It’s been ages since I thought there was any point in writing about polity among the Unitarian Universalists. Nor does my return to the topic, at this cataclysmic moment, indicate either a sense of hope, or much interest. These days most of my emotional energy resided in the purely personal. Still, people who have meant so much to me would like a small bit of perspective, so here’s what I can offer.

For those who don’t know, we have had, on the same day — March 30, 2017 — not one but two earthshaking ministerial downfalls. What can’t be overlooked is that they come from the two opposite poles of polity. It’s as if God wanted to wake us up to both dangers, and to do so with enough clarity that none of us can miss it. So without commenting on the content of either event, here are my evaluations.

First, on the resignation of our denominational president over concerns about staff appointments. The problem itself is as old as we are. When we were only New Englanders, a call went out for more leaders from and in the west (a changing place over the centuries, but never a different issue). When we were only led by men, women agitated for a place at the decision-making tables. In each case, the protesters wanted their superficial differentness to harbor a deeper difference in how our congregational approach religion. The UUA, following the lead of its Unitarian forerunners, the Boston Clergy Association and the National Conference of Unitarian and other Liberal Churches, instituted closed selection processes for approving clergy, always claiming their only aim was protecting the innocent and/or sacred. Yet in each case, the victors in writing the bylaws turned out to be elitists convinced that salvation for others lay in control only by folks carefully selected to resemble themselves or at least, show deference to their co-called wisdom and devotion.

In 1899, when Samuel Atkins Eliot I and his co-conspirators on the board of the tiny American Unitarian Association instituted an anti-congregational coup over the decentralized and congregationally-based National and Western Conferences, they thought they had good reasons. In particular, the rise of both evangelical Christianity and Roman Catholic political influence led these folks to believe that educated, rationalist, humanist-driven Protestantism needed to strengthen its ability to speak up in the public realm. This is the tendency which has led us to tighter and tighter staff leadership and more and more strident political advocacy. It was probably inevitable that eventually, heads would roll as that advocacy has finally begun — as once did geographic outreach — to bring in some long-desired but little known new members.

So now, if our ministers and parishioners of color want more staff members that not only look like them, but understand the spiritual ups and downs of their personal lives, I say they only continue an honorable and completely worthy line of disrupters who have always, eventually, made our denomination more rewarding for all of us. It is worth noting that part of their concern is the way racism plays out differently in different parts of the country, meaning regionally-driven leadership is the only legitimate way to truly minister to people where they live. The question raging now is whether the necessary change can be accomplished by appointing better people to the same offices — what denominationalists always have insisted — or whether there will be more folks like me, who believe the only effective answer can be systematic.

Meanwhile, from the opposite end of the polity spectrum, we have a lone wolf who wound up devouring innocent lambs. Really. This minister and community activist, now accepting charges of receiving pornography featuring violence against children, always raised the most fiery and least reasoned supports of my complaints about over-centralized denominational personnel management. It is worth pointing out that when Henry Whitney Bellows laid out the framework for the National Conference, he explicitly enumerated the duty to monitor clergy, which, to his mind, could only done by those in the same locales. Likewise, I have not mentioned our Universalist forebears, because their decentralized polity, for most of their existence, had no relevance to the new structures. Yet their state and regional conventions also included and exercised fellowshipping and disfellowshipping of clergy. The centralist shibbolith that localism means immorality has no place in either of our histories; that was a tool for the coup-plotters of 1899.

 

Of all the time I have spent in organized Unitarian Universalist activities, there are two gatherings, superficially different, geographically and racially unlike, which proved nevertheless to mirror and echo each other. They come back to me at this time, because on both ends of the polity spectrum we are going need a way to heal among ourselves. Each of these events was a gathering of sincerely-committed congregation members, usually assembled to click through meetings to manage something important to parishioners. Yet in each case, we committed to listen to each other’s voices as equals and as seekers. We were not seeking to elucidate on some topic, as small group ministries do, but to share some part of our vulnerable soul by telling our personal stories. The first occurred at All Souls in Washington, DC, when one option in our then-annual retreat was to share the spiritual journeys that brought us into that congregation. I closed my eyes to listen, and marveled at how little difference there really was around distinctions of race. Decades later, at First Church Unitarian in Jamaica Plain, MA, we met to implement the Welcoming Congregation curriculum, whose first step is to simply hear the story of parishioners’ journeys as LGBTQ individuals.

