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Alzheimer’s Through the Looking Glass

Part One of the Aliceheimer’s Project

Aliceheimer’s found me rather than the other way around. In February of 2008, for the second time in six months, my mother, Alice, was kicked out of her apartment. The reason? Her Alzheimer’s disease. My sister and I looked for alternatives around New York City, her lifelong home. We were hoping to keep her near the relatives to whom she was the closest and near her friends. Instead, she moved hundreds of miles north to live with me and my family in the Vermont woods. Vermont winters are long and cold. She hated snow. I was the daughter who got on her nerves. The feeling was mutual.

It wasn’t nobility or martyrdom that led me to think this was a good plan. On the surface, I couldn’t bear to see my mother in the lockdown “memory care” unit. Impaired as she was, all her social graces were intact. Alice was as loquacious, intelligent, and charming as ever, and the people in memory care often don’t speak much. That she knew us might ground her. The unfamiliar fields and woods might curb her wandering and her attempts to walk home. Our farmhouse was peaceful. Nature could soothe her.

Although all of this was true, my real motivations were deep down and hidden. We had unfinished business. I wanted to create a bond with my mother, to redo the past, and to fill the hole inside of me. In the middle of dementia, somehow, my mother wanted to do the same.

Over the next few years, this is exactly what we did. In the process, all the disparate threads of my life intertwined: creative writing, visual art, and medical anthropology.

In fact, I was a bitter medical anthropologist when my demented mother moved in with us. Exhausted by years of teaching in a medical school, I was the professor responsible for incorporating culture, diversity, death, dying, and humanism into the required medical curriculum. The last thing I needed was another hard job.

Anthropologists often enter the world of biomedicine because U.S. medical schools are required to demonstrate that they have trained their students to be “culturally competent.” The anthropological knowledge that facilitates caring for diverse patients is mandated by national accreditation standards. This cultural competency, unlike anthropological training, is meant to be acquired rapidly, according to the axiom that prevails in medical education: “See one. Do one. Teach one.”

As an anthropologist, I wanted to do more. I wanted students to be able to understand medical systems as cultural systems; to see the social and political determinants of sickness and health; to grasp the social aspects of science; and to perceive the racism, sexism, heterosexism, ableism, and other forms of structural violence embedded in biomedicine. As they crammed scientific facts into their heads, I wanted students to witness their own responses to patient stories, firsthand and raw. Though I was proud of the program I had built, I desperately needed a break from that world. That’s when my mother moved in.

Anthropologists have a long history of telling stories about the people we study. Our training emphasizes the development of a reflexive muscle so that we can bracket off the ways our personal stories intersect and perhaps even interfere with objective stories. Over time, this reflexivity has allowed anthropologists to consciously blend their personal stories with those of the people they study. For the story of Alice and me, it was a bit the other way around. I was running from anthropology and academia as I started Aliceheimer’s. But somehow the anthropology kept seeping in.

Most anthropological stories tend to be wholly verbal despite our evolutionary history, in which visual skills long preceded the acquisition of language. Each of us could see long before we could speak. At birth our eyes can focus as far as 15–20 cm, the distance between the faces of a mother and her infant. Over the coming weeks, the rest of the world comes into focus. But it is months before the first spoken words, years before paragraphs, and many years before paragraphs get concatenated into a story.

Pictures also come before words in the earliest cave paintings. The oldest forms of writing were pictorial. The hallowed tradition of illuminated manuscripts brings pictures to story. Despite all this, graphic narratives, comics, bande dessinée, and sequential art by any name have been considered a lower form of storytelling and certainly not part of the academy.

I know this much to be true: Graphic storytelling captures the complexity of life and death, of sickness and health. Going back and forth between the subconscious and conscious, between the visual and the verbal, lets us tap into our collective memory, an essential element of storytelling.

In the fall of 2010, I made a pact with an artist friend who lives in Beijing to make a drawing a day and to e-mail them to each other. I sent her Alice drawings in part to process my own grief after placing my mother in an Alzheimer’s residence after several years of her living with us in Vermont. But I was also drawing to remember the magic and laughter of that time.

I found the story’s voice the day I cut up a cheap paperback copy of Lewis Carroll’s Alice in Wonderland, using the page fragments to make her bathrobe, Alice’s favorite garment. “Apples Are Better” was the first picture that I made for this book. It was only after drawing it in its entirety that I realized that the haloes that had appeared around Alice’s head were reminiscent of Armenian manuscripts, a subconscious reference to her first language, to her reversion to childhood, and to her altered magical state.

Cartoonist and author-illustrator Mo Willems has said, “never start drawing a visual story on page 1 . . . it takes time to find the voice.” After that first drawing on page 8, I knew I had found the voice. I went back to page 1 and quickly filled a sketchbook. The original twenty-five drawings—a part of the Brooklyn Art Library’s Sketchbook Project—tell a love story. In turn, the drawings inspired a series of essays, grew into large-scale art installations, launched me into the field of graphic medicine, sent me to Armenia as a Fulbright Scholar, and led to the book you are now holding. This is the power of story.

The medium of comics is perfect for telling the Aliceheimer’s story because comics are all about rule breaking. Likewise, the Sketchbook Project reverses the rules of engaging with art and books. Ultimately, the precious originals disappear, and only a digital record remains. So like letting go of someone.

For me, as the originals disappeared, new layers emerged. I began to print life-size versions of the digital images onto canvas and large sheets of paper and to embroider the haloes and slippers to honor my mother’s love for mending. As I was sewing, the tangle of threads on the wrong sides of the cloth reminded me of the plaques and tangles of Alzheimer’s disease. To save my fingertips, I began using an awl to poke holes in the canvas for the threads, and another layer appeared. My mother’s father, a shoemaker, must have used an awl each day at work.

