The art of the ending: How poetry heals in hospice

By: Jacqueline Palfy .

wall with framed photographs at Ava's House
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SIOUX FALLS, S.D. — Lori Walsh looked at the photo of the snowy landscape, footprints meandering through it.

It hangs on a wall in Ava’s House.

Her stepmother, who was standing next to her, began to speak quietly.  She told a story about when she and Walsh’s father began dating. There was a blizzard, but they went outside for a walk anyway, just because they could. Walsh had never heard the story before, but it was a moment that mattered to her stepmother and her father, a pin dropped in their timeline, an emotion that surfaced as the two women stared at the snowy photo.

This is what intimacy looks like, a quiet reflection inspired by a painting or photograph, words and phrases layered on top. This is what happens when art heals and bridges the gap between where someone is – a hospice facility in central Sioux Falls, South Dakota – and who they are – a wife and daughter, thinking about the life of someone they loved and love.

Ava’s House sits on the northern edge of the Sanford Health campus, one of only four pediatric hospices in the country. It opened in October 2017 and was built using $10 million in philanthropy. It’s named after Ava Holder, who died from cancer at the age of 4. Her parents were so inspired by their experience at Ryan’s House, a pediatric hospice center in Arizona, that they helped make it happen in Sioux Falls.

They know firsthand what it’s like to need a healing space at the end of someone’s life.

Walsh does, too. Her father died from cancer in the past few years, her stepsister had home hospice and her brother has cancer. She takes her comfort how she always does – through reading and writing, language and literature.

When an arts consultant called and asked if she would come lead a group of employees and families to create poetry for Ava’s House, she immediately said yes.

Emotions into words

Walsh is a longtime writer, book reviewer, reader and host of South Dakota Public Broadcasting’s daily “In the Moment” show. Having conversations about what it means to be alive – and what it means to be dying – are at the core of the storytelling she does. Add to that her own experiences and her history as a writer-in-residence at Sanford Health, and she knew she could help take these emotions and turn them into words.

“Those emotions are very raw,” she said of her own memories, then called it a “dream project” to help others sort through their own.

It shows.

A group began to meet, sharing their stories of hospice. It was made up of staff members, community members and people who were just interested in Ava’s House. Walsh sent them writing prompts through email, brought them together as a group to talk about what they had written. They used magnetic poetry to create phrases within the confines of the game, journaled to let their minds roam free and spill over onto the page.

Sometimes it was just a word someone felt needed to be there. Peace. Mercy. Kindness. Love. A meditation or mantra they heard and felt and thought would inspire someone else.

Walsh took them all, wove them together, and presented back to the group a tapestry she calls truly collaborative. The exercise was as healing to the group as the result will be to guests at Ava’s House.

“It felt like this is how we should be humans together,” Walsh says of the workshops. “We should tell these stories. The stories they told and wrote were brave, were honest, were heartbreaking and were real, so incredibly real. It was humbling.”

Transformed

They were transformed in the process. This is how Walsh tells it: “I didn’t teach them line breaks or imagery or metaphor. I taught them to trust they had something to say. I gave them permission.”

But then she did something equally important: She quieted their self-consciousness.

“Then I took it away from them, so they couldn’t take it apart.”

That’s where the weaving came in – one poem created by many poets, people who were dads and nurses and painters beforehand. People who were changed by the death of a loved one, and then came back to stand with others living and dying that same experience.

Designed for healing

The photographs and poetry are just part of how the design of Ava’s House aims to heal. Both Walsh and Chrisie Funari, Ava’s mom, talked about that. Walsh mentioned the empty frames on the walls, for children to add artwork. “Knowing that the kids who come through there will also contribute to the design of the facility,” she said. “What can you say about that?”

Funari steps back in time, to Ava’s last days. She was 8 months pregnant at the time, sitting with her daughter at Ryan’s House. Ava wanted to go outside, but she was so full of fluid, Funari couldn’t pick her up to carry her, and the bed wouldn’t fit through the doors. She got her daughter into a wagon, wheeled her to the playground area. It was a challenge, but as Funari says, “she wanted to go outside one last time, and how can you not grant them that?”

At Ava’s House, that wish is easier to grant. Huge doors in each room open wide enough to allow a hospital bed to be wheeled outside, onto a semi-private patio area. She’s glad it will be easier for other families. Ava was able to watch her brother play on the playground, and Funari was able to do something her daughter wanted. “It was sad knowing it was the last time she was going to be outside, the last time she’ll see the sun and breathe fresh air.”

She pauses.

For Funari, there are so many moments that matter. Her poem is framed at the front door. Her daughter’s name is on the building. Every story told inside is inspired by her life.

“You always hear that people will forget your child,” Funari says. “She isn’t going to be forgotten now.”

“What I know for sure and for certain

Is that life is a story we write each day,

Giggling in the brook

As our feet turn numb.”

About Ava’s House

What: A 20-bed in-patient acute-level hospice facility, with a pediatric wing, on the north side of the Sanford Health main campus.

Where: 1320 W. 17 St., Sioux Falls, S.D.

Philanthropy continues shape its legacy and sustain the exceptional, comprehensive patient care and services that define Ava’s House.

About the arts at Sanford Health

Sanford Health has a program that allows patients, caregivers and staff members to work with local artists through various activities and programs. The program is free and allows participants to explore how art can help them heal, through painting, drawing, music and literature. Learn more about the program.

More about how art programs offer a sense of escape for patients.

Read the story here.

Posted In Children's, General, News