Harnessing The Healing Power of Stories

 

Health Story Collaborative Blog

Harnessing the healing power of stories...

Hubweek's Healing Story Session With Andrew Foley: Son or Medical Student? Finding Balance With Mom's Cancer

 

We recently featured Michele Foley's piece, Good Mornin' Glory, about her journey living with stage 4 Melanoma. Now, we bring you her son, Andrew Foley, who writes beautifully about navigating his mom's illness while balancing his dual roles as son and medical student.

 

 


 

 

Son or Medical Student? Finding Balance With Mom's Cancer 

 

 

By Andrew Foley


Spring 1997

 

I eye up the worn and tattered catcher’s mitt 20 feet ahead. It’s a warm May morning and the elementary school bus is coming down the street in 10 minutes. But, more importantly, baseball season is finally here. Mom is down in the catcher’s stance, “Fire it in here!” she shouts and then grins at me as I start my wind up. I pull my gloved hand up to my face and tuck my right hand in, resting the ball in the heel of the glove. I take a short step to my right and shift my weight slightly over my right foot. I swing my left leg up high and, pushing off my right leg, send everything I’ve got into the pitch, whipping the ball at mom, as she squats in the grass with the mitt held open wide. The ball smacks into the glove’s weathered pocket with a “Crack!” “Isn’t that the best sound, Andy!?” she exclaims, firing the ball back to me and readying herself again. We have to get 10 pitches in before the bus comes. There is no secret to being good at something. You just have to love to practice. That is her philosophy. Now it is mine too.

 

January 2011

 

It’s now junior year of college and my morning routine has shifted away from baseball. Now I get up, eat oatmeal, and review notes before class. Fewer “heaters”, a lot more books, but the same philosophy: love to practice, love to learn. I write frequently in the journal I keep on my computer. So far it is mostly ramblings -- on my dying faith in the Catholic church (what’s the point of God?), on my breakup with my high school girlfriend (what’s the point of love?), on my fascination with cell biology and chemistry (what’s the point of studying anything else but the pure molecular basics of life itself!?).

 

In this moment, my relationship with cancer is so ordered and neat and sterile. It is a series of PowerPoint presentations in air-conditioned classrooms. A set of logical experiments, producing clear data from which succinct conclusions are drawn. It is graphs and figures and tables and genes and proteins and signaling pathways. I have a poster outlining all the known cellular pathways that contribute to cancer on the wall beside my bed. Cancer biology is what I do, not something I fear.

 

April 2011

 

That ordered, neat, sterile, intellectual relationship with cancer collided with the powerful, unpredictable, emotional force of real life on a beautiful spring morning later that semester.

 

I am home for the weekend from school, with my mom. Our morning ritual is to have a cup of Irish breakfast tea together. Always with a splash of evaporated milk and a half teaspoon of honey. We started this in high school when she was teaching 9th grade and I would hop a ride to school with her each morning. I made my cup and walked out to the back porch where she was sitting, her mug beside her, at our small wrought iron table. If that table could talk, it could tell the entire history of our family. It has sat on the cracked slab of concrete we call the back porch ever since we moved in on Evelina Road.

 

“Good morning, Andrew,” my mom says as she smiles and looks up at me from the crossword puzzle, looking not quite her usual chipper, enthusiastic self.

I don’t remember exactly what we talked about at first, but, eventually, she said to me, “I’ve got some news, Andy. I went to get this thing on my leg checked out and they said I’ve got some bad cells.”

 

To me, immersed in a Cancer Biology class, bad cells equal cancer. No need for further description. I just took an exam on this very topic. How ironic is that? “Bad cells” stop doing their jobs. “Bad cells” disobey orders. “Bad cells” exhibit the 6 characteristics of cancer, which I can hardly remember in this moment.

 

“What did the pathology report say?” I ask. “What kind of cells? How fast are they replicating? What stage is it?” In this moment of internal turmoil, I grasp for what is familiar to me – the science and the cells -- rather than looking for what might be helpful for my mom. She recognizes my angst and---despite the fact that she received the diagnosis, will receive the treatment, and will be confronted with her own mortality in the coming weeks-- she opens her heart and comforts me.

 

June 2011

 

You would never find Mom inside on a sunny day. She’d be ticking off miles walking all over town with her best friend, hitting the tennis ball with a fellow teacher, or kneeling in the garden behind the house, back bent, hands covered in mud, transplanting some Black-eyed Susan’s or pulling weeds. But on this “glorious summer day”, as she would most certainly have proclaimed it, there she was, inside. She was curled up with blankets in her bed, her hair, frizzled and wild, pushing out over the covers. She was now a few weeks into interferon treatment for her cancer. On the days of her infusions, she collapses into bed with chills and whole body aches. It’s jarring seeing my mom so visibly weak. She could not help the shivering. She could not bite her lip and just power through the aches. The interferon was pummeling her and I hated the medicine for doing that, even though I knew, theoretically, that it was helping. I went into the room and wrapped my arms around her without anything to say.