A picture’s ability to tap into subconscious processes for both the composer and the reader give graphic storytelling its power. I have found that this power can support those with dementia. It can heal and support individual caregivers, and it can help rewrite the dominant biomedical story of dementia and how we approach aging globally. This biomedical story is in desperate need of revision.

The dominant narrative is a horror story. People with Alzheimer’s are perceived as zombies, bodies without minds, waiting for valiant researchers to find a cure. For Alice and me, the story was different. Alzheimer’s was a time of healing and magic. Of course, there is loss with dementia, but what matters is how we approach our losses and our gains. Reframing dementia as a different way of being, as a window into another reality, lets people living in that state be our teachers—useful, true humans who contribute to our collective good, instead of scary zombies.

If you believe that science is the only way to understand sickness and health, then finding the good in a disease state at the end of the life cycle is an uncomfortable notion. But for anthropologists, medicine is not just science but a collection of beliefs and practices. Biomedicine’s power to cure disease and to repair individual bodies has led to its spread throughout the world, obscuring the fact that it is a cultural system and that, like any human-made system, it has its flaws.

Biomedicine locates sickness in a specific place in an individual body: a headache, a stomachache, a torn knee, lung cancer. Medical anthropologists instead locate sickness and health in three interconnected bodies: the political, the social, and the physical.* The prevailing political economy impacts the distribution of sickness and health in a society and the means available to heal those who are sick. For example, poor individuals worldwide are more exposed to toxins that make them sick, while the rich stay healthier. The social body constructs the meanings and experiences surrounding particular physical states. It determines the ideal physical body, legitimizing biomedical practices like plastic surgery to attain it. The social body also determines the boundaries of the physical body.

Some cultures locate sickness not in individuals but instead in families or communities. As any caregiver knows, we live the sickness too. And while biomedicine can cure diseases, it flounders with permanent hurts, troubles of the mind, states present from birth or that are incurable or progressive. In biomedicine, these states are stigmatized and feared. We medical anthropologists have a term for this: social death.

The squares in this figure represent biological birth and death: emergence from the womb and that final beat of the heart or that final breath. But each culture also defines when life begins and ends, when personhood is conferred or taken away. For example, different definitions of social birth result in the abortion controversy. At the end of life, the social definition of brain death lets physicians, in countries like the United States, harvest organs for transplant, even from someone who still has a beating heart. This isn’t an acceptable medical practice in Japan.

Stigma, silence, and social death surround rejected ways of being and echo through the hallways of hospitals, medical school lecture rooms, and textbooks. This is where stories and comics come in. They can rewrite the dominant narrative. Around the world, comic artists, caretakers, parents, and assorted onlookers are taking up their drawing tools, pens, papers, scissors, and computers to depict illnesses and ways of being human that have been stigmatized. This is graphic medicine.

The images and words of a graphic narrative bring back the humanity of a person with dementia. We see Alice. She makes us smile. My mother, a lifelong book lover, devoured every graphic narrative that came into the house, even without the benefit of a short-term memory. Watching this convinced me that I needed to use a medium that someone with dementia could access.

Comics can reflect the quick wit and intelligence that people with Alzheimer’s disease can retain. The caregivers for the estimated 44 million people with dementia globally are in desperate need of a laugh. Subconsciously we associate graphic narratives and comics with laughter. The medium itself grants permission to laugh at the experience. Laughter is respite. It opens new possibilities for how to cope.

Besides needing a laugh, caregivers are a tired group with limited free time. Graphic storytelling has the advantage of speed. Pictures compress narrative. They establish setting and tone immediately.

Conflicting realities can coexist in a single image just as they do for people with dementia and their caregivers. Seeing the two realities on a page can make it easier for a caregiver to stop pushing back, to let the more benign hallucinations be a part of life—like when my mother saw my dead father up in the branches of a tree. What seems delusional may be the manifestation of desire. Emotions may be transformed into physical sensations and signal a need for a conversation, as when my mother called me over to check to see whether she had grown hooves and horns.

The most amazing property of stories is their power to heal. Facing death, people crave ways to find forgiveness and to heal, just as my mother and I have done over the course of Alzheimer’s. Healing is not the same as curing a disease. Healing involves creating shared social meaning. It does not take place inside of individual bodies. It doesn’t involve surgery or taking a pill. This social process depends on sharing stories with others, on letting our collective memories meet. By meeting through story, we make peace and move on even if we are sick, hurt, or dying.

I encourage you to read the book in several ways. Page through to feel the storyline as it exists in the drawings on their own; read it from cover to cover, feeling the long narrative carried in the text that was inspired by the images and written over several years; and finally, when your attention is short, as it is for anyone with memory challenges or simply pressed for time, leaf through the book to any page and take in a single vignette along with the image that set that story into motion.

Pick up your pens. Tell your stories. And remember that showing the faces, the lived experience, and the daily reality of those with Alzheimer’s and other altered, different states removes the stigma and restores their humanity. Find comfort with alternate realities. Develop a fondness for ritual and magic. Embrace a critical stance toward authority. Understand that medical systems are cultural systems and that rules are both arbitrary and central to social interaction. Know that birth and death are not just biological happenings. Be an anthropologist to your own life.

Graphic medicine gives us ways to see the world through the eyes of others. We can better understand those who are hurting, feel their stories, and redraw and renegotiate those social boundaries. Most of all, it gives us a way to heal and to fly over the world as Alice does.

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*For more on this, see Nancy Scheper-Hughes and M. Margaret Lock, “The Mindful Body: A Prolegomenon to Medical Anthropology,” Medical Anthropology Quarterly 1, no. 1 (March 1987): 6–41.