The unit is separated from the outside world by two pairs of locked double doors. A blinking green light and a soft beep herald our passage through them into a no-man’s-land where a guard sits, patiently unlocking the doors as we come and go. When I enter the airlock the first morning, hang my coat and stow my backpack, it feels as though I’m in a sci-fi movie, an intergalactic explorer awaiting my first excursion into the uncharted expanses of space. The atmospheres equilibrate and, I will soon learn, norms are stripped away, decompressed. Not sure what to expect, the door chirps open and I step into my month-long rotation on the inpatient psych ward.

Each morning, residents, psychiatrists, nurses, social workers, and I pile into a tiny, windowless room with chairs pushed up against the walls in two rows facing each other. I am the only medical student among them, a wide-eyed interloper squeezing into a center chair. Patients are led in one by one to sit beneath a watercolor painting of goldfish in a pond while we ask them things like, “How is your mood today?” and “Did you need your Zyprexa to sleep last night?” A pleasantly psychotic woman, untroubled by her delusions of being a powerful real estate lawyer – she is homeless but insists that her office has faxed her discharge paperwork – doesn’t seem to notice that I’m there. With fifteen or twenty minutes per patient and our elbows and knees bumping up against each other, these encounters are concentrated in time, in space, in feeling, and they leave me jelly-legged and dazed when I finally stand up hours later. Every minute I’m cycling through the full range of human emotion, from proud to sad to irate to hopeful. I fidget in my chair as tremulous patients beg for benzos. I hold back tears as a suicidal businessman crumples wet tissues in his bandaged hands. Sometimes I just stare at the goldfish and wonder if this is what it’s like to be crazy.

One day a few months prior on a surgery rotation, I stood in the OR at the end of a long case, carefully running a subcuticlar skin closure.

“You’re a natural.” The surgeon, arms crossed, looks over my shoulder. “What specialty do you want to go into?”

“Neurology.” I watched the last stich pull the skin into a taught pink line the patient would remember me by.

“Neurology?” She sounded confused. “But don’t you want to fix people?” Her jaw was tight and face serious.

This was nothing new. From the beginning of medical school we are taught to diagnose and treat. We recite mnemonics for the acute management of myocardial infarctions, and can name first, second, and third line therapies for asthma. We titrate blood pressures to evidence-based levels, and feel weirdly satisfied when our heart failure patients pee after a dose of diuretics.

We are taught to grow from the first year student who can report that something is wrong to the doctor who can do something about it.

On the psych ward, my patients’ foggy insights clouds my own. I find myself in the thick of the confusion with them, trying desperately to “fix,” to “cure,” to achieve some venerated end I had been conditioned to strive for, and driving myself insane with an inexplicable rage when I can’t. A woman with a functional tic can’t accept that her problem is not the result of medical errors and refuses psychiatric intervention. A kind man with bipolar disorder and an addiction who got high and tried to crash his yacht tinkers with his medication doses and stares silently out the window at the sailboats dotting the river below. A deeply depressed attorney can’t allow himself to just feel sad. Seeing them every day is excruciating: each carefully articulated question I ask falls flat, and simple conversations quickly turn into circular back-and-forth’s that devolve to the absurd. Every day I feel like banging my head against the wall, and each night I drag home the weight that others can’t carry.

Shelly* is 30-something, wiry, all clavicle and bony knees– breakable, almost – with thick glasses that magnify her round eyes and give her a permanently forlorn look. She wears Victoria’s Secret sweatpants with a black sweatshirt and Ugg boots, her long brown hair pulled into two braids that fall down her back.

The night before her arrival, she had lined up her anxiety pills, her mutinous artillery of serotonin and GABA, in one last attempt to create order in her chaotic life, before swallowing them one by one. However, her final act of treason was interrupted, and she ended up with us. When we first meet, she is reticent, eyes downcast, giving up only a word or two in barely a whisper. But soon, she opens up.

Two young women in a foreign land, we hit it off: she shows me the drawings she makes in the journal she guards tightly against her chest with crossed arms as she walks around the unit, and talks about seeing her dog when she gets home. She is tougher than her small frame lets on, both physically and mentally. After a week of dutiful CBT practice, she is deemed ready to go conquer her automatic negative thoughts on her own, out in the real world. On the last day of my rotation the two of us sit under the goldfish, talking about going home, about passing through the airlocked doors back to the outside world. Suddenly, her face clouds and she begins to cry for the first time since she’s been here. I hand her tissues.

“What’s wrong?” I break the silence.

“I feel like a failure,” she says through tears. “I’ve worked so hard, what if I’m not actually better? What if I go home and it all starts again?”

I pause.

“Well, at least you’re trying, right? That’s pretty good.” I watch her think about this for a moment, brow furrowed, tiny fists balled in her lap.

