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!"
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 as an adult he sailed the San Francisco Bay with her captaining. Her 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 several 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.
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...
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 maximBarb 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 deathwatch 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.)
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.
Please also read this for another approach to serious illness, medical care, and dealing with one's death.