 

Eventually she completed the treatment and the chills and the aches stopped. The scans came back “clean”, but that might have been the easy part: getting cancer off the scans. The real hard part is getting it off your mind. Mom told me that the greatest challenge after treatment is not becoming obsessed that every headache or cold, sharp pain or little rash is a sign that the cancer is back.

 

For the rest of us, at least superficially, things seemed to be “normal” again. We didn’t really talk about cancer. We didn’t use the term “remission." We just assumed “cured.” It was logical. Plain and simple. Mom had cancer. Mom endured the treatment. Mom beat it. Like we knew she would. We could all move ahead with our lives now, thank you very much.

 

April 2015

 

Until last spring, April 2015. She went in for her yearly PET scan. She came back with “findings” that needed to be explored with a biopsy. “This really is not happening,” I remember thinking to myself. “Why not?” came an internal reply. The worst was confirmed: metastatic melanoma, stage IV cancer (“That’s the last stage,” I remember telling my older brother when he asked me how many stages there are).

 

September 2015

 

Now I’m in the first year of medical school. Tomorrow we will be talking about melanoma in class. I am doing the reading to prepare and I come across the survival statistics. Odd that I have never actually looked this up myself before. The five-year survival rate for a person with stage IV lung metastases is 17%. I stare at the accompanying figure, a Kaplan-Meier survival curve. Looking out at the 16-month marker on the x-axis: not many survivors. Were all those dots on the chart really someone’s mom or dad, or brother or sister? I keep reading, “Malignant melanoma is the cutaneous neoplasia with the greatest mortality rates and one of the malignancies with the highest potential of dissemination. The prognosis of patients with metastatic melanoma is grim…” Time for a shower, I think. Enough studying for tonight. I walk down the hall of our dorm in my sandals, head straight to the showers and turn the water on hot. I get in and stand there for a few moments, letting the water pour over me. “The prognosis is grim,” I think to myself, “17% survival at 5 years.” “Shit,” I whisper. I am hit with this longing to see my parents and be with my brothers. I picture my mom’s funeral. My brothers carrying the casket. I picture my dad speaking at the wake, thanking everyone for coming. There’s my mom’s sister and brother. There’s her best friend. There are her nephews waving goodbye to her. I picture my mom on the back porch with a cup of tea, looking toward the sun. The hot water runs over me and I weep. I cover my face, but what is the point? I can’t stop it; the tears flow, falling off my face, joining the water droplets from the shower, crashing into the tile and falling down the drain. I want to follow them down there.

 

September 2016

 

I pull a mask over my face, slip a pair of gloves on while I make my way over to the metal table to join my classmates, who are peering over specimens while a pathology resident asks a question: “What do you guys think this person died of?” I pick up the cold tissue in my hands. Definitely a lung, though it is collapsed now, greyish-tan color – bland, lifeless. The tissue is dotted by small dark specks, some as small as a pencil’s tip, others the size of its eraser. I roll these little specks through my fingers. They are smooth, but irregularly shaped. They are hard and stick well to the tissue. They are uniformly black. “Is that from smoking?” a classmate ventures. “No, but good guess!” the resident replies excitedly. “That black stuff isn’t from particulate matter. Think about what cells can make that sort of pigment.” Another student speaks up, “Skin cells. Melanocytes produce pigment!” The resident, who nods in approval, concludes, “Yes, this patient died from metastatic melanoma.” The group shuffles to the adjacent table where diseased kidneys await us. I stand with the melanoma lung in my hands and roll my fingers over the small bumps again and again.

 

As a medical student, I’ve learned enough to fear diseases like cancer, by studying their pathology, watching tumors excised from abdomens in the operating room, or as I did recently, holding the nodules of metastatic melanoma in my hands.

 

But as a son, the disease is not so much what I’m afraid of…loss is. The cellular morphology isn’t scary. Even the scans aren’t that scary. The thought of being without someone irreplaceable, like my mom, is what is terrifying.

 

Sometimes I try to live only as the medical student, sometimes only as a son. This experience, I’m learning, requires both, and, as a great poet has said, the only way forward it seems, is to live like the river flows, carried by the surprise of its own unfolding. *

 

* John O’Donohue

 

 

Watch Andrew's Healing Story Session here.


 

 

 

 

 

Hip Hop Artist Shares Stories Through Song: Perspectives From The Sandanezwe Disability Project

 

Understanding Disability Through Personal Narrative in Rural South Africa

 

By: Joel Burt-Miller, Brandeis University ‘16

 

We all have a story to offer the world. Through our stories, I believe healing can be found. In high school, I started to really understanding this more. When I was a junior in high school, I began sharing bits and pieces of my story and my perception of the world around me in the form of hip-hop songs. I wrote about my identity as an African-American. I wrote about life growing up in the Bronx, NY. I even wrote about my future plans of one day becoming a doctor. This hobby continued as I transitioned to college and I truly began to realize the power behind music and the sharing of words in general. Words are definitely powerful.

