Alzheimer’s Disease as an Adventure in Wonderland

In her memoir “Aliceheimer’s: Alzheimer’s Through the Looking Glass,” Dana Walrath uses drawings and stories to chronicle three years of caregiving for her mother, Alice, who was in the middle stages of Alzheimer’s disease. The experience turned out to be a magical trip down the rabbit hole of memory loss, an outcome that inspired Dr. Walrath, a medical anthropologist who taught at the University of Vermont College of Medicine and who also studied art and writing, to share their tale.

Refusing to accept the dominant narrative of Alzheimer’s disease as a horror story, Dr. Walrath used the techniques of graphic medicine to create “Aliceheimer’s,” an 80-page, 35-picture tribute to her mother’s animated mind. Graphic medicine uses text and graphics to, as she writes in the book’s introduction, “let us better understand those who are hurting, feel their stories, and redraw and renegotiate those social boundaries.”

We spoke with Dr. Walrath to learn more about graphic medicine, how the book came into being, and what it can teach others about caring for someone with Alzheimer’s disease. Here’s an edited excerpt of our conversation.

Q.
You say that “Aliceheimer’s” found you, not the other way around. What’s the backstory of your story?

A.
After a lifetime of mutually abrasive interaction, my mother moved into my home when a lock-down memory-care unit was her only other option. The years of living together not only brought us closure, but it also integrated my disparate career threads. Medical anthropology, creative writing, visual art — who knew they were connected? I sure didn’t. But Alice must have. During dementia, she said to me, “You should quit your job and make art full time.”

What is “graphic medicine” and how did you discover the genre?

A.
I started making “Aliceheimer’s” comics before I knew that graphic medicine existed. Watching Alice — a lifelong reader who was finding straight prose too hard to track — eat up books like “Maus,” “Persepolis,” “American Born Chinese” and “Fun Home” when she lived with me, made me certain that to tell our story I wanted to use a form that a person with dementia could access. When a fellow medical anthropologist introduced me to graphic medicine, I knew I had found my tribe. The “Graphic Medicine Manifesto” defines graphic medicine as “the intersection of the medium of comics and the discourse of health care.”

Q.
Which came first: your drawings or your stories? When and how did they merge?

A.
The drawings came first. If you page through “Aliceheimer’s” looking only at the left-hand pages, you can read the original comic, a love story in pictures. I started writing short vignettes, each one in response to one of the original drawings. I began posting them on a blog until the content felt right for the intimate interior of a book.

Q.
How did the “Alice in Wonderland” theme come into play?

A.
My father had read it out loud to us as kids, and during dementia Alice and I often recited parts of it together. But the day I cut up a cheap paperback copy of “Alice in Wonderland” to depict Alice’s bathrobe, her favorite garment, I knew I had found the voice for the story. Life with dementia is filled with alternate realities and magic, both scary and uplifting. Accepting wonderland as our baseline made day to day life an adventure.

How might “Aliceheimer’s” influence the medical, artistic and caregiving communities?

A.
I would love to see “Aliceheimer’s” contribute to reframing dementia as a diversity issue. Of course there is loss involved, but the more we can see people living in this state as useful true humans who might teach us all something about living in the present, about knowing sides of our loved ones that social processes kept inaccessible, the better it will be.

I would love for the medical community to start to touch on the opportunities for closure and forgiveness that this condition might bring instead of the ongoing fight for the cure. For artistic and caregiving communities, I hope the book empowers people to tell their stories, particularly in comics form.

Q.
In “Aliceheimer’s,” you suggest new ways of thinking about Alzheimer’s. How did your mother’s memory-stealing disease open your mind?

A.
The dominant zombie story of bodies without minds strips people with dementia of their humanity and interferes with creating new kinds of familial connections. How many of us have the privilege of knowing our parents as children? Through connection we heal. Comics lead us to light because, subconsciously, we associate comics with laughter, and we need permission to laugh at sickness and not just describe it in medical terms. Laughter is respite. It opens new possibilities for how to cope.

What suggestions do you have for people caring for a loved one with Alzheimer’s?

A.
Learn to read the signs and messages embedded in your loved one’s actions. Often what looks delusional is an attempt to express a deeply felt need or desire. Dementia has them communicating through a code that we can track. Use the “Yes, and” principle from improv — in which you accept what the other person has said (“yes”) and then expand on that line of thinking (“and”) — to build on what your loved one is experiencing instead of contradicting them, and it will be easier to decipher his or her intentions.

Dementia lets all of us connect back to our deepest memories, to a time when we could communicate — give and receive stories — through the looks in each other’s eyes, through touch, facial expressions, actions and gestures. In this way, even in the midst of loss, dementia lets us heal.

(Source: well.blogs.nytimes.com)