“Yeah,” she smiles a little to herself, eyes looking thoughtfully at the floor. “I guess that’s something.”

Back between the doors, I wait for the green light one last time. Four weeks, ten discharged patients, dozens of prescriptions, and countless long silences later, I don’t think I fixed anyone. I sat with them, though, through all the tears and all the tic-ing, and heard what they had to say. Maybe this is how we help: we shelter, we stabilize, we listen, and we together we take steps, however small. We may not always be able to fix. We may not know what happens when our patients leave the quiet of the pond for the rough ocean waves. But we try. Well, I reassure myself, I guess that’s something.

* Name has been changed

Emma Meyers is a third year medical student at Harvard Medical School. She grew up in New Jersey and graduated from Columbia University with a degree in neurobiology. She plans to do a residency in neurology. Outside of medicine, Emma enjoys art, reading fiction, hiking, cycling, and traveling.

I met Denise last spring, in a 6-week Narrative Medicine course I co-taught for social workers. She stands out in my memory of the group in many ways: her outfits were always exquisitely coordinated; her eyes sparkled and often glistened with tears; she easily offered humor, truth, and consolation. She always made comments that illuminated the texts we read together in ways I had not previously considered. Perhaps most striking of all was how profoundly the workshop seemed to impact Denise: “It was a monumental experience for me, in my life, as a clinician and as a person.”

For 28 years, Denise has been serving victims of trauma in Brooklyn and Queens. Although she considers herself strong emotionally and mentally, she inevitably experiences vicarious trauma through her work. Narrative medicine - a field based in the belief that effective clinicians must know how to receive, interpret, and help craft their clients’ stories - offers her a means to work through some of that trauma: “(It) is a healing measure that I can tap into that will keep me grounded, keep me available, keep me conscious. To never ever find myself in a position of ‘Oh, I’ve heard this, I’ve seen this before…’ No. Each time is my first time with that person. And (narrative practice) helps with that.”

As traditional narrative medicine occurs in a classroom, the course consisted of closely reading and discussing a piece of poetry or prose every week. Then each participant, facilitators included, composed a brief response to a prompt related to the reading, and shared our writing aloud with one another.

Denise has always used writing to sort out her experiences. But the practice of narrative medicine expanded her appreciation for the power of the written word: “Reading someone else’s writing and trying to make sense of it, how I might interpret it, and then using that to be able to reflect and write about a personal experience I’ve had – that blew me away.”

Denise models how clinicians can incorporate narrative practice into both their personal and professional life. She finds it helpful to do on her own during a busy day at work: “Sometimes I’ll have to sit in my office and close my door and start writing a thought that I had about an experience I just had with someone, and it’s safe. It’s in a place where I know I can go back to it. I can ground myself. I can be in a place of objectivity instead of subjectivity.”

Denise also introduces her clients to their own narratives during therapeutic encounters, by asking: “What was the first thing you thought when this happened to you?” She observes how an invitation for them to tell their first-hand experience of the trauma “allows them to push everyone else to the side. Often people don’t think about their first thought, their first emotion. And that gets them to a place where they can write a (first-person) narrative.” 

She guides them to develop their story, through writing or speaking: “Some write a paragraph, some only write three sentences. And those three sentences we can talk about for weeks. Some of them choose not to write at all, but instead to record their own voices. And they save those recordings in their phone, and they (listen to it) every so often.” Some of her younger clients even choose to narrate through rap.

Once they begin writing - songs, lyrics, poems, any genre - Denise sees them “healing and moving forward towards closure. They’re experiencing and developing or recognizing skills they had but suppressed or pushed to the side, because they didn’t consider it important. But it’s that very strength they have in them that draws them to a place of healing.” There is a sense of ownership, mastery, and pride that they gain from becoming authors of their life experiences.

Denise encourages her clients to see themselves as she sees them: individuals who have experienced traumatic events, not victims whose stories can be lumped together in domestic violence tropes. She discourages them from telling their stories as: “I’m a victim of domestic violence and this is what we victims of domestic violence…” Denise instead tries to help each client realize, through crafting a unique story, that “You’re an individual. This is what you went through. How did it affect you: your thoughts, your body, your emotions? I want them to be able to write that out. That narrative is so crucial.”

Denise recognizes, in herself and her clients, the radical changes that narrative practice can cause: “It keeps you from being stuck and unmoveable, to a place where there is mobility, and there are choices. And those choices can be so powerful that it can get people to move from A to B, but in some cases all the way down to Z (where they) find closure.”

Denise vows to carry onward in her clinical practice and personal life using narrative medicine as an unparalleled resource: “This story practice…I don’t think that there’s any medication that people can take that does the particular piece that this work does. On a cognitive level, physical level, emotional level – it’s not anything that can be replicated anywhere else.”