 

Scholar Aaron Corn states, “Songs are indeed powerful. They have the power to soothe, the power to persuade, the power to provoke, the power to educate and the power to lament.” I experience this first-hand every time I tune into my music.

 

Last semester, as a junior at Brandeis University, I studied abroad in Durban, South Africa, with a program focused on community health and social policy. As part of the program, I had the opportunity to explore any topic of interest and complete an independent study project. For a long time I had no clue what I wanted to study. Throughout the semester I felt a strong calling, however, to pursue the connection between music and healing.

 

During the semester, I had the chance to live with host families both in urban and rural communities. While living in one of the rural communities, called Sandanezwe, my host-brother, Mduduzi, introduced me and the other students in my program to a project that he created in the community. Mdu was in his early thirties and he walked with a limp. Through conversations with him, I learned that he suffered from Polio as a child. The project he created, the Disability Special Project, seeks to create a safe space for the disabled community within Sandanezwe. It is a project established and solely maintained by the disabled community. I saw how Mdu’s experiences growing up in this community shaped his vision for this project. In South African society, and many other parts of the world, many people who are considered disabled face exclusion from society and other forms of discrimination. Although I had no prior experiences working with disabled people, meeting Mdu and hearing his story inspired me to learn more.

 

After much thought, I decided to go back and live in the Sandanezwe community for three weeks to conduct my independent study project. I titled my project “A Mirror to Society: An autoethnography reflecting perspectives of disability through personal narrative in a rural community in South Africa,” and through this project I sought to hear the stories of members of the Disability Special Project, with a focus on their self-perceptions. I also interviewed members of the greater Sandanezwe community to learn how they viewed people with disabilities.

 

In the middle of my project, I remember waking up one morning very frustrated. Throughout the process, there were many times when I had to throw my plan away. For example, there were many days when the weather was too cold or rainy, and no garden members would show up to work, which meant I wouldn’t be able to speak to anyone. This morning, instead of sitting around in misery, I decided to go for a walk and climb to the top of a mountain. I found a nice spot overlooking the beautiful scenery of Sandanezwe. I looked out to my left and saw an endless array of green mountains weaving off into the distance. I interrupted my gaze to select a song to play on my iPhone. Unlocks. Scrolls. Music. Genres. Scrolls. Instrumental. Scrolls. J. Cole. Scrolls. Love Yourz (instrumental). Click. My ears were then greeted with the soothing sound of piano chords. The instrumental was from a song by J. Cole entitled “Love Yourz”. While listening, I looked up at the mountain range, and the words “you can, you can, you can” rang through my mind. I started to think of the interviews I had done so far, and the responses that I had received, especially those of the garden members. “I can do things, but they won’t let me do it!” echoed the voice of one member in the garden. “I’m strong! I am a human being,” rang another garden member’s voice. I pulled out my phone and started to note my thoughts. My thumbs moved swiftly. “Don’t let nobody ever tell you, you can’t do,” I wrote, “Can’t walk, can’t shoot, can’t love, can’t live…” I was writing to those voices of oppression. I was writing to the oppressor. I was writing to myself.

 

One of the last questions I asked the garden members in my interviews was, “If you were to write a song to the community to help them to understand you better, what would you say?”As they answered I took note of the responses. “I can write that God is the beginning and the end, so all our challenges if you can take our problems and put them in God I think all our challenges will disappear,” one member replied in his soft-spoken voice. “I can tell people that I’m proud of myself in a way that whatever I contribute in the project it can also benefit the community,” another determined member responded. “I will write a song and say that if they see me as a disabled person they mustn’t think that I’m useless because they are so many things that I can do for them. They must respect me and have hope in me because I can do of the things that can help them,” said another. A group of three said, “We can introduce the song to teach the community that a disabled person can do anything that a person with no disability can do.”


It wasn’t my plan to write a song for my project but sometimes the best plan is to just live in the moment. I realized that this was what I wanted in my project all along. I wanted the greater community to hear the voices of these members of the garden. I wanted the garden members to know that their perspective matters. After another day and a half of reflecting on these responses, listening to the instrumental on repeat, and writing, the song was complete! The song is especially powerful because it was created using the words of the garden members. On my final day in the garden, a celebration took place. The Department of Agriculture and Environmental Affairs from a neighboring town came to meet the garden members and planted onion seeds with them, and I performed the song I created for them. Everyone crowded around me with big smiles as I began, and at the end of my rendition, the garden members all clapped and cheered. New life was deposited into the space. Seeds were planted both literally and figuratively in the garden that day.

 

You can watch the Mirror To Society video here.

