Since I mentioned Lynne’s sleeping yesterday, I want to mention that she has embarked on a new regime of conducting her own personal hygiene regimes and doing it every day. Might not seem like much, but the war between her Huntington’s Disease and her medications makes this a major victory.
Earlier this week I resigned from the Unitarian Universalist Ministers’ Association. At the same time, I recommitted to the Unitarian Universalist Society for Community MInistries. But I’m not sure that will last, either.
My UU identity and work are stronger than ever, but they’ve become completely private endeavors. My daily reading is a wonderful resource from Beacon Press, Rabbi Chaim Stern’s Day by Day, an interfaith gathering of wisdom through the Jewish Lectionary Year. My history interest is still UU polity, in which I’m examining the immediate post-Roman Empire Western World for deep roots of elected governance combined with pagan ritual. Surprisingly, once you drop the Rome-centered view of the same regions, a coherent and unbroken story emerges. How much we could learn from the Jews about having a canon which tells that story, with all its contradictions and imperfect characters, week by week, every year, with no goal other than lifting our sense of self out of any particular time and place, into union with The Eternal from which our faith was given.
When I visit the local UU society on Sunday, I get none of this. The overwhelming sensation is that last residual of a dead faith, one from which God has moved on, leaving behind obligations that never end. The worship experience is delivered with excellence and commitment, and we had a huge turnout last weekend for our Beyond Categorical Thinking workshop — which means the ethical and spiritual core of our leadership stands ready to grow and serve — but I just miss a central presence of that God Who Unifies History.
As a caregiver, I need an unsullied message about larger concerns. Where does suffering come from? What will give me strength for one more day? As an aging person, I want to know who will mourn for me as me when I’m gone. Who will even know me well enough to say who I have been? A society that avoids discussing the God Who Unifies History — not just European history, not just national history, not just human history — cannot know my soul, any more than can a society that limits God and History to any one faith, place or species.
From the return of Jupiter and Venus this week through the quadrennial ritual of watching a Presidential debate, I believe in a God who speaks through knowable systematic theology. It is not chaos, it is not abstract or mystical. That doesn’t mean there are not mystical moments or chaotic disruptions to the sequence, it just means things return to that place of relationship, where Abraham and Sarah received the promise of descendents as numerous as sand in the desert or stars in the sky. Where Noah received the rainbow and the dove, and Jesus went apart to regather his strength through prayer. The place where Lao Tzu watched the butcher and cherry blossoms represent the fleetingness of beauty.
This place is not in the Middle East; it isn’t in the Far East. It isn’t on a timeline that historians can lay out and ask for on tests. This place is a one to one connection between Eternal and Mortal realms, in which each knows itself to yearn for and trust in the other.
I know there are many others who feel the same longing, which is why I bother to share. But as my partner sleeps longer and longer hours and my care-giving obligations grow, I need a religion that wants to take care of me, to reinforce its sense of my place in this larger realm.
Well, that’s it for today’s whining. The good news is, we had a weigh-in yesterday,and Lynne is back up to 140 pounds. The bad news is, her chorea is starting to fight back against the miracle drug we depend on to keep her going. We’re going to look into physical therapy, but we can’t deny that Huntington’s Disease remains fatal. Is it time to be grateful that we had this last good year? That we refuse to concede.
I remember the first day the State of Vermont paid me to take care of my partner, with her sometimes-mild-sometimes-totally-scary disability.
On the surface, nothing changed. For two years I had been doing these things because I love her and I want her to have the life I believe God wants her to have. That does not mean miracles, it means human relationship and basic work, reliably delivered, and fully made use of by the recipient.
But what a feeling to get paid! No more putting aside something vital at home for a few hours of minimum wage reimbursement and cheerful conversation with people who do not have Huntington’s Disease. No more walking back into the house exhausted and seeing everything I had left behind.. and now I’m too exhausted to do it
No more feeling guilty toward Macy’s, my former employer, for having to call out when she’s too sick, for showing up late after squeezing in just one more little task, for declining to cover a sudden opening that takes experience and skill, in a specialized department.
No more struggling to shoe-horn into my over-packed schedule the leisure and family activities that reward her for doing all the work she does to live at the unprecedented front curve of disease management she has achieved.
