who wheeled her out to the car and pretty much lifted her in?

And a few hours later, naturally, she fell again. Well, even if you’re not dizzy from an advanced infection, if you have Huntington’s Disease, falling is something you can plan on. This weekend was different primarily because she could not get herself back up. So we had to call the ambulance, for a second time in 24 hours.

When we arrived, the nurses and doctors greeted us without surprise. They confused us by asking enthusiastically if we had arrived in response to the neurosurgeon’s phone call. What phone call? Come to find out, that when the morning staff came in, they reviewed her brain scans and discovered a pinpoint brain bleed. As we arrived, they were preparing a room to operate on the same brain that a few hours ago someone had ferried back to our 1998 Corolla.

So what really killed Thomas Eric Duncan, depriving his fiancee and their son of the family life of which they long had dreamed? Was it really ebola? Or did he, as my own wife almost did, succumb to hospital error?

This is when it’s great to live in a small place like Burlington, Vermont. The doctors have time to back each other up and catch mistakes. The nurses — like the one who was the first to detect the infection, while doing the unglamorous task of emptying a bedpan — have our doctors’ full respect. Now that we’re home, the visiting nurse evaluator, even the state benefits adjuster, are all familiar to us and with us. All of them wonder why she was dismissed with only one live-in caregiver when the instructions clearly said she required two person transfers. But we’re managing. We had a few scary hours, but the networks overlap and all is well.

This is rare. For too many Americans, there is no safety net at all. Crappy insurance, or none at all, keeps people from seeking medical care until their diagnosis is acute. Probably one thing has led to another, as in our case, so medical teams might catch two tricky things and still miss that third one.

According to the most recent statistics available, as many as 400,000 Americans die each year of hospital errors — both omission and commission, as we say in the religion business. 17,227 die of falls, 129,476 of cardiovascular disease, 36,000 of the flu and its complications. My wife in that Sunday dawn two weeks ago dodged a passel of bullets that drop all too many Americans (not to mention our guests) out of what should be the normal courses of happy lives.

As things calm down here at home, I finally got an hour to sit down and clean out my old phone messages. There, indeed, was the one from the neurosurgeon. A doctor who had the time and institutional support — the political climate — to start his morning by checking whether the overnight crew had missed anything important. Neurosurgeons aren’t cheap. But to everyone who loses a loved one to hospital error — to the grieving family of Thomas Eric Duncan — doctor money is a very small price to pay.

Deep Gym

Huntington’s Disease belongs to a group known as “neuro-degenerative” — meaning parts of the brain are dying — and it belongs, as well, to a group called “movement disorders.” Most people, if they know anything about HD at all, know its strange involuntary motions. Long before the chorea (known to earlier eras as St. Vitus’s Dance). The neuro-degenerative part begins long before that, and aggravates tendencies to anxiety and depression. As it progresses, it eats into executive and administrative functions — often leaving intellect fairly intact. With the decline of speech, locked-in syndrome is looking more and more like a possibility. But as my wife and I close in on her thirteenth year since diagnosis (February 2002), we’ve learned that this disease, like any other, has enemies in the cluster of habits and practices known as physical self-care, mental stimulation, and spiritual discipline.

In particular — now that there is a medication (from Europe, not Big Pharma) — that can help calm the chorea, we make daily, sometimes minute-by-minute use of our lifetimes of sports, yoga, strength-training, and just going out for walks. Deep Gym, let’s call it. Deep Gym started for me as a child, when my mom would get my father off to work, clean up the breakfast dishes, march into the living room and break out her Bonnie Pruden exercise records. There we would all be on the floor, looking at the fold-out book of stretches, sit-ups, push-ups and who knows what else. She took us to the Y for swimming lessons, and my dad drove us into the mountains on weekends for long hikes. In school I was a klutz at games and sports, but healthy activity played a happy part in our family culture. Through the years, I added some light yoga from an old hippie paperback, and kept up occasional visits to the local gyms or Y. Sometimes the repetition bores, because my muscles would prefer a bit more adventure. And then something hurts and I relish the muscular wisdom of Deep Gym.