 

 

Voices from the Eating Disorder Recovery Community: Emily's Story

 

 

By Annie Robinson

 

Emily and I met in February 2012 at a treatment center in Cambridge, Massachusetts, during one of the darkest periods in both of our lives. Our respective eating disorders had taken a devastating toll, severely damaging our relationships and our bodies, and utterly depleting our spirits. I could not have been more fortunate than to surrender to recovery at that moment, because it brought Emily into my life. She has been an unparalleled source of sisterly love, spiritual resolve, and unwavering support.

 

Emily’s eating disorder developed when she was just 14, shortly after she left home to attend boarding school, when her parents were getting divorced. She talks about the difficulty she had – and sometimes still has – in speaking and claiming the word “bulimia”. She reflects on how her eating disorder was not born from body hatred, but rather a plethora of painful emotions seething inside her.

 

For years, Emily’s eating disorder was her hidden identity, active to varying degrees but always present. She was convinced it would always be a part of her life. But finally, when she was 28, her family confronted her and revealed that they knew about it. Emily allowed them to serve as her initial motivation to begin recovery.

 

When she first entered treatment, Emily struggled to even find the words to articulate her feelings, thoughts, and behaviors. But as she began to crumble in the safety of treatment, she also began to blossom.


Now 32, Emily resides in San Diego, California where she devotes herself to mothering her 20-month-old daughter, Winnie. She shares her aspirations for Winnie, and the values born from her experiences in recovery that steer her parenting decisions. And she speaks about how being a mom has bolstered her along the path of recovery, and celebrates how far she has come.

 

Read about the mission of the Eating Disorder Recovery series here.

 

Listen to more stories in the Eating Disorder Recovery series here.


Voices from the Eating Disorder Recovery Community: Kristie's Story




By Annie Robinson


I met Kristie in July 2014, one month into my healing process at Monte Nido Vista. She had begun her journey towards recovered at Monte Nido one year earlier, on July 4, 2013. She returned last summer for a visit, and to offer a living model of recovery for those of us still in residential treatment. I was awed then – as I am even more so today – by her forthrightness, self-motivation, and steadfast belief that reaching recovered is absolutely possible. She is one of the most resilient and self-aware people I have met, and imparts wisdom every time she speaks.

 

When she was a teenager, Kristie began competitive weightlifting. The sport proved to cultivate a culture of restricting and binging, and she soon developed an eating disorder. Over the years, she cycled through various behaviors, including compulsively exercising, restricting, binging, and purging.

 

Kristie – like so many of us – was told her disorder was chronic, that “recovery” meant maintaining her eating disorder, not overcoming it. But she wasn’t willing to settle for this prognosis. So she sought out treatment options in the Northern Hemisphere, found Monte Nido, and embarked upon her path towards recovered.

 

Kristie speaks candidly about the challenges of recovery: there is no clear way it is supposed to look; sometimes it is necessary to follow a meal plan, but the goal is to move towards intuitive eating; she had to acquire basic life skills that the eating disorder prevented her from learning previously; her eating disordered mentality also manifested in finances and relationships; and the differences in motivation to start recovery versus to continue in recovery.

 

Now two years into committed recovery, Kristie serves as a mentor for those earlier on in the journey through a global eating disorder recovery peer support program called MentorConnect. She describes the unique recovery team that she had to create herself, as professional eating disorder recovery resources are greatly lacking in the Southern Hemisphere.

 

Kristie expresses her perspectives that hope is the “first and crucial” element in recovery, and how important it is to revolt against cultural messages that encourage body-hatred. Her story and her dedication call us all to join her in manifesting a body-positive, hope-filled society.

 

Born in England to New Zealand parents, Kristie grew up in Australia, but has been living in New Zealand for five years now where she currently works for Outward Bound.

 

Read about the mission of the Eating Disorder Recovery series here.

 

Listen to more stories in the Eating Disorder Recovery series here. 

​Chronic on Campus: My Reflections on Student Health, Illness, and Disability

By Christopher Kabacinski


What makes up the world, for me, is language. While the natural sciences contend that the world is made of matter—atoms, molecules, cells, genes, tissue, organs—I believe that language accounts for what happens between people. We don’t just pass down genes. We inherit the words we speak. We don’t just care for our own bodies. We care for our own stories.

 

I arrived at Boston College certain that I would study English and love it, but after a year of introductory English classes, I felt entirely uninspired. What was the matter? When it came to the stories, what mattered?

 

During sophomore year, something happened in my own story. I stumbled across a news article about a new interdisciplinary Medical Humanities minor. Medical humanities is a field devoted to the humanistic and cultural study of medicine, caregiving, illness, disability, and representations of the body; it values the interconnectedness and complexity of these issues, looking at them from different perspectives in order to better understand them. These topics have always been present in my life: my sister works in a lab, my twin is studying medical imaging, my mother is an EMG technician, my parents cared for aging and ill relatives and friends.

 

Could medical humanities synthesize my love for literature and my interest in caregiving and healthcare?