It was a happy day. I dressed in good clothes, just to clean, cook and shop. I’m old enough to remember ridiculing the 1950s tv moms who wore heels to run the vacuum. Now I knew how they felt: like them, I was lucky lucky lucky to be able to make a good house for the person I love.
I remember that feeling every time I encounter socially conservative families getting more and more hysterical about the rights of unborn children, the sanctity of pregnancy. Here’s the latest.
From my rarefied vantage point as a professional caregiver for a loved one, my heart goes out to those folks every time one of my lefty friends brings another such outrage to my attention. We used to talk about “dream interpretation.” Nowadays, I watch the news and work on the new art of “scream interpretation.” That’s what I’m working with here.
Scream interpretation tells me that all this talk about protecting children is less about abortion and more about mothers and fathers who worry about caring for their children. Today I walked past my local Roman Catholic church. My parents live in an affluent parish, and some of the young mothers were joyously planting flowers around the huge churchyard. Inside there was a class preparing for First Communion, but not one of these women was pregnant. They were slim and fashionable. The contraceptive ship has sailed.
So what’s all the screaming about? The hysteria about sanctity of life, about motherhood as a worthy mission? Even — bless you, Rick Santorum — about a father’s desire to cancel a day of campaigning for president to be with his wife and well children while the baby of the family fights for life?
I think these folks are actually wishing that they could feel the way I feel getting paid to take care of my partner. Sure the affluent young mothers can plant flowers on a Wednesday during school vacation. But most young families don’t have that kind of affluence anymore — or if they do, they’re not sure how long it will last. And every time they send a sick child to day care, every time they leave a 10 year old minding a 3 year old, every time they turn a sick infant over to a grandparent instead of sitting by the bed until the fever breaks — every time that happens, these young families feel insulted. They are being denied their American Dream, by a nation which no longer even offers a language to describe it.
Leadership on the left has to stand up for the language of paying for the job most women want most: caring for their family in times of need. Step one, of course, is calling out Rick Santorum on his hypocritical gambit of using Pennsylvania public school funds to pay tor his wife to provide homeschooling in Virginia. If that’s not a “mothering allowance,” I’d like to know what it is? And naturally, since some folks are dramatically overpaid in this nation, I’d put a solid ceiling above which you don’t get this cash.
This is all I can come up with, because most Americans, of any political stripe, have demonstrated their belief that more children — unplanned at best, unwanted at worst — are not what they really want. They prove this by using contraceptives. But so far, the right has given the only language of family sanctity tat most Americans have ever heard. And every time liberals rebut them with our own scream of fear, that women will be driven out of paid employment, the hearts of caregivers explode with the pain of having been misunderstood.
Our positions necessarily speak the hard truth that not every potential child will come to life. “You could choose which ones to kill, and keep some other,” we smile. And their hearts scream in agony: “I am killing them already every day! It’s in their eyes when I leave them at day care. It’s on my mind when I leave them unattended. I am killing them every time I’m not there to make a healthy meal, walk them to school instead of dropping them off. I am killing them every day — and I hate it.”
Other countries give their family caregivers several years of paid support for doing what all of us agree is hard and complicated work. Some of these countries are developed already, but others use this as a fast-track to development because kids who have parental nurture make better students, employees and citizens. I learned about this not in Europe, but in Singapore: it was part of the “Little Tiger” era.
In today’s political climate, talking about pay for caregivers has a civic benefit. Money is how we demonstrate that something has value, how we honor an action or output across different subcultures, languages, races, even state boundaries. This is not an issue of race, of “language spoken at home,” or “where your parents were born.” This is all of us saying to all good parents, “Your children are the future of my country.”
Unless I’m a total freak, I believe that paying other caregivers as I am paid will release huge waves of tension throughout our national body politic.
Teachers will be able to teach, knowing they there is someone to help with homework, meals, routinized scheduling.
Employers in the larger economy will be able to pay those who serve or produce their product in accord with what that product or service can put back in the cash register.
Public safety officers will have allies to help implement corrections or protections that take care of our most vulnerable.
Why should taxpayers foot the bill? We pay everyone who takes care of our country: the soldiers, the law enforcement officers, the inspectors, the infrastructure builders, the teachers. And yet, who does more for our country, for any of its component parts, than parents who have the time and resources to take care of our families?
That’s how I felt the first day I got paid. I want that feeling for everyone who’s doing the work of child-raising and elder-caring.
