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Through the Looking Glass, Finding Compassion

A medical anthropologist tilts perspectives on how to heal

Professor Dana Walrath presented Alzheimer’s Through the Looking Glass: Narrative Medicine and Healing at the Center on Aging Research Day. (Photo: Sally McCay)

Just for the humor – and laughter is going to be essential here – it’s hard to beat hearing Dana Walrath retell conversations with her mother, Alice, who suffers from Alzheimer’s disease. Alice’s lines are delivered with her Armenian-immigrant accent, taking her surreal thoughts further out of place and time.

“Dana, there are broccoli stalks coming out of my ears.”

“Wow, that must be kind of handy,” comes her daughter’s response, as Alice riffs on a preference for apples.

That small exchange conveys a powerful theme that runs through much of Walrath’s work. As a professor and anthropologist in UVM’s College of Medicine, as well as an artist and writer, Walrath advances ideas about what world cultures can teach doctors and other caregivers about nurturing patients, along with their families. Walrath put herself in that caregiver role – and her scholarship into practice – when she moved her mother to live with her and her husband. In response to that experience, she began work on her sketchbook, Alzheimer’s Through the Looking Glass.

When Alice saw things others didn’t – like dead relatives and dashing pirates – the visions were as real, in their way, to Walrath, whose response was not to correct but to sooth – and to bridge for as long as possible an inevitably increasing divide.

In her new blog, where she’s now pairing narrative with her graphic representation of “Aliceheimer’s,” Walrath writes, “I’ve… (made) her stories and hallucinations safe, normal, something not to be challenged. When… she would say, ‘You see (my mother) don’t you?’ I’d say, ‘I can’t see her but I’m sure you can. You have special powers. You can see things that we can’t.’ For her, that was enough.” 

And Walrath added rituals that comforted them both, a cup of tea, music, even an inverted version of that timeless connection between parent and child, bedtime stories. Inventive Scrabble helped keep things light, Walrath writes, as words increasingly eluded Alice. But who could argue with “drends (drĕndz) n.  The sweepings that don’t make it into the dustpan.”

Her style is a departure from a medical establishment bent on finding answers and following protocol. “It definitely comes from other healing traditions,” explains Walrath, who has lived in far-flung places from Yemen to Brazil. “It was extremely natural that I could think about other ways to understand what she was going through. Everyone has their own reality – and cultures dictate what reality is.”

Models in Medicine

The idea that medical systems are social constructs – and that doctors benefit from examining beliefs and practices surrounding health and sickness in other cultures – is what led Walrath to UVM, where she developed curriculum for a required first-year course (currently called Leadership and Professionalism). Her efforts were initially met with resistance from both students and faculty, according to G. Scott Waterman, M.D., professor of psychiatry and associate dean for student affairs, but that’s changed relatively rapidly. “I think her perseverance, clarity of purpose and serious understanding of disciplines that we know intersect with medicine, from anthropology to the arts, gave her a perfect foundation from which to be credible in talking about the need to broaden medical education,” he says.

Walrath’s classes, which she first taught and then trained other medical faculty to lead, use a number of approaches to help students work with diverse populations; to see how the effects of illness go beyond the individual; and to see that students and doctors must care for themselves as well.

“I love this course,” says Lewis First, professor and chair of the Department of Pediatrics; chief of pediatrics, Vermont Children's Hospital at Fletcher Allen Health Care; and a course facilitator since its inception. “It’s almost a renewal of vows for why I chose the profession of medicine and I hope it creates the same excitement and respect and reverence for what we do in our students not just for their first year in medical school but for the rest of their lives.”

Walrath built into this curriculum visits to the Fleming Museum where students could observe and reflect on influences across cultures; she brought in speakers such as parents, who tell what it means to have a child who is critically ill or dies, and doctors, who talk about struggles with addiction. She had students follow the hospital’s spiritual care team, asking them to consider what meaning might come from a doctor moving closer rather than withdrawing as a patient nears the end of life.

And Walrath (who has been on leave to care for her mother since mid-2008 and will return to the faculty in a different capacity in July) made sure the course correlates to what is happening for students in their other classes. They are prepared ahead, for example, with readings and discussions for the day in anatomy and physiology when they first meet their cadavers. Walrath has earned her bona fides on the topic, electing, while working on her doctorate in anthropology, to take gross anatomy and do dissections along with medical students at the University of Pennsylvania.

After their first encounter with cadavers Walrath gave students an expressive assignment. “Some students wrote music, some drew pictures, some wrote poems, some just wrote straight narrative,” Walrath says. “There were beautiful pieces of writing because how could it not be this huge transformative sort of experience?”

The students were getting a taste of narrative medicine, a relatively new trend toward understanding, processing and interpreting experience. But it is in fact an old idea – Walrath names physician-writers such as Chekov and William Carlos Williams. It’s what Harvard surgeon and New Yorker contributing writer Atul Gawande does when he examines mistakes and lessons in his book Complications, and it’s what Walrath does when she seeks to make sense of her mother’s illness.

Sailing Heart-Ships

As an anthropologist, Walrath seems to find solace in the knowledge that the earliest medical classification systems from cultures as diverse as the Cebuano from the Philippines and the Zinacanteco in southern Mexico describe a condition known simply and aptly as "soul loss." But it also makes plain why the grief of Alzheimer’s begins even when the body seems sound.

Alice (finally, now, requiring a medical facility) didn’t experience so much of the anger that is such a common reaction to this disease. But certainly she had her share of sad confusion, repetition, bittersweet, likely unintentional, humor:

“’Dana, am I going crazy? You would tell me if I had lost my marbles wouldn’t you?’”  Walrath writes.

“’No. You’re not crazy. You have Alzheimer’s disease so you can’t remember what just happened.’”

“’Oh. I forgot. What a lousy thing to have.’”

So Walrath, who has undergraduate degrees in fine arts and biology from Barnard and has studied painting with Milton Resnick, got out her basic pencils and scissors, drawing and creating collage from cut text of Lewis Carol’s Alice in Wonderland, “playing every single day” in what she says was a sort of celebration and grieving all at once. The characteristics and details of her artwork -- the flatness and folk style of the sketches, the halos around her mother’s head – seemed to have unlocked from the roots of her subconscious the imagery of medieval Armenian miniatures.

In the written reflections that accompany the images – a work-in-progress she intends to publish as a book – through all the whimsy, Walrath is still teaching, particularly those who might be struggling with the exhausting, angry, awkward nature of life surrounding Alzheimer’s. She let's us in on “drends” and other things easier swept under the rug. Like the way this disease dissolves societal filters on the things we do and say. Like the fact that a patient, particularly one whose memories may be locked in a younger time, may openly express sexual feelings – not issues on the neurologist’s checklist, Walrath notes.

Thinking about the lessons she shares with medical students, Walrath says she has wrestled over her mother’s privacy in terms of some of the things she reveals. But it’s something she’s come to terms with. “I’m writing this for people who are in this situation, for the people who are handling it,” Walrath says. “Not to say real things doesn’t seem fair.”

She tells the truth she knows, creating a map of a world only imagined – and lets her mother’s soul sail where it will.