 

Sophomore fall, I attended a symposium at Boston College on Genetics, Narrative, and Identity. Contributors to The Story Within, a collection of essays on genetic diseases and the complex life-stories and decisions surrounding them, captivated me with their candor, strength, and insight. The day culminated in a writing workshop and keynote address given by Rita Charon, M.D., Ph.D., who founded the field of narrative medicine. She made clear to me what it means to be present for another person, in sickness or in health.

 

I decided to enroll in an introductory medical humanities course. In the texts we studied and the conversations in which we engaged, the complexity and high stakes of the issues—genetic testing, public health, representing disability and disease—marveled me.

 

The most compelling text to me was Elaine Scarry’s The Body in Pain. She writes: “Whatever pain achieves, it achieves in part through its unsharability, and it ensures this unsharability through its resistance to language.” 1 Pain is that which cannot be put into words, cannot be represented; so specific, so individual, it falls outside of any system of communication. At the same time, pain is perhaps the most difficult thing for a listener to believe. If pain really did destroy language, dissolve the relationship between two people, what did this mean for me and my world of words?

 

But, more importantly, pain calls us to bridge the gap between individuals. Pain calls us to create something, to listen with empathy, to trust, to acknowledge the other, to bear witness. In sickness and in health, in pain and in pleasure, our words and our stories are what humanize us and connect us.

 

A friend of mine recently shared with me that she has been dealing with diabetes since she was two years old. She is one of the most driven, most involved students I know. I felt so fortunate and honored to hear her story and her insight. Her story and the conversations that followed strengthened our friendship.

 

In college, the stories of chronic illness or disability are so often untold and unheard. Built environments and institutional policies, sometimes established without consideration for those who have chronic illnesses or disabilities, can intensify these potentially isolating experiences. Laurie Edwards, a writing instructor at Northeastern University and a person with chronic illnesses herself, writes on the state of colleges for students with chronic illnesses or disabilities, shedding light onto the ways in which colleges fail these students.2 Students, faculty, and administrators should acknowledge these students and their individual needs. Making accommodations for these students and respecting their stories for these students will ensure that higher education remains accessible to all people—sick or well, disabled or able-bodied.

 

On a college campus, it is easy to assume that everyone is healthy, with crowds at the gyms and a vibrant and energetic student population. At the same time, illness is easily normalized. What college student hasn’t been exhausted? Who hasn’t caught a cold in a residence hall? We must heed narrative medicine’s call to honor the stories of health and illness in each individual, to acknowledge its specificity, and to listen with care and empathy. With this kind of attitude, we can perhaps see that the campus of the healthy and the campus of the ill are not different places: they’re the same.

 

Over the coming months, I will facilitate the sharing of stories about college students living with chronic illnesses or disability. Stay tuned for future features from me on these issues.

 

Christopher Kabacinski is a rising senior at Boston College, where he is studying English and Medical Humanities. He is a founder and the editor-in-chief of The Medical Humanities Journal of Boston College, a student-run journal featuring undergraduate work on issues such as medicine, health, illness, disability, bioethics, and representations of the body. Currently, Chris is working as intern at Health Story Collaborative. He is developing a project about college students with chronic illness or disability. If you or someone you know might be interested in sharing his or her story of health, illness, or disability, please contact Chris at healthstorycollaborative@gmail.com.


Resources: 

1. Scarry, Elaine. The Body in Pain. Oxford University Press: New York, NY, 1985. Print. 4.

2. Edwards, Laurie. “When It Comes To Chronic Illness, College Campuses Have A Lot To Learn.” WBUR, Cognoscenti: Boston, MA. 5 March 2014. Web. Accessed 16 June 2015. 

Our First Diagnosis Spotlight

By Dr. Annie Brewster


Part of our mission at Health Story Collaborative is to give patients a voice. In the harried climate of today’s healthcare system, with 15-20 minute visits and a focus on efficiency, it is easy for patients to feel rushed and ignored. We are often left wondering if our concerns were truly heard and taken seriously. As a medical provider who has also spent a lot of time on the patient side of the equation, I feel it is my responsibility to try to ameliorate this situation. One small step in this direction is the creation of Health Story Collaborative’s Diagnosis Spotlight. Periodically, we will feature a medical condition and a collection of stories (in either written or audio format) from individuals living with this condition. Our goals are two-fold: to increase awareness and understanding, and to allow for individual patients to be heard. Our intent is to celebrate human resiliency in its myriad forms, not to advocate for any particular treatment or viewpoint.

 

For our first Spotlight, we are featuring gastroparesis, with an informative introduction by Melissa Adams VanHouten (also one of our story sharers), followed by six written entries from individuals living with this disease. As you will see, gastroparesis is an often debilitating and poorly understood condition, with the majority of cases being “idiopathic”, meaning of unknown cause. Individuals living with this diagnosis often feel misunderstood, judged, and lonely, not to mention the physical challenges they face. These stories are examples of how people find the strength to keep going in the face of illness and the courage to reach beyond themselves to help others.

