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.

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.

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.

Huntington’s Disease and Herculaneum

When I wrote fondly last week about my joy at playing house, did I mention that it sits on a volcano? Like all volcanoes, this one troubles and frightens in various ways, but not all the time, and not in any pattern. Maybe it’s more like living near several volcanoes, each with its own separate pattern. You might have seen one of those documentaries about the various Iceland volcanoes. One blows straight up in the air, one kind of seeps, another threatens to spew forth enough heat to bury the nearby towns and farms with mud from rapid melting of its usually beautiful glacier. Each of those unpronounceable names has particular characteristics, each of which signals a clear and separate scenario to volcanologists.

The name of our volcano is Huntington’s Disease. It lives in my wife like a parasite, often resting, but always on the lookout for some way to kidnap her body and turn it against us. When we married, I told the minister to announce that our marriage has three participants, because she fights the disease with as much detachment as I do. It has not become her new being, even though it changes her shapes and talents in irreversible ways.

Three weekends ago, as I dug out one of the tougher tree roots, my mind flashed an image — as it does in so many stray moments — of the flash-fried corpses discovered so recently at Herculaneum, at the foot of Mt. Vesuvius. When the lava engulfed them, it perfectly preserved the poses in which they sought comfort. If a shout should come from my open living room window, and I arrived too late to forestall the fall, the choking incident, whatever it would be that would cut short her life, my tree stump would be like one of those Herculaneum bodies: caught mid-task for ages to come.|

Other times, the volcano that looms is Kilauea, the constantly oozing lava that slowly crunches over Hawaii’s trees and roads and houses. My wife just slows down, does less. Fighting the disease is so constant, and although it takes over the brain, it controls the entire body. After a long, ambitious day, she’s likely to spend the next one looking as if she were walking under water. Maybe only sleeping.

But the one that scares me the most is Mt. Pinatubo. Perhaps you remember those films from the Philippines, no more than about twenty years ago. There were warning signals and evacuations, saving thousands of lives. But then, when the mountain erupted, spewing ash into a tropical rainstorm that would have been a disaster all on its own, mud spattered down everywhere. Lahars — lava-mixed mud — rolled down in large rivers, while lava-mixed rain coated the countryside as if in some overdone theatrical: whiteface on the people, the cattle, the pets, the cars and trucks and squalid little bags that held their lives.

What will our lahar-rain look like? Maybe she’ll swallow too much liquid into her lungs and be strangled by that vicious pneumonia. Maybe she’ll fall and suffer one of the major disabilities that beset us women of sixty and over. If these things happen, she will still be my wife, but our cute little home will be shattered. My caregiving-based funding will end when she enters the hospital or residential care. My ties to the community are tenuous, because I spend so much time at home, but residential care or hospitalization will completely uproot me. I’ll look like one of those tree stumps whose roots lie cut around them.

Huntington’s Disease has no cure, and after all the excitement about finding its genetic marker, the subsequent decade has revealed that the gene requires activators the doctors don’t understand. There are some correlative factors that seem important, but no one knows why. My wife is the youngest — one of the risk factors — and her father was somewhat older when she was born — which is now factoring into several neurological syndromes. On the other hand, it appears that in her family the activators have delayed the onset of symptoms past the point they would have been predicted by just the genetic marker.

Maybe you don’t care about this, because no one in your family has this disease. But it’s the only hereditary member of a cluster that might well rumble into your life — Parkinson’s, Alzheimer’s, maybe even ALS or MS. More and more, our research communities are cross-fertilizing each other. Yes, ALS is still the worst, and fully deserving of all that ice-bucket money you might have heard about. But would you spare a thought for us, living here in this cluster of volcanoes, and donate for research into Huntington’s Disease? We need brain scans to identify the sectors of each HD brain as it wins and loses particular regional battles. My wife, for instance, has phenomenal intellectual capacity, but impulse control and anxiety attacks slice into our lives almost daily.

Next Saturday, September 27, 2014, our humble little Vermont chapter of the Huntington’s Disease Society of America, will walk to raise funds. Our chapter has expenses — a paid convener — and dreams, such as a local residential facility, so caregivers can maintain rooted lives when our loved ones are no longer at home. Please click on our website and make a donation:

http://www.hdsa.org/team-hope-2012/lets-get-started/map/burlington-vt.html

And thank you.

Pastoral Care for Obamacare

Now that the Affordable Care Act has provoked the unavoidable controversies, I find myself missing true religious leadership during this process.

You might be liberal or conservative, in either your theology or your politics, but as a clergy-person, you are taught to stand with your people during times of change, and reassure them that, “Yes, change is hard. Yes, change is scary. When familiar things get rearranged, it feels like you’re under attack.”

Depending on your theology, you then say, “You’ve been through stuff like this before. You know people who have been through stuff like this before. Change is hard. Change is scary. You feel like you’re being attacked. Let’s see if you are really being attacked, or whether God is working in your life to make things better.”

This is where some facts come in. Not big picture government facts, but personal information: “Do you have health insurance right now? What is the best part of it? What is the worst part of it? Think about your own family. What do you know from coworkers and neighbors with the same coverage?”

Then you stay personal, not political. The religious path is to stay away from the blame game. “How did you feel when that happened? What were people telling you? Did anyone step up to help you with the other stuff at that time? Who was that ? What did they do for you?”

Depending on your theology, this is a chance to call on God, with a prayer of thanksgiving for everything that worked. The family members that loaned money. The neighbor who cut your lawn without being asked (this really happened to me). The coworker who kept your desk up-to-date while you were out. The Meal Train that brought food while your family lacked a cook. Community. Connections. The things health insurance never offered, and never will.

And then, back to health care. Not the law, your life.

“How much of what worked for you in that situation is affected by the Affordable Health Care Act, either for good or ill? Do you even know?”

“So if you don’t know the answer to this, can we just say a prayer for courage and God’s love while you work to figure this out?”

If liberal religious groups really want to make this law happen, their first step is to quit talking about policy and start setting up small groups to work together on the scariness of this adjustment.  To set up prayers for everyone making this adjustment, even just as part of worship. Name it as a stress sweeping through our nation, just as much as immigration injustice (however you define THAT!) or an unexpected wave of water.

Politicians are going to be reworking this thing for a long time. Meanwhile, we, in religion, we’ve got people we ought to be caring for. And the more strength we can bring to their souls in this stage, the more strength they will bring to the stages of correction and adjustment that come next.