The written word has healing power.
That’s the idea behind narrative medicine, an emerging branch of healthcare that adds creative writing to the clinical toolkit.
Akron Children’s Hospital is a leader in narrative medicine, and all this week, Ideastream Public Media is highlighting the program's writers in our series "The Healing Page."
Dr. Sarah Friebert is director of Akron Children's palliative care center, the first in the country to include narrative medicine. She said when sick kids write about what they’re going through, “We tap into an inner spring of wellness and spirituality and wholeness and healing that is much stronger than any medicine that I have to offer.”
Friebert likened a critical diagnosis to a bomb going off in a family. Her program considers the blast radius of a diagnosis by extending services to impacted family members who are encouraged to write about their experiences and feelings.
“So when something explodes in the middle — which is your child has this devastating heart condition, or your child has this neurologic problem, or your child has cancer — that’s a blast,” she explained.
Dr. Rita Charon is a founder of the discipline and heads the narrative medicine program at Columbia University. She said narrative medicine originally grew out of the need to train doctors to be better listeners.
Charon said as a doctor she learned to listen closely to the stories her patients shared.
“Looking straight at the patient,” said Charon, “I would say, 'Tell me what you think I should know about what you’ve been going through.'”
She teaches young physicians to cultivate the skill of listening.
“We’re doing our best to give clinicians new tools for how to absorb what patients desperately want for us to understand," she said.
At Akron Children’s, program manager Nicole Robinson is taking narrative medicine a step further. She leads sessions with caregivers who write about their experiences. That includes palliative care Dr. Cathy Kelly-Langen, who said reflecting on her work allows her to process the range of emotions that go along with treating seriously ill children.
Here’s part of her poem called "Loss":
By its nature palliative is about loss…
Loss of health. Loss of life. Loss of control. Loss of freedom.
Yet we also experience the loss of ignorance.
How sacred life is at birth and at death.
How suffering is inevitable but also necessary.
Loss teaches us. Loss forces itself on us.
Loss sucks.
Loss, however, is not the victor.
Friebert said even kids with the odds stacked against them retain the spark of resilience.
“If we foster that and we blow on that little flame and give it oxygen and space to grow, it will light up the world in ways we won’t expect," she said.
Earlier this year, Akron Children’s became the first pediatric hospital in the nation to receive a National Endowment for the Arts grant to expand research on narrative medicine and its impact on healing.
Julien Ford is a 15-year-old organ transplant recipient who finds his superpower through storytelling.
A fever at the age of 13 severely damaged his kidneys. He was on dialysis until last year, when he received a donor kidney.
“I got this one new kidney — and you only need one, they say — and I can do a lot with this one kidney,” Julien said.
He’s worked with Robinson since his first treatments, sharing his strategy for coping with a life-threatening illness.
“I like to always stay positive,” said Julien, “or at least positive most of the time.”
Now, despite monthly hospital visits, he remains resilient.
“I don’t really stress, or when something bad happens I just say it’s going to be fine because I’ve done this before," he added.
Writing is one way Julien stretches his creative muscles. Working with Robinson, he wrote a comic featuring a mutant superhero named Victor.
“Victor is 24 and he lives in New Jersey. He loves to work out, run and eat shrimp on the weekends…” Julien wrote.
In the story, the hero falls into a radioactive vat and his arm transforms into a tentacle.
Julien described Victor’s hospital stay in detail: “He’s connected to a heart monitor and people are watching him and checking his vitals. This scares him. He starts thinking about how he’s going to get out.”
Victor has a run-in with a gang of bodybuilding bullies and later learns martial arts and self-control from an elderly sensei.
“Victor masters his powers,” wrote Julien, “and decided to help others and be a hero.”
Robinson said it took a while for Julien to realize that he was writing a version of his own story, casting himself as the hero.
“He had something taken away from him, like I did,” said Julien, “and he wants it back but it can’t because he’s changed now.”
Robinson asked Julien if writing was helpful while going through dialysis and the long recovery from transplant surgery.
“I was bored, scared and angry in a sort of way, so I feel like that helped me," Julien said. "I needed that, the writing."
The superhero narrative fits into Julien’s desire to give back to other kids and teens going through treatments in the hospital.
“I would say, have faith. Faith is your power. Faith is your future. And just stay positive always. That’s probably my inspiration," he said.