Below is a poem Denise wrote in honor of her clients and their experiences.

Out of the Darkness

Wounded outside in

I felt as though I have sinned

Wounded inside out

Oh how I wanted to shout

But there was no way out

Confused by the tormenting of my mind

It often told me to flee

And escape this life of mine

These intrusive thoughts

Powerful and fierce

Lead me into a world of

Self-affliction and fear

In the shadow and secret nights

You told me I was your Queen

Once you called me wife

Confused by your touch

Why did you love me so much?

Your hands strong and mighty

Forming a fist that would crush my body

So, still I stood, unaware of my own breathe

Somewhere in the corner of my mind

Wondering when will the night terror end

The story is out now and my song is strong

No longer will I hide in the corner of my mind

No longer confused and afraid of the midnight air

It stops here

Listen to my story loud and clear

I am free of the misery and constant fear

No longer vulnerable or invisible I am here

I will sing loud and strong for the courts to hear

What you have done to me over the years

It stops here.

The table has turned now

Hide in the shadow and behold your fate

As you will spend the rest of your years

Fearing those who have heard my song 

More about Denise Briales:

Denise has worked in the field of social work for the past 28 years servicing victims of trauma both from secular and sectarian backgrounds.  She herself has been exposed to many traumatic events that have made powerful imprints in my personal and professional life. Denise has long used journaling as a therapeutic tool. Since being exposed to narrative medicine, when she reads back her written words, she attains centering, grounding, awareness, and healing from the experience of vicarious trauma that affects caregivers in mental health professions. 

More about Annie Robinson:

As a patient, and as a caregiver in the role of a doula supporting women through birth, abortion, and miscarriage, I have experienced the power of stories in healing. I recently graduated from the Narrative Medicine master's program at Columbia University, and will begin at Harvard Divinity School next fall to explore the borderlines between ministry and medicine.

I also curate an oral narrative project called “Inside Stories: Medical Student Experience”, 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. You can listen to their stories on iTunes podcasts or here: http://in-training.org/inside-stories.

Over the coming year, I will be working as an intern for Health Story Collaborative and writing a series of 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.

The fact that Dominicans of Haitian descent are treated as foreigners in their own country was hinted at before we even arrived on the island. Contemporary Haitian immigrants to the Dominican Republic and prior generations experience racism and economic exploitation on a daily basis. Our Global Health service trip team was mostly white, so this discrimination would not affect me or many of the other students. However, a black girl from New Jersey was warned that if our guagua (bus) was stopped while in transit, she would likely be asked to step out by military personnel in an effort to control immigration from Haiti to the Dominican Republic. Luckily, we avoided this situation, but during my week on the island I observed many occasions of blatant racism that interfered with healthcare access for Haitians.

Each day our team traveled into “bateys” – communities – outside of Monte Cristi to support the local health center and their mission of guaranteeing patients the right to health. In the early 1900s, banana companies established bateys for the Haitians and Dominicans who worked the fields during the day, to provide them with a place to stay overnight. Many banana companies have stopped supporting the bateys, making life extremely difficult for those who live there – fruit pickers have been left without the means to support their families, and the economy suffers.

While I witnessed impoverished living conditions in all of the bateys, the Haitian batey was the most disadvantaged by far. We arrived at 7:00am to the abandoned banana packing plant and quickly transformed the area into a clinic. 30-40 patients were already lined up. Many of them had walked miles. Some of them had no shoes. Others were carrying one child on their back and another in their arms. I quickly gobbled down my granola bar while huddled over; in hindsight, I should have eaten it on the bus beforehand, away from the patients, considering many of them don’t have such easily accessible food.

As a pre-dental student, I had been assigned to spend the morning helping the dentist and her assistant. What struck me most were the Haitian children’s reactions to seeing the dentist, or lack thereof. In the U.S., it is not unexpected for a child to tantrum when propped up in the dentist’s chair. They clench their teeth closed and turn away from the approaching dentist’s hands. They cry for Mom or Dad whenever it’s deemed safe to open their mouth and howl. In contrast, not once at the pop-up clinic did I see a Haitian child fight the dentist. Not once did I hear them scream at the top of their lungs. Instead, often there without a parent, the child would lie on the chair with his or her mouth wide open, totally vulnerable, and not make a move or a sound. The dentist would scan and scrub and scrape, and then the child would sit up, lean over the side, and spit a mouth full of blood and plaque into a cardboard box filled with dirt. There were no stickers to reward their bravery or high fives from Mom or Dad. The kids were sent off with the only toothbrushes we had (boring adult ones instead of the fun, cartoon-themed ones often handed out in the U.S.), and started the long journey home.