For my wife, athletics centered her social and spatial life. Basketball, softball, boating, hammers and saws, long walks for watching birds. For a long time, as her disease started cutting into peak activities, she simply scaled down. Bicycles too tippy? Old Spokes Home will make a tricycle. Kayaking too risky? Easy enough to switch to a flat-bottomed row boat. Boating and rolling not possible? Time for a good long walk — or a short one, to the bluff above Lake Champlain, two blocks away. Like mine, her muscles love reaching into their Deep Gym however they can.

Last week, she started falling inexplicably. It turned out not to be Huntington’s Disease, but a urinary tract infection that made her dizzy. (Warning to Boomers — the burning sensation doesn’t happen as often, so the infection might not announce itself until you’re really sick). Once the antibiotics stabilized her chemistry, HD still complicates her recovery. Especially when tired, her muscles and limbs seem to have forgotten such simple tasks as rolling, bending, lifting. For the moment, she has to use a wheelchair, just to be safe in the house. And she’s staying int the house, until her strength and coordination get back to normal.

We’re on our own this weekend. She weighs 129, I weigh 124, so when she slides off a target platform — a seat or bed — I need her to participate in self-levitation. Yesterday, she couldn’t do it. We had to call the fire department for a lift. (This is expensive, and they already took us to the hospital twice last weekend.) Today, when she slid down, we calmed ourselves and I showed her that it would help me if she would do a “squat thrust.” I marveled to have remembered the term. And then I marveled even more, as she watched me demonstrate it once or twice, and then — she followed suit. Deep Gym to the rescue.

Tomorrow, we begin five days of intensive physical and occupational therapy, with who knows how much more to follow. Tiring, but exhilarating. Because I choose to be her main caregiver, it often reminds us of dancing.

Someday, you or someone you love, might find yourself/themselves facing one of the movement disorders — Parkinson’s,, MS, ALS, HD, etc. Perhaps you/they will have a neuro-degenerative. So let our experience encourage you. Keep working on that Deep Gym treasure chest — and someday, it will show up to work for you.

Sometimes Her Huntington’s Disease Shuts Down My Ability to Write

My brain is full of thoughts I’d like to develop into blog posts. Likewise, a fellow historian honored me with a request to provide him with a critical reading of a paper before he presents it next week before our colleagues in Collegium. My sister-in-law-once-removed has just published a book that’s sitting beside my favorite chair…

But last week an unrelated fever weakened my wife and sent her spinning into a series of falls that resulted in a small brain bleed. It stabilized quickly, but we’re settled into a rehab hospital for what looks like two weeks of rehab. Already we’ve had to buy a new bed (it’s been an expensive month for furniture: her falls broke a couple of chairs, too) and she will probably be using a walker again, likely for good. We’ve been  cuddled into a single hospital bed, drawing strength from closeness and love.

But I’m lucky. My inability to focus on writing doesn’t mean my whole world has shrunk. I get to walk around the hospital without supervision — which she does not — and can even jump in my car every afternoon to go home and visit our cat, ferry things back and forth as needed daily. I still luxuriate in the second floor claw foot tub she will never even see again. Caregiving is never as bad as being the person who needs it.

Indigenous Peoples’ Day and Pain Amongst Vermont’s Italian Americans

The weekend had some medical challenges from my wife’s Hungtinton’s Disease, but we did make note of our support for the cities who now use the second Monday in October to honor Indigenous Peoples. We don’t want to slight Italian Americans, and we especially note that here in Burlington,  Vermont, they were the main victims of property theft for “urban development” in the 1950s and 1960s. So our Italian Heritage Society up here has reason to be angry about losing yet another beloved occasion and asset.

Nonetheless, Christopher Columbus would not be the Italian I would uphold. So today, we honored Indigenous Peoples by watching a wonderful documentary called “Reel Injun” about the portrayal of Native Americans in the US film industry. A good ritual a family could easily practice at home, or a discussion group could do at church.

A Fast Fix for the US Government Revolving Door

Just in case you’ve been too busy to look at the 1790 US Census — signed by Thomas Jefferson! — here’s synopsis I’ll be using to make my point. (Citation: Haines, Michael. “Fertility and Mortality in the United States”. EH.Net Encyclopedia, edited by Robert Whaples. March 19, 2008. URL http://eh.net/encyclopedia/fertility-and-mortality-in-the-united-states/)

One fact jumps out: Life expectancy as late as 1850 was less than forty years old, even for white Americans.

