(A brief reflection presented at this morning’s service at my Unitarian Universalist church on the month’s theme of “Grace At the End.”)
It was my great privilege to accompany two people to their deaths from Lou Gehrig’s disease in my years as a Hospice volunteer. Their temperaments and response to their disease couldn’t have been more different.
Diane approached it with a kind of equanimity and a retained sparkle in her eyes, which were about the only body parts she could move anymore as the disease robbed her of all other bodily function in the surpassingly cruel way that it does.
Mike fought it all the way, refusing to go gently into that night, sticking up for himself to God and vigorously dissenting from the fate that would spiral him down to death at not even 40 years old, father to two young children.
The two of them put me in mind of that book title: “Grit and Grace.” Mike the grittier of the two, Diane the more graceful. But then I think that’s only a surface distinction, really, and that Mike, in his own way, had grace to burn, and Diane was hardly lacking in grit, Lord knows.
Binaries never do justice to the knots and thickets and marvels of human personality.
One response to their disease they did share in common: Both decided to end their lives willfully by forsaking any more food delivered through their feeding tubes. And then, when that was taking too long, they signaled their desire for the more painful but speedier option of refusing water. What might have taken a week or two longer now saw their end come within a couple of days.
Classical definitions of grace center around the freely dispensed help and “unmerited favor” of God, but it is hard to wrap one’s mind around any favors bestowed by any gods when witnessing the wasting away of human life via a horrid disease.
But if we stretch the theological construct of grace in that UU way that most of us do, we might yet see a different kind of grace. Not one dispensed by a Supreme Being, but instead the growing, from within our deepest selves, of a fierce humanity, insisting on its absolute sovereignty to control its destiny to the degree it can.
Robbed of their freedom to move or talk, both Diane and Mike grasped the only thing they were still capable of grasping: their right to determine the terms of their exit from this world.
What could more reflect UUism’s First Principle of the “inherent worth and dignity of every person” than that?
What more powerful help and “unmerited favor” could the gods dispense than to give them this final choice, so they could be free at last, great God almighty, free at last?
A few days before her end, Diane had her head completely shaved, and she donned robes that gave her the appearance of a fierce Buddhist monk, a warrior dressed for her final sacred battle.
Mike grew quieter and finally more at ease, the last piece of his fate self-determined, his final answer and rebuke to the God he had raged at early in his disease. He, too, a warrior till the end.
Spending a month on grace as we are, we see it has many meanings and shades. For me, not believing in any external God as a being who acts on people or history, I cleave more to grace’s roots as an ever-present reality deep inside us.
Grace is when we come to accept ourselves fully as the flawed-persons-but-beautiful souls we are, accepting fates that we can’t control while still creating our own fate where we can.
Free within ourselves, we don our robes of glory and, in the poet Theodore Roethke’s words, our “garments of adieu.” And we note an excerpt from a Mary Oliver poem I read from this very pulpit many years ago now, in which she had curled up in a tractor tire to join a fox where it had gone to die:
But what happened is this—
when I began,
when I crawled in
through the honeysuckle
and lay down
curling my long spine
inside that cold wheel,
and touched the dead fox,
and looked out
into the wide fields,
There was only myself
and the world,
and it was I
who was leaving.
And what could I sing
Oh, beautiful world!
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Having just last night received the news of yet another good friend with a cancer diagnosis, I am struggling (again) for the acceptance that illness and dying and death are just as much a part of life as pregnancy and birth. As in every stage of life and, in fact, woven through daily life, we are offered many choices with how to proceed and respond to circumstances. Sometimes our choices come down to being limited to our emotional response (which it seems is actually not so limited), which calls to mind one of my favorite phrases of all time: simple, not easy.
I have skated on the edge of this canyon as a very sick person, and better-living-through-chemistry has allowed me some more years here, years that I am increasingly using to walk this path with other sick friends, and also continuing to walk the path when some of them have died. And friends have choices to make too. Choices about how and when to show up, how to deal with our own sadness and scare, how to truly help. Learning what doesn’t help, for this person, but is just the ticket for the next friend in the seemingly same boat. Because it is and isn’t the same boat, oh yes, we all have our very own, full of nightmares and joys, memories and hopes.
Though it sometimes feels like it in this world, no one is standing around with a gradebook recording how gracefully you moved through an illness or what sort of friend you were to your sick friend, how you deal with your scare and grief. Humans are messy creatures, and there can be a lot of raging, wailing, railing and gnashing of teeth that ensues before we can clear the decks to find that gem of grace. No black marks given for clumsiness or missed steps. There is only trying to determine and move toward how you want to be as you dance with a tsunami, what you want to give, and the deep listening that is sometimes required to discern the path ahead.
Simple, not easy.
Andrew and Mary, thank you both for your words of wisdom. Katie and I are witnessing a struggle with another beast, dementia, in both her mother and her mother’s husband.