I also experienced the impact a language barrier can have. Communication is perhaps the most important element in building a positive doctor-patient relationship. My day in the Haitian batey where everyone spoke Creole reminded me of this. Not being able to greet, instruct, or comfort these patients made me feel helpless. I still remember a middle-aged woman who let out groans so deep I couldn’t help but furrow my brow as I imagined her pain. “¿Qué le duele? / What hurts?” I asked. It was challenging enough to understand the woman’s response as she gritted her teeth and whimpered in agony, but when she answered in Creole instead of Spanish, I was filled with frustration. The language barrier made it difficult for me to clearly listen to or readily comfort her. Fortunately, we had a team of translators helping us. They translated from Creole to Spanish, and then another group translated from Spanish to English. Nonetheless, there was no way for us students or the non-Creole-speaking American doctors to directly communicate with her. I found this to be extremely limiting in assessing complaints and prescribing medicine.

As a pre-dental student majoring in Spanish, I hope to one day be able to combine my passions in order to communicate and empathize with both English and Spanish-speaking patients. My week in the D.R. affirmed the value of incorporating a Spanish language education into my dental career. Had the groaning woman spoken Spanish, I could have reassured her: “You were right to come here. Everything is going to be ok. We are going to help you.”

My week in the Dominican Republic ignited in me a desire to fight for equal access to healthcare worldwide. I will never forget the struggle of those who live in the bateys. Indeed, they will inspire me as I continue on my journey, and I hope to return one day as a practicing dentist. Until then, I plan to serve in my local community, as great disparities also exist in our own backyard.

Rachel is a junior at Washington University in St. Louis, majoring in Spanish and minoring in medical humanities. She aspires to practice dentistry and cultural humility in a medically under served area.

Putting the pieces of pain together can’t be done by just asking, “Where does it hurt?”

I have always been somewhat accident-prone. Each time I tripped and fell as a child brought the same routine. I would sit on the edge of the tub in my parents’ bathroom with a bleeding knee and a tear-streaked face as my mom or dad got out the Band-Aids, Neosporin, and the despised hydrogen peroxide (it stung too much when it fizzed). I would point to the scrape and roll up my sleeve to reveal any other “boo-boos.” I would leave their bathroom with my lacerations clean, my face dry of tears, and feeling okay, albeit a little achy.

Nearly fifteen later, as a sophomore in college, I shadowed Dr. X every Wednesday afternoon for the practicum component of a semester-long course on Medical Professionalism. In Dr. X’s office, many patients would come in with a laundry list of pain, soreness, discomfort, and hurt. The question “Where does it hurt?” seemed insufficient to understanding their pain fully. The patient may have struggled to push back on Dr. X’s hand with their face. They sometimes found it difficult to answer inquiries such as, “When did the pain start?” or, “Is it radiating?” All of these are pieces of the understanding required to provide adequate and appropriate treatment. Doing so demands the asking the patient multiple pointed questions while also testing them physically. This understanding appeared to be elusive and difficult to acquire for three main reasons: time, creativity, and trust.

Time

During my Wednesdays with Dr. X, I often noticed a tension between the care patients want and the realities of care in our current healthcare system. Patients would often try to show her pictures of their grandchildren or a recent vacation. Sometimes, they, an aging parent, wanted her to explain over the phone what was wrong with them to a concerned child who could not make the appointment. She always obliged as best she could but the system in which she provided care made it difficult. Dr. X was known in her practice for seeing roughly half as many patients as her fellow physicians. She often mentioned to me how difficult it was to accommodate these seemingly irrelevant components of a patient visit when they were often what made the patient most comfortable and most inclined to tell their story.

The doctor’s visit with the patient can only last so long, for other patients need care too, and there are only so many hours in the day. Thus, even when the “right” questions are being asked, patients may not have the opportunity to fully translate their feelings, aches, and pains into words with context (a mosaic of experiences, emotions, environment, and everything in between). As a result, it is challenging to gain a strong understanding of what they are experiencing and subsequently make a suggestion about how to treat their condition(s).

Creativity

I often noted Dr. X’s inventiveness on our Wednesdays together, inspired by her ability to ask questions that led her closer to a diagnostic truth regarding the patient’s experiences. Sometimes people are insecure about their diets, how much they exercise, how often they take a prescribed medicine, and other areas of their lives in which they are not perfectly compliant with doctors’ orders. Thus, we are less likely to offer responses to a provider’s question that allow them to help us, for we are trying to protect ourselves without even realizing it.

This reminds me of visits to the dentist. When the hygienist asks if I’ve been flossing as she scrapes and polishes my teeth, I know that I have to be honest because she has the proof right in front of her. But we all often lie, feeling sheepish for not doing what was asked of us.

