It's Saturday today. I listened to
This American Life on
WYSO, as I do most Saturday mornings while I let a dose of Fosamax
process through my empty stomach, feed Howard-the-Lab, make a big mug of
triple-shot latté, and split and toast a sesame seed bagel and spread
almond butter on each half.
As Ira Glass introduced today's theme, "
Death and Taxes,"
I flashed back two weeks, when I told a dying relative a lie: "Next
year, we'll be wishing you a happy birthday in your home." Without a
word, she floored me with eyes that said: "What, are you really so full
of shit that you think I'll walk out of this hospital room and live to
see my 80th birthday? We both know, or at least I know, that I'm
this close to my last breath!"
o o o — o o o
My husband's cousin Barbara had worked at the
Fernald
plant near Cincinnati as an industrial electrician while the plant was
being decommissioned. Nuclear materials were still in storage there, and
more than once Barb had been in sight of yellow cake or other fuel
products. Within 15 years, Barb developed chronic obstructive pulmonary
disease, which progressed to a diagnosis of lung cancer in late 2009.
She
was a generation older than Chuck, and she married and relocated to
California when Chuck was almost three. He had only a few interactions
with her as they grew up, but he sailed the Golden Gate strait with her
as an adult. Her driving intelligence made her a master sailor and in
one period a naturalist with a special focus on bats and other mammals
of flight. From this enthusiasm came her respect for the
Chiroptera order
of animals. She called herself "a tough ol' bat," and the description
stuck as a nickname among her many friends—fellow workers at Fernald,
members of the motorcycle club she had joined, musicians who gigged with
her or her wife Marcia, almost everyone except her family of a few
cousins.
The nickname "Bat" proved true as she waged
war with cancer. After surgery and radiation therapy, she was diagnosed
to be cancer free. Bat resumed her life as never before. She and Marcia
lived each new day as a fresh experience, an opportunity to bike
together at a whim. They biked long distances to attend national
meetings with other members of the Motor Maids and short distances to
see Chuck and me up in Dayton.
The flow of a couple
more years brought new concerns about cancer recurrence. A second lung
surgery was needed 22 months after the first. Another year later, new
scans revealed a metastasis in her brain. At first her body responded
fairly well to treatment. The cancer cells seemed to die from
gamma knife treatments and chemotherapy, but the site never cleared of necrotic tissue. Large doses of
corticosteroids were used for long periods, and their
side effects transformed
Bat into a person easily exhausted by her previous, active lifestyle.
And caring for Bat at home had required Marcia to sacrifice the retail
jobs that helped them stay ahead of mounting bills.
o o o — o o o
Bat
had moved from home to a residential rehabilitation facility. The plan
was to rebuild her ability to maintain a life, though a quieter one, at
home and to regain enough self-sufficiency to allow Marcia to return to
work.
I visited Bat on a Wednesday afternoon. She was
bloated, barely mobile, her body on its way to becoming one with the
hospital bed. Nevertheless, her eyes were bright, focused, and she kept
in the conversation. But she was totally unable to provide the stream of
family stories that was characteristic of her in the past. Occasionally
Bat rattled a cough, and Marcia explained for her, "We think it's the
steroids, the prednisone, that have taken her voice. She hasn't been
able to do more than whisper for several days now." Bat's dinner
arrived, and she ate with moderate appetite. When I was getting ready to
leave, Marcia reminded me that Bat was looking forward to her 79th
birthday next Sunday.
A day later, Bat had been
transferred to Bethesda North to treat what had now been diagnosed as
pneumonia. Placing her in the rehab facility had been, in retrospect,
too hopeful a step for Bat's transformed and exhausted body. It had
become difficult for her even to sit up in bed, let alone getting to a
chair in the room or to the bathroom unassisted. This lack of movement
contributed, I suspect, to the pneumonia.
I came to her bedside on April 13. That date in 1935, Bat—Barbara Morton—was born in
Alliance, Ohio.
Her mother, Ethel Ora Derry, had been born there—and married there too,
to George Morton. Ethel's parents had been married there as well, and
Alliance was the last home of Barb's great grandmother, Oracelia
Maxwell-Derry. Though that lineage had been told to me by Barb herself,
she had no energy to talk about family. Nor to talk at all. Whatever
treatments were given at Bethesda were of little use. The pneumonia
lingered, and Barb looked even less herself.
