Palliative Care

In late July 2014, my mother thought she’d gotten a bad flu. When her fever and extreme fatigue didn’t recede, she took herself to the emergency room of her local suburban hospital, where she was rapidly admitted to the ICU while the doctors tried to figure out what was wrong with her. Following nine days of testing and head-scratching over negative results, they finally arrived at an answer: Her “bad flu” was acute myeloid leukemia.

In my family, you don’t tell anyone when there’s something wrong with you, on the grounds that it’s upsetting to receive bad news. Why bother people with your misery? Accordingly, my mother only called her younger brother when it became clear that she wouldn’t be going home that first night — someone had to walk her dog, after all — but instructed him to keep it quiet. She had been in the hospital for nearly a week before my uncle called my sister, who then, a day later, called me.

I had never heard of acute myeloid leukemia before. At the time, I possessed only a vague sense of what leukemia was, gleaned from a short story I read about fifteen years ago. While my sister and I were trying to absorb the news, puzzling out the details from doctors’ reports and our own frantic Google searches, my mother was transferred to the Hospital of the University of Pennsylvania. Her treatment would require aggressive chemotherapy, which in turn would completely obliterate her immune system. In order to not be felled by another disease while the chemotherapy was working, she would need to remain in the hospital until her white cell count reached an acceptable threshold. I flew across the country to stay with her, and take care of her house and dog. In the end, she was in the hospital for sixty-eight days before being discharged, and I was with her for fifty-four of them.

I don’t know how much time you’ve spent in hospitals — very little, I hope — but I soon discovered there’s a reason that they have so many security guards: illness, pain, and mortality make people extremely angry. In the fourth-floor confines of the Abramson Cancer Center, I felt my fear for my mother, and my overpowering sense of helplessness in the face of her approaching death, transform to hot rage on an hourly basis. During their rounds, the head oncologists were condescending and disingenuous. On one occasion, an attending physician actually said, “…now, I know that’s a big word…” as though my mother’s physical wasting was an outward sign of mental incapacity. My sister and I invented nicknames for them: The one with the chiseled jaw and habit of posing in a wide-legged stance with hands on hips was Captain Oncology; his counterpart, Doctor Smiley Face, had clearly been told that if she spoke through an unflagging grin, it would make her dire pronouncements more palatable: “Your numbers are dropping! We’re going to have to send you for an echocardiogram!”

After the first round of chemo, my mother spiked a 103-degree fever twice a day like clockwork. Tylenol brought it back down, the doctors wouldn’t give it to her until she had been tested to see if the fever was caused by something more sinister than neutropenia. She’d vomit and shake with chills for hours while we waited helplessly for the all-clear. At five weeks, complications from the second round of chemotherapy put her in jeopardy of a heart attack, but she couldn’t hold down the oral solutions they gave her to ameliorate her mineral deficiencies. She was no longer strong enough to shuffle the waxed-linoleum corridor with her IV pole in her right hand, gripping me with her left for balance. A woman who had been fiercely independent for fifty-odd years found herself skeletally frail and by turns terrified, ashamed of needing significant care, and irritable with pain. At the six-week mark, by the time I left the hospital each evening I was ready to punch nearly everyone I encountered in the halls, in the elevator, on the four blocks to the train station. I wished desperately that someone would start a fight with me so that I could snap and shove them into a wall, so that I could extend the pulsating energy of my fear and my fury outward, but no one ever did.

There are so many protocols that govern long-term illness, and my days were carved into innumerable small rituals from the moment I opened my eyes. With wearying regularity, my feet hit the asphalt platform at Ridley Park Train Station at 7:25 a.m. At the deli across the street from the hospital, I became a regular with a standard order: “Egg sandwich and a chocolate milkshake?” they’d ask (the milkshake was for my mother, offered in the hope of wheedling some calories into her chemo-ravaged body). Entering the front doors of the hospital, I propelled my limbs automatically through the maze of corridors to the elevator as though pulled forward by a string. The obligatory hello to the nurses on duty, a conscientious lathering from the plastic dispenser of sanitizer in the hallway, or, when things got really bad, the donning of thin yellow coveralls and a face mask, as though I were about to take on a non-speaking role in a crime drama. Sometimes my sister and I overlapped our self-imposed shifts. On a good day, in between her fevers, we were able to get my mother into the shower and out and dry again with lightning speed. While one of us lathered and rinsed her body — shockingly birdlike now, light and unbalanced — the other would nip into the hall, snatch up some clean bedding from an unattended cart, and change her sheets. When she slept, I would edit articles and answer the emails that were piling up; my return missives all lied, “I’m fine!” At around 6:30 p.m., the orderly would deliver dinner and I’d cajole a few bites into my mother before the Compazine knocked her out. Then I’d wobble back to the train, mechanically feed myself dinner, and sleep.