Last week at Universalist National Memorial Church I preached the importance of Universalism as a guiding theological principle. I emphasized that when we evangelize this message, the enemy is not Christianity, or atheism or any other religion, but something our founders called “partialism,” Part of humanity is saved, part of humanity has some ability or capacity to order around the other parts of humanity…
I mentioned that I live in the home territory of homegrown Universalism (as opposed to the Universalism that George de Benneville brought from the scaffolds of France, that James Relly and John Murray brought from the debtors’ prisons of England), we have a US Senator (not a UU) who calls repeatedly for Single Payer Universal Access Health Insurance for all Americans. The point, I said, is not how you feel about Universal Health Care, but the fact that he is not afraid to use the word.
In reality, as I am sure the congregation surmised, I strongly support Senator Sanders’s plan to simply expand Medicare to cover everyone.
And yes, it IS a religious principle. We UUs have been on record about this, through our General Assembly Resolution process, since the 1970s. So to advocate for it in this regard, let’s learn from our Universalist offshoot, the Latter Day Saints, and our modern-day offshoots, the radical individualists.
Here’s how the Latter Day Saints hand out salvation: they have high walls for getting in, but once you’re in, that community cares for you big time, with large financial outlays. They pay no clergy, but carefully choose the layfolk who understand that pastoral care costs money. Who manage that money and hand it out. And every Mormon understands that as you have received, at other times so shall you give. That is one reason they push private enterprise and profit: they want to take care of their own.
Therefore, since Congress shall make no law establishing a religion, if any individual or religion wishes to provide medical services, they are free to do so. However, at the moment they choose to be guided by their principles, they give up two rights: one, to monopolize any aspect of medical care in any community, and two, to receive government income for services they provide or receive.
In order to give every institution and individual the means to make a free choice about not using the government system of Universal Access Single Payer, every individual will have a day to read a detailed list of what they are giving up, including government reimbursement for any emergency service they receive unexpectedly. When they sign this contract, they receive a card — just like an insurance card — which informs any medical provider outside the system they chose — how to access their wages, bank accounts, retirement accounts and physical assets, such as their homes and houses.
There will, of course, be annual Open Enrollment periods, in which these folks can change their minds. Every contract to forego government insurance will be subject to the three-day Think It Over rule.
Every child is automatically enrolled in Single Payer Universal Access for life-threatening medical emergencies. Every adult will sign as an individual; even two spouses in the same marriage.
The nice thing is that this plan takes state budgets and legislatures out of the picture. And it doesn’t take out private insurance companies, who want to cherry pick their customers and give them more. But it does make clear that when it comes to health insurance, as in government, we shall be what Theodore Parker described for us: of the people, by the people, for the people.
Medical science has reduced the burden of Lynne’s Huntington’s Disease expressions when she’s awake and active. One medication lets her sit still, stand with balance, walk freely, etc. This is more than cosmetic, as muscle spasms in throat and heart are major killers in the HD collection. Other meds manage the anxiety and depression which still sends so many folks suffering with HD into isolation or suicide. And a return of capabilities further lessens these negative tendencies. All of this gives joy to those who love a person with HD, and hope to the families who know it inhabits their genetic profile.
But a heavy medication life means lots of extra sleep. When she’s up and doing, her body is a war zone between the disease on the one hand, and her intentions and her medication allies on the other. For the first year, she chose the “one quality event a day” pattern, but lately, she’s been pushing herself to stay awake all day on days which have scheduled quality time. That means on other days she sleeps around the clock.
It’s easier for me to do other things on days of getting up and taking naps. These days when she sleeps all day scare the hell out of me. My intellect observes that this is high quality sleep, with lots of deep stillness. What a joyful experience for her body, to be free of the chorea. She is putting weight back on after last year’s crisis, and one reason insurance buys the incredibly expensive anti-chorea medication is precisely this, to let the body absorb more calories than it burns. Spiraling weight-loss is another way HD kills, and it turns out to be a side-effect of the chorea, rather than part of the digestive tract anomalies, what a boon.
But as good as this deep sleep is for her, it scares the hell out of my loving heart. All day long I hover nearby, searching compulsively for the expansion and contraction of life in and out of her beautiful torso. At the depths of her stillness, I sneek little pulse-checks on her outstretched wrist, as lightly as my anxious fingers can manage.