 

Check out the Diagnosis Spotlight here

 

Read about Gastroparesis here

Living Life, Facing Death: Navigating Acute Myeloid Leukemia

 

Check out our newest audio story, featuring Paul Giese, a 75 year old male living with and ultimately dying from Acute Myeloid Leukemia. 

 

This piece was authored and audio produced by Health Story Collaborative Program Officer, Annie Robinson. 

 

​Seeing Stories: A Profile of Bradley Lewis

 

By Annie Robinson

 

Bradley Lewis - psychiatrist, philosopher, and professor - has spent his career in the classroom and clinic attending to stories of health and illness. Two years ago, Brad’s lifelong inquiry into the crucial dimension of story in illness experience took an unforeseen turn. He entered the medical system as a patient when his eyesight began to fail, gradually but persistently, which led to a diagnosis of cataracts.

 

As Brad’s eyesight worsened, he grappled with the distinction between being viewed by society as able-bodied or as disabled. When he could no longer see the slides in faculty meetings, or see his students as well in the classroom, or read materials as quickly for committee meetings, he better saw how “unsympathetic the normative world can be” to the loss of functions we often take for granted. “It’s a big deal to have to navigate that.”

 

Brad trained in psychiatry in the early 1980’s, but felt dissatisfied with the field’s heavy emphasis on biology over biography. At the time, psychiatry was transitioning from a psychoanalytic perspective to a biological one. He recalls feeling “like they both had something valuable to say, but the two messages weren’t integrated at all...it left us to put it together as best we could.” So he started taking classes in the philosophy department to explore the mind/body connection. As he became more involved in the arts, humanities, and cultural studies, he realized that psychiatry was under-emphasizing what really matters to people when they’re going through difficult times: story.

 

Brad completed his psychiatric training, which he augmented with a Ph.D. in the humanities. He has written and taught extensively on the intersections between medicine and narrative, and believes stories must be prioritized as a crucial dimension of healthcare. Stories are powerful tools that can aid in healing because “stories are beyond right or wrong. They’re metaphorical.”

 

Soon after receiving his cataracts diagnosis, Brad opted for surgery. This surprised him, for he tends to challenge the common impulse to adopt a highly medicalized approach. In both academic and clinical settings, Brad encourages individuals to ask: “What kinds of alternative ways to telling this story might there be? What languages make sense to you?” He believes “it’s okay if we combine languages - spiritual with biological, for example. There are all kinds of stories that we can bring together to make sense of not only the past, but the future.”

 

In his own case, the disease model that involved seeking an immediate, surgical solution to the problem felt appropriate to him. However, he still strongly feels that “if someone doesn’t like using disease models and metaphors, that’s fine. There are lots of other models and metaphors. And if someone finds disease models and metaphors helpful, that’s okay, too.”

 

For clinicians working with their patients, “it’s about meeting the patient where they are, offering them language and support that best serves the healing they have to do.” Although he adopted the disease model language and approach in his own case, Brad still felt at odds with his care providers. “The doctor I finally found really just treated me like a machine. She couldn’t relate to me as a person at all, even though I guess she was one of the best.”

 

Like so many patients, Brad felt apprehensive entering the medical system “because a lot of people are trying to make a buck out of it. They want to sell you more than you need. And any kind of rating system is hard to make sense of. They are biased towards values that I don’t particularly share. I had to do a lot of work to find someone I thought could have a conversation with me.” And he knows, from his scholarship and clinical practice, how imperative it is for a patient to work with a caregiver who can engage with their situation as a story.

 

Brad has written extensively about narrative medicine, a field that examines how to be sensitive and attentive to stories in healthcare. He sees story as functioning in multiple ways: “Narrative takes a whole bunch of things that don’t seem to fit together - like our body, our illnesses, our dreams, our childhood, religion and spirituality, culture - and allows us to tell stories that bring all those variables together. Story seems to be central in helping people understand themselves in time and to put their life in perspective with a variety of different variables that are influencing them.”

 

Brad believes that “the practice of collaboratively telling stories in the clinical setting empowers both people in the room - clinician and patient - to begin to weave those possibilities together in a way that makes sense to them.” But the stories he brought to the providers he met with about his cataracts were not well received.

 

Near-sighted all of his life, Brad thought he might want to correct for near-vision. When he proposed this idea, it “befuddled” his doctor and the team because it meant he would still need to wear glasses. They shut down his request to explore this possible unfolding of his story, which caused him to once again feel outside the norm and isolated.

 

“So then I had to get support from friends...people who had personal experience and could help me navigate it and keep me company so I wouldn’t be all by myself with the clinical team that was so sure of itself.” Brad strongly recommends others follow suit by seeking support from alternative sources. “A lot of people who are dealing with the healthcare system need friends with them in the process. Bring comrades who’ve been through it too.”

