Outside the Circle

Cindy Milstein

The Light Held Within Thin Silences

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I stumbled across a phrase the other day that struck my fancy: a “thin silence.” The definition given was this: “a silence, but not a thick and solid one, rather one that is of such veil-like thinness that the Word shines through it.”

I’m quoting from Martin Buber (1878-1965), a European Jew of an anarchistic bent, although more well-known for his “philosophy of dialogue.” And oh do we Jews, at least within the Eastern European Jewish peasant-immigrant circles of my relatives, like to dialogue, to talk, to savor and play with words. Or to put a spin on it, we appreciate “the Word,” not as in God’s word, which Buber likely was referring to, but rather words as “the Idea” (to hark to an early definition of anarchism): as ethic.

I think I heard the beauty of thin silence on 5/16 at 4:16 p.m. two years ago, when my dad brought air into his lungs, oh so slowly, and then . . . thin stillness. Almost more than anything, he loved to talk and dialogue, schmooze with anyone who would listen and engage, and pun with language in the most intricate of ways.

For nine months before he died, he couldn’t talk; a mechanical breathing tube kept him bound to bed.

For about six of those months, after a different person emerged from his initial coma-esque existence, he could frenetically, frustratedly, inadequately spell out letters on a crumbled 8.5 x 11 sheet of paper with an alphabet printed on it.

I never understood why the nursing home where he “lived” those last six months — basically, a money-generating warehouse for the dead who weren’t allowed to die — didn’t give him a new uncrumpled sheet, until I tried one day. He just as frenetically clung to his original, as some security blanket I couldn’t understand.

Maybe it was because his whole world had narrowed to that life line of an alphabet card, his only way of dialoguing. It was accompanied by another voice — a radio I’d set up for him, turned on nonstop, tuned to his favorite classical music station. And a box of tissues and, if I recall, some chapstick — items he could somehow manage to grasp to keep his “voice” clear of either tears in eyes or chafing lips.

These little bits of big bits of his new nonlife were laid out on one of those fake-wood hospital tables that swing over hospital beds. And he had a window that looked out on a bleak area of grass that he couldn’t see, and a bird feeder that he could. So I kept that feeder filled to the brim, fattening up squirrels and birds alike, because it was the only piece of this paltry “home” that made his eyes smile, a thin silence that spoke of his love for nature and “simple joys” that he took great joy in, or as he’d called it for years when he could yap for hours: “a sense of wonder.”

Toward the end, a cousin figured out a tablet version of an alphabet card, which once he got used it to, calmed his “communication” ever so slightly. But he was never able to dialogue, and mostly there were thick, horrible silences between him and myself in particular, because he looked to me, his power of attorney “daughter” who’d always been his parent, to help him decide — really, to ease him into the decision that he and I knew he needed to make — between two existentially terrible options: stay “alive” in this nonlife, or go to a hospice to live qualitatively until his body let him go.

In this process, over too many months, he repeatedly spelled out “cruel and unusual punishment,” and wanted me to get a lawyer and a copy of the US Constitution. He was convinced he was being held against his will, which for all intents and purposes was true. He “whispered” to me on his alphabet card “T-H-E-Y-L-O-C-K-T-H-E-F-R-O-N-T-D-O-O-R, which was true, too. There was Alzheimer patients there on one wing; on his wing, he was the most alert, though the West Nile had made him half impatient kid, half still my too-fast, too-smart dad. Everyone but him went unvisited, lay unmoving, bound to tubes and unconsciousness.

When I finally relented and brought him the Constitution, which in hindsight I should have just done the first time he asked, he took a quick look and tossed it aside. He always wanted to “keep options open,” and being released from his bodily imprisonment via legal means seemed an option to him — unless he read the document. Then he finally believed me: cruel, yes; unusual, yes; not punishment, though it feels like it.

I spelled out his other options, because that was how I helped to patiently and slowly — more patient and slow than I’ve ever managed, out of a kindness I never imagined I was capable of — move him toward the decision that was right — hospice, death with dignity, even before he could spell it on his tablet.

