Connect with Healthcetera
Monday, April 29, 2024
HomeStandard Blog Whole Post (Page 321)

strange-relationJoy Jacobson is CHMP’s poet-in-residence.

Rachel Hadas, a well-regarded writer of poetry and essays, has just published a new book of nonfiction. Strange Relation: A Memoir of Marriage, Dementia, and Poetry chronicles how the writing and reading of literature helped Hadas to cope when her husband, George Edwards, a composer, was told at age 61 that he had either Pick’s disease, also known as frontotemporal dementia, or a combination of Pick’s and Alzheimer’s diseases. Hadas wrote the following poem (reprinted with her permission) after his symptoms became apparent but before they received that diagnosis.

In the Taxi to the MRI

I try to concentrate on the weather. Everything
deliquesces into simile.
Sleet ticks onto the windshield like a clock.
Truth blinks on/off like a stuck traffic signal.
It is better to live in the light but the light is flickering.
Anything more than the truth would have seemed too weak—
Poetic paradox understood too late
or maybe just in time. What time is it?
A small white poodle in a quilted coat
lifts a leg to pee against a hydrant
on Sixtieth Street, and we are nearly there,
early, of course. And since (she said) my heart
has been wrung out, no, broken, this is the . . .
this has to be . . . The sentence will not end.
The mind pulls, stretches, struggles, and returns
not to any absolute beginning
but a blank wall. Is there a door in it?
A future? How to get there? And once there
how to escape? When flickering stops and steady
light shines, that may be the worst of all.
Anything more than the truth would have seemed too weak,
but mercifully the blinking begins again.

The taxi contains an unnamed “we” moving in a halting, nearly peristaltic fashion toward a diagnostic procedure. “I try to concentrate,” the speaker begins, and as someone who has been in such a taxi—my mother died of dementia in 2005—I know how dread can overtake the ability to concentrate. But by the second line the speaker and everything else “deliquesces.” The world is melting, and only through the direct comparison of simile—this is like that—can the speaker recognize her surroundings.

Hadas first published the poem in 2008 in Pulse—voices from the heart of medicine and wrote at the time that she “instinctively knew” what her husband’s scan would reveal. Before diagnosis, the poem suggests, one can apprehend the truth of illness only in flashes and flickers. “Anything more than the truth would have seemed too weak”—that remarkable line defies rational sense but rings true, somehow. Uncertainty, the dread unknown, may be hard to endure, but living with certainty will be “worst of all.”

Lucidity returns, momentarily, in the form of a poodle. Hadas writes in Strange Relation, “The kingdom of illness gives some gifts; it bestows an alarming clarity on the way those inside it view those outside.” For now, time stops just long enough for the speaker to observe the dog, and then time reverses. Or rather the speaker asserts her power and converts her own emotion—at once self-affirming and self-pitying—into a parenthetical, past-tense, third-person utterance: “(she said).” It’s as though she is watching herself begin to compose her own memoir.

But expressions of broken-heartedness cannot end because they cannot begin. The mind knows only to question itself—“ A future? How to get there? And once there / how to escape?”—and receiving no answer repeats that odd phrasing encountered earlier: “Anything more than the truth would have seemed too weak.” This time, the speaker recognizes “the blinking” of time and truth, and while still enclosed within the taxi, names it a kindness.

Hadas has written of an increasingly common experience. The Alzheimer’s Association announced this week that 15 million informal caregivers provided 17 billion hours of unpaid care to people with dementia last year. There are many resources to assist them; Hadas serves on the board of the Well Spouse Association, for example, a nonprofit that provides support to caregivers of ill and disabled spouses. And Hadas will provide a keynote address at The Examined Life: Writing and the Art of Medicine, a conference at the University of Iowa, April 21–23.

George Edwards now lives in a facility, and Rachel Hadas is still writing. “My poems have always known much more than I know,” she said in an illuminating interview on National Public Radio’s Talk of the Nation on March 10. “My subconscious appears to be smarter and much braver than the rest of me.” Indeed, “In the Taxi to the MRI” maps out a precipitous terrain as perhaps only poetry can do.

Joy Jacobson is CHMP’s poet-in-residence. Rachel Hadas, a

Jim Stubenrauch is a writer and editor with 15 years’ experience in medical publishing, health care, and education.

Phot credit: Healthmax LLC

Phot credit: Healthmax LLC

A couple of weeks ago I attended a lecture by Rita Charon, MD, PhD, professor of clinical medicine at the College of Physicians and Surgeons of Columbia University and the founder and current director of Columbia’s Program in Narrative Medicine.

