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.

 

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Deepening Into Caregiving: Summer

Over the last few weeks, Politywonk has gotten married, for the first time, at age sixty, to a wife who lives with Huntington’s Disease. Caregiving has become my life, in part because it lets me keep writing and reading and reveling in the arts. 

But for many years, as the sun crested through its Summer Solstice and began receding toward Autumn, I have fought off the urge to just be home. To rest and eat lightly, watch lots of baseball, and choose languid audiobook performances that fill the house with landscapes and cultures we’d be visiting if we could travel.

I fought off these impulses, as relics of earlier career paths, as the curse of being raised by educators. But no more. My wife and I have beautiful flowers and trees, not many, but enough, right here in our own yard, and this is their one brief window of opportunity. From now on, we’re reverting to the agricultural rhythm, even if we only support a few bees. 

And what does that mean we are moving to other months? Not writing, not even cooking — which simply moves to overnight hours, when cooler temperatures and quiet offices make it both more comfortable and more ecological. No, it’s the barrage of annual medical appointments. They wound up here because we’re here, and medical schedulers need to find people who don’t need the busy seasons of autumn and spring (in Vermont, winter is not a reliable scheduling option).

But from now on, we’re just saying no. I’m gonna quit waking up and gazing with sorrow at the roses as I leap in the car for some upkeep of something else. No, it’s time for the roses. It’s time for the lilies, the annuals, lifting bulbs, and slicing out bindweed. Cleaning out the garage, where wind-scattered leaves from last autumn are turning into compost and mold.

Look out, vacationers! We might not have money, we might have a dread disease, but that doesn’t mean we can’t vacation. Vacation is a state of mind, and my mind has just adopted it.

After (Another) Fall

Our routine of meds, meals, recreation, respite care — it’s all been on a roll for the past few weeks — and Saturday night had us all set to return to worship after the cold spells and schedule adjustments. (The Weather Channel still points us out as a cold spot, but after the part of the Polar Vortex that we got in December, it’s all good now!)

Anyway, I settled in at the computer with my tea, waiting for her to wake up.

Then came the THUNK from the bedroom: she had fallen.

I found her on the floor. Prone. Face down, fully elongated, breathing deeply. She did not respond to her name or to touch, but she was breathing. She’s usually a responsive sleeper, so this puzzled me.

So what did I do? I figured her REM sleep was unusually deep, that her Huntington’s Disease sleep chorea had propelled her over the side of the bed, and she would wake up when her dream finished.

Sure enough, about fifteen minutes later, she wandered into the living room (yay! walking normally!) asking, “What happened?”

And I STILL didn’t get it!

When she was more wobbly, nauseous and confused after two more hours, I called the Replenishment Relative, who said I should take my beloved up to the hospital to be evaluated for concussion.

How did I not think of that?

It took another hour to obtain permission from my beloved to call an ambulance (note to social activists: mental health issues impair decision-making capacities), but when she stood up again and toppled like a cut tree, the fight was done.

And here’s the amazing party: After the EMT’s strapped her into the ambulance, they did a routine Carbon Monoxide test, and her levels were extraordinarily elevated! They came back in and checked the house (which was fine) and the alarms (which were serviced three weeks ago and worked perfectly).

The CT scan of her brain was negative for internal bleeding or concussion symptoms. A long day at the hospital brought down her Carbon Monoxide levels, and we slept in the living room, where she has a safe accommodation, until her niece and nephew can obtain and install the half-guardrail on our beloved heirloom family bed.

I write this 24 hours later. She’s got a few bruises, including one on her head, but she’s basically fine. Clear head, eating, resting as she does during each day. PBS Nature is focusing on wolves, and when I turned on one we saw earlier this week, she immediately complained that “we saw this one before.”

So now, the issue is me. The doctor said to watch her closely for two full days, and that’s not something I can delegate. But after missing Christmas, New Year’s, everything since Thanksgiving, what I’d really love is to believe that when those 48 hours are over, I am meeting someone special at a spa up in Stowe, to relax, to chat, to haunt the fitness center, the pools, and the massage tables.

But it’s more likely that I’ll be lucky if I can let myself take an hour or two around Burlington. However, I DO plan to spend those hours joining and using a gym.

Why Can’t My Mind Seize This Opportunity?

