This is the story of a dancing banana. Try saying it out loud: “Dancing banana.” On the first syllable of “dancing” and the second syllable of “banana” your mouth turns up into a smile.
This is the story of two dancing bananas.
I have a new friend. Her name is Jane. She is a remarkable visual artist, a retired high school art teacher, a mama of two kitties—Grace and Frankie, a wearer of many hats (literally and figuratively), and a lover of the moon, hummingbirds and butterflies. Jane is also a person living with Alzheimer’s Disease.
Jane and I were dancing over Zoom recently when she asked her wife, “Do we have any bananas?” Her wife, Joyce, nodded at the fruit basket. Jane sauntered over and retrieved one. I grabbed a banana, too. Jane tucked hers into the front of her shirt. I copied her, leaving the stem poking out. It looked like the beak of a yellow bird. I started whistling. Jane copied me. We gently danced our banana birds. We whistled and balanced our bananas on our heads, hands and feet. We listened to them like telephones. We smoked them like cigars.
Then Jane asked Joyce if they had any more bananas. I only had the one so I grabbed a gourd. Jane retrieved a second banana. She placed her bananas in her imaginary holster. Mine went into my waistband. Joyce said, “Ready…Set…” (Jane wiggled her fingers), “Fire!” Jane’s draw was so fast I got caught with my hands in my pants. We erupted in peals of laughter.
***
This is the story of a pool. An ephemeral pool. A pool that Joyce swims / floats / occasionally splashes around in with others / occasionally submerges in alone.
Joyce is a mother, grandmother, retired court reporter and creative writer. I have asked her to help me write a handbook on how to support dementia caregivers. She comes from a family of strong women, but when it comes to caregiving she chafes when people say, “Oh, you’re so strong, you’re so brave. It must be SO hard.”
“What is SO hard, tell me?” she writes in the handbook. “And what would you expect? ‘You’re so brave, you’re so strong’ – would you expect a caregiver to be anything else?”
Many of us have been treading water since the pandemic started. Joyce has been caregiving 24/7 with very little respite. I imagine a constant caregiver hiss, a drone drowning out everything else. “The pool” metaphor surfaced during the wintertime. “It’s hard to come out of caregiving, out of the pool,” Joyce writes. “Come see me inside the pool, swim with me and keep the loneliness at bay.”
Dementia caregivers are especially susceptible to Caregiver Burden, a medical term used to describe a state of physical, mental and emotional exhaustion.
“It’s like existing in another substance,” Joyce writes. “Grief touches every place, every cell, like water, it changes you. Joy can emerge from grief. Rowena comes and jumps in the pool with us.”
***
I met Joyce and Jane in February 2020 when I was looking for participants for a creative research project I’m piloting. Over the past five years my For You performance collective collaborators, Erika Chong Shuch and Ryan Tacata, and I have developed a person-centered performance practice. Our goals are to bring strangers together and to make performances as gifts. We wanted to see if this practice of personalized creative engagement could make a difference in the lives of dementia caregivers and their care recipients, people who are often isolated and stigmatized.
“Welcome to ‘Joyce to the World —A Winter Solstice Variety Show,’” I announced to a handful of guests on Zoom. It was Monday December 21st during the Saturn-Jupiter Great Conjunction of 2020. The pandemic was surging so we abandoned our flash mob performance fantasy and instead presented a scrappy Zoom-based potpourri of performative gifts for Joyce: “butterflies” (Erika) dancing out from under bedsheets, an art lecture from Ryan’s bathtub, an animal spirit card reading from a shamanistic cat (my friend Temple).
I opened the show with a dedication: “As a devoted partner, mother, grandmother and friend; as a cosmic being full of grace; as a human companion to Grace and Frankie; and as a full time dementia caregiver full of love without condition…” A sob lodged in my throat. All of the unexpressed tears that had accumulated over months of witnessing Joyce were swimming to the surface. “…This is a gift to say: We see you. We hear you. And we love you!” Erika’s cousins–Ted and Merrill, Willa and Corey–kicked things off by caroling, “Joyce to the world / this is a song / for Joyce / rejoice / and sing! / Let every heart / prepare her room / the wonder of her love / the wonder of her love / the wonder, wonder of her love…”
***
This is a story that repeats itself. The other day Jane asked, “Do you know me?” I told her I did. “How long have you known me?” I told her I met her about a year ago. “How do you know me?” she asked. “As a fellow artist,” I said. “I think we can learn from each other about how art can support dementia,” I told her, “because I think it really, really helps.”
“Can I ask you a question?” Jane said. “How long have you known me?” I told her about a year. “How do you know me?” she asked. I told her that I was a fellow artist learning how to help people with dementia. “Oh, dimm..dimm…that word,” she said, struggling to say “dementia.”
“Can I ask you a question?” I said. “What is something nice we can do for Joyce?” She thought about it for a moment and then replied, “It’s hard to say.” I responded by hugging myself and then extending my arms out to her. She opened her arms, raised and lowered them, like wings. (Birds and birdwatching are some of Jane’s favorite things). The barrier of language was removed; there was no sense of right or wrong answers; we were just moving together. Art Therapist and Experiential Researcher Dr. Erin Partridge has said working with people with dementia in this way–in a creative, non-judgmental, non-goal-oriented way–communicates, “You are worthy of having community. I see you.”
