Of Birds and Butterflies

On the Convergence of Arts and Health Care

Published in: GIA Reader, Vol 28, No 2 (Summer 2017)

Dylan Klempner

I pulled my car out of the driveway and parked in front of my neighbors’ house across the street. A few moments later, my friend, Marvin Morales, a thirty-one-year-old Guatemalan PhD student in biology at the University of Florida, opened the door. His right arm hung across his shirtless torso in a navy-blue sling. Across his collarbone there was a rectangular piece of gauze. I asked Marvin how he was feeling. Not good, he said. The pain in his shoulder had kept him up most of the night.

Marvin had broken his collarbone a week earlier while playing soccer when a player on the other team fell to the ground in front of him. He tried to avoid crashing on top of his opponent by twisting his body in the air but came down hard on his shoulder. The break had been complicated and required surgery.

Marvin had two appointments that morning, January 24, 2012. The first was a follow-up with his surgeon, the second with a physical therapist. On the ride over, he said he hoped to be well enough to drive to a committee meeting with his department the following day but worried he might be in too much pain.

As we waited in line at the surgeon’s office, Marvin and I continued a conversation we had started a few weeks earlier about our divorces. I asked if he was afraid to show kindness to others because of the breakup of his marriage. It was something I dealt with for a brief period after my divorce, when, concerned about opening myself up to further heartbreak, I avoided intimate relationships. “No,” he said. “I learned to trust people again.”

My own life had changed dramatically since moving to Gainesville, Florida, to work with the Arts in Medicine program at UF Health Shands Hospital. My job as a writer and artist in residence is to facilitate art making among patients, families, and staff, primarily in the hospital’s oncology units. It is a rather unassuming role in the context of a modern medical setting. But the impact of the arts in health care can be transformational. On the most basic level, my colleagues and I offer patients and caregivers a chance to focus their attention on something other than their pain and discomfort, not an insignificant objective, and something I was hoping to provide Marvin that morning.

My friend projected calm, but I could see that he was suffering. He told me that the pain in his shoulder was intense, and he grimaced each time he readjusted the sling. So, as I might have done for one of the patients I work with, I tried shifting his attention to his passion: the South American Forked-Tailed Flycatcher.1
Marvin had begun to make a name for himself in the study of South American bird migration patterns. The previous summer he spent several months in Peru, Venezuela, and Argentina collecting data that he was analyzing with the help of his advisor and lab mates.

In the examination room, the surgeon arrived and began drawing a diagram on the white paper that covered the table. He explained that Marvin’s clavicle had broken close to his shoulder joint, making it impossible to secure with a steel plate. Instead, he wrapped the bone pieces with wires, hoping they would fuse together and heal. Marvin listened quietly. The surgeon said he could begin physical therapy that morning. He understood Marvin was in a lot of pain and assured him that the physical therapists would work with him slowly.

Moments later, we were seated in another waiting room. The physical therapist soon appeared. He introduced himself to Marvin and said that he had to speak with his surgeon briefly before working with him.

Shortly afterward, Marvin turned to me and said he couldn’t write. He was holding his phone in his hand as if trying to send a text message. “What do you mean?” I asked, but he shook his head and shrugged his shoulders. A few minutes later he leaned toward me and asked me if he had a fever. His skin looked clammy, and he seemed to be sweating. I touched his forehead with the back of my hand. “You’re warm,” I said, “but not hot.” He sat back in his chair but soon said that he had a terrible headache, one of the worst of his life.

The physical therapist returned and asked us to follow him. Marvin stood but looked unsteady. His face was pale. His legs began to buckle. The physical therapist helped him back to his seat. I told him that Marvin was in a lot of pain and had complained of having a headache. Marvin’s condition quickly worsened. The physical therapist asked him if he thought he might lose consciousness. Marvin did not respond, so he ran to the reception desk and asked them to call 911. He returned carrying a blood pressure monitor. Marvin’s head drooped, and he became disoriented. When the physical therapist tried to wrap the blood pressure cuff around his arm, Marvin picked up the bulb and tried to put it into his mouth as if to drink from it. Marvin’s eyes lost focus. He sat back forcefully and thrust his legs forward as his body stiffened into a plank. I felt an urge to go to him but stayed put because there was nothing I could do.