Entitled “The Clearings of Narrative Medicine, or How the Sick and Those Who Care for Them Can Unite,” the lecture was presented by the Center for the Study of Science and Religion, part of Columbia’s Earth Institute.

Charon began her lecture by noting both the difficulty and the necessity of bridging the divide between the seemingly opposing worldviews of science and religion. “It’s a very grand and risky gesture,” Charon said, “to put an ‘and’ between opposites like science and religion.”

Explaining the metaphor in the title of her talk, Charon said she has taken to calling narrative medicine a “clearing” to connote that the field, young as it is, is like a clearing in the forest, a place where sunlight shines and the undergrowth blossoms, and birds and animals pass through.

“There’s a beauty and there’s an enclosure and there’s a safety,” she continued, speaking in a soothing rhythm and saying that this kind of safe clearing is what the narrative practice of medicine seeks to create, a place where the stories of patients and providers alike can be told and heard, given and received. “So within these spaces or clearings that we make with our work, when we hold classes or workshops or conferences”—or when she solicits stories from her patients as in the anecdote, below —“what happens is this kind of clearing . . . where patients and families and doctors and nurses and social workers and chaplains—I’m going to go on—and poets and novelists and intellectuals and artists gather; and we gather in these clearings to know together what it means to have a body, to be mortal, to age, to become ill, to become better, and to be alive.”

Charon, a general internist in practice with the Associates of Internal Medicine at Presbyterian Hospital, then spoke movingly of a devout woman, a Jehovah’s Witness, who had been her patient for many years. Long ago, the woman had refused a blood transfusion after a cardiac procedure and came close to dying. Her husband and son stood vigil while she lay near death, and the hematologist had done everything possible to avoid the need for a transfusion, and she had lived. “She would have chosen death,” Charon said, “but she lived.”

Now, years later, her patient was a widow, living alone, seeming depressed and lonely. Trying to think of something to discuss that would give the woman pleasure, Charon asked her about her church work, going door to door. “Tell me a story about a visit when someone was grateful,” Charon said to her patient. And the woman told her about a man who was grateful for the news that God had not forgotten him.

“These are the things that I learn in my ordinary practice of medicine,” Charon continued. “The news that God has not forgotten us.” And then, Charon said, when they moved on to the business of treating her patient’s diabetes, hypertension, and osteoarthritis, they were in “a very different clearing than had I not heard that God has not forgotten.”

Charon said narrative medicine is “medicine fortified with the skills of knowing what to do with stories, of recognizing them when they’re told by our patients, and knowing how to tell our own experience.” She spoke of working with young medical students, interns, nurses, and social work trainees who are “floored” by their first encounters with intractable suffering and death.

“They say, ‘Is this what I chose, to live a life around sick and dying people?’ And what we find gives them the buoyancy to continue as generous helpers, is for them to tell their stories to us. So we teach them how to write. The better they are at representing what they see about the world of illness, the better they’re able to perceive it. So we help the students—and our colleagues—write their way through practice. And it’s only when they write that they understand and can discover what it is that they’ve been through.”

There’s more I’d like to say about Rita Charon’s lecture and her ideas about the narrative practice of medicine, and I hope to do so in a future blog post. In the meantime, please explore some of the links embedded in the text above. Also, a bibliography of publications by Charon and her colleagues in the Program in Narrative Medicine—some of which can be downloaded—are available online, here. And be sure to check out the program’s Narrative Medicine Rounds, where you can find a link to an iTunes U archive of free podcasts.


Jim Stubenrauch is a writer and editor

Women’s Voices from Russia, Ukraine, and Belarus

Phot credit: Healthmax LLC

Phot credit: Healthmax LLC

Tune in Thursday evening at 11 PM to Healthstyles and hear host Barbara Glickstein’s interview with NGO activists from Project Kesher who traveled to NYC to attend the 55th Session of the United Nation’s Commission on the Status of Women. The delegation includes Svetlana Yakimenko, from Povarovka, Russia, Director; Vlada Bystrova, of Krivoy Rog, Ukraine, Director of Programming; Elena Kalnitskaya, of Makeyevka, Ukraine, Director of Women’s Network; and, Olga Krasko, of Polotsk, Belarus, Director of Leadership Training. Project Kesher’s committed to building and promoting civil societies that are non-violent, tolerant, diverse, and that support and empower minorities and historically marginalized populations such as women.

Women's Voices from Russia, Ukraine, and Belarus