Part of the idea of narrative medicine is to help doctors and nurses understand how stories work and to allow patients to feel seen and understood. It also provides a way for doctors and other caregivers who experience life and death trauma every day to unpack that burden by telling their stories.
Dr. Cathy Kelly–Langen has been part of Akron Children’s palliative care team for 20 years. Like many doctors there, she’s seen a lot of heartrending cases.
“There are things that we as a team experience and endure, children that are severely ill and sometimes tragic endings," Kelly-Langen said.
Kelly-Langen acknowledges that most people are not prepared to hear about the realities she faces every day.
Robinson invited Kelly-Langen to a writing workshop specifically designed for providers. The prompt for one exercise was to write about an experience with a family she’d served. Kelly-Langen wrote a poem about a young cancer patient she treated over the course of several years. They had bonded over a game loaded on an iPad that had characters named Mr. Boo and the Purple Poo.
Here's her poem, called "Mr. Boo and the Purple Poo":
So much pain in such a sweet wee boy.
He's Matthew's age.
Lymphoma sucks.
Another complication? Will it ever end?
Finally on the mend and able to play.
Mr. Boo is our shared fun. We revisit it with each admission, with each bout of pain, with each encounter in the hall.
He's better. Whew. We still play.
Suddenly he's back. It's back.
He's older but knows it's not back. It's new.
Less pain this time.
We meet less and play less, but Mr. Boo is still there.
Years of looking at Mr. Boo, still wondering what was that purple Poo?
How is he?
No news is good news.
Then news. More cancer again.
Hooray, no need for me yet.
Until there is.
I'm torn. I want to see him to be there. But to bear witness is monumental.
He is still Matthew's age, so tall, such a pubertal voice, such dark hair now, not blonde, still so sweet, so kind, so tragic.
He knows.
He knows God. Death. Dying Pain.
He knows what he wants. His body gives in piece by piece.
One last visit, masks and goggles.
Get him comfortable, laugh about Mr. Boo, talk about life, talk about death.
He's comfortable, finely.
I cry and play Mr. Boo, and still smile about the purple poo,
and give thanks.
“The boy had a predisposition to cancer,” said Kelly-Langen, “and he made the choice in the last phase not to treat it.
“It was very brave."
She said the family honored his decision and as part of the palliative team, she treated him until his death.
“He had significant faith in God, and was very much at peace," said Kelly-Langen. “I still have the game that he played on my phone."
Writing the poem reminded her how lucky she felt to have met him and his family, which taught her about the important things in life.
She said narrative medicine allowed her to share his story with the world.
Five years after her death, photos of Ayanna Culler still fill the front room of Arlune and LaTisha Culler’s Canton home.
Balloons and mementos are piled in front of a poster that shouts, “Yanni Strong!”
Her photogenic smile is brave despite evident weariness from chemo treatment.
Narrative medicine specialist Nicole Robinson met Ayanna, Yanni for short, during one of her lengthy hospital stays.
Robinson said poetry became their shared language.
“Before her death, Yanni wrote a sort of chap book, writing from the perspective of an angel, and the angel spoke in poetry," Robinson said.
“Writing definitely was her outlet,” said Yanni's father Arlune.
He said during her final days, she left notes for family members, messages of hope and affection.
Here's a poem for her siblings.
I love you, sister.
You are so beautiful and gorgeous.
You are the best big sister I've ever had.
You help me when I need something important.
When I'm away from you, I cry. When I am with you, I feel sorry.
My heart is always with you.
And I love you, brothers.
You are the sweetest brothers I ever had.
You make me laugh when you make noises and funny faces.
Even when you drive me crazy I still laugh.
You are both so sweet and kind.
Yanni also wrote poems for other kids undergoing treatment in the hospital.
This one is called "To Violet from God's Blessing":
You are a wonderful and precious little girl that I know.
You are flowers blooming on the patio.
You are books that get read by teachers and kids.
You are the painter of ceramics at a store.
You are going through something really hard and you don't know why.
I'm going to be here with you at all times so you do not have anything to worry about.
You are candles that people light so they can have a nice smell at their house.
You are feathers giving people faith.
"Every time I read this," said Ayanna's mother LaTisha, "it’s hard, but it's a window into Yanni’s soul."
LaTisha describes the poem and others by Ayanna and herself as "pieces of peace."
One story she shared highlights the family's continuous search for hope during Yanni's struggle with cancer.
LaTisha described a miraculous moment, toward the end of Yanni’s life, when the two of them and a nurse were standing in a hospital hallway.
