Guest Post, Renee Nicholson: Infused

Creative Writing in a Chemotherapy Infusion Center

Bio photo of Renee NicholsonIf it’s Wednesday, you won’t find me in my office, not at my desk at home nor the one at work. You won’t find me at the quirky Blue Moose Café, or The Grind just off campus, indulging in reading and writing with a healthy dose of caffeine. You won’t find me in the Robinson Reading Room of the Wise Library at West Virginia University. Instead, you might find me riding the Personal Rapid Transit, or PRT, a monorail that connects the various WVU campuses around Morgantown, traveling from downtown to the Health Science Center. When the doors open at the depot, you might find me climbing stairs and walking across the parking lot towards the Mary Babb Randolph Cancer Institute, making my way to the second floor of the building, to the chemotherapy infusion center. It’s here that I spend Wednesdays, working with patients with cancer, although I’m not a doctor or a nurse. I’m a creative writer. Instead of taking a patient’s vitals, I’m there to take his or her story.

The chemotherapy infusion center is a large box; the outside of the box is lined with cubbies, with three walls and a curtain that slides across for some additional privacy. The box’s center contains nurses stations, computers that can be wheeled around to cubbies, The kind of instruments and gear you’d expect to see in a bustling clinic. When I arrive I check in with the charge nurse. She’ll direct me to patients who I might have deliveries for—deliveries not of flowers or lunch but of stories—and or direct me to new patients to work with. New patients, new stories.

In October 2015, I met with Dr. Carl Grey. Carl, a young doctor, has a compact, athletic build, blonde hair, thick glasses and a shy smile. He married a woman I knew from grad school who runs the literary imprint of the WVU Press. In my mind, this makes them a power couple. Carl had a clever idea—that patients would be more open to tough conversations with their physicians if those patients had reflected on their lives and values first, and doctors could know those lives and values through expressive writing. But he wasn’t sure how to get started.

I’d worked with a dying man, about a year before, helping him craft a memoir. During this time I learned about narrative medicine, and attended workshops run by Rita Charon, MD, PhD. I like to call her St. Rita, because I find her work a miracle. St. Rita believes stories matter, and that the care of sick unfolds in stories. She believes that through these stories we bear witness to lives, and through writing and reading we join in attention, representation and affiliation in ways that make order from chaos. Through my work writing with patients with cancer, I find my view in line with hers. In the chemotherapy infusion center, I get some of those stories, the stories of the patients. I don’t ask about their cancer explicitly, but of course the patients can talk about that if they want. In West Virginia, where I live and work, patients like to talk about work, food, and family. I can’t tell you how many stories include parts of recipes and the food eaten at family events—from barbecue to soup beans, fried chicken to Hawaiian meatballs. Gardens, too. Tomatoes, squash, beans, lettuce, you name it. In West Virginia, telling a good story is considered an art of its own.

My storytelling patients range from late teens to over 80 years old. They are all receiving chemotherapy for some kind of cancer, some in early stage, others progressed. Not all, but most are Appalachian, many natives of West Virginia who still live here.

Part of the reason I’ve talked in summary about the patient stories is that, under our project, they’re protected by HIPAA. That allows the patient to be in control of their story. We do survey them to see where they end up. Most are shared with family members and friends.

To get a patient story, I sit with each, working through a release form and some surveys. One survey collects quality of life information and another collects demographic data. Both will be logged in a secure database so we can analyze the results later. We have a study group and a control group. The study group begins the storytelling immediately, while control group does the story portion at a later date. I’d never thought of writing in these terms before, and it’s interesting learning this world of research. I go through guided questions to get at stories and while I do this I record the conversation. Later, this recording is worked up into a transcript, and from that transcript I work on a first-person account. When I have the story ready, I bring it to the patient in a crisp blue folder. Patients read through and can make any edits they need or want to make. When their story is finished, it’s theirs to keep and share. Most of the patients I work with have never thought to write anything down about their lives, and when I bring their stories, they get excited to read them. One patient, having a tough day in the clinic, actually went from slumped and ashen looking to sitting up, with brightness in his eyes. Carl has often said the stories turned out more beautifully that he imagined. We do file a copy for the study, and he reads every one.