Now, three years later, I can’t remember where I saw the notice for the free performance, or why it even seemed possible to attend. But the Abramson Cancer Center is very near the Institute for Contemporary Art, and one mid-September evening I stumbled down the sterile passageways a few minutes early and fast-walked two blocks to a standing-room-only recital hall to see Woodslippercounterclatter by Susan Howe and David Grubbs. I spotted an empty chair in the front row next to curator Anthony Elms; everyone else must have thought it reserved, but he waved me into it when I inquired. The lights dimmed and the two performers settled into their places: Grubbs at a grand piano, Howe at an unadorned table with a microphone.

In the truest sense of the word, the performance was unspectacular. A recorded soundtrack began: footsteps across a wooden floor, birdsong, the whispers of two women about small domestic matters; Grubbs laid his fingers on the piano slowly, meditatively, sketching a repetitive melody; Howe read her poetry, an associative, dreamlike flow that resisted the flat logic of the rational. Within a few moments, this combination opened the tiny space of the world that I inhabited, turned it inside out and exposed it anew:

Ellen Sturgis Hooper. 1812-1848.
Thanks to Boston here is a poem.
‘I slept, and dreamed that life was beauty
I woke and found that life was duty
Was thy dream then a shadowy lie?
Toil on poor heart, unceasingly….’
     Glass, plasticine, dried flowers, foliage

At about mid-point, Howe went silent and Grubbs played, from the laptop at his side, the sounds of rain, of a broom sweeping dust; a freight elevator, rattling up its shaft until it halted and the doors opened with a rubbery squeal. Prosaic, ordinary, un-showy, everyday, invisible, things that in a past life I had been permitted the grace of taking completely for granted. For my mother, for my exhaustion, for all the small, mundane things that we were in the process of losing, I wept.

An argument could be made that I was uniquely primed for this performance, that my raw emotional state heightened my perception of the work and allowed me to rapidly connect it to my own life. This argument wouldn’t be wrong per se, but it would be shallow and incomplete; at completely normal, non-catastrophic moments I’ve been mesmerized by the haptic and conceptual qualities of sculptures, and have teared up at the sight of certain paintings. Once, at the Museum of Contemporary Art in Barcelona, I watched a video so many times that my husband made a complete loop of the three-story museum and came back to find me still in the darkened projection room, rapt.

It was my mother who taught me, by example, to believe in art. It was no small thing for a waitress single mother to take two little girls on an annual December trip to the Philadelphia Ballet. When we were older, she brought us to the Philadelphia Art Museum, to craft galleries, explained the importance of the Barnes, and played us classical records alongside Diana Ross and Roxy Music. Later, when we had more money, I was made to sign up for art classes at libraries and community centers, and though I railed against them as any teenager would (“Why can’t I sit around the house all summer?”), they opened a universe to which I am indebted. Art was not other, an optional space to be filled in on the checklist of life. It was the purpose of living.

Thus, I often find myself disappointed and aggrieved by our contemporary moment, in which art becomes instrumentalized, its legitimacy attendant upon an ability to perform a quantifiable, functional service. It has become fashionable to view the arts as having an auxiliary status that adds literal and figurative value to other, more outcome-oriented specializations. We could take for one example the cultural movements that propose to add art and design to the functional and lucrative combination of science, technology, engineering, and math. Though this “addition” undoubtedly has beneficial outcomes, it’s also easily perverted toward emphasizing art’s second-class status as a human pursuit. This is especially the case in the culture of Silicon Valley, whose seemingly limitless ability to generate capital has beguiled more and more of the world into adopting its views and rhetoric. From the enclaves of San Mateo and Mountain View to St. Louis and New York, “entrepreneurial” middle and high schools offer curricula that cite the adjunct value of the arts in making junior innovators more imaginative, giving them a “creative” advantage that is no doubt intended to heighten future earnings.