 

Ultimately, the surgery was successful, and Brad accrued insights into the patient experience he hadn’t before been able to grasp so intimately. “Your personal experience matters. You’re not just a machine. You have preferences. You have to grieve for different things. You have different values about what you want. Medical decisions are personal decisions, they’re not just medical decisions, not something you can read off a medical protocol. Each person has different angles about what they care about and how they want to approach it.”

 

 

More about Brad Lewis:

 

Bradley Lewis MD, PhD is associate professor at New York University’s Gallatin School of Individualized Study. He has affiliated appointments in the Department of Social and Cultural Analysis and the Department of Psychiatry. Brad writes and teaches at the interface of medicine, psychiatry, humanities, and cultural/disability studies. He is an associate editor for the Journal of Medical Humanities and his recent books are Narrative Psychiatry: How Stories Shape Clinical Practice and Depression: Integrating Science, Culture, and Humanities. His current research is devoted to the ways art, politics, and spirituality impact human flowering.

 

 

More about Annie Robinson:

 

I have experienced the powerful effect stories have in healing as both a patient and as a caregiver in the role of a full-spectrum doula, which involves supporting women through abortion, miscarriage, and fetal loss. As a graduate of the Narrative Medicine master's program at Columbia University, my driving mission in life is to elicit, honor, and attend to stories.

 

I am the Assistant Director of the Center for Narrative Practice, which provides people with deep critical training in how stories work and trains them to apply this knowledge to everyday life by using narrative practice, creative arts, and the study of story. I also curate an oral narrative project called “Inside Stories: Medical Student Experiences”, for which I interview medical students about their experiences in medical school with the intention to provide a platform for their own person healing, self-realization and empowerment through the sharing and receiving of personal stories.

 

I am honored to serve as Program Officer for Health Story Collaborative. As such, I conduct interviews, edit audio stories, and write a blog posts that profile remarkable individuals committed to honoring and making use of stories in health care. If you or someone you know might be interested in being interviewed, please contact me at healthstorycollaborative@gmail.com

Healing Art Stories - Featuring Artist Dennis Svoronos

 

Health Story Collaborative believes there are a myriad of ways to share a story. To broaden the frame of narrative beyond the written and spoken word, we will periodically feature an artist whose work communicates a narrative related to illness and healing. Today, we are celebrating Dennis Svoronos, a Boston-based Sculptor who describes his work as existing "between art and engineering".

 

Sick, not silent


By Dennis Svoronos

 

In September of 2009 – at 26 years of age – I was diagnosed with cancer, after experiencing the first of many seizures to come. Of all the trials I could imagine that lay ahead, I never thought most of them would be exercises in recollection.

 

Patient name? Dennis Svoronos (thankfully I can always get this one)

 

Date of birth? 3/8/83 (a palindrome, helps to keep it easy)

 

Occupation? Artist (maybe not my parents first choice)

 

Approximate date of last surgery? 11/09 (Who forgets their first brain surgery)

 

Existing medical conditions? Anaplastic Astrocytoma (a cancerous brain tumor)

 

Repeat daily, for years.

 

As time progressed; I remember those waiting rooms, questions and ID tags much more than the operating theatre and injections; trauma is kind like that.

However, they made me feel intrinsically linked to my disease. What was I, without these suffixes of sickness to identify with? Somehow, all my other unique and admirable qualities were set-aside for the identifier of ‘cancer patient’. It’s easy to resign to the belief that those forms and wristbands define your life, mere statistics, data - you and your cancer. Just as painless, is to ignore the process completely, pretending your exams and operations are the bad dreams of another person, your ‘real life’ goes on unaffected.

 

Either way, it seems you’re not to talk openly about cancer, and it is difficult for most; patients, family and doctors alike. My initial sense was, it would be easier for me - and more comfortable for others - to keep off the topic. Sickness is a surprisingly taboo subject in a very liberal culture.

 

The artist in me, however, couldn’t stop questioning why we hide from the discussion. Over the course of my treatment and the years to follow, the entirety of my work became a continuous, very uncomfortable, conversation about my disease with anyone that would listen.

 

In doing so, I freed myself from the fear and shame that I felt initially upon my diagnosis. It allowed me to speak honestly to an audience on an issue I was passionate about, to relate to others on a level beyond the initial stigma of sickness. I became a proud patient. My work wasn’t about the ‘battle’, ‘fight’ or being a ‘survivor’; the words of conflict I was trying to avoid. The art became focused on the subtle, sincere and even sarcastic aspects of the life-changing experience I was going through. I wasn’t interested in discussing my struggle with cancer; I wanted to embrace the insight it gave me.

 

In January of 2014, I exhibited a solo show of this work at the Boston Sculptors Gallery (486 Harrison Ave. Boston). In the month that followed, I was able to engage with patients and the public in ways I was never able to before. My show became a safe space for anyone to talk about this difficult subject. In doing so, stories were shared, wisdom was gained and many tears - of joy and woe – were shed. To all who came, I sought to impart a sense of community and empathy they didn’t enter with. I learned, as a patient I need to speak about my experience with the ‘healthy’ world, regardless of stigma or discrimination. My ultimate healing came through delightful conversations about a horrible problem. 