What does this mean? The Constitution’s minimum ages for office are shamefully out of keeping with today’s life expectancy. James Madison and his team feared hot-headed youth at the reins of power, just as they feared hot-headed mobs choosing the US Senate or a hot-headed President launching a war. Elevated minimum ages were also a subtle means of imposing a wealth requirement, because what killed a lot of young adult males was accidents involved in making a living. Hunting accidents that turned into gangrene. Blade-related accidents that turned into tetanus. Bad water and unpreserved food that took out the digestive tract. Folks with servants and slaves to run these risks didn’t just have the chance to get an education when young, they had a chance to eat, drink, and make merry during their young adult years without chopping off a foot the next day or succumbing to a buddy’s missed aim in the field.

What does this mean for our era? People are using Congress as a stepping stone to lucrative careers in lobbying, contracting, and at the upper reaches of financial and educational money mills. And the Presidency! Either we’re going to have to execute them on their last day in office, or plan to have nothing but dynasties from now on.

So here’s my simple plan. Never mind the US Senate, which has become such a millionaires’ club (not that being a millionaire is that big these days). Let’s take all branches of government and require everyone at the federal level to have reached 55 years of age before they can be considered for public service. US Supreme Court and the rest of the federal bench, everyone in the Congress, and above all else, the White House.

This doesn’t just mean the public officials will have had to have a long-term track record, but their children will have had to do something besides getting in line to continue the family industry. This might give what’s left of local media a way to re-energize themselves, because most of what a member of Congress will have done will now be researchable when they run. By definition, members of Congress will have several generations of work and personal record on which run, which will greatly temper their ability to proclaim strong ideals and party loyalty. But if we’ve learned anything from the Bush and other dynasties (Michael Powell comes to mind), employing the immediate family of office-holders and party-leaders constitutes a back-door form of bribery. Here is where local and national media need to develop thick skin and investigate not just the candidate’s money, but everyone on which their family has deep confidence.

Up here in Vermont, we have this situation more or less by accident, because our small population means we have few top-of-ballot offices and therefore, anyone who wants them has to have spent a long time earning them. The one person who tried to buy one of them — Richard Tarrant, who ran for the US Senate against Bernie Sanders when Jim Jeffords retired — has entered electoral lore as the candidate who spent money per vote in a losing effort.

And how did he lose against the fifteenth-poorest member of the Senate? He faced someone who had shaken every hand in the state, repeatedly for several decades. And before that, every hand in the state’s population center, again for most of a decade. Everyone knows him. We don’t like everything about him, but he has no secrets that deeply affect how we feel about him. Even now, when someone is running an ad pointing out that his wife got a golden parachute to leave her job at Burlington College, most of us know how much it was.

Racist Classist Disease Hysteria

Is it just me, or has anyone else started to worry about the racism and classism evidenced in the way ALL news channels — even the most leftist and objective (our go-tos are Free Speech, Al Jazeera, MSNBC, PBS and C-Span) have chosen to cast the Ebola virus as the newest non-European threat to homeland security while downplaying the virus that is actually killing our children, namely Enterovirus 68? Behind me I hear an excellent MSNBC commentator talking about the racism of hyper-reporting about Ebola. Good job.

But the second part is, what about the race and class factors that might be driving EV-68 right here in the good ol’ US of A?

Here are the glimmers I see: the most visible risk factor for this disease is childhood asthma. Childhood asthma is known to predominate among children living in substandard housing, especially where cockroaches and rodents might be present. A larger proportion of these children are African American, but all of them, of any race, are poor. So by definition, they have parents and other caregivers who have less and less time to spend on housekeeping because minimum wage jobs require more and more high-energy hours to keep a house at all. Poor public transportation adds to those absent hours: how many bus and train systems cut back on route intervals just when overnight and late shift workers need them most? Complicating this factor further is that many of these families lack adequate childcare or neighborhood infrastructure, forcing conscientious parents to shell out big bucks for cable and tell the kids to stay inside, open the door to no one, avoid trouble.

