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.