Sometimes a matter-of-fact question like, “Do you go to the gym regularly?” is sufficient for a useful answer that guides the doctor to a diagnosis. However, sometimes it seems more appropriate and productive to ask, “What is your daily schedule?” This gives the patient a chance to tell the doctor what they want, be it that the entirety of their exercise regimen consists of walking to work, or that they stop at Chick-fil-A on their way home for dinner. Although this question may not have appeared at the start to have a direct correlation with healthy eating/regular exercise, it may make the patient more comfortable and allow for a more organic conversation. When Doctor X asks more flexible and open questions, this allows for more creative and varied responses that are generally more constructive toward devising a care plan.

Trust

Meeting a patient where they are in a non-judging, kind, and sensible manner, they are much more likely to open up and let the provider know what hurts and how they feel. I trusted my parents to clean my wounds after a fall off my bike and bandage me all up, pointing them to the areas in need of a little love. Similarly, I observed Dr. X’s patients explain pain “at a level eight” that keeps them up at night with a trust that she will take their words and turn them into a diagnosis and treatment that gives them relief.

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Although all patients are different, everyone expects individualized care from their doctor and are usually hoping to be healed. Time, creativity, and trust are crucial pillars that support how the provider meets their patient’s needs by putting their symptomatic puzzle together into a diagnosis.

When I was a little girl, I expected my parents to take my skinned knee and clean it up so that I was good as new. With Dr. X’s patients, their complicated aches and pains require more than just a Band-Aid, but she does have the power to offer them solace. I hope one day to be able to provide antidotes for my patients’ pain, and will strive to ask questions that allow me to do so.

Hannah Todd is a rising senior at Rice University, where she is majoring in Spanish and Policy Studies with a minor in Medical Humanities. Additionally, she is concurrently pursuing her Master's in Public Health at the University of Texas and ultimately plans to attend medical school, which would allow her to integrate personal, academic, and professional experience into care for and policy regarding children with medical complexity.

This week in shadowing, we saw a coronary artery bypass. Because we shadow anesthesiology, we get to see the doctors and nurses set up. It is like setting up a show, everything must be done a certain way in a certain order. From inserting the catheter to carefully draping him so only the necessary areas of his body were exposed (in his case, his entire torso and his legs) and even unwrapping the towels a certain way, everything must be done just so and this was all before he was even cut open. A nurse got us step stools to stand on so we could see. The surgeons walked in at the last minute, taking the drill and the blade and adjusting the lights above. Then, they got to work and we stood there mesmerized until we had to go back to class.

On the walk back to campus, I was in a daze. Upon reflecting on the experience, I found it to be simply bizarre to consider how the show and many others like it are continuing in operating rooms all over the world while we walk outside in the light of day. I couldn't stop thinking about the aftermath of the show. When I was in fourth grade, I was the wicked witch of the west for my class’ version of the Wizard of the Oz and the face paint dyed my face green for three days after. The show was over but I felt like it was still happening to me.

The man who underwent surgery today is going to wake up and hurt. But the surgeons had to break him to fix him. It was simply another day of work for these doctors. The anesthesiologists likely won’t see the patient again, but the surgeons, the ones who weren’t even there from start to finish, will be the ones to see him again when he wakes up. He will go home eventually and have a long, difficult recovery from this invasive surgery.

I admired the patient’s bravery and the surgeons’ dexterity. I was amazed at the anesthesiologists’ ability to compute complex body statistics against powerful medications. If I walked out in a daze and the man under the knife walks out in pain, how do the doctors walk out? Do they hurt, too, when they imagine what it feels like later to have the many sutures down your chest? Do they smile when they think about the years of life they added to his by just doing their job? In the operating room, they are all one show: surgeons, anesthesiologists, nurses, perfusionists, and even us undergraduate students. Outside, we are a fragmented entity that carries only our unique perspective of the show, combined with some input from their explanations.

As a doctor, I will need to learn how to make sense of the show every day. To care for children with medical complexity, children whose needs do not fit inside a single diagnosis or a single medication, I will need to work in teams to put on good shows. But at the end of the day, when I will go home hopefully to my family, I wonder where I will put it. I am an empathic, emotional, and sensitive human being, but I am also driven and dedicated. I believe that I will learn how to integrate what I see of and the role I play in the show into who I am, without losing myself in the process.

Hannah Todd is a rising senior at Rice University, where she is majoring in Spanish and Policy Studies with a minor in Medical Humanities. Additionally, she is concurrently pursuing her Master's in Public Health at the University of Texas and ultimately plans to attend medical school, which would allow her to integrate personal, academic, and professional experience into care for and policy regarding children with medical complexity.