Carl and I worked for about six months on grants to help make this project a reality. There have been plenty of supporters, and just as many naysayers. We forged on through the conviction of our belief and a lot of long arduous days writing and revising grant proposals. It pays off: of the first group of patients we’ve worked with, about 20% have been referred for symptom management or participated in Advance Care Planning because of the story project. Advance Care Planning is a set of directives patients create so that their wishes for their care are carried out if they are unable to speak for themselves. It shows one way the arts can have a palpable affect in a life, and how humanities and STEM are better together than in competition. The stories actually lead to improved care.

I like to think I might help change health care for the better. I am a rheumatoid arthritis patient, a condition that cut short my progress as a ballet dancer. Writing became a way to deal with that loss, and to forge a new identity. My younger brother is a cancer patient. Diagnosed young, cancer wasn’t just a shock to him but our whole family. Writing has helped me be a better caregiver and sister to him. My brother shares in the excitement about the ways in which writing life stories might better the relationship between doctors and patients.

Our writing in the cancer institute is a two-year pilot project. I don’t know what will come at the end of that time. I hope I’ll be able to do more work like the writing I do with patients with cancer. I feel touched, honored, and blessed to work with them. Most of all, I feel humbled. I find myself the caretaker of stories, and it’s an important job.

Because of this project, a group of patients with cancer will have a part of their life on the page. What I wish and hope is that these stories are meaningful artifacts for these patients and their families. For my share, the process of making the stories creates meaning for me, and buoys my faith in all the good things that writing can do. I’ve been asked if I get depressed going to work in the infusion center, but truth told, Wednesdays are the best day of my week. I know patients don’t wish to be in the infusion center. Maybe the making of these stories makes their time in the infusion center a little bit better.

My work infuses me with hope, spreading through me as if through an IV. A great hope is that more creative writers might have opportunities to do this kind of work. There are many programs people can attend—from the workshops and Masters program at Columbia University, under St. Rita, to more humble workshops, like the one I’m adding to the annual West Virginia Writers’ Workshop. Learning about how others write with patients can lead to new projects and initiatives. I recently learned about the Art for Healing at Yale New Haven Hospital’s Children’s, a program that integrates many art forms in support of healing. There are many, many more. We need to harness this collective power of art and healing. Writing can be a way to personal fulfillment, but writing can also be in service to others. This is one small way. If we have enough small ways, we have something big, changing way we live in the world, word by word, story by story. If we can do it in the heart of Appalachia, where, it seems, nothing comes easy, then I think we can spread it to all the places where people look for care. St. Rita says, “Stories matter.” Believe her.

 

Guest Blog Post, Renée K. Nicholson; DIY Arts Entrepreneurship

Renée K. NicholsonIn January of this year, I received an email from the professional social media site LinkedIn telling me my profile was in the top 10% of all viewed profiles in 2012. What surprised me most about this email is that I really had no idea how that happened, or what it really meant. As a writer, book critic, dance critic, ballet teacher (retired dancer), literary podcaster, journal founder, former marketing professional, and rheumatoid arthritis advocate—among other things—I felt like my profile was a jumble of stuff. But what a friend explained to me was that my profile told a story. She went on to say that my story, as told by LinkedIn, defied the one-dimensional logic of the resume, and that my on-again off-again participation in a few very focused professional groups on the site continued a narrative that located me in a community.

But what community?

Before we get to that, there are a few things you need to know.

1. First, as I was growing up, my father worked for IBM. He was a top salesperson, and then recruited into the highly selective Executive Education program, established by IBM’s founder, Tom Watson. But while working in Executive Education, a new project was developing in the Entry Systems Division, and my father was one of the first 40 people to join this project. People told him it would be his “career ender.” The project he’d been recruited for was called the Personal Computer.

2. As a young person, I trained to be a ballet dancer. Although my career was cut short by the onset of rheumatoid arthritis, I’ve enjoyed the opportunity of performing in what’s called “the corps de ballet” or a ballet company. A ballet company is like a family, and although in popular depictions, the rivalries are often the point of focus, it’s the community of artists coming together that truly defines the dancing experience. In that way, it’s unlike writing, a solitary art, one that I’d find only after my short dancing career passed.

3. During my married life, I’ve owned, with my husband, two houses, both of which have been improved through fairly extensive DYI home upgrades. The cost savings of doing the work ourselves (and by ourselves, I really have to say that my husband did almost all of it himself), we not only increased the value of our home, but we had complete control (for better or worse) of the process of making our home a better, more beautiful dwelling in the way we wanted it to be.