So where are these kids spending time when they’re not in their substandard housing? Why, in their public schools. Here again, budget cuts postpone more and more necessary repairs, much less routine preventive maintenance. Class sizes are going up, so that if one child is sick, more children are in that child’s class. And in many cases, you can forget about a school nurse or sick room. Cut — with no way to send the sick child home to a locked, empty apartment.

And even if the concerned parent wants to bring the child to a clinic or doctor, they might or might not have an accessible, affordable facility. And that facility’s bean counters might not want to screen every coughing child for EV-68 at the first presentation. Fear of one Munschausen Mom will doom how many sick children?

Again, these observations only pertain to asthma, not EV-68. But if asthma (of which I am a chronic sufferer) is the main predictor, then these are relevant questions. Biological tests go only so far; once you hit epidemics and clusters, it’s about public health and public policy.

So far, I have seen only one picture of only one of the children dealing with post-EV-68 paralysis. That young man is black.

Repeating the Fundamental Mistake

Every few years I find it useful to reread David Halberstam’s The Best and the Brightest and see how we’re doing. There’s always some current policy that lines up exactly and there’s always some way in which — unexpectedly — things have changed. But what changes the most each time is my own eye, by which I mean, that which jumps off the page most clearly, directly, unavoidably. In different eras, different bits of the analysis rise and fall in significance.

The first time I tried to read this inch-by-inch analysis of how the US got into the quagmire of its war in Vietnam, the details nearly did me in. Did we really need to know who attended which meeting and what they said? Why did China make such a difference, except in the most thorough historiography? Honest readers could debate these things all day — and often do. And then, five or ten years later, it’s time to do it again.

This time, the something that leaps off the page in a way that it never has before, is what Halberstam referred to as the fundamental error of the early decision-makers: “A quick assumption here, that the government and the people of South Vietnam were as one, that what Diem wanted was what ‘the people’ wanted: a quick assumption which haunted American policy-makers throughout the crisis.”  (p. 170, 1992 edition). It has taken me some time to acknowledge to myself that the times this phrase echoes most often are moments when I see President Obama speaking, for instance this week at the United Nations, with the confidence and vigor of a stable regime. It echoes as my wife and I watch countless hours of C-Span — hearing after hearing, think tank panel after think tank panel. Sometimes someone will address life as we are living it, but usually, that happens on Book TV, not American Government or Washington Journal. Not the callers, but the pundits and politicians channels might as well be discussing another country.

I find this disturbing. The Best and the Brightest concerns the intersection of domestic and foreign policy, but mostly, it’s about foreign policy. Halberstam’s analysis always circles back around to how we can achieve better foreign policy. As many times as I’ve read it, this is the first time I felt that the primary problem described above — that the government and the people have radically divergent interests– applies more to us Americans than to the nations we are bombing, invading, corrupting. What Washington wants is not what the people want — left, right or center — and what the people want is no particular interest to the government.

Just to continue with this scary motif for a moment, let’s link it to the unprecedented appearance of major military tools placed in the hands of domestic policing entities. Governments who do not wish to carry out the wishes of the people will eventually understand that they do not wish to carry out the wishes of the people. At first, they kind of drift away, but eventually the benefits of being in government for the benefit of someone other than the people being governed becomes too tempting. Intentional. Directional. At that point, members of the government with this goal — at all levels — will organize systems by which to suppress rebellion and opposition. So perhaps what happened at Davis, in Ferguson, are harbingers of a non-constitutional authority.

Once governments want non-democratic authority, they want immediate access to military equipment. Just as the Southern Poverty Law Center keeps track of white supremacist organizations and their terrorist potential, someone needs to start tracking all this police equipment and making it widely known. What is this “training” that comes with it? When are the “conferences” that role play best uses? Who gets to go to these things and who pays?

That’s what I want to see on C-span now. It’s more likely, of course, on Democracy Now! or Al Jazeera, but I doubt the Tea Party care any less about this problem than do we Progressives. In fact, I am starting to wonder if those crazy old-time right-wingers might not have been on to something that the rest of us should have paid more attention to.