What I learned from attending my cousin near her death

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, fed Howard-the-Lab, made a big mug of triple-shot latté, and toasted a sesame seed bagel.

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 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.

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 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.)

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.

Please also read this for another approach to serious illness, medical care, and dealing with one's death.

Just a brush is what we need

If we're lucky, Death brushes against us a few times in life. Sometimes the brush is a near miss, other times the brush occurs when a friend or relative meets Death. We can choose to learn from these close encounters, or we can shelter ourselves, repress our feelings, and refuse to grow.

Tom Kohn

Twenty years ago I had a near miss. I was in a training race on my bicycle, and a car collided with me as the driver turned off a one-lane bridge with poor sight lines. Unaware that the race course had inherent problems in safety, unknowing that the race organizer had not gained approval from the townships or counties involved, unable to know that nobody on my racing team would care enough to identify me when the ambulance came, and unfortunate that, faced with the need to answer hard questions, my racing companions would take flight and leave me bloody, unconscious, and seriously injured. But Death didn't finish his job with me, perhaps because enough angels came to my help and scared Death in his work. I survived after two weeks hospitalization, seven surgeries, and several years learning to cope with cognitive impairment. I learned that, if I retained a headstrong focus on cycling in dangerous situations, I might well die in another bike collision.

Chuck Derry

Ten years ago my husband Chuck had a long dance with Death. Days before we were to spend Spring Break in our favorite getaway, a doctor advised Chuck, "I don't like how this x-ray looks. This white area here, near your heart, shouldn't be there. Let's get a CT-scan, and get the ball rolling for surgery." It was a rare thymoma, one that wrapped around his heart. The surgery included removing the outer layer of tissue around his heart, because the surgeon suspected that cancer had bridged the gap between the thymus and the heart. After he recovered from the open-chest surgery, he was given radiation treatments to kill any remaining cancer cells in his chest. But the radiation also damaged his heart and lungs. A year later he needed stents to relieve arteries that had collapsed from radiation damage. A year after that, he needed open-chest surgery to replace several arteries with veins from his legs. But bleeding didn't stop after the surgery, so his chest was opened again to find and repair the bleeding areas. And then opened again for another surgery because more bleeders started up. Death waged a long campaign, but Chuck won each battle. I learned that the will to survive can allow us to prevail against catastrophic disease, and that the love of friends and family can foster the will and make recovery easier.

Tom with Louise Deneke-Kohn, 1913-1990

My mother's death was an example of a brush with Death where too many distractions kept me from learning and growing. Mom and I had a troubled time after I divorced my wife to live more honestly as a gay man. This changed when I met Chuck and, because of his influence, became more compassionate to Mom's loving concern. When mom died, I could hardly focus on her, because distractions and hostility came from my family who had never come to terms with a gay nephew, cousin, or brother. Her battle against Death was made lonelier by her family's grudging communication with me. I learned that the result of intolerance is complex, and it affects more victims than the obvious ones.

Florence Pounds-Iacano, 1924-2007

Aunt Florence, a life-long conservative follower of a retrograde Christian cult, had a long struggle against Death. For seven years, Florence personified the Iacano family's estrangement from Chuck after he met me, forged our commitment, and came out to relatives and friends. At one time, her minister had told her that speaking to Chuck would bring her everlasting damnation. Ironically, when Chuck visited her the day before her death, she could not speak because of intubation. Her eyes and unfaltering clasp of Chuck's hand could only imply her regret that she had been less compassionate than she should have been. I learned that we must express our love, overcome our own troubles, and accept our friends and family without condition. And we must do so long before that last moment when Death lurks at the doorway.