All three of these things come together, for me, as an artist looking to make my way through the world. The artist’s path is not easy. As Jim Hart, Director of Southern Methodist University’s Arts Entrepreneurship program said at a conference that posted a YouTube video of his speech, most artists find themselves on the over-saturated path where there are a few traditional, commercially-viable opportunities for which there exists a large audience competition for these resources. This rings true—there are only so many books the big New York publishers take a gamble on compared to the number of novel manuscripts; in the dance world, there were only so many people the ballet companies could absorb, and many dancers talented enough to fill those spots. Rejection is high and even the lucky breaks don’t always amount to making a living, Hart reminds us.

So, what to do?

Shaped by my experience, I believe a few very specific things. Like my father, sometimes you have to take risks to earn rewards—to think off the beaten path to success. I also believe that there is value in community, which was forged in the corps de ballet. And finally, I believe that some things can be done without the aid of (so-called) experts and professionals, in the DYI fashion, giving us an alternative to the modern consumer culture.

The professor and retired entrepreneur Greg Watson defined entrepreneurship as “the creation of value often through the identification of unmet needs or through the identification of opportunities for change.” What, more than art, provides value and opportunities for change?

We often consider value in monetary terms. Of course, we all need to cover our expenses for our survival and comfort. But can artistic value be measured in other ways? I think yes, and I think one of the best ways is through community building.

In the summer of 2012, I started a fledging project with another writer—a book podcast. We chose a book, read it independently, and then recorded our discussion and posted it on the Internet and through iTunes. SummerBooks has grown from a handful of listeners to thousands of hits in less than a year. I don’t even think it has hit its full potential yet. Marketing has been low-budget—via social media, like that LinkedIn profile I started with, and Twitter. The feedback I’ve received on the podcast, however, suggests that writers and readers were, in fact, looking for community. Presses and authors approach us about reading their newest books; listeners often contact us when they hear us discuss a book and then decide to purchase and read it, too. More than anything, SummerBooks has challenged me to be in dialogue with the community I care about: writers and readers.

At its essence, SummerBooks is fueled by a passion for books. It’s two women in West Virginia who are either brave or stupid enough to share in that conversation.

Late last year, a former student from teaching English 101 in my graduate school days approached me about starting a literary journal. A recent graduate in poetry from the prestigious MFA at Columbia, this student had spent a few years after the program figuring out what was next. Of course, I agreed to help, not only because I have a terrible time saying “no” to such projects, but because I saw it as an opportunity. Souvenir emerged as a result, a journal not only serving writers, but opening up to other art forms and informed criticism. Nascent as still is, the response by both contributors and readers far exceeds, already, our hopes for the publication.

It would be fair to criticize these efforts as not being financially viable; at this point, both ventures create value in ways other than monetary. But the frugal DYI approach makes them both cost effective and alternative to consumer culture. And there are some more established examples to point to: Brad Listi’s Other People podcast or the online literary community The Rumpus, which includes two different book clubs. Of course, others too. I’m not privy to what these endeavors do commercially, but their ability to coalesce communities of writers can be easily seen and joined. By engaging in these, one can be “in company” with other literary artists.

With the developments presented by e-books, the changing perception of self-publishing, the rise of hybrid publishing and ability for more people to engage in small press publishing, the opportunities for arts entrepreneurship for writers has never, perhaps, been greater. The work is hard, but it’s there to be done. And I’m not sure we’ve even begun to see and understand all the ways new technologies will manifest opportunities for literary artists. It’s all scary, as change can be, but also exciting.

My interests, above all others, is to invest in the building of community. I’ve figured out the ways in which to earn (eek out?) my living, and so my passion resides in finding ways to connect. Because if social media has taught us anything, it’s that we yearn for connection. Bringing people together through the arts seems to me one of the best ways for that yearning towards connection to become the catalyst for community.

There’s always risk in entrepreneurial ventures. But also reward. When IBM’s entrepreneurial project, the PC, became such a success, the same people who had once chided my father about taking that risk later asked if he was hiring. How do we know if the risk is worth taking? I don’t know that I have any better advice on that than anyone else, but I think it has to do with hard work and faith and just a gut feeling. Learning, perhaps, to trust our instincts. That DYI credo of the success or failure squarely situated in ourselves, rather than listening to all those who gate-keep, who say, “no.”

If it weren’t for that top 10% LinkedIn email, I might never have thought about DYI Arts Entrepreneurship. But, thankfully I have. And perhaps some of you reading this will get the germ of your own idea, expanding and growing the ideas behind the proliferation of literary or other art. Because if the world is full of art and artistic community, it’s also full of possibility.