This anxiety completely saps my ability to focus on reflective writing and ministry when she’s sleeping. There, I’ve said it. Am I sharing the joy of her body’s good day of healing? Yes. Am I unable to delegate my hopes to the bottles rattling through that drawer of her dresser and head comfortably for my computer? Yes again.
These are contradictory impulses that totally rule whole days of my life, week after week. And I can’t even figure out what kind of goal I should have for resolving the tension.
For many years, on a day appointed long ago by holy men watching the moon and adjusting their calendars, I used to join a small number of other persons in the small back room called the Vestibule at King’s Chapel. First we would hear the gospel description of Jesus washing the feel of his disciples as they gathered for what would prove to be their last communal meal. Then, slowly, silently, we would wash each other’s feet.
It wasn’t really a deep cleansing of the feet, but the nakedness and water made it intimate. You would take off the sock and shoe of one foot — this was, after all, a ritual — and when your turn came, hold that foot over the basic placed on the floor in front of you. The person whose foot had just been washed would be the person who had put it there. She or he would kneel next to it with the pitcher of tepid water, and pour that water over your foot into the basin. With the other hand, there might be a bit of massaging, but I don’t remember there being any soap. Then the washer would put down the pitcher, take up a towel, and dry your foot. As she or he returned to their seat, you would rise, kneel down in front of your own neighbor, who would extend his or her foot for you to attend to.
Over the years, I saw many feet this way. Some had horrible bunyons, some were veined and grey. Others were fresh and pedicured, and some had callouses or whatever. Whatever it was, you washed that foot.
Those memories came back to me this week, as my roommate, who is afflicted with Huntington’s Disease, requested my assistance in taking her bath. Up to now, she has been independent about this, and the slow deterioration of her bathing has troubled us both. I don’t know why I decided to wait until she asked, once I accepted that the day was soon approaching, but so it was. Jesus had told his disciples he was going to wash their feet, but in this case, I felt it was the washee and not the washer whose dignity was at stake. In any case, my hands knew how to pace and temper their work, because of the training I had in that Vestibule.
There are many other sacred baths that flit across my memory screen as well: washing my feet and hands to enter a newly-built mosque which was open to heathen neighbors before its dedication; a wonderful description of taking a mikvah that came in some long ago New Yorker, struggling to keep my feet pointed down in Bangkok, lest the soles inadvertently offend; washing the nephews, now fully grown, who were somehow always delivered to auntie in need of a bath; watching a bird splashing the other day in the puddle which has taken up residence at the foot of our driveway in this floody, muddy Vermont spring.
I am not talking here about baptism, that radical cleansing by which we hope to be made new. This is about the sustainer God, often portrayed as a goddess. The one who helps us keep order as we slog along life’s long middle journey, neither at a beginning or at an end. The one some of us reach out to by doing laundry when everything falls into chaos.
It goes without saying that footwashing at King’s Chapel has an element of radical social justice. I became aware of it in the 1980s, when AIDS was wreaking havoc among gay men we knew and loved. Indeed, as that sad 30th anniversary pops up in the news, I remind myself what a gift those men gave to my Christian faith, in their washing, feeding, visiting and mourning of each other. They exhibited simultaneously a strength not associated with the old stereotype (have young folks even heard of the “limp-wristed” insult?) and a tenderness not associated with testosterone. They put aside the questions of creation and redemption, looking simply to the sacred tasks and images of sustaining.
And if a person with HIV/AIDS was sitting next to you, that was the foot you washed.
For many UUs, to have a person of color extend their foot over that bowl would radically invert the assumed social order in which we, the moneyed white folk, get washed by darker hands. For UUs of color, to have white hands reach out to bathe and dry your foot is to finally experience integration which goes beyond the mere sitting together at careful distances. For UUs of Islamic or Jewish background, to see our Christian background share sacred bathing is to find a space where all our ancestors are one.
If we, as a religion, are to every again grow and prosper — an open and difficult question — it will be because we assemble, from all the world’s traditions, all our sources of imagery, history and hope, a new cultural language of pastoral care for each other. A language which assumes both illness and energy, every continent, any language, any faith at the ancestral Thanksgiving table. And then, remembering that we covenant to serve each other as well as God’s world, we bring these gestures into a more intimate version of what has been a stand-offish way of worship.