Barb Morton-Graham, 1935-2014

Chuck's cousin Barbara Morton-Graham died this morning at 4:40, before the sunrise of Easter. She called herself Ole' Bat, and might have been happy being called a tough old gal. When she exited from a marriage and needed to earn a living, she apprenticed as an electrician, and ended with a well-paying job at the Fernald nuclear energy plant. Working through its de-commissioning, she was in occasional proximity to fissable materials. But she felt it was better for her to be in danger than the young men she worked with, who had a full lifetime yet to enjoy. For years she battled against lung cancer and ensuing chronic obstructive pulmonary disease, and the last few months were especially hard. I was able visit her occasionally in these last few weeks. Diagnosed and hospitalized a week ago with pneumonia that was never controlled, her breathing was labored over many days. Friday she was moved from hospital to hospice, and I was beside her yesterday evening while she slowly and bravely advanced toward Death. In the end, Death befriended her and relieved her of a compromised body.

Louise Ohnsat-Kohn, 1875-1959

Sitting there beside her, among her friends from the Motor Maids motorcycle club, I was reminded of the gathered daughters and daughters-in-law as my grandmother Louise Ohnsat-Kohn passed.

There was no hospice then in May 1959. The death watch occurred at home. The front bedroom, where great-grandparents' photos watched my grandparent's bed, was dark, the shades drawn, the curtains pulled together. Grandma was alone in the bed, but five young women stood, sat, or kneeled around the bed. Two of them—my mother Louise and my aunt Sr. Edna Louise—were registered nurses. Even these women well-versed in care and comfort were at the far reaches of what medicine could offer in 1959 rural Kansas. The palliatives were few: a dry towel to dab at sweat and tears, a moist cloth to wet the lips, a slow fan to move the air, a low murmur of another recitation of the rosary. The words repeated momentarily in my head, drawn again into the Catholic practice I had thought I have recovered from; one voice chants, "Hailmaryfullofgrace thelordiswiththee, blessedart-thouamongwomen, andblessedisthefruitofthywomb,Jesus." A throng of automatonic responses, "Holymarymotherofgod prayforussinners nowandatthehourofourdeath,Amen." Not quite a monotone, barely inflected, related to chant, but never a sweeping antiphon.

I realize now that the muddle of words was not a means of compressing the rosary to its alloted ten minutes (one credo and triad followed by five decades of an Our Father and ten Hail Marys), but of creating a low buzz that blocked the world outside the house, a white noise that dampened the curses and weeping from the men smoking in the front parlor, a somber music that balanced the flow of visiting neighbors and family who brought pies, cookies, hams, roasts, casseroled vegetables, potted stews, and repeated questions of the details of sickness and impending death.

Pulled back—Barbara stirred, coughed weakly—to the hospice room, with my dying cousin (no longer merely a cousin-in-law) and the ebb and flow of her friends, motocycle riders, lesbian couples, cat lovers, all part of the extended family of a pair of women, married—by the authority of the state of Ontario, Canada—now these ten years, six months, and seventeen days, and still lovers through these thirty years, five months, and nineteen days, who must now separate for a time.

Barbara and Marcia, about 1990

Notes for her biography

Barbara Morton-Graham, known to her close friends as Bat or Ol' Bat, was born 13 April 1935 to George Elwood Morton and Ethel Oracelia Derry in Alliance, Stark county, Ohio. She was their only child.
She married James Crawford Graham from [HOME UNKNOWN] on 15 Aug 1954 in Cleveland, Ohio. They lived in Ohio, Azusa CA, and San Anselmo, CA; and they had two sons: Anthony Crawford and James Chase.

Barbara created a new home with Marcia Gallas of North Miami Beach FL in Nov 1983, and they lived in Novato CA, Asheville NC, and Cincinnati OH. They celebrated their meeting date with their marriage on 8 Sep 2003 in Toronto, Ontario, Canada.

Barbara is survived by her loving wife Marcia Gallas of Blue Ash, OH, sons Tony Graham and wife Vangie of Neshkoro, WI, James Graham and wife Peggy of Boulder Creek, CA, and grandchildren, Nikki Patten of Queen Creek, AZ, Kyle Graham of Tempe, AZ , Triona Graham and Brigid Graham of Vallejo, CA, Keiva Hummel of Oakland, CA, and Lauren Katz of Boulder Creek, CA. Cousins Charles Derry and husband Thomas Kohn of Palm Springs, CA, Denise Preucel and Max Gast of Cleveland, OH.

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