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.

 

Interview with Marlena Robbins: On Process, Painting and Spirituality

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Photo provided by artist

Arizona-raised artist Marlena Robbins is known for her tactile, self-reflexive painting style and use of color and symbolism. Our Art Editor, Regan Henley was lucky enough to ask her a few questions on her work, style and process.


Regan Henley: You’ve said you haven’t been painting for very long, but you seem to spend a lot of time dedicated to it. Is painting your primary medium? Why or why not?

Marlena Robbins: Yes, painting is my primary medium. I use it more so as a therapeutic expressive outlet. I think the brush strokes and colors help me feel my reality. The simple act of the brush strokes help settle my mind, focus and zone into my present. The colors are psychological; reds are passionate; blues and greens are calming; white is pure, black is powerful; etc. I started painting about 3 years ago; it evolved from there and became my own form of therapy. It became a way for me make sense of my reality, my experiences and what I was going through in order to bring me back to the present.

RH: You’ve collected a very interesting group of pieces. What would you say is the overarching theme in this body of work?

MR: I don’t know that there is a theme to it all; I think each piece that I do reflects what I am experiencing at that particular time in my life. If I’m learning something new. For example, a lot of my earlier pieces were political because I was taking an American Indian Studies course; so whatever I was taking in through my course was being reflected through my paintings. Other paintings were an extension of my feelings, thoughts and circumstances of the moment. What I am trying to understand about my reality. My paintings are growing right along with me; they are a reflection of me and the times that I am in right now.

RH: What is your process for creating these works? Do you begin with concepts or images?

MR: I have the concept first; for example when I say that I am painting what I am experiencing and what I am trying to understand about my life, that’s the concept. That’s me thinking about what I am going through right now in order to create. For instance, we recently had a lot of loss in our family and to try to make sense of that all the only way I could was to paint about it and try to bring closure in order to move forward.

Another important concept to me is balance: balancing myself spiritually, mentally, emotionally, physically and how I represent that in my art. Making sense of balance is a lifelong journey; to sustain, nurture and accept that it is a part of who we are as individuals, as human beings. It is very much a part of our purpose.

The concepts definitely do come first, but I take images from my surroundings, the environment and my creative environment. I am very blessed to know and work with amazing artists and have great mentors who put it all out there to be respected and to inspire the people to create.

Some paintings I do start out with a plan, I sketch it first. However, lately, I’ve been mostly experimenting with the mixtures of colors; being intuitive with it and going with the flow. Not really having a plan but giving the canvas my all and the paints their own direction and free will. It’s intimidating to not know what is going to happen or how it’s going to come out because I have this canvas in front of me and I don’t want to mess it up, but at the same time there’s beauty in the unknown. I believe that is parallel with life.

RH: You’ve mentioned that many people are drawn to the three-dimensional quality of your work. Do you ever work with collage or 3D materials when creating these paintings? Your paintings have a kind of texture and warmth that makes them read like textile and fiber arts. How are you influenced by textile arts when creating these pieces?

MR: My very first collage piece was done to pay homage to the women, grandmothers and mothers who came before us. It was pictures of Indigenous women and their children from the late 1800s to mid-1900s. It shows the love that we have for our children as mothers and how that is gifted from generation to generation; the connection we must maintain and nourish with our children. There is no perfect parent; we do our best with what we have.

When I was finished with it I felt as though something was missing. I saw the beads next to me and started beading the outfits in the pictures. My very first collage was my very first beaded painting. The beads add to it, they are unique, different, offer a new texture/effect and are beautiful because it’s like painting with beads. There are very few artists that I’ve seen who bead their paintings. I haven’t seen much on it or read much about it; I know that it is out there, it’s just very unique. I first started beading about 7 years ago; my auntie taught me a very simple stitch. I stopped beading for a long time and it came to back to me when it was supposed to.

RH: Many of these paintings reference spirituality in an abstract way, from the use of patterns, stained glass and geometry; they definitely evoke these thoughts to me, personally. Can you speak a little bit more to that (Are you directly interested in these ideas or are they themes that come up naturally? Are you a very spiritual person? Etc.)?

MR: Spirituality, to me, is an intricate and delicate thought process but very simple to appreciate. It’s not overruled by any written agenda or book. It’s not confined entirely to a religion. It’s how we cope with our reality, how we understand and see ourselves, see the people around us and the world we are in.

I grew up in Window Rock, AZ on the Navajo reservation. Our family didn’t lean towards any religion. There were a lot of traditional Navajo families and Catholic/Mormon families around us. Our mother chose not to excessively influence any one form of religion, she let us understand it for ourselves, and I really appreciated that because it was less confusing. I am not too traditional but I am not religious either. I understand both because I witnessed both. It’s hard for me to respect any Christian religion as a legitimate source of spirituality based on colonialism and the fact that it wasn’t a part of our Indigenous beliefs before colonization.