Here in Burlington, Vermont, it is cold, damn cold. It has been so for a couple of days and and gonna be so for quite some time. I have carefully looked ahead in the weather forecast to see when we’ll cross back up towards twenty (Fahrenheit) so I can get more groceries. That is thirty degrees and several days away — not counting wind chill.

Why should a caregiver care? Most days, I don’t go anywhere anyway; staying home with my sweetie and her disease keeps me busy and happy. But too often, since her greatest ambition revolves around listening to news shows (ranging from C-Span to MSNBC), my butt gravitates to my chair, so close to the sparkle of those blue eyes peaking out from under her fleece cover.

I’ve made a list of things to do, and most of them are really important. It feels like something inside is shifting in their direction. But mostly, I’m just playing on the computer, while MSNBC plays in the background. There’s some pride in having taken out the recycling this morning (most people didn’t) and brought in the bins this afternoon (apparently unique, even for those who got them out in the first place), but that’s a pathetic level of accomplishment.

Do other caregivers have this problem? I wish I knew…

Captivities at Sixty — and Releases

“O Come, O Come, Emmanuel! And ransom captive Israel…”

So far this Advent I haven’t been called to join formal worship, but this song — and the prophecies of Isaiah — ring strong in my heart and soul. My life, as I turn sixty, has so many worldly captivities, but my soul finds freedom at this rickety old computer, where I connect with kindred spirits on Facebook and blog rolls, where I read newspaper articles, even where I yesterday had a pleasant day managing recent photos. No, my body may be trapped by my partner’s illness, but my soul is rooted, a firm, strong tree lifting wider and wider branches to greet the snow.

So why was this phrase coming to me? The captivities that bother me are those that bothered Isaiah: the poor, the disabled, the encumbered, all suffering rejection from those whose assets — financial, physical, social — could make them whole. No, those whom God has given the means to provide completion have instead diverted these gifts into a system for grotesque self-fattening. I get angrier and angrier about this; I hope Isaiah is right.

But at sixty, I’m well aware that I cannot save the world. All I can do is turn my waning talents to strengthen my own group of assets toward the stewardship for which God intended them. At sixty, I have put aside the lifelong demon of curiosity. My next transition will not be a new career, a new home, but, as this one has been, to deeper zones of soul, higher zones of relationship. 

The tree, in other words, has finally found its patch of ground. My crown will reach up to higher suns, but my roots with thirst or thrive with their current ground. That ground might not be physical, but rather, the family, the friends, even the congregations and cultures, that turn out to have been my succor these closing decades already.

So last year’s experimental abandonment of The New Yorker and The New York Times were failures; nothing replaced them, despite my good faith efforts to graft and fertilize. My research and writing will stick with polity, history, civil religion, and Unitarian Universalism. My centerpiece remains Christianity, although my branches have spread far past it now.

It is telling that when I sat down to plan the spiritual and social observances of this season, which for me now begins with Canadian Thanksgiving and reaches to Epiphany’s opened light, I could see themes for the first month — friendships — and the second one — closing the garden and changing over the fall clothes to deep winter warmers. And then I stopped. What comes next?

It was a Homer Simpson moment. Doh! 

That third month is December. Its focus is Advent.

And so, despite so many and eclectic faith sources, the trunk declares its species. 

The leaves trust in the warmth beyond the snow. We will all be free. 

I Used to Be So Good at Vigiling

Now that disemployment policies (deliberate imposition of unemployment on otherwise willing and able workers, as opposed to “natural unemployment”) have taken so many out of the rhythms of outside work, Books of Hours, Daily Rules, etc, are making a big comeback. Being more of a Christian than anything else, I, too, have frantically searched various such resources for a way to manage my own expanding time.

Here are the three resources on which I have settled:

Music of Silence by David Steindl and Sharon Lebell, with an introduction by Kathleen Norris

Seven Times the Sun: guiding Your Child through the Rhythms of the Day by Shea Darlin

and a reflection series from the Society of St. John the Evangelist in Cambridge, MA.

It seems I cannot master more than one piece of this at a time, and anything that’s mastered one day is likely to slip away the next week. But here are the ones I’m feeling pretty good about: Terce (the mid-morning break for renewal), Vespers (the end of day wind-down reflection) and Compline (the final, bed-placed spiritual immersion).  I have made some progress on Sext, which is said to be the worst one, because it’s when you pause for the midday meal and rest and then get back to work.