An Interview with Kelsey Crowe, Ph.D., co-author of There Is No Good Card for This

By Val Walker

Dr. Kelsey Crowe is an author, speaker, and founder of Help Each Other Out, which offers Empathy Bootcamp workshops to give people tools for building relationships when it really counts. She earned her Ph.D. in social work at the University of California, Berkeley, and is a faculty member in the School of Social Work at California State University. Regular clients for her talks and workshops include UCSF and Stanford University, among several others. She is a cancer survivor and human survivor, each day finding meaning in connection and a purpose driven life. You can reach her at www.helpeachotherout.org

INTRODUCTION

by Val Walker

I first discovered Kelsey’s website, Help Each Other Out, two years ago while doing research on how to comfort people living with serious illness. I loved her honesty, compassion and gentle humor in her writings about how to reach out to people in distress. She was learning to live with breast cancer, creatively weaving her personal experience with her expertise in social work and social justice.  Drawing from her research, insights and stories, she developed an innovative training program to teach relational skills called Empathy Bootcamp. We chatted on the phone a few times about our common interest in the power of empathy and our writing projects. I found her to be warm, encouraging and generous, even though she had recently endured losing her home in a terrible fire. Fortunately, no one was hurt. Later in 2015, I was delighted to hear she was well on her way to landing a book deal, co-authoring a book with the viral Greeting Card designer of Empathy Cards, Emily McDowell. Kelsey and Emily’s book has just come out this January, called There is No Good Card for This: What to Say and Do When Life Is Scary, Awful and Unfair for People You Love.  It’s a wonderful resource with lively, vibrant graphics and illustrations, yet full of practical guidance for the delicate art of reaching out.

Q&A with KELSEY CROWE

Congratulations on your book! What experiences convinced you to write There is No Good Card for This?

Kelsey:  My experience with cancer was an invitation to write my book.

I began writing when my friend in Grad school got cancer, and I wanted to reach out, yet I was hesitant. I felt stuck. What should I say? How did I belong as a friend now? My experience of feeling so powerless as a friend led me to exploring the cause for my hesitancy to reach out to people who were seriously ill. By doing research and interviews, I gathered material about how to offer help for people in times of need.

While developing this book, I worked as a faculty member at California State University, teaching courses on public policy. I found research that convinced me how important it was to publish a guide for reaching out to people in crisis. I created a guide book, and I tried submitting this to publishers, but it didn’t take off at first. And then, I got diagnosed with breast cancer. That changed everything about how I wrote about helping each other, and I revised my book. I realized I needed to make my private life public. I began a website called Help Each Other Out where I could share my own experiences living with cancer as well as share about so many hard times like loss or divorce and others that affect many of us at one point or another. In addition to the Help Each Other Out website, I collaborated with several empathy experts to develop a training program for lay people and healthcare settings called Empathy Bootcamp, which gives people communication tools for being with others in their time of suffering. With a stronger platform developed for my book, I again worked to find a publisher.

Ideally, to enhance my book project, what I envisioned was having it illustrated. I had heard of Emily McDowell, and loved her Empathy Cards, which were going viral in 2014. As a woman who had been through cancer herself, Emily designed greeting cards for people coping with illness. I had wanted a comedic tone to illustrations for my book, and she seemed like the perfect person to approach, but I wasn’t quite sure how to connect with her. Then, one day, amazingly, I received a text from a friend at the New York Trade Show who was sitting right next to Emily! That friend connected with Emily in person, and introduced my book project. Soon I followed up and called her. I found out that she had also wanted to write a book about empathy. We talked, and she was pleased that I had already written and researched so much of the material—that the project was fully vetted and ready for her input. So, we created the book together with her illustrations, humor, and ideas.

Kelsey, what a remarkable story. It sounds like it was “meant to be” that you connected with Emily—fantastic timing, Kismet. You were the perfect duo to create this book!

If you could sum it up, what are the five main takeaways of your book, There is No Good Card for this?

Kelsey:  Here are five takeaways about reaching out to others:

1. Err on the side of doing something rather than doing nothing. If you are trying to decide whether to reach out or not, it’s better to offer whatever you can, rather than hold back.

2. You can manage how much you give. Comforting someone can be manageable for who you are, and where you are in life.

3. It’s much more helpful to listen than to find that elusive “useful” thing to say. Even if you’ve been ill with cancer, it’s important to respect and remember that each person’s experience is unique. Use your experience with illness as a good reason to listen to each other.

4. Small gestures make a big difference.

5. Give what you know how to give; and don’t wait to be asked to give.

A few years ago, you started an innovative training program, Empathy Bootcamp. Many of your participants are healthcare providers and caregivers. How do you teach empathy—or how do you teach a way to “operationalize empathy,” as you put it?