In my job as an artist in residence, I often engage closely with people who are very sick. But my role is distinctly not medical. I offer patients and caregivers opportunities to reconnect with their creativity — the parts of themselves that feel most human — in an environment that can often seem sterile. I draw, paint, share stories and poems with cancer patients, who can be pale, hairless, and exhausted. I read to anxious-looking patients in intensive care who have undergone tracheostomy procedures and breathe through blue corrugated tubes connected to their throats. I gather oral histories from dialysis patients who show signs of pain and listlessness, listening to their stories as I watch their blood flow through thick, red tubes out of their bodies into small machines with whirling mechanisms, then back into their bodies.

When the paramedics arrived, Marvin snored loudly as they worked on him. One held an IV bag above his head. Before long, paramedics were wheeling Marvin on a stretcher out the open sliding glass doors to UF Health Shands Hospital.

At the emergency department, the nurse led me to the family room and said the doctor would speak with me there. I began to worry that Marvin’s condition was very bad. Why else would the nurse put me in the family room, which was reserved for private conferences with medical teams? I was restless. I sat, then stood.

The room contained cushioned chairs, a table, and two large, framed photographs. One depicted a butterfly. I focused all my attention there. It was an image I had seen a lot over the past couple of years. Mary Lisa Kitakis-Spano, one of the hospital’s artists, often paints butterflies on the greeting cards she gives to people who are sick or have lost loved ones. I have also seen her teach children in pediatrics how to paint their own butterflies by stacking two hearts and joining them at the points. Butterflies represent transformation, an idea that is important to the artists I work with. They believe that making and appreciating art can help transform the experience and delivery of health care. Standing alone in the family room, for the first time since I started working at UF Health, I found myself on the opposite side of the divide that often separates hospital employees from the people we serve. I thought about all the families and friends who, like me, were sent to this room and perhaps gazed at these photographs as they anxiously awaited word about their loved ones. I again felt an urge to help Marvin and was frustrated that I could not. If Marvin was admitted, I hoped I would have a chance to visit him on my rounds as an artist. But at that moment, I was a friend waiting to hear something hopeful to hang on to from Marvin’s doctors. I didn’t want to take my eyes off the butterfly.

The emergency room’s resident physician found me in the family room. He spoke quickly. Marvin’s condition was very serious: a massive “brain bleed.” He asked if I could get in touch with Marvin’s family. Important decisions would have to be made about his care. I felt stunned but tried to focus on following doctor’s orders to contact Marvin’s family.

Marvin was moved across the street, where he would undergo emergency brain surgery. Pedro Mendez and Amy Loomis, two friends, arrived at the hospital to offer support. We were told we could wait to hear more about Marvin’s condition outside the neurology intensive care unit.

A few hours passed. We were called into a small conference room by a social worker and a surgeon. The surgeon explained that Marvin had suffered an intracerebral hemorrhage, a massive brain bleed. The cause was an arteriovenous malformation (AVM), a genetic defect. Like most AVMs, the one in Marvin’s brain had gone undetected throughout his life.

From my perspective, we had little to hope for. The doctor said that if he survived, Marvin would scarcely be the person we remembered.

When I was allowed to see Marvin in his room after surgery, he looked awful. He was unconscious, his head had been shaved and bandaged, and he was connected to various tubes and monitors. I held Marvin’s foot in my hand for a few moments. “Get better, Marvin,” I said, but my words felt empty. Instead of focusing too much on whether Marvin would recover, I put my trust in his medical team and family and tried to think of ways I could support our community of friends and find a means to process my experience.

The next day, Joe Pfaller was sitting on the floor in the hallway outside the waiting room at the hospital. Joe was also a PhD student in biology and a friend. Seeing a community gather for Marvin helped me feel more relaxed about getting on a plane the next day for a graduate school residency.

In the morning, I drove to the airport in Jacksonville to catch a flight to Baltimore. I was traveling a day later than I had planned, but I was glad I stayed behind to be with the people now supporting Marvin and each other.

Joe called while I was standing in line at the gate, waiting to board my flight. When I saw his name on my phone, I hesitated before answering it, fearing bad news. Joe said Marvin’s brother, Manuel Morales, had arrived in Gainesville, and all of them had been told by doctors that Marvin was not going to make it. There really had been little chance all along. Marvin had suffered a massive stroke. He would likely be gone by the end of the day. Our voices were filled with emotion. We said good-bye, and I boarded the plane. Once airborne, I wrote in my notebook for nearly the entire flight. I started by asking the page how such a beautiful brain could falter so wildly. Why would a young man — just thirty-one and with so much promise — be taken away so quickly? I wrote that I did not see a reason or a lesson in any of it. But I also began to record thoughts and memories of my friend.

