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  Home > Blogs > Cindy Milstein

Bound Up in Life

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Three weeks ago, I picked out this little black-red-speckled rock from a pile of rocks surrounding a little pond filled with black-orange-speckled koi. Across the little pond from me, through an open glass door, I could see my dad, minutes away from a drug-induced slumber, lying in a bed, surrounded by 2 of my sisters, my mom, and the empathetic head nurse of the most stunning, caring residential hospice one could imagine.

Five minutes earlier, when I was still in his room with him, he'd become agitated knowing, I think, that his falling asleep would mean the removal of his ventilator -- his "life's breath" this past 9 months of West Nile Virus nonlife. He spelled out "17 seconds until vent removed?" to me, and I told him "no." Just relax. Just enjoy. It will be all right.

I was the point person (power of attorney, they call it) for figuring out the details of this last fully conscious 24 hours of his, in a place where those past 24 hours were the best of the past 9 months by a long shot. Beautiful hours, under any conditions. I'd already decided that he shouldn't know the exact timing of when the hospice staff would gently ease him into sleep, and then gently turn off the life-support machine. I didn't want those last few minutes to be filled with anxiety and dread. I'd already seen what that existential panic had done to him a couple days earlier, at the inhumane nursing home where he'd been housed for the past 6 months, when a paperwork mess-up meant he had to stay there 24 hours longer: he almost choked to death with fear -- twice. He knew what was happening now, in the vacation-like setting of this residential hospice, surrounded by nature and warmth, family and friends, amid a 24-hour celebration of what he'd meant to people. The precise instant seemed unnecessary.

So as he began to get agitated nonetheless, I decided to leave the room, hoping he'd think that this wasn't the moment. I went outside, to this pretty little pond, and crouched down by the water, leaning over to touch its soft coolness and watch the glittery koi swirl in their liquid home. I looked up, across the short distance, at my dad, and he smiled a big smile and waved. That's my last memory of him conscious. I looked down again, noticed the rocks, in grays, whites, silvers, pale pinks, dusty blues. And the little black-red-speckled one that I picked out -- picked for another moment that I thought would come within the next hour.

But when the charismatic, kind-hearted head nurse turned the ventilator off, and instead of its mechanical sounds we could only hear birds chirping in the flowering red tree outside my dad's open door, beyond his bed, where he seemed to be sleeping so peacefully, it was all of us who held our breath -- not him. My dad kept going. Death really did take a holiday. He took one. For 7 more 24-hour days. (I wrote about that in another piece, in what now seems a dreamy "other" time-out-of-time: http://cbmilstein.wordpress.com/2013/05/13/taking-his-own-good-time-to-die/).

Two weeks ago, on 5/16 at 4:16 p.m., my mom and I stood around my dad again, she stroking his arm, me stroking his forehead, and he slowly, gently, almost imperceptibly breathed his last breath as we said, almost like an incantation, again and again, "We love you." We held our breath again too. But when we finally exhaled, he didn't join us.

Some 5 minutes later, I walked outside, across to the pretty little pond, and set my little black-red-speckled pebble down on a big sturdy rock, nestled on the shore of this tiny pond. I'm a godless Jew, but a Jew nonetheless in certain ways, and one of those ways is putting stones on graves, or stones -- in this case -- as a marker of how we're all bound up in life, of how memory persists, like stone, in a more permanent way than most other things -- like things, for instance. As my mom commented a few days ago: When she watched my dad, her husband, die, she realized that all we have is each other, our relationships and love.

After placing my stone, I walked back to my dad to sit with him for a while in what had been his 8-day home on 22-acres in an 8-room residential hospice, a place where death happens in the commons, amid the cycles of life right outside one's window, and that's an extremely good thing. As good a death as one could hope for.

I've been wanting to scribe so much about it, from a politico-personal perspective -- including the raw ugliness that marked the time just before he got to the hospice (the time of capitalism and what it does to any notion of healthy care) and the promise that hospice as concept offers to remake death into a part of lives worth living (a time that points past capitalism). Yet witnessing death firsthand, much as it was also a relief after all my dad had suffered; dealing with the bureaucracy of death, relatively minimal as it is in this case, since my dad donated his body to Michigan State University to help teach hundreds of students about anatomy (with the wish that his ashes later be spread, together with my mom's ashes when she dies, on a commons in Vermont, but that too is another story); attempting to clean out and close up my folks' longtime home; and continuing to help my mom -- all here in Michigan, where I've been "temporarily" residing now for over two months and will be for a while longer -- haven't been conducive to writing, much less communicating outside this little world I'm in. I keep thinking I'll "find time" to process, and especially to reach out to the larger world of friends and what I care about, but I'm still needing to keep my nose to the grindstone, and not a pretty black-red-speckled one. There's too much to do in this sickness and death business. I hate capitalism so much more than I ever did, if that's possible. It makes any sort of health and wellness, good life and good death, near impossible. Numbness is about the best I've been able to muster for myself these past 2 weeks.

On this 2-week anniversary of my dad's last breath, more and more it seems that a little rock is fitting remembrance rather than some big monument. I've been going through mountains of my dad's papers, tossing most of them out, in the process of emptying out my folks' home, and time and again I'm reminded of two things.

He was really bad at achieving "success" within hierarchical institutions and bureaucracy, though he tried hard; he thought they were the way to help the world, in a social democratic sense, and he wanted to do good, even if it wasn't the same "good" that his anarchist daughter envisioned (the source of many not-pleasant arguments between us over the years).

How he actually did good, though, in numerous unsung mitzvah after mitzvah, acts of human kindness, was by always seeing the good in what might be called "the little guy": the waitress, the auto mechanic, the newspaper delivery person, the grocery store clerk, a neighborhood kid, and on and on. My dad would take time with every "ordinary person" he met to first ask their entire life story, listening attentively, and actively engage with them about it in detail, and then believe in them, that they could be so much more of who they wanted to be, or didn't believe they could actually become. He believed in them. He'd then spend hours helping, say, a gas station attendant with advice, encouragement, and tangible assistance to figure out how, for instance, to go back to school to become a nurse. This, again, was often the stuff of annoyance to me. He talked to anyone and everyone, and always asked, "How late are you open?" when we stopped at any store or restaurant, even if we'd never ever be returning. What I now realize is, he didn't talk to anyone and everyone; he focused on people who get overlooked, who go unseen and unbelieved in and without encouragement. The "How late are you open?" was one way to start a conversation -- that, or a Jewish joke, one of his favorites that I'd likely heard way too many times before (a further annoyance to me!). And a bunch of times, he did indeed help people.

Such kindnesses, speaking from the "Who are you?" and really caring to interact with the answer in a nonhierarchical way, end up having ripple effects, the legacy of stone upon stone upon stone that binds us to life and each other.

That's what my little black-red-speckled rock recalls best about my dad.

* * *

If you’ve run across this blog post as a reposting somewhere, you can find other blog-musings and more polished essays at Outside the Circle, cbmilstein.wordpress.com. Share, enjoy, and repost — as long as it’s free as in “free beer” and “freedom.”

(Photo by Cindy Milstein, Stoneleigh Hospice, Lansing, Michigan, 2013)



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