Kelsey:  First of all, empathy is about a way to live and not just about doing your job well. Empathy is a part of connecting and listening in all areas of our lives. In the past few years, empathy has become a popular buzz word. People are interested in learning empathy skills, especially in our digital age. In my Empathy Bootcamps, I focus much of the training on listening skills which are essential to putting empathy into action. I present three different categories of listening that each require different skills. It helps to distinguish empathic listening from the other kinds, as empathy is so important as a first step to establishing a relationship.

• Empathic Listening:  This is listening that builds trust. We start with empathic listening before we go to other interactions.

• Evaluative Listening: This is where we ask questions to offer up a judgment or assessment.

• Fact-finding Listening: This is when people ask a lot of questions because they need specific knowledge to be helpful, like when networking with someone to appropriate resources, or when being a patient advocate.

Empathic listening is the kind of listening we should do most of the time. The other forms of listening can come across as judgmental, or take the person off track from what they truly want to talk about--so use evaluative and fact-finding listening with careful discretion.

Yes, so we need to start with empathic listening to establish a relationship with the person before we move into problem-solving mode. I see how empathic listening lays the foundation of trust and understanding before we get to evaluative listening and fact-finding. Otherwise, we feel more like a commodity than a human being!

Kelsey: Right!

I’m so glad you are teaching this vital skill in your Empathy Bootcamp.

On a more personal note, I was wondering if you could share an experience of being comforted when you were first diagnosed with cancer? What were the gestures of comfort that touched you the most?

Kelsey:  It wasn’t so much the gesture itself, but the timing of that gesture. One evening I was so tired, felt so alone and shut down. I was pushing myself hard to make it to the end of that day. And suddenly that evening I received a delivery of flowers. It was so spontaneous and beautiful. Perfect timing.

Another time I told someone I was afraid I was going to die. She just hugged me and held me for a moment, and it helped me so much.

What you said convinces me that the little ways we reach out can be vital. One simple gesture just might just come in the nick of time to get us through hell.

Kelsey: Right. Our words or actions don’t have to be perfect--just reach out. On my worst days, it was such a relief to know someone cared.

So true, Kelsey. It’s been a pleasure talking with you today—I could talk with you all day! Thanks so much.

Kelsey: Thank you!

RESOURCES

Kelsey’s truly helpful site, and packed with resources too:  Help Each Other Out www.helpeachotherout.org

Emily McDowell’s Empathy Cards— uplifting and honest!  www.emilymcdowell.com

A wonderful read and fantastic guide for times we need to reach out:

There Is No Good Card for This: What to Say and Do When Life Is Scary, Awful and Unfair for People You Love.

Val Walker, MS, is the author of The Art of Comforting: What to Say and Do for People in Distress (Penguin/Random House, 2010). Formerly a rehabilitation counselor for 20 years, she speaks, teaches and writes on how to offer comfort in times of loss, illness, and major life transitions. Her next book, 400 Friends and No One to Call: Breaking Through Isolation and Building Community will be released in March 2020 by Central Recovery Press.

Keep up with Val at www.HearteningResources.com

By Leah Meyer

As a social worker at Massachusetts General Hospital in Boston, Sandy often works with young adults who receive potentially life-threatening diagnoses. “I think it’s absolutely jarring”, she reflects on the experience, though not solely in her capacity as a provider. Sandy was diagnosed, herself, with bilateral breast cancer when she was 35.

That first year included bilateral mastectomies, two different kinds of chemotherapy, and radiation. Then followed 15 years of hormonal therapy, so “technically”, she states, “I didn’t end treatment until a little more than a year ago.” Though cancer doesn’t affect her day to day existence anymore, it has certainly not disappeared from her life. She refers to it, wryly, as “the gift that keeps on giving.” She still sees the oncologist every year and waits anxiously for the results of her annual blood tests, and her history as a cancer survivor has forever shifted her self-perception and the way that others perceive of her.

When reflecting on her own treatment, Sandy thinks of the work she does with people in recovery from addiction, citing the value of the “one day at a time” philosophy prominent in 12-step treatment models. “I really took my cancer diagnosis and took life a day at a time…I think I was already living that way in part because of the work that I did,” she recalls, but cancer made this way of life even more pressing. Early in her diagnosis, soon after completing the most aggressive stage of her treatment, she remembers that she stopped saving in her 401K. “In part”, she says, “because you wonder, am I gonna be around for retirement?” She wanted to spend her money, to go on fun trips and do the things she had always dreamed of doing. Nowadays, with the fear of recurrence less of a constant in her mind, she has shifted her perspective slightly. “I have to make plans for tomorrow, but I have to live in today.”