  1. Personified’ – glass, aluminum wood and MRI scans 2011

 

 

 

  1. Just in case’ – wood, glass, medical supplies 2012

 

 

  1. Adjusted Schedule’ – wood, glass, and the artists’ irradiated hair

 

 


Dennis Svoronos: Biography



Dennis Svoronos’ work exists between art and engineering; it is inspired by the modern world in motion. He uses his sculpture to reflect this environment charged with electricity, spectacle and information. He uses our common language of the 21st century: electronics, robotics and interactive kinetics, to build connections between the viewers and the work. In a society fractured by technology, Dennis Svoronos uses it to bring us together. At current, he is making work in response to his recent diagnosis of brain cancer, seeking to use his art as a platform to question sickness, wellness and recovery.

 

Dennis Svoronos is a Boston-based sculptor whose work has been shown nationally and internationally. He holds a diploma from the School of the Museum of Fine Arts, Boston, and a Bachelors of Fine Arts from Tufts University. His work has been exhibited at numerous institutions and galleries such as the MFA, Boston; the Norton Museum of Art, Palm Beach, FL; G.A.S.P Brookline, MA; and the Institute of Contemporary Art, Lake Worth, FL. Svoronos has also been the recipient of numerous awards and public work commissions. Currently, he is living and working in South Boston.

 

Dennis@DennisSvoronos.com

 

www.DennisSvoronos.com

 

Healing Art Stories - Featuring Artist Gillan Wang

 

Health Story Collaborative believes there are a myriad of ways to share a story. To broaden the frame of narrative beyond the written and spoken word, we are pleased to be launching the Healing Art Stories project. We will periodically feature an artist whose work communicates a narrative related to illness and healing.

 

We will collect the featured artworks in our online gallery, the " Healing Art Archive."

 

 If you or someone you know might be interested in submitting work to be featured in the gallery, please contact us at healthstorycollaborative@gmail.com

 

Artist Gillan Wang:


Quilt for Emalia Brown, 25.5" wide x 25" high

Machine quilted and hand stitched with organza overlays and beading.

 


Project Summary:

This quilt was made for Emalia Brown, a high school friend from Maui, where we both grew up, after she was diagnosed with stage IV cancer. The news of Emalia’s illness came as a terrible shock. I created the art quilt to raise money to help defray her escalating medical costs and to work through my own sadness and demonstrate my compassion. She died while the quilt was in process, and It is now being donated in her honor to benefit her preschool aged son, in the Kahalakea Guard Educational Fund. The format of the piece is based on a traditional Hawaiian quilt, but differs in that it tells the story of Emalia’s journey, and our shared connections to Hawaii.

 

 Traditional Hawaiian quilts typically feature a solid geometric plant-based pattern, appliqued onto a high-contrast solid fabric. The geometric pattern that I created is based on the silhouette of my friend from a high school year book photo. The reference is specific, yet her identity is intentionally ambiguous. (Emalia’s trademark is a flower behind her ear, which is discernable in the silhouette). I used sheer fabric for the silhouette/geometric shape, atop many colorful fabrics that collectively evoke a sense of water, marine life, flora and fauna – all of which we both love. The sheer fabric allows the imagery below to read through, thereby allowing for multiple readings, and suggesting an elusive state of existence. The words grace, love, peace and eternal are embroidered on and around the geometric form, in English and in Hawaiian.

 

 While I was driven by sorrow to create this quilt, I aimed to express a more upbeat message of love, peace and acceptance.

 

The creation of this artwork helped me to come to terms with a very upsetting loss. Initially I was overwhelmed by my sadness, but eventually this project helped me to reflect on the positive attributes of my friend, which we will forever celebrate. It also allowed me to feel empowered by taking action to help my friend's family in a tangible way, as opposed to feeling helpless about an unfair situation.  


Artist Statement

My work is primarily mixed-media, with a recent focus on art quilts. Most of my work is inspired by life’s poignant experiences, such as newborn children, parenting and loss. I am especially interested in establishing a narrative in my work, which invariably informs the aesthetic of a piece. I enjoy creating and considering multiple interpretations, and I take pleasure in exploring concepts and ideas using a variety of materials in unexpected ways. Whimsy, bold color schemes, text and found materials often characterize my work.

 

I grew up on Maui, Hawaii, which heightened my aesthetic sensibilities and appreciation of color and the natural environment. I have a deep love of diverse materials and for working with my hands. I have a BA from Bard College and a Master’s degree in Architecture from Syracuse University, which expanded my capacity to think spatially, and introduced me to many concepts that I now explore in my artwork, such as layering and transparency.

 

Art by Gillan

Art quilts, collage & painting

Website: ArtbyGillan.com

Email: ArtbyGillan@gmail.com

Phone: 617-462-4420   


 

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