Julia interviewed me about my work as Writer in Residence in the Creative Arts Program at Boston Children's Hospital and the edited transcript is now posted on the HCMHF blog (MedHum.tumblr.com). Read the interview here (or click "read more" below).
Thanks, Julia, for the great work you do: lending company and levity to the patients at Children's Hospital, and bringing awareness to the vital overlap between medicine and the arts.
by Julia Moss ‘18
Aaron Devine has worked as the Writer-in-Residence at Boston Children’s Hospital since 2011. He has an MFA in Creative Writing from UMass Boston, where he currently teaches English as a Second Language and “The Language of Illness” course in the Honors College (Spring 2015). I had the opportunity to speak with Aaron about his experience helping young patients express themselves through creative writing.
JM: How did you first become involved in the Creative Arts Program at Children’s and start out as the writer-in-residence here?
AD: I heard about an opening for the position at Children’s while I was volunteering with 826 Boston, which is a tutoring and creative writing center in Roxbury. They work with school age kids, helping them with their homework but then also inspiring them to write stories and poetry and imagine. At 826 Boston, they say yes to every idea. They don’t focus on form or grammar or spelling but instead on ideas and imagination. It really inspires the kids there, and I saw that firsthand. I always feel that the experience that helped me get the job here at Children’s was the 826 work.
Also, I was trained as a hospital clown when I was living in Caracas, Venezuela. I wanted to do something to be part of the community. I had learned about a volunteer group of hospital clowns that visited children, so I got involved with them and had a lot of fun. I had two weeks of intensive training about what it means to visit kids who are sick and what it means to put authority in their hands when they’re in a hospital.
What I always try to do now in the creative writing program at Boston Children’s is to give kids the decision-making power. Being the author of the story means you have that authority to make all the decisions, so I say yes to everything, just like in 826. So if the patient wants to write a story that combines Spiderman and Downton Abbey, then we can do that. It’s all about empowering kids to make the decisions and the choices that they want.
So, working with 826 Boston and volunteering as a hospital clown in Venezuela are really the two experiences that led me to my current job at Children’s. I’m a writer but I also believe in the value of writing as a tool for individuals and communities. To me, writing doesn’t just exist in a room – it’s part of how we process and enjoy our world, so it needs to be shared.
JM: Do you think you could tell me a little bit more about what you do here at Children’s Hospital? What does a typical workday look like for you as a writer-in-residence?
AD: It changes every time I come, but I can describe it in its bare, essential form. First, I get a list from the child life specialist of which patients might need a visit for company or to give their family a break or because they really need to express something or because they voiced an interest in this kind of activity. Then I just go door-to-door and say, “Hi, I’m Aaron. I do creative writing projects here. Would you like to do an activity together?”
Each day, I try to come with a few projects in mind. Today it’s very, very cold in Boston, so I have a couple of prompts about creative thermostats. For example, we know that 32 degrees is the temperature at which water freezes. But what is the temperature at which you will not get out of your bed, or the temperature at which you will put on four shirts?
I also just try to get to know the patient. Maybe they love snowboarding or maybe they love SpongeBob or maybe they’re going through a hard round of chemo and they have something they want to say about any of those things. We just look for a form to put it in, whether it’s a story or a poem or just a splatter of ideas. I bring my training in creative writing to the point of extracting the ideas. This involves a lot of question-asking, giving some shape to the ideas, reinforcing for the patient some satisfaction with the work that they did, and then giving them a product at the end that they can share with their family or even with their medical staff.
I always try to give patients an interaction where they feel seen, they had some fun, or they had some thoughts that they had validated. But there are two ways that the projects go – one is the fun, imaginative, wacky, and silly route. We just get to be playful. The other way is toward really trying to put into words something that patients are having a hard time expressing.
I love this quote that I heard at a Lesley University conference on arts and health care: “The conflict between the will to deny horrible events and the will to proclaim them aloud is the central dialectic of psychological trauma.”
Every time I go into a patient room there’s this desire to proclaim something that’s just beneath the surface and there’s also this desire to hide something. The hospital has a lot of routine language and recycled language that gets tossed around. Sometimes I see our patients get sort of trapped in the routines, and sometimes these creative writing projects can open up that door to patients’ own individual expression and let them say what they really want to say.
JM: How do you go about deciding whether to engage in a playful, imaginative project or a more serious project with a patient?
AD: It’s a read. As I’m asking my get-to-know-you questions or noticing what I see in the room, I’m taking the temperature of the place and figuring it out. Part of it is instinct.
JM: Do you always give patients a prompt – like the creative thermostat question from today – or do you sometimes let them choose their own prompts?
AD: I like giving prompts, but I like it best when patients create their own. There was one patient a couple weeks ago who liked to write and told me so. I asked her to give us the prompt and she said, “write about a character who’s trapped in a dream and it’s a strange and wonderful place and the dream ends when she finds her escape.” And then we just both sat down to write stories inspired by her prompt.
JM: I love that you followed the prompt the patient came up with, too.
AD: That can be another way to give patients a laugh or a strange image that takes them out of the hospital environment.
JM: So do you have any other particular pieces of patient writing that stand out in your mind?
AD: One of my favorite projects that we did was with an older patient who was on dialysis and had been for a number of years. Her project was an adaption of the hit song from the musical Rent, “Seasons of Love.” The song imagines all these different ways to count a year in your life. We rewrote the lyrics of it to be all the ways to count the time that you spend on dialysis, which is 3 hours a day for 3 days a week. There were really silly comments about measuring that time in ginger ale and inside jokes with nurses and things like that. But there were also some really honest and heartbreaking details about measuring the year in the medicines she had to take, her dietary restrictions, and things like that. We got together with one of the music therapists and put it to music. We sang her lyrics. And we recorded, with the videographer, some video of the dialysis unit – the machines, the gloves, the protocol, the murals on the wall, the ceiling tiles, all these little details. That was a really consummate project that I think helped the patient express something she wanted to say about her experience, make art from it, and bring people together around it.
JM: I had the chance to read the lyrics of this new version of “Seasons of Love” in The View from Here, the collection of patient writing you published a few years ago. There are two editions of The View from Here, right?
AD: Yes, as a hospital we have two editions. The first one was under Ian Schimmel, who was the former writer-in-residence. The second one was a project under my guidance. We’re due for a third.
JM: In the second edition I noticed a piece of writing written collaboratively by multiple patients. How did that work? How can this type of collaboration benefit patients?
AD: Probably the piece you saw was by two teenage girls writing about their high school friends wondering about what their life was like in the hospital. There was a lot of sarcasm and sass in that one. They just fed off of each other, going down the list of ideas that they had about what people were saying and thinking and gossiping about. It’s great that patients can feed off each other’s ideas.
That’s what I mean about writing being social, writing being something shared. Part of the reason why we write is so that someone will read and understand us a little bit better.
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Like “The Creative Arts at Boston Children’s Hospital” on Facebook to read stories patients have written with Aaron’s guidance, and to view art projects patients have created in collaboration with other artists-in-residence at the hospital – including films, paintings, and cartoons.
HCMHF strives to foster a community in which undergraduates who are interested in the intersection between medicine and the humanities can collectively explore their academic interests and passions. Through discussion and writing, we hope to address the often-overlooked question of how humanities studies can prepare aspiring clinicians to treat patients -- a responsibility that requires not only scientific knowledge but also the very human ability to engage patients as people.