My Story, Your Attention, Our Connection

Patients waiting to see the doctor, with figures representing their fears.

Commentary by Deirdre Neilen, Ph.D., Associate Professor, Center for Bioethics & Humanities, SUNY Upstate Medical University, Syracuse NY, and editor, The Healing Muse

We are finalizing our eighth issue of The Healing Muse, and I find myself again caught in the web our poets and writers and artists are spinning. No matter that this is probably the eighth or ninth time I am reading their words or looking at their images. Each one springs before me as an entity, a being in search of something or someone to complete its quest for authenticity, its demand for understanding and mutual recognition.

As a journal dedicated to exploring issues of illness, disability, and medicine from all sides of those experiences, The Muse provides a unique forum for conversations and discussions that can seem difficult to initiate. When a diagnosis of cancer is given or when someone we know has a mental health crisis, we often have an initial sense of fear. We hesitate to say the wrong thing; we worry that our words might worsen the impact of the situation. We want to help, yet we too might feel the despair that lurks just behind the diagnosis. And inevitably, we feel totally and horribly alone. This isolation is one of the worst aspects of illness and medical treatment. The Healing Muse represents one poignant and powerful solution to this alienation; it can even open up a dialogue between patients and clinicians.

People have asked those of us who put together the journal if we don’t feel overwhelmed by the sadness of the poems and stories. They wonder how we “market” The Muse. Who really wants to read about radiation or chemo treatments, about physicians who can’t save patients, or parents who can’t save their children? Does anyone honestly want to know that his doctor can feel inadequate and furious all within the same second?

Narratives and Medical Students

To answer these questions, let me don the other hat I wear at my university, that of humanities professor in the college of medicine. With one of my physician colleagues, I teach a humanities elective once a year that is open to our medical students, our nursing students, and students from two private universities in the city. We have taught Death and Dying, Images of Medicine in Film and Literature, and AIDS in Literature. Each time we teach, we are struck by the medical students’ hunger for discussion about medicine’s more hidden aspects: the dying process, the fatal prognosis, the side effects of treatments, the chaotic relationships that can accompany the patient, the ethical dilemmas that no antibiotic can answer.

It is within literature that their questions and their attitudes can begin to be answered and explored. When I bring them an essay, “The Bruising,” by Dr. Thomas Gibbs which appeared in Muse 6, I am giving them the opportunity to watch a physician make the connection between his pregnant patient who will die from acute myelocytic leukemia and the death of his own mother from leukemia many years earlier. They see the physician “trying to prevent the panicked look” he sees in a young couple’s eyes as he prepares to run the tests that will confirm his suspicions; they eavesdrop his interior thoughts as he realizes that this young couple had “walked into the room with a future” and suddenly everything is different. Our discussion centers on the physician as a bridge between the life they knew before and the unknown outcome awaiting them with treatment.

What intrigues the students and most readers I suspect is that Gibbs does not make the diagnosis his most powerful image or conclusion. He lets us know the ending is not going to be a felicitous one, but what emerges as the more important part of the story is how the young couple and the physicians and the nurses met this most unwelcome death. The wife expresses her husband’s and her desire that everything be done to save her baby. The nurses make sure that the couple is given as much privacy and quiet time alone as possible. In addition to his regular visits, the physician asks the nurses to call him whenever there seems to be a change, good or bad, in the patient’s condition so that he may provide whatever solace he can conjure. Once this leads him to a late night visit to McDonalds for a strawberry milkshake, the same kind he remembers bringing his mother when her lips were ulcerated from radiation. He recognizes that although so much more is known about the disease and so many more people have been helped, in this case, with this patient, he is again facing an indescribable loss. Thus, our physicians-in-training learn about bedside visits and about complementary treatments that won’t be found on insurance forms or hospital billing codes.

And the students see that it is Dr. Gibbs who calls the code after the C-section brings a healthy son into the world a little bit before his mother must leave it. When he goes to the calling hours, Dr. Gibbs tells his readers that “obstetricians aren’t supposed to lose patients” and confesses that is why he chose this specialty. But our students are learning that all physicians and all of us will stand at some point in the presence of death and how we handle that perhaps defines us in quintessential ways. In this instance, Dr. Gibbs and the nurses find themselves marking the anniversary of the patient’s death each year with some poetry and some conversation. It has been 7 years now, and he sees this ritual as one of the ways we insist upon a recognition that we matter, that we were here only for a short time and yet we were loved.

If in our medical education, we are almost solely fixated on disease properties and drug and surgical interventions, we will not be prepared very well for those times when the black bag runs out of tricks, when disease proves more powerful than goodness or justice or mercy. Journals like The Healing Muse remind us that healing can occur even in the presence of bad outcomes and that good writing can, as Rafael Campo said, “make empathy for human suffering, if not entirely comprehensible, then at least clearly and palpably evident.”

Patients Owning Their Narratives

When we do readings here in Syracuse or when we travel to other venues with The Muse in hand, we encourage our listeners to write for us too. We have found an enthusiastic audience in those who have experienced illness or who have cared for loved ones with illness. Their stories and poems can offer details that flesh out a patient’s history or chart. In the poem “Shaking,” for example, the reader learns that the speaker is not just a woman who suffers intermittent seizures after her brain surgeries but rather a mother who’s concerned that these seizures are frightening her children. In sixteen short lines, she reveals her fear and her neurosurgeon’s careless disregard of this fact as he mockingly re-enacts how her arms flail when an episode occurs. There is no more dramatic or concise way to convey the importance of listening to a patient; the students are as shocked as the patient when they realize that the physician has only scared the patient and furthered her isolation.

Our new issue includes an essay by a person who received electric shock treatments to relieve her depression. We enter her world and come away wondering as she does, is this truly the best we can do for each other? It is not only the treatment that her essay questions but the way we provide such treatment that makes us cringe. Her words and images are powerful testaments to the human spirit, and they connect her to us, bursting through the isolation her illness seemed to force upon her. Like the current running through her nervous system, her essay jolts us into awareness and dialogue. We see her, truly see her, and by the essay’s conclusion, we know something important about her. And we wonder how much of this her clinicians know.

Some might think it ironic that medicine could use literature to return the profession back to its focus on the patient. Managed care and technology have pushed clinicians away from people and into numbers, statistics, and machines as supposedly more reliable gauges of health. The growing body of literature from physicians and lay people, however, shows that people are pushing back. We find in journals like The Healing Muse and in the columns of medical journals evidence that the desire for connection and the benefits derived from it are real and affecting.

“Tell me a story,” a child says to a parent, and the magic begins. Later, the child will ask “Tell me a story about when I was little,” or “when I was born,” and again the weaving together of our past and present begins and helps to create our sense of self. We see ourselves reflected in the stories told by those who care for us, who love us. And when we are sick, our families want to tell our story to the doctors and nurses, to the therapists, to anyone who comes to give us the magic of the pill or the treatment. We believe that if they know us more intimately, they will care for us more carefully, and we will surely improve.

The power of language is such that it can introduce strangers and within minutes transform them into people who find themselves curious about each other, whose curiosity then compels them to go further into the story, and who finally may end up caring deeply about each other. Is this not a possible description for good medicine?

Buy two copies of the new Muse and call me in the morning.

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