Today I did something I haven’t done for a year or more — I read the UU (Unitarian Universalist) World soon after it landed in our mailbox. I did not read it out of duty or professional commitment; for the first time in months, it beckoned my heart. Strange confession from someone officially categorized as a retired Unitarian Universalist minister, but an honest marker that perhaps my life has completed this latest circle at last.

Just over two years ago, as the sun marked its longest day in the northern hemisphere, I sat in front of an invited congregation and altered the very polity of my life. In short, I got married. Till that moment, polity changes were something I suggested, cajoled, imposed on others from an autonomous and somewhat superior detached position. From that moment on, polity changes rewrote my life so radically that for most of the time I wondered who I would be when the ride was over. for in taking the spouse my heart chose, I surrendered my life not only to her, but also to whatever her Huntington’s Disease would cast upon us together.

Marriage has been a wonderful polity advancement, except for this disease. She galloped up the aisle already in the grip of Stage Four, but with disciplined athleticism has pounded into every achievement physical therapy can offer. She doesn’t speak much these days, and not clearly when she does, but her mind and guts ring as strong as ever. Yesterday she reminded me that I had promised to take her to see the latest Star Trek movie in a theater. We spend lots of our time consuming news stories and listening to author talks and history lectures on C-Span, which ramps up my long ago international studies pursuits.

Pouring myself into her care, in order to continue enjoying her companionship, redirected the polity of my life into the community of people struggling with this and similar movement disorders/neurodegenerative diseases. For a long time, this diversion scared me. Could I retain my ties to UUism — especially without the means to attend Sunday worship (which I deeply, passionately miss)? If I spent so little time discussing UUism, imbibing its culture and habits, would it fall away from disuse?

Much to my amazement, UUism retained its ties to me. The Care Network checks on us regularly, and can be relied upon to keep her cheery and valued on the few occasions I tear myself away. Our contact visitor even came over and weeded one of our gardens one hot summer day, asking nothing in return! Meanwhile, a project I worked on years ago has become relevant again, and a small self-appointed subcommittee of the Women’s Alliance (my chosen small group ministry) has rallied to keep me either motivated or urged, while still respecting the challenges of the disease.

What completed that circle has been the addition of a marvelously self-reliant and highly-trained caregiver. My wife plans to stay at home for her entire journey with the disease, but having 34 hours a week of support and even replacement lets me get out of the same house. Mostly I just go into a separate part of it and read catalogs, watch Netflix documentaries and BBC murder mysteries. These I choose for their filming locations, and call them “scenery stories.” It turns out that lots of people do this, because you can go online and find out exactly where these places are, should you choose to visit. What I like is being able to visit them by going into another room, bringing my wife along, as it were, without leaving home.

But in this, our third year of marriage, when August brought its turn toward autumn and the back-to-school sales splashed over the screens, something familiar connected inside my circuits. Our Huntington’s Disease Support Association Walk takes place October 1, which means I have work to do in my new community. But there’s a Women’s Alliance meeting the first Wednesday of September, and this year, that feels like another place my new/old self belongs.

 

w

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.

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.

Caregiving Enters a New Season: Miscellanies from Tiriduum in Vermont

Easter has meant different things at different times in my life. You know the flow: from one of the two annual candy days of childhood, to the young adult choice to either ignore it or study it passionately, to the young parenting years of passing along traditions and watching kids grow through them. Then came the post-parenting years of Easter as a model for self-reinventing. Then came gardening and not thinking much about Jesus.

And now I’m turning sixty. What was this last Triduum in my fifties?

Not much church, and none of it focused on Jesus. But all those long weekends at King’s Chapel turn out to have been bulbs well-planted: throughout an apparently non-religious Triduum, little reflections kept popping up at stray moments, illuminating moments that no one would describe as particularly brilliant.

Good Friday turns out to be a great day for reflecting on the transitions of retirement. Familiar life is no longer waning, ebbing, but rapidly passing away. You reach for things that aren’t there, get confused, and look into spaces whose once-empty appearance now shimmer into promising forms. These forms will become shapes, and from these shapes, new structures for new life will arise. But right now, on Good Friday, all you see is that these forms have replaced ghosts and companions you thought would last forever. That you thought you would want to last forever.

Holy Saturday is a quiet day. One never knows quite what to do. Back on Boston, my friend Nina and I used to wonder if it was sacrilegious to feast on Boston’s springtime glory when so recently we’d immersed ourselves not only in the suffering of Jesus, but in the awareness that he undertook that suffering in solidarity of so much human suffering everywhere, all around. Shouldn’t we be showing the same solidarity?

And then Easter. Since my partner sings in the choir, Huntington’s Disease be damned: there are two Hallelujah Choruses to fling joyously toward a congregation whose primary definition of Easter might well be that it’s when you get to hear the choir sing The Hallelujah Chorus. The great thing about each of the Christian seasons is that it starts with good intentions, and, unlike the secular year, provides a reasonable interval to maintain them and then celebrate having done so.

So Easter, this year, for me, marks simply the beginning of another season. As far as seasons go, 2014 for me will be the Year of Candlemas. Because it had neither theological nor outdoor messages this year — just snowstorm after snowstorm, with occasional variations of ice — the weeks from Epiphany to Ground-hog’s Day had the wonderful effect of letting me garden my house. One cleans up after Christmas, takes down a few more decorations each day — but not all of them — to renew the indoor space, moving it, slowly but surely, toward the moment of welcoming new light. And in this legendary year, when those of us who are used to lots of snow and cold set records for snow and cold — in our case, all the way through March —  the endless white surfaces outside spread a perfect canvas for the sun to announce itself differently every day, every hour. 

Just as a clock runs down, the arrival of the new holy renders moot the season which preceded it. Candlemas ends in a cleaning flurry, preparing the home for Lent. But the stripped down home starts accumulating new stuff almost immediately. As the weather warms, new clothes come out and old ones get put away. Mud, gravel, and salt slowly age on the threshholds, and suddenly it seems sensible to clean the floors. 

That didn’t happen this year. Instead she started physical therapy. Lawyer stuff and doctor stuff overrode us. And all of a sudden, friends on Facebook started posting pictures of crocuses, saying that if I ventured out to lift the mulch, I, too, would find little green things. And this year, we’re in the final stages of setting up our own wedding.

Thank God Easter is a whole season. Once again, I’ll be using all six weeks to organize, to beautify, to set up our little piece of heaven for Vermont’s tiny summer. There are indeed little green things poking through, when I rake away the mats of leaf mulch. People are actually planning to join us for our wedding, and smiling about the idea of it. We’ll spend only a few days out of our house, and then, come home to start another season.