Their story was sweet at first, meeting again for the first time in 50 years at their high school reunion, having recently lost spouses to cancer and marrying within a year. In the last year, both now 88 years old, their story has acquired some bitterness: Keith’s dementia has manifested as paranoia, becoming frankly psychotic during his two recent hospitalizations. Mary’s has manifested as shame, anger and abusive language towards many who try to help her get dressed, or showered, or cleaned up after an episode of incontinence. They were/are wonderful, kind and loving people who are no longer fully themselves.
The grace I experience is the way so many caregivers treat them with dignity, respect and love in spite of their severe limitations and obvious foibles. It is impossible not to be frustrated and at times even angry with them. But I am moved by those caregivers who seem to see them as fellow travelers, another version of ourselves in different circumstances who perhaps once upon a time and one day again will have perfect wings.
Thank you, Mary & Al; these are the human stories that both underlie and far transcend any theological constructs. Basic human kindness: how simple, as Mary says, but, as Mary also says and Al confirms: often not easy.
Most all of us have known circumstances in which people are no longer themselves. And Lord knows, in given circumstances even I am not “myself,” or at least the Self that I aspire to be and sustain, instead giving way to temporary fits of anger, resentment, momentary insanity, the whole shootin’ match, that leave my best Self, my better angels, behind. Who doesn’t, on occasion, reflect back and ask, “Who was that person who said that and acted that way? Me? Oh nooooo!”
But we recover, as, amazingly, people even in Keith and his wife Mary’s circumstance do for certain periods of time, restored to their “Self” that we we have always known, until whatever brain chemicals get ignited once again and they sink into the alien self their condition dictates. In that sense, dementia is an even crueler disease than Lou Gehrig’s, inasmuch as it strikes at the very core of who a person is, rather than just the body housing that person.
But yes, the kindness and patience of people who choose to help, to “show up,” patiently, lovingly, consistently—whether a paid employee in a facility or a friend who doesn’t stop at sending a “supportive” text message or hug at the memorial service but continues to reach out, check in, make a coffee date, or in a facility, does not turn a blind eye or cold shoulder, or worse yet, even abuse dysfunctional, demented elders—is something to behold. What could be more grace-full than that?
I’m much more interested and impressed by the continuing grace of human beings than by any fanciful notions that a God who makes a world with Lou Gehrig’s disease and dementia also redeems that world by accepting and forgiving the flaws of its human beings. But as a model or metaphor for how “grace” can manifest in and for ourselves, it works for me.
Thanks again for these graceful reflections!
This post comes at an amazing time – I just returned home from singing at the bedside of Liz, a 61 year-old woman at the threshold of life. I do not know her – I sing with others at bedside when requested, when someone is near death. Liz had not been alert for quite some time; her family welcomed us warmly and were so appreciative.
After the three of us sang a few songs, Liz’s husband opened his bible and asked to do a reading. Well, this had never happened at a sing! But of course, please read. The family is very devout Catholic, and this made so much sense. He did read – about reaching heaven and seeing the mansions. After that I moved us to two Catholic songs in praise of Mary, then started Amazing Grace. The whole family joined in, in full voice – and Liz was suddenly with us, eyes open, alert, full of light and singing along. The family feel they witnessed a miracle; the room was full of wonder.
It lasted a minute, and if I were ever to have a religious conversion, it might have come here.
It was hard to put words to it, as I drove home afterwards, having finished the sing with some sweet songs of keeping watch, and sweet dreams.(I may need to add the song you included…) So how wonderful to come home, open up your blog post, Andrew, and read about Grace. That was it – I witnessed a moment of inspiration and grace. I am still traveling on another plane, transported by life and by death.
Your words, and Mary’s, and Al’s – met me right where I am, right now. I can’t thank you enough! Possibly two moments of grace tonight.
Beautiful thoughts, even more beautiful scene you describe, Jeanette. Grace, transcendence, miracle, peak experience; all words to describe moments of such intense engagement as to often defy words altogether. Probably the most frequent question I was asked during my Hospice volunteer years was, “Isn’t it just sad?” Usually followed by “I don’t see how you do it.” Well, one of the things it is when people die is sad, but it can also be profound, enriching, even joyous at times (especially when one is in a helping/service role), with souls laid bare, full of appreciation and deep love for the life passing away.
What a gorgeous anecdote this is, the dying person responding to a song (melody is the last function or faculty to go, even in dementia, I have been told), and the fact that it was “”Amazing Grace” in this instance—oh my my my…
I am so happy you got to experience this: the deepest kind of spiritual-religious experience shorn of all dogma except human communion around the universal religion of music. Dealt with this topic and Dvorak’s “Goin’ Home” six years ago now, in the very earliest days of this blog; with the song courtesy of Paul Robeson; you will enjoy it, I think: http://andrewhidas.com/music-as-truth-thoughts-on-goin-home/
Thank you very much for this, capped off my night!