Because for months, I watched him first laboriously spell out — with the one hard-to-control hand that was left to him from the stroke-like condition– letters that turned into “S-U-I-C-I-D-E.” My mom was with me that time and she never fainted. She got dizzy instantly, blaming it on her terminal cancer. I had to say, again and again, “Yes, I imagine you think about suicide. But no, not suicide. Hospice isn’t suicide. It’s letting your body decide naturally whether it can live or not.” Or something along those lines. But “suicide” reoccurred on other visits, morphing later into “I-T-H-I-N-K-A-B-O-U-T-D-Y-I-N-G,” and then him asking me to be nonjudgmental and write down options that he wanted me to check out: that Constitution; second and third doctor opinions; and then hospice.

Constitution. Check. Negative.

Second and third opinions, though I already knew. Check. Negative.

Mandatory visits to the two potential residential hospices, even though I’d already visited them. He wanted brochures, so he could read them and “talk” to me about the options.

But when I returned, brochures in hand, he spelled out, “W-H-I-C-H-O-N-E?” I already knew: a hospice set on 22-rural acres only about 2 miles from the longtime house that he and my mom called home. I could make that hospice room homey; the hospice was willing to make up a double bed of sorts, so my dad could get his wish to sleep next to my mom for the first time in nine months. She was, after all, the love of his life from day one to day end.

Finally, frenetically, he wrote: “H-O-S-P-I-C-E-!-N-O-W-!”

It took me 4-5 horrible days to make “hospice! now!” work out. The last of the 4-5 days he nearly did commit suicide, twice (coughing up and nearly choking on the oatmeal-like liquid that was his only food for that 9 months), because the nursing home messed up, so he had to wait an extra day there. I’d watched him psych himself up to die; I could only remotely begin to imagine what it must be like to think, “Tomorrow will be my last day,” and then have a cold administrator make a silly mistake and cruelly not allow it to be rectified, even though we’d found a solution to get him to the hospice on schedule.

For those last few days in that hellish nursing home, I oh so slowly held and stroked his hand, telling him how beautiful it would be when he and my mom were reunited; how he couldn’t or shouldn’t think ahead, because one never knows. We never knew, or thought, in a million years that a tiny mosquito would bite and ultimately kill him via a climate-catastrophe-produced uptick in West Nile Virus, right? I spun lengthy stories, told calmly at the slowest of paces, of how wonderful the hospice would be. He didn’t want me to call it that, so I stuck with its name: Stoneleigh. He fell dreamily into envisioning what seemed a vacation at Stoneleigh: a lovely, intimate 8-room “lodge” with 24/7 caring community, and deer, flowers, birds, wild turkeys, squirrels, stars, quiet all outside his door, and my mom and us with him. And he’d get to taste food, even if only in little samples. It would be just like when we were growing up, camping or renting farmhouses for summers in Vermont.

Once at hospice, it was vacation. Pain, suffering, and even death seemed to take a holiday. So it was with a relief that I watched him journey gently, on his own terms, in his own good time, into the thin silence of death — over eight days in which it was clear he, my dad, was at long last about to “shine through.”

I’ve felt compelled to dialogue about death a lot since both my parents took ill one day apart from each other in August 2012, and then both died some 4 months apart in May and October 2013, respectively.

It is a personal choice to look death in the eye but also a philosophical one, because I know that in creating space — at least in my own heart — to contemplate the veil of death, it opens up all sorts of ethical questions about quality of life and death, suffering and the amelioration of suffering, care and caring. It helps empathy to shine through, and so we are perhaps, hopefully, better able to accompany others through death, through life.

Mostly, in making death and loss, cycles of life, visible, I think we shatter the total silence that this society seems to have mandated about something that will touch and happen to us all, that is a part of life, bound up in life.

Two weeks after his death, two years ago, I wrote a piece called “Bound Up in Life” (https://cbmilstein.wordpress.com/2013/05/31/bound-up-in-life/), remarking — marking — how my dad’s love of words was, in essence, of a love of humanity, an ethic of kindness, in the most egalitarian of ways. He, like all us humans, was far from perfect. He annoyed and angered the hell out of me at times — many times. And we both knew how to argue, so it could be unpleasant.

But his schmoozing did the world some good. It did me a lot of good, too.

In respect of my dead, my dad, with love❤

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(Photo by Cindy Milstein, cherry trees at Stoneleigh Hospice, outside the room where my dad died, East Lansing, MI, May 16, 2013, 4:16 p.m.)

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This entry was posted on May 16, 2015 by in Dispatches from Life.
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