“This huge white feather just starting falling and we all three just sat there, looking like, ‘Where did this feather come from?" she recalled. "And we go back to her room, and me and nurse Michelle looked at each other, and I asked, 'Do you know what I’m thinking? Please go see if that feather is still there.’"
The feather was gone.
Here's one of Yanni’s final poems written with Robinson as part of Akron Children's narrative medicine program:
God put me through a whole bunch of stuff,
and he made me and my family strong,
and he’s going to keep on doing it.
He makes me and my family happy everyday.
God has been showing me and my family a whole bunch of signs
and when we see those signs we just pray to God
and ask him to keep on showing us them
because they make tears come down our face
and we love him.
Ayanna Culler died Feb. 25, 2020.
LaTisha Culler has kept writing, to connect with Yanni’s memory, process her grief, and add to her pieces of peace.
This one's titled "A Billowed Breeze":
This breeze billows my heart to calm,
a calm for the moment's time,
not a moment more,
not a a moment less.
The breeze is a messenger of hope,
a hope that is not delayed.
But is traveling at a speed and time that is perfectly on time, his time.
The breeze speaks great expectancy,
speaks peace, speaks urgency, speaks assurance of his coming,
speaks the calm of his coming,
speaks celebration of the greatest family reunion imaginable.
My soul waits, my soul rejuvenates.
My life was never my own,
but his to flow and breeze through,
to use at his ease, on this earth.
Emmie Wanzer is a bright, witty teen who’s had to overcome serious challenges throughout her life.
She’s been paralyzed since the age of two, able only to move her head.
“I do everything with my head or my mouth,” said Emmie. But she’s not complaining, adding, "I learn to adapt so it doesn’t affect me too much.”
An air pump helps her breathe. To write or draw, she holds a long stylus in her mouth and taps on a computer tablet balanced on her wheelchair.
Robinson had shared with Emmie a poem written from the point of view of a dragonfly, and asked her to write from an animal’s perspective.
Emmie chose the true story of a baby giraffe, born without spots in a zoo in Tennessee.
Here's her poem, titled "Giraffe":
I'm different from the others.
I'm my own type of person.
I don't have spots all the others were beautiful luscious coats of spots, different shapes, all different types of styles.
I want to be like others,
I want it to fit in with my friends,
instead of spots all different shapes and sizes.
I wear nothing.
No one else is like me.
A different person is who I am.
I'm held captive in a box with big, tall fences with no escape.
Humans come and go, and I can't explain my feelings, how I stay, cooped up in a pen with no one to belong with.
In front of people, I try to sound brave.
But alone, I'm scared I have no one to be with, no one like me.
I want people to acknowledge me,
knowing how I feel, hearing what I think,
wondering if anyone cares.
Robinson encouraged Emmie to write another poem inspired by an animal encounter.
She wrote about the time she wore a brightly colored shirt with pictures of lemons to a butterfly enclosure.
Robinson said they studied a poem by Mary Oliver that asks, "Who made the world? And what is it you plan to do with your one wild and precious life?"
In her poem Emmie asks:
Who made happiness?
Who made the first movie or created the first essay?
Who made The Monarch Butterfly?
Not every monarch butterfly.
That butterfly, I mean.
The one who believed the lemon was a flower.
The one who’s stayed there calmly, not moving an inch.
Who isn't blinking as it sits there, watching the design on my shirt
as if it's a lifesaving miracle that fixed everything in the blink of an eye.
Who's looking back and forth between me and the neon yellow lemon,
not knowing if it's real or fictional.
Not knowing if it should stay or leave.
Now it opens its wings and flies away to somewhere new.
I don't know exactly what hope is.
I do know how to listen,
how to hear what people have to say,
how to say what I think,
how to see what they mean,
which is what I have been doing my whole life.
What else could I do?
Doesn't everyone leave eventually, if not too soon?
Now tell me young one,
what are you thinking to do with this one special life you get?
Robinson asked her how the narrative medicine sessions helped her better understand herself.
"It’s a way for me to write down what I’m feeling without having to say it in exact words," Emmie said.
"Sometimes when you start writing, it just continues and you don’t even have to think about it," she said.
Robinson reminds her that poetry can reveal hidden truths about ourselves, and that writing can take you to unexpected places.
"It just flows, and sometimes I don't even know what I'm writing until it's done," Emmie said.
Emmie continues to have long hospitalizations, and continues to write her way through them.