Joshua Rothman sums up this outcome-oriented attitude in his essay “Creativity Creep”: “…attention is paid to the systems of influence, partnership, power, funding, and reception that surround creativity — the social structures, in other words, that enable managers to reap the fruits of creative labor. Often, this is imagined to be some sort of victory over Romanticism and its fusty, pretentious, élitist ideas about creativity.”

To frame art on these terms is at best an impoverishment and at worst a theft. Art is not a girder that underpins a remunerative bridge to the future, it is the future, as well as the past and the present. It is a space to narrativize experience so as to draw us out of our crabbed selves and the often-miserable circumstances of existence. It takes anger and fear and throws them into high relief for inspection. Sometimes it’s conventionally beautiful, presenting a thing known and hungered for, such as a well-composed still life or a lush landscape; sometimes it offers not consolation but discomfiture, prodding us out of unquestioned assumptions and perceptions about the world and ourselves; at other times it remains outside of convention, in fantasy and dream. Art lives beyond the boundaries of should. In a moment, it can break and remake the world. The best of it is a surprise, a miracle, a curiosity, quicksilver, with a sense of the fleeting, even when it’s not.

About eight months after she was released from the hospital, my mother’s leukemia came back. We already knew her chances for survival were nil; had read the few, grim reports on post-remission longevity in AML patients over 65, and yet the news was an ugly, shocking wound. We had phone conversations about experimental drug trials and Death with Dignity; I fell into a research hole of pharmaceutical studies and cancer forums. Ultimately, she chose to refuse further intervention and opted for palliative care. I returned to Philadelphia in July to find her already wasting, breakable and easily fatigued. But when I mentioned a Barbara Kasten exhibition I was hoping to see, she asked to come with me.

It was raining out, stagnant and muggy. We wandered through the exhibition very slowly — because that was the only speed she had — and I took notes for a review. Protectively, I kept an eye on her in case she might need me, but I watched the subtle works absorb her attention as though she had all the time in the world. When she was too tired to stand, we caught a cab back to her apartment; I think of her wrapped in three sweaters, her insubstantial frame made smaller by the thick black strap of the seatbelt across her torso. She wanted to know what had I thought of the arrangement of the exhibition, did I notice the details of this and that one, which photographs would I write about? Despite her weariness, she was eager to engage and share perspectives.

As the cab inched through the wet traffic on Market Street, our conversation shifted to other artworks, other institutions. Presently, she began to talk about her funeral arrangements. She wanted to be cremated. She wanted her obituary to be short. In lieu of flowers, she wanted charitable donations to the Free Library of Philadelphia. I glanced away to the rearview mirror and met the driver’s alarmed eyes — apparently he wasn’t used to overhearing such frank discussions of death. My mother plowed on. She wanted everyone to bring a can of food for the local food bank. “Don’t make it sad, I don’t want people to be sad,” she reached over and patted my arm with her bloodless little hand. “Tell jokes. Play Motown.”

I have been wanting to write these words for a while now, to attempt a small measure of my experience and to sort out for myself some of these profound gifts: a mother who, via art, showed me the world; an unassuming performance that unfolded into my life and created a perspective on my situation; my place in these things, and how they continue to remake me. Susan Howe’s voice comes back to me, measured tones amplified by a microphone, over slow notes from the piano:

A work of art is a world of signs, at least to
the poet’s nursery bookshelf sheltered
behind the artist’s ear. I recall each little
motto howling its ins and out, to those of
us who might as well be on the moon.

A few years ago, I had a trip to a waxed-linoleum moon, endless waiting by a hospital bed, lonely and cold. I am glad to be back.

Comments (2)

  • Art and cancer. Art and death. Anger and hospitals. Hard to read what would we do without reading it. Performance is short so we can get to the other side

    Thank you for your story

  • Janet LeMonnier says:

    Your mother gave you so many gifts, not the least of which was an enduring love of art. I am so glad you had the chance to share something beautiful with her again toward the end of your shared life together. Thank you for sharing it with us, as well.

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