The flower of life painting, for example, is a reminder to mellow out. That while we strive for perfection, nothing is ever perfect, and while we try to control every situation in our lives, sometimes that choice is not ours to make. We may think that we are making it but in the grand scheme of things we are not; by going with the flow and letting it all evolve the way it’s supposed to, we let it unfold as we go. I can plan my life out 10 years from now but still need to be happy with who I am this very moment by taking care of myself before I go overanalyzing my future. Understanding my present and being grateful for it is a part of spirituality; forgiving my past, accepting my present for what it is and acknowledging my future for what it might become.

RH: What are your biggest influences right now, artistically or otherwise (Artists, movements, styles, book, philosophies, ideas, things you’ve seen or heard, etc.)?

MR: I’ve been very blessed to be able to surround myself with very artistic and influential people in the community and throughout the nation. My mentors Carmen and Zarco Guerrero, my sister Zarina Guerrero, my good friends and accomplished artists in their own mediums: Thosh Collins, Thomas Greyeyes, and Samuel La Fountain. These very genuine people are true to themselves, their art and the world we live in. They have been inspirations to everyone they meet. I draw from their work and ideas. It helps motivate me and drive myself.

RH: What have been the biggest challenges for you in making this work?

MR: Time is the biggest challenge for me. I am the mother to a very energetic three year old. I work for two incredible organizations. I am the Assistant Director of Cultural Coalition, Inc. and am the assistant to the COO and Directors of Community Bridges, Inc. I will be attending graduate school in the fall, pursuing my Master’s in American Indian Studies–Indigenous Rights and Social Justice. I am preparing for my upcoming solo-debut show “777” this May. I am building up my collection and portfolio for the Indigenous Fine Art Market in Santa Fe this August. I’m starting a therapeutic art program at Community Bridges for our clients. And most importantly, giving my son the attention he needs and deserves to make sure he is growing in a good way.

RH: I want to ask you about your art site name, “Mello out Mella.” What’s the story behind that?

MR: Mello out Mella is a reminder for me to “Mello Out.” My nickname growing up is Mella. At times I am a control freak, I want everything to go my way. I have assumptions and expectations of how I want things to play out it and if it doesn’t it can be almost shattering for me. I had to have everything in order, organized to the T, this is how it’s supposed to go, this is how it is going to go, if it doesn’t go this way then what was the point of it all? It took a very long time to let go of that control and understand that things are not always going to go the way I want them to and I have to go with the flow and let it evolve the way it’s supposed to. Mello Out Mella is a reminder for myself and every other control freak out there, that it is ok and there are worse things that could happen, but right now we are safe, strong, happy, healthy, living, breathing and are in the present, grateful for that breathe we are taking in.

RH: So I noticed you also screen print your pieces on shirts and the like, but you’re also showing your work in galleries. Some people would consider those things as conflicting, or even find it difficult to live in both those worlds (fine art and commercial), so to speak. What are your thoughts on this, as an artist doing both?

MR: That never occurred to me. I love these paintings and wanted to share them because know I am not going to recreate them. I wanted to build a design out of it and share via t-shirts and posters. That way the design and painting stay alive. The shirts and posters help relay a message that was embedded in the painting. A lot of symbolism goes into my work; there are stories behind every painting which is a big part of my art. There is always meaning behind them, it’s never just a painting; they have feelings, energy, thoughts, prayers, etc. that go into it. I pray before, during and after I complete a painting. While these paintings are helping to heal me, after I am finished with them they are meant to heal the viewer as well. As the viewer, take in what it is offering. I hope my paintings/designs offer good energy, good thoughts, good words, good feelings and good health. They helped heal me and my intention is for them to help heal others.

RH: These pieces mark a significant period of work. Have you learned anything new about yourself during this period of time?

MR: Yes I have, painting has definitely helped me understand my reality for what it is. And accept and acknowledge parts of myself that I could never really grasp or deal with. Before I started creating, I went through a very difficult time in my life, and I am grateful for how it has helped me move forward. I see a lot of myself in what I paint and a lot of my intuition that goes into it.

RH: If you had to explain your art in 5 words or less what would you say?

MR: Healing, evolving, spiritual, embracing, balanced.

RH: Where can we see more of your work and keep up with you?

MR: You can find more of my work at www.mellooutmella.com and my upcoming solo-debut show, “777” at One Spot Gallery in Downtown Phoenix, the first and third Fridays of May and June 2016. 

You can also reach me at Marlena.c.robbins@gmail.com.

Bellevue Literary Review: Prizes in Poetry and Prose Due July 1

Three prizes of $1,000 each and publication in Bellevue Literary Review are given annually to a poet, a fiction writer, and a creative nonfiction writer for works about health, healing, illness, the body, and the mind.

Using the online submission system, submit up to three poems totaling no more than five pages or up to 5,000 words of prose with a $15 entry fee (a $20 entry fee includes a subscription to Bellevue Literary Review) by July 1. See Contest Guidelines

Deadline: July 1, 2012

Website: http://www.blreview.org

E-mail address: stacy@blreview.org