And so it comes back around, her experience in return informing her work. “I think it’s actually helped me be a better social work provider because I know both sides...you know what it’s like.” She urges providers not to make assumptions about patients and their priorities, as she herself experienced when preparing for her own double mastectomy. Sandy, who is a lesbian and an accomplished athlete, recalls that one of her doctors made a comment on how the surgery would give her the “athletic body” that she had always wanted. “That was what I wanted? No,” she corrects, “I’d rather have my boobs.”

Some of the memorable lessons Sandy holds close required a different kind of strength from her usual persistence and fighter’s attitude. As an example, she remembers attempting to tackle a strenuous ropes course as part of an Outward Bound community building activity with her breast cancer support group while in the midst of treatment. Always one to try the hardest route, she fell her first time through, but she got up and tried again, this time taking a gentler approach. “Sometimes the easier way is the better way,” she realized, and she has carried this lesson forward.

She has found the humor in her experiences too, believing that “you can do stand-up comedy about some of the things” that cancer brings along, telling the story of a prosthetic breasts mishap on the golfing range. And there’s always new material. You have to keep laughing.

As for advice to others navigating similar health challenges, Sandy says “don’t let it stop you.” She acknowledges that you may have to “accommodate” the cancer, but you can (and must) keep going. “You can have aggressive cancer and aggressive treatment and still get better,” she reminds us. Also, she encourages people undergoing treatment to identify what kind of support is helpful and to seek it out. Personally, she finds the hushed, knowing prompts of “how ARE you?” annoying, but knows that some people like to be asked. “Whatever works for you, teach your friends,” she urges, “find community.” Finally, and perhaps most importantly, “try to celebrate each day.” Some days, Sandy remembers, “I was miserable, I was sick as a dog. But I still tried to put good things in each day no matter how crappy I felt, and that made it easier to get through.”

Dr. Annie Brewster, a Boston internist and founder of the Health Story Collaborative. Leah Meyer is an intern with Health Story Collaborative and a student at Yale College.

An interview with Dhruv Khullar,M.D., M.P.P.

By Val Walker

Introduction: Social Isolation is an Increasingly Important Topic

Could there be anything more frightening than going to a hospital alone for surgery, knowing that no one will be by your side when you wake up afterwards?  What if you have no one to turn to for help when you become seriously ill?

As a former rehabilitation case manager, I witnessed too many patients without social support. Too often I scrambled to contact any possible friends or relatives to help, and came up short with utterly no one available. I turned to social science research to better understand why people were so isolated. An alarming AARP study in 2012 on social isolation highlighted formidable barriers to social support:

1. Living alone (Nearly 40% of adults over 65 are living alone.)

2. Mobility or sensory impairment

3. Major life transitions/losses.

4. Socioeconomic status (low income, limited resources).

5. Location (rural, unsafe or inaccessible neighborhoods)

6. Being a caregiver for someone with a major impairment.

Moreover, the study revealed that full-time caregivers are mostly women who are often alone without support while struggling to take care of their own health care needs.

 The AARP study convinced me that being socially isolated is most often not a choice. Many societal and economic forces prevent us from being able to count on each other for support. Today we're more likely to find ourselves alone in a hospital regardless of how much or how little we've invested in our relationships. Indeed, in 2012, I found myself alone, stranded in a hospital bed after my hysterectomy because my friend failed to show up as planned. I had no one to take me home, and no one to check in on me during my first days after my surgery. I had made firm arrangements, but people just did not come through at the last minute. This shocking experience opened my eyes to how alone and stranded any of us can be.

Recently I read a New York Times article titled How Social Isolation is Killing Us by Dhruv Khullar, MD, who works at Massachusetts General Hospital. Dr. Khullar's compassionate view of his socially isolated patients sparked my interest in contacting him for an interview. Annie Brewster and I were thrilled when he responded to our invitation and agreed to talk with us.

Q&A with Dhruv Khular, M.D.

You wrote a powerful piece for the New York Times called How Social Isolation is Killing Us. As a doctor at Mass General Hospital, do you personally see an increase in socially isolated patients?

Dhruv Khullar:  All the time--every day, I see real life evidence of how isolated people are. And social isolation is increasing.

Lots of interesting statistics are out there about social isolation, but it’s my personal experience that motivated me to write more about this problem. I see elderly as well as younger patients coping with a lack of social support. We’re now living in a world of smaller families, and we often lack the extended support that larger families once provided. I see older patients living without their core group of support after many of their loved ones have passed away. And many younger people are dealing with the stigma of addiction or mental health issues, so their social support has been thinning out.

In our digital age, we can have 1000 friends on Facebook, but who is going to show up at the hospital for us?  Who is really there in our support system? Many connections we have through