Art as a Means for Survival: A Visit to the Museum

It’s Friday, and after a long morning of stressful clinic calls that included coordinating appointments, negotiating a telehealth option amid the ongoing COVID-19 pandemic, and asking for and hoping a prior authorization drops on my Trikafta (elexacaftor, tezacaftor, and ivacaftor) before I need the refill, I decide I deserve a treat.

I already had an appointment to flush my PowerPort, and the infusion clinic lives only a hop, skip, and jump up the road from the always-free permanent collection at the Crystal Bridges Museum of American Art in Bentonville, Arkansas. And it doesn’t take much to persuade me to look at free art.

It’s warmer today than it’s been, and warmer than I’d anticipated, a burst of air melting the half-foot of snow that closed the University of Arkansas campus in Fayetteville earlier in the week. In the forest surrounding the art museum, in the shady spots where the sun can’t reach, there are still slabs of snow refusing to melt.

I pull off my long-sleeve flannel I’d planned to use as a light jacket and tie it around my waist. That and the mask would keep me warm enough. I take a peek under my shirt to see that my port hasn’t bled, so I pull off the bandage and drop it in the trash beside the check-in kiosk, where I flip through the tickets available. I could take a guided tour through the Frank Lloyd Wright Bachman-Wilson House, but that sounds like a crowded, unventilated space. I’ll pass.

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In the contemporary art wing of the museum is Yayoi Kusama’s “Infinity Mirrored Room — My Heart is Dancing into the Universe” installation, a small box that barely looks like it would fit more than a person or two. It doesn’t look like much from the outside. The docent says as much to the group of four middle-aged women walking almost too close behind me. None of them is wearing a mask.

I glance at the nondescript sliding door behind the employee managing the entrance and into the small room. Last time I was here, they only allowed ticketed entry.

“There’s not really a line right now,” says the employee, gesturing to the gray-haired couple standing in front of her. “So it wouldn’t be much wait!”

Ticketed entry, I realize as I walk to the wooden ramp sloping up to the door, was to have some sort of cap on the amount of people entering the tiny, enclosed space. I wonder when they stopped doing that.

In line, the women are definitely standing too close to me now. There’s no one behind them. I adjust the ear loops to make sure the seal on my mask is tight and hope they notice I’m uncomfortable and take a step back. They don’t.

“You’ll have about one minute in the room,” the employee — I now see her nametag: Megan — says to the couple in front of me. They’re nodding along, listening eagerly, also without a mask on. I wonder if anyone in this line realizes that they, even if asymptomatic, could be sharing COVID-19. I, like other columnists with cystic fibrosis or other diseases, wish people would just wear a mask.

Unaware of my internal anxious monologue, Megan continues her practiced-perfect instructions. “There’s a pathway that guides you through,” she says. “My best advice is to follow the grout line in the middle; it’s directly between the two guide ledges. Don’t touch any of the lanterns. At the end of a minute, I’ll give a tap on the door; that’s your signal to head on out the other side so the next person can enjoy the art. No more than two people at a time can go in.”

Kusama, regarded as one of the most important contemporary artists from Japan, is known for her use of repeated patterns and bold colors. The patterns vary, but what I know her for is endless polka dots. Whatever pattern she uses, though, her works are always larger than life; she’s a master who can transport me out of my reality and into a world that feels as loud as I imagine the hallucinations that inspire them must feel.

Stepping into this exhibit is like entering a secret world that happens to exist inside an art museum.

Paper lanterns hang from the ceiling, and the mirrors on every wall reflect the slowly changing rainbow of colors as the lights in the lanterns all pulse a slow heartbeat. For a moment, even though I can hear the mucus crackling in my lungs, I’m thinking of how art is more than magic because sometimes it’s survival.

Kusama takes her hallucinations and translates them into a lived experience. Her canvases are often larger than life, and she’s known for these “Infinity Rooms” that are literally whole-body experiences. When I’m in this room alone, I’m not thinking of the mask on my face protecting my disabled body from the crippling and airborne virus that’s likely in the air.

I can still hear the small wheeze in my lungs. But standing on the grout line and watching the lanterns slowly ebb and flow from color to color, I’m thinking of my stuttering lungs while being reminded that I’m not alone in my disabled desire for coping and connection.

Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to cystic fibrosis.