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Friday, April 27, 2018

Hospice update

Update: Danielle died at approximately 9:25 pm.
It was peaceful. Thank you all for the outpouring of support.

Above, March 27th. Below, today, one month later.

An all-day bedside vigil, Cheryl, Keenan, and I rotating in and out. Time looks to be drawing short.

A friend, one of Danielle's board members at her last job, sent us this book.

Wish I'd had it a month ago.
In the final hours, days, or weeks of life, dying people often make statements or gestures that seem to make no sense. Family members or friends may say, “Her mind is wandering,” or “He doesn’t know what’s happening now.” It’s not unusual for an onlooker, however well-meaning, to speak of the dying person as “out of it” or “losing it” or “not quite right anymore.” Healthcare professionals, especially doctors and nurses, may label these apparently illogical expressions as “confusion” or “hallucination.” 

Family, friends, and professionals frequently respond with frustration or annoyance. They may try to humor the patient, sometimes behaving as if they’re dealing with a child. They may try to stop the confusion with medication. 

All of these responses serve only to distance dying people from those they trust, producing a sense of isolation and bewilderment. No matter what label is placed on their attempts to communicate, or which responses are tried, everyone stops really listening to the dying person...

Callanan, Maggie (2012-02-13T22:58:59). Final Gifts: Understanding the Special Awareness, Needs, and Co (Kindle Locations 264-273). Simon & Schuster. Kindle Edition.
Twenty years ago I spent my days at Brotman Medical Center in Culver City, by the bedside of my dying elder daughter, Sissy. Now I get to do it again, this time at home, with her younger sister Danielle. She may not last the day. Or much beyond it, in light of her worsening symptoms. (And, as updated, Danielle did not last out the day.)

Danielle, circa 1974

I again reach for the comforting book I carried with me to Brotman every day 20 years ago, reading it over and over.
Consider the bulb of a daffodil buried in the ground all winter. As the weather gets warmer, it begins to sprout. If it rains sufficiently, there is no frost, and no one treads on it, one morning you will exclaim: “Look! The daffodils are out.” But did the sprout suddenly cease to be a sprout and in its place a daffodil appear? The same problem: while a sprout is no more a daffodil than a daffodil is a sprout, somehow the sprout becomes a daffodil. The dividing line between sprout and daffodil is a convenient conceptual and linguistic distinction that cannot be found in nature.

In this sense, ballpoint pens, bananas, pots, rainfall, hearing, chairs, bottoms, sprouts, and daffodils have no beginning and no end. They neither start nor do they stop. They neither are born nor do they die. They emerge from a matrix of conditions and in turn become part of another matrix of conditions from which something else emerges.
Batchelor, Stephen. Buddhism without Beliefs (p. 76). Penguin Publishing Group. Kindle Edition.
Which in turn reminds me of this:
In the moment of transition between life and death, only one thing changes: you lose the momentum of the biochemical cycles that keep the machinery running. In the moment before death, you are still composed of the same thousand trillion trillion atoms as in the moment after death— the only difference is that their neighborly network of social interactions has ground to a halt. 

At that moment, the atoms begin to drift apart, no longer enslaved to the goals of keeping up a human form. The interacting pieces that once constructed your body begin to unravel like a sweater, each thread spiraling off in a different direction. Following your last breath, those thousand trillion trillion atoms begin to blend into the earth around you. As you degrade, your atoms become incorporated into new constellations: the leaf of a staghorn fern, a speckled snail shell, a kernel of maize, a beetle’s mandible, a waxen bloodroot, a ptarmigan’s tail feather. 

But it turns out your thousand trillion trillion atoms were not an accidental collection: each was labeled as composing you and continues to be so wherever it goes. So you’re not gone, you’re simply taking on different forms. Instead of your gestures being the raising of an eyebrow or a blown kiss, now a gesture might consist of a rising gnat, a waving wheat stalk, and the inhaling lung of a breaching beluga whale. Your manner of expressing joy might become a seaweed sheet playing on a lapping wave, a pendulous funnel dancing from a cumulonimbus, a flapping grunion birthing, a glossy river pebble gliding around an eddy. 

From your present clumped point of view, this afterlife may sound unnervingly distributed. But in fact it is wonderful. You can’t imagine the pleasure of stretching your redefined body across vast territories: ruffling your grasses and bending your pine branch and flexing an egret’s wings while pushing a crab toward the surface through coruscating shafts of light. Lovemaking reaches heights it could never dream of in the compactness of human corporality. Now you can communicate in many places along your bodies at once; you weave your versatile hands over your lover’s multiflorous figure. Your rivers run together. You move in concert as interdigitating creatures of the meadow, entangled vegetation bursting from the fields, caressing weather fronts that climax into thunderstorms.

 Just as in your current life, the downside is that you are always in flux. As creatures degrade and your fruits fall and rot, you become capable of new gestures and lose others. Your lover might drift away from you in the migratory flight of tropic birds, a receding stampede of wintering elk, or a creek that quietly pokes its head under the ground and pops up somewhere unknown to you. 

Many of your same problems apply: temptation, anguish, anger, distrust, vice— and don’t forget the dread arising from free choice. Don’t be fooled into believing that plants grow mechanically toward the sun, that birds choose their direction by instinct, that wildebeest migrate by design: in fact, everything is seeking. Your atoms can spread, but they cannot escape the search. A wide distribution does not shield you from wondering how best to spend your time. Once every few millennia, all your atoms pull together again, traveling from around the globe, like the leaders of nations uniting for a summit, converging for their densest reunion in the form of a human. They are driven by nostalgia to regroup into the tight pinpoint geometry in which they began. In this form they can relish a forgotten sense of holiday-like intimacy. They come together to search for something they once knew but didn’t appreciate at the time. 

The reunion is warm and heartening for a while, but it isn’t long before they begin to miss their freedom. In the form of a human the atoms suffer a claustrophobia of size: gestures are agonizingly limited, restricted to the foundering of tiny limbs. As a condensed human they cannot see around corners, they can only talk within short distances to the nearest ear, they cannot reach out to touch across any meaningful expanses. We are the moment of least facility for the atoms. And in this form, they find themselves longing to ascend mountains, wander the seas, and conquer the air, seeking to recapture the limitlessness they once knew.

Eagleman, David (2009-02-10). Sum: Forty Tales from the Afterlives (Kindle Locations 1009-1041). Knopf Doubleday Publishing Group. Kindle Edition.


(Danielle, I tried to find a brown dove for this. But, that would be a "pigeon," right? Sorry. - Daddy.)
Below, "the Sissy Tree" and Danielle's wheelchair. When Sissy was ill in L.A. (1996 - 1998), she doted on what we came to call "the Sissy Tree" in her Hollywood apartment. After she died, and after we'd spread her ashes back in Tennessee, I rinsed out the urn and poured the ash-residue water into the pot. Twenty years later the Sissy Tree sits in our family room, where we continue to nurture it.



May 1st:


More to come...


  1. They say lightning doesn't strike twice...not true, not fair. There are no words Bobby. My heart aches for you and yours, especially Danielle and Keenan. I don't need to know her to know she's a special person. I'm so sorry for all your sorrow.