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.

Late Night Bombshells

I’m a night person, and I like to see how things end. So over the years, I’ve stayed up for a number of television presentations that my mother — my usual viewing companion — has walked away from. Sometimes she just couldn’t stand what she was seeing. More often she was determined to get to bed at a reasonable hour because she hates sleeping late, loves that quiet time before the large family swirls into her quiet kitchen.  Her crossword puzzle. Classical radio. Coffee and a modest breakfast. Then we come in, and her work begins.

The first big thing I heard and she didn’t, was LBJ’s speech to the nation, March 1968, which ended with his stunning withdrawal from the presidential race. As unhappy with him as I was, it still threw me off. When Kennedy was shot, we knew what was going on: a violation of the natural order. Now LBJ was walking away. Were presidents really still the pillar? (Come to think of it, wasn’t the next one Nixon’s resignation? Then the Ford-Carter diminution? No wonder people admired Reagan!)

The next big late night thing — and here we switch pretty completely to baseball — was Carlton Fisk’s iconic home run. Heck, we lived in Cincinnati, we listened to the Reds every night after dinner, often ran down to the ballpark nothing was on tv. And now she was worried about getting up on time, with the World Series on the line? As we say on Facebook: WTF?

Brief skip forward to the Kirk Gibson home run. Iconic, yes. But not my team. Same with some of the other great World Series home runs — including Mr. November’s.

10:30 isn’t as late as some of those were, but somehow, since the sun sets so damned early in Vermont after the Equinox, it feels like the middle of the night. And now it’s not my mother but my wife who keeps me company. She’s a Yankee fan, but always nice to the Red Sox. And I’m not just being nice about Derek Jeter. He has been a true class act, a steady character and talented professional. Someone who partied a lot but never went over any lines. As with Mariano last year, the team doesn’t really matter when it comes to saying good-bye to an immortal. When his single shot through the infield (a better throw would have gotten that runner), I whooped and hollered like everyone else who ever wore a baseball cap. Even the Orioles stood and applauded until The Captain departed.

In Cincinnati, our immortals were mostly traded away. No small market could pay Big Red Machine-level money as revenues grew with television, Yankees don’t have that problem. They face the opposite challenge: a player has to be good enough to justify the money that team will pay. (The Red Sox will pay you that whether you’re worth it or not, snark snark.) But few are able to be that good that long. So we treasured every moment. And there it was. The fairy tale ending to the fairy tale career. What can we say? Is God a Yankee fan, or just a Derek Jeter fan? Maybe it was a present to Joe Gerardi, who joked that the best way it could end would be a walk-off.

Whatever the explanation, my first impulse was to pick up the phone and call my mother. To hear her complain that it’s way too late, she’ll find it all out in the morning. And like Derek’s, my story has a happy ending: my mother is still alive. Well. Indeed, I will call and describe another late night milestone that she missed.
But not too early: she really likes that crossword puzzle.

PaleoSleeping

What happened to all that energy I had last week? Autumn hits the far north/south far harder than it impacts those closer to the Equator. I’m not ready to be cold again: the heat didn’t bake last winter out of my bones. I remember another recent Vermont autumn that brought this same fear of winter, due to the same sequence of a long, deeply-cold winter, followed by a cool summer that showed no stamina resisting autumn’s winds and shadows. I was more active then, and it didn’t help; an eight-hour day is supposed to refer to work, not light. With any luck this cycle will pan out like that one did, with lots of heat and light the following summer.

Of course, my spirits aren’t just subdued by the autumn. My wife just fell getting out of the shower. Always terrifying. She hit her head; how hard? She might have scraped her back; what does that look like? (Both seem sort of okay). She’ll need help getting off the floor; how much will it be? Can I do what she needs?

She got herself up pretty well, I dried her as fast as I could, and now she’s listening from her glider as Derek Jeter plays out the last of his illustrious career. Football scores crawl beneath the panorama of batter, pitcher, and field boxes. Jeter has played hard, but the Yankees will need a miracle to play into October.

She was an athlete all her life, my wife was. Time and again we rely on the training of her muscles, the daily-nurtured determination to beat back physical challenge with grit and grip and a body that knows how to find its hidden reservoirs of strength. Today too many kids spend too much time with screens and chairs, too much bad food, too few opportunities to play team sports. What will they do when they get old? If my wife hadn’t done all that basketball and sailing, if I hadn’t spent my twenties doing yoga in my parents’ living room, if my mom hadn’t taken us all for swimming lessons at the Y, and is still doing her own water aerobics at 85 — well, all I can say is, we’d be beat. Beat. Not by the Huntington’s Disease, but by not knowing how to fight off the premature autumn it wants to wrap around our ambitions.

Time to hang the Halloween flag. And this weekend, they say, we might have one last shot at eighty.