***
I am an Atlantic Fellow for Equity in Brain Health at the Global Brain Health Institute (GBHI), a program at UCSF and Trinity College, Dublin, dedicated to improving brain health and reducing the scale and impact of dementia worldwide. Through the fellowship I was awarded a grant by GBHI, the Alzheimer’s Association and the Alzheimer’s Society (UK) to pilot For You’s personalized creative engagement practice. One of the aims of the pilot is “To validate care partners and their loved ones living with dementia. Oftentimes we think of performance as an opportunity to see. What happens if it’s an opportunity for audiences—our participating care partners and their loved ones—to be seen?”
Is there a tool that measures how it feels to be seen?
One of my favorite GBHI faculty members, Dr. Virginia Sturm, Associate Professor of Neurology and Psychiatry at UCSF, developed a study called “Awe Walks.” In the study, older adults who took weekly 15-minute “awe walks”–focusing their energy and attention outward instead of inward–reported increased positive emotions and less distress in their daily lives. This shift was reflected in “selfies” participants took on their walks, in which an increasing focus on their surroundings rather than themselves was paralleled by measurably broader smiles by the end of the study. They could see the measurable change in the number of pixels the smiles occupied.
Science requires proof. I’m having difficulty proving our claim that personalized creative engagement validates the experience and worth of care partners and their loved ones. For one thing, I’m struggling to come up with an assessment tool that is both sensitive enough to measure the amount of “validation” that Jane experiences, and flexible enough to work with her capacity for assessments. A tool that wouldn’t require her to come up with answers that are “Hard to say.”
***
But there’s another obstacle making it hard to prove. A societal hurdle that is making me question whether this is a viable model: People’s resistance to art. Resistance not only from the scientific community which can be dismissive of even the most rigorous arts-based research but from folks we’d like to recruit. In general people don’t line up when you say, “I have an art project, would you like to participate?” They back away.
Anne Basting is one of the most seasoned practitioners in the creative care arena. She is a MacArthur “genius” Fellow, an author, professor, and the founder of TimeSlips, a storytelling-based participatory program designed for the dementia population. The TimeSlips motto is: “Forget memory, try imagination!” Anne has dedicated her career to bringing opportunities for “meaning making” to people all the way to the end of life.
Last month I attended a webinar Anne gave where she addressed both the Arts vs. Science tension and the problem with saying the word “art.”
“Our systems have a residue from the institutionalization of medicine and the institutionalization of arts as separate entities from the 1800s. We are slowly getting to a place where I think we can now start refusing that separation. For people who work in the health system, you should constantly be asking yourself, ‘Are there opportunities for meaning making here?’ And in cultural settings, ‘Are we attentive to accessibility for people from all different ranges of health and abilities?’”
Anne envisions art as water to pour meaning-making opportunities into the cultural and health systems. But she, too, has been deserted when she invites people to participate in art projects. In one instance, she invited older people living alone to participate in an art project that involved responding to creative prompts. The response: crickets. “What we decided to do was not reference art at all,” Anne explained, “because the baggage and resistance to creativity and art-making was so tremendous that we decided to just say our invitation to participate was, ‘I have a question of the day, would you like to hear it?’” Then she got an overwhelming response.
There’s a part of me that subscribes to this code-switching tactic—calling our pilot an “intervention” when we’re talking to researchers, an “art project” when we’re talking to artists, “deep hanging out” when we’re trying to recruit participants. But part of me worries: how are we ever going to substantiate art if we can’t say it? Won’t it always be hard to say? How do we unpack the baggage that has led people to doubt their creative capacity for so long?
***
Sometimes when the parts of the brain that block inhibition shut down, the impetus for unfiltered creativity and novelty comes online–the baggage is discarded. Every time I meet with Jane I find beauty and wonder, whether she’s constructing sculptures out of avocado sandwiches, party hats out of cat toys, or banana dances. Her creative self-expression is incredibly articulate. And I end up expressing myself, too, in ways I never have before.
My role in the pilot is to offer what Anne describes as “radical affirmation and demonstration of that affirmation of choices.” Anne calls this “proof of listening.” I call it “validating.” It goes both ways: Jane and Joyce affirm and reflect—validate—me. It is a healing experience for all of us. One that motivates me to keep chipping away to create the world I want to grow old in, a world where I can play fully at the limits of what I can possibly do. A world where, if I have dementia or my loved one has dementia, people don’t disappear because they don’t know what to say or how to see us. Instead, they flock to us because what we’re doing in response to dementia is flourishing.
“The greatest joy of caregiving comes when someone else embraces my loved one.” Joyce writes. “It is such a pleasure and liberation to witness that.”
A couple days ago I received a text from Joyce. She and Jane have both had their vaccinations and they went out to breakfast with friends for the first time in a year. Joyce wrote: “We all witnessed Jane soak in all the social contact and come quite alive and present. Everyone made sure to enjoy being with her, letting her hold their hands and wave at birds. It was fuckin cool!”
Through the text message I could hear Joyce’s voice rise above the caregiver drone. Like a diver suddenly emerging from the depths of a pool.
Rowena Richie has been a dance theater-maker and performer in San Francisco for 25 years. She’s a member of For You, a performance collective, along with Erika Chong Shuch and Ryan Tacata. She’s also an Atlantic Fellow for Equity in Brain Health and an Encore.org Gen2Gen Innovation Fellow. Learn more about For You at foryou.productions. Learn more about GBHI at gbhi.org.
Jane and Joyce have been together for 20 years. They were married in 2015 after returning to their San Francisco home from 10 years living in a small village north of Albuquerque, New Mexico. Jane is retired from teaching art at San Mateo High School. Joyce retired early from freelance court reporting and is Jane’s primary care partner.
This article appeared in the Spring 2021 issue of In Dance.