Notice I haven’t yet mentioned Prime — that first morning application of energy to tasks. But it’s coming along.

Nones — the end of day clean-up and preparation for tomorrow? Forget it. Not a clue. Someone once told me they detected some “J” in my Myers-Briggs profile, and I still wonder who they were talking about.

Which leads me to “Vigil.” I hadn’t been paying much attention to this one, and it turns out, I should have done. And when I reread that section of Music of Silence two days ago, it was not about the night before — Erev, as Judaism says — but more about that time one lies half awake before dawn, visions of the coming day darting through a mind too tired to chase them down. For me, at least, the result is a horrible clash of aspiration against mortality. Doomed before I start. It’s a dreaming moment, and I’ve reached an age, and a poverty, in which I know most dreams must be put aside. It seems to be the last part of me that hasn’t caught on to being out of the marketplace, away from the community where people push each other along, and thereby are all more productive.

There are things I still know about what will happen. When my fiancee wakes up, it will be Prime (thank God she’s a morning person and gets me going!) and energy will rise within me. When her Huntington’s Disease knocks her back into sleep about halfway through my Prime, it should be my Terce (coffee break), but often sinks into a premature Sext (lunch hour). But if I just remind myself that there’s lots to be done even later, through dinner and bedtime, it makes me feel better and Sext settles into a calm that refreshes.

But Vigil. That’s the tough one. Right now what helps is blogging (thank you, dear reader), Facebook (God bless Community), and a small list of email check-ins that help me remember what I’m doing.

And, since it’s so verboten to say this for ministers in covenant or search with congregations, my monkey mind relies on judicious and minimal applications of Ritalin to keep it organized. There are many family members now using pharmacological as well as spiritual tools to deal with responsibly diagnosed ADHD.

Vigil is when I have to remind myself of that diagnosis. This will not be the day I do a thousand things. It isn’t supposed to be. It’s just one day, and there are just a few covenants — at best — in which only baby steps will be taken.

Knights used to vigil to prepare for investiture, a changed life. But in my protesting days (and thanks to those of you now able and willing to do this work), it was only a single execution, a single life for which I stood outside for hours.

That’s when I was good at Vigil: when I knew it was about the tension between life and death. How little we can hope to do, how much we can achieve by doing little.

Good News, Bad News

It should have been a moment of joy, not of calculation. She’s the best thing that ever happened to me, and however much I do for her, she does as much or more for me.

So OF COURSE when she asked me to marry her the other night, I said yes.

That’s the good news: Lynne and I are engaged. Despite her Huntington’s Disease (she is about to enter her twelfth year of living with it since diagnosis) and our being both women, marriage is a real option in her mind.

But maybe, for me, not so much.

Not that I hesitate in making her my life partner, calling her “wife” to my “wife,” “spouse” to my “spouse.” For years now, I’ve been fantasizing more about what she would wear to our wedding than what I would wear. Would she put aside her deep aversion to jewelry and wear a ring that tells the world she’s mine? It’s almost as if I quit wearing any of my own rings until the day she puts one on my hand.

But, alas, financially, I can only do a non-legal blessing ceremony. Not because we’re both women, but because at low incomes, marriage gets heavily penalized.

I don’t often encourage UUs to study information from Sam Brownback, the socially conservative governor of Kansas, but he’s got my back on this one.  That was in 2008; the update on Obamacare is just as bleak. Small wonder that David Blankenhorn, long a pro-family activist, has abandoned the fight against marriage for same-sex couples like Lynne and me and begun asking how to support any couple, straight or gay, who wants to be married and poor.

Even the laughably left-wing state of Vermont, which is perfectly happy to let us get married with full equal rights, would then turn around and cut off the pay I get for staying home to take care of Lynne. What started out as equal rights has suddenly made me aware there are equal penalties.

These same penalties apply in Social Security and numerous other low-income supports. The Earned Income Tax Credit, the single largest redistributor of income into working poor households, is one of the worst offenders. If you thought America had long since accepted life without The Donna Reed Show, you haven’t been paying attention to these injustices, not based on gender, but on class.

So yes, do congratulate us, and celebrate our good fortune in so many ways. But if you really want to do something useful, to make this about more than just two women in a struggling once-middle-class household, put these injustices up next to your concerns about DOMA (Defense of Marriage Act) and devote yourself to any couple, straight or gay, who wants to get married — and simply can’t afford to.