Writing during the flight seemed to give me a sense of purpose. Instead of wallowing in shock or self-pity, I worked to leave a record of my experience for others, those who had known Marvin as well as those who might benefit simply from reading about what I was going through. I tried not to turn away from difficult feelings but to incorporate them into the narrative I was creating, to accept everything with a degree of compassion.

I also began to understand more fully how the arts can help us build community and find solace in times of medical crisis. Marvin’s condition was beyond the capabilities of skilled medical staff. When that became clear, the hospital’s doctors and social workers gave us the information we needed to begin the grieving process. Meanwhile my Arts in Medicine colleagues and my training as an arts-in-health practitioner offered arts-based resources that were needed to continue bonding and make meaning.

The next morning, I sent Joe a text from Baltimore to say that my thoughts and prayers were with everyone back in Gainesville. “Things went final last night,” he replied. They were making preparations for memorial services.

The night I returned home to Gainesville, I met Marvin’s brother, Manuel, at Marvin’s house. I asked Manuel if he wanted me to tell him what I remembered about Marvin’s last moments at the doctors’ offices. He did. As we talked, he occasionally used the sleeve of his T-shirt to wipe away tears. Manuel was having trouble understanding what had happened. He also said he was uncomfortable dealing with such an enormous tragedy in an unfamiliar place. I felt compassion for him.

The University of Florida’s Biology Department held a small ceremony for Marvin the following day. A chaplain from the university acknowledged the loss we had suffered. It must be shocking to lose someone so quickly, he said. One minute they are speaking and acting normally and the next they are gone. He asked us to introduce him to Marvin by sharing our stories. Mike Gil, Marvin’s housemate and close friend, said that Marvin had been a leader who had helped hold together the department’s social bonds. Others described Marvin’s character, his hard work in the biology lab, and his tenacity on the soccer field.

Marvin’s advisor, Doug Levey, gave a particularly meaningful speech. “We all knew and loved the Marvin that passed away last week,” he began. “I’d like to tell you about a slightly different Marvin — one that I suspect many of you don’t know about.” Marvin grew up in Guatemala as part of a large and loving family of modest means. Unsatisfied with pursuing his father’s trade as a farmer, he trained as a guide for the tourism industry. He taught himself English, and seeing an opportunity to attract eco-tourists, learned to identify Guatemalan birds: 365 species by sight and 100 by song. He attended a community college in North Carolina to improve his English and learn basic math skills. He was admitted to Guilford College in Greensboro, North Carolina, where he completed a BS in 2008. In 2009, he entered the graduate program at the University of Florida.

“Here’s what I want you to remember,” Doug concluded. “Most of us have mentors and role models from an early age. Even if we don’t, the paths that lead to different professions are well charted by others who have gone before us. Marvin had none of that. He forged his own way, overcoming hurdles that most of us can’t truly appreciate . . . and he succeeded spectacularly. That is the Marvin I’ll remember.”

Doug’s portrait of Marvin grounded us in the cultural and historical details of Marvin’s life and focused our attention on the particulars of his most significant achievements. By example, Doug presented a narrative that displayed the kind of careful reflection and close observation we all needed as a community to begin the healing process.

His words that afternoon inspired me to continue learning about Marvin’s life and work while avoiding the temptation to reduce the experience of his loss to a series of banal life lessons: Life is fragile. Cherish every moment because you never know which one will be your last. I resisted the urge to turn a tragic ordeal for a whole community of people into something other than our moment-to-moment experience of it. Rather than reaching for a particular lesson, I spent several months getting to know the friend I lost by speaking to those who knew him.

The process of writing about Marvin has been an important part of how I have dealt with the grief and confusion that resulted from his loss. It has also given me insights about my work in the hospital, particularly as it relates to the various ways we connect with one another through narratives that can be shaped in a number of expressive styles and artistic media. Art, in all of its forms, gives us the unique ability to stay grounded and present in the midst of crisis and turmoil. It provides tools for remaining calmly focused in times of stress and can promote healing.

I eventually contacted Marvin’s advisor, Doug, and we spoke by phone. Doug told me more about Marvin’s research project and his work in South America. Because Marvin had no other scientists in his family, he was very proud. “It’s rare to have somebody who is so appreciative and has this sense of wonder about the role they’re playing as a scientist,” Doug said of Marvin. “What made him special was his ability to communicate easily not only the science but also what being a scientist was like.”

After our conversation, I sent Doug an email thanking him for talking with me. I attached a document containing some of the material I had written about Marvin. I closed by saying I hoped continuing to share his story with one another could help us all heal in some way.


NOTE

  1. The South American Forked-Tailed Flycatcher is depicted on the cover of this issue of the Reader as illustrated by Molly Kempson.

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