A nursing
aid brought in a tray. A wedge of chocolate cake supported a match of a
candle. A half-cup bowl held a sphere of vanilla ice cream. Marcia lit
the candle, then she and I sang the familiar repeating phrases and
provided the breath to extinguish the unsteady flame. And then came the
time that I told that bald-faced lie...
o o o — o o o
Barb
rallied, then faltered. Three times over the week. She bargained with
the doctor, "Let's decide on Friday whether I've beat this pneumonia and
can get back home to recover." Marcia called attorneys handling the
workers' compensation settlement from Fernald, medical supply companies
providing a hospital bed at home, social workers evaluating the home
environment, and a Hospice of Cincinnati representative advising a
temporary stay at their facility before bringing Barb home. On
Wednesday, Barb was taken to Hospice. On Friday, her friends set up a
schedule that kept two or more attending Barb and Marcia for as long as
needed. On Saturday I visited. I remembered the unsteady candle light
from six days earlier and the red votive candles at death vigils when I
was a child. On Sunday, Barb departed quietly before Easter's dawn.
A moral without a maxim
Barb taught me that it is possible to
know that one's own death is approaching, and it may be up to the dying
to teach family and friends how the death should progress. The "Death
and Taxes" broadcast clarified that the dying are often unable to
articulate their own wishes as death approaches, particularly to the
attending family and professionals. Observing Barb's slow week of dying
left me with strongly felt wishes about how my own death would best be
managed, given that I die from "old age" or slow compromises from
illness.
Foremost, I want no silence in the room where I
die. Nor darkness. Women can comfort, men can curse, children can
prattle. Let all visitors to the death watch come with an understanding
that they may continue their living, even while in the room with me.
I
would like to hear music almost constantly. Music has been a force in
my life since childhood, though my tastes have sharpened since then. Let
the music never cease, not even in ER, OR, ICU, or hospice. My favorite
music includes
- The Wagner Ring cycle—I have long listened equally to the Solti original and the Goodall English translation, and the Boulez version occasionally.
- Schoenberg's Verklärte Nacht, as well as his chamber symphonies and Ode to Napoléon Buonaparte. I have loved other Schoenberg works, too, and I've driven Chuck to distraction by listening to Berg's Wozzeck, Lulu, and "Seven Early Songs."
- Schubert's Der Hirt auf dem Felsen,
- Poulenc's Dialogues des Carmelites,
- Bartok's Bluebeard's Castle,
- Stravinsky's ballets (even Agon),
- Messiaen's Saint François d'Assise,
- Fauré's Requiem,
- Penderecki's Threnody for the Victims of Hiroshima and Cello Concerto #2,
- String quartets by Mozart and Beethoven.
- Sondheim's Merrily We Roll Along (in all three versions), Sweeney Todd, and Sunday in the Park With George—Don't play Sondheim's Follies, because I don't want yet another insight about its characters!
- Guettel's The Light in the Piazza.
- Weisgall's Six Characters in Search of an Author.
- John Lennon's In My Life, the song that Chuck and I measure all life by. (I won't object to other Beatles songs.)
Let my friends talk above or below the music, think good
thoughts, remind me of their presence with a stroke on the thigh, a rub
of the shoulder, a cooling touch on the brow, or even a gentle lift of
the testes.
Bring your friends I should have met. Bring your children to know that death is natural, a common thing among all of us born.
Flowers
are not necessary. Rather, bring a favorite photograph, sketch, or art
reproduction that speaks to you and may inspire me.
Don't close the curtains. Let in the sunshine!
Don't swathe me in pajamas or hospital gowns. I have slept naked all my life, and want no encumbrance at death.
Once
it is clear that Death is approaching, don't make useless attempts to
prevent the inevitable. Whatever strength I have for breath, that is
enough. No tubes, no forced feeding, no fluids.
When I and my body
are separated, take any parts that can be of use for others or
research. Then burn the rest. Let the volatiles join my spirit, and let
the precipitates join the earth.