Recently one of my Facebook friends asked which was better, to be transformative or to be effective. In my experience, transformation is the only long-term effectiveness. I failed in my efforts to transform this association’s polity, although I do take credit for raising its prominence as a worthwhile general focus. As I prepare to turn 63, to help my wife (yes, after a lifetime of bisexual wanderings, I finally landed on this side of the fence) confront her revolutionary self-management of advanced Huntington’s Disease, those of you who come after are my comfort. If I made less and less effort to write, and became more and more of a lurker, in large part it is because your voices began to open parts of my mind and soul in ways too new and exciting to limit by language. Still, I do live in covenant, so if it helps, here’s my little offering.

With prayers for us all, especially the victims in both of our disastrous ministerial implosions.

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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New Shoes for New Wives

New Shoes for New Wives

About six weeks ago, my love and I got married. She has Huntington’s Disease, but with medication, physical therapy, and sheer determination, she is living with it, rather than dying of it. My mom says I should write a memoir about this, but we aren’t really that interested in it. Like anyone else who does self-maintenance in order to do the things we enjoy or have to do. Just now, we are working on the house she bought and owns, through a combination of hard work and family support. But inevitably, as the disease takes it toll, she is less able to do most of the physical work, both large and small. She no longer drives. Hence, the work falls onto me. 

And I am grateful for the opportunity to do it. Vermont pays family caregivers like me to help their dependents stay out of residential or institutional care settings, on the assumption that this is cheaper than shelling out Medicaid at that level. They are probably right. This summer, thanks to our generous wedding guests and family, we are doing about two thousand dollars worth of work on said house, as well as heading for church camp next week. We pay property taxes, we buy organic food, we take care of stray cats. In the larger sense of community, we are a good investment. I say “we” because although she cannot do very much of the physical work, she knows more about it, and comes along to mentor and support me, every step of the way.

“Every step of the way.” That’s the pivot phrase to my topic at this moment. Like my mother, I have narrow feet in a common size. Well, almost a common size — one is a seven and one is a seven-and-one-half. Many years,there are no shoes for me to buy, even if I need to, because the combination of style, fit, and availability never happens. For the past two years, that has been the case with sandals. Gladiator sandals — especially with three inch heels and dog collars around the ankles — just don’t meet my needs. But my previous sandals had fallen apart, except for two last pairs, thankfully in very basic colors. Being on a limited budget, I was racing to every clearance bin and clearance website I could find, for better colors and nicer styles.

Finally I succeeded. Black, blue and brown. I like to also have multicolored and red — and I love this year’s corals, mustards,and olives — but care-giving is not that kind of lifestyle. So, basics only.

My wife has one pair of LL Bean sandals, and would never dream of having more. She marvels at my accessories fetish. But here’s the kicker: when the shoes arrived, she asked if I had put them on HER credit card. 

“Of course not! There are MY shoes.”

“These are OUR shoes.”

“There are things that are mine, and shoes are one of them. If you were a man, you’d never question a wife buying some things on her own, with her own money.”

Okay. But what made her say that?

Is it because she has more money from family sources? In reality, our family resources are pretty equal, but I am trying not to exploit mine. I encourage her to be more cautious with hers as well.

Or — and this didn’t occur to me until much later — is it because she wants to thank me for all the work, and to treat me to something she knows I need and want, in one of the few ways she can?

I could ask her, and that would answer this question for us. But I’m writing this to say that care-giving has cast a different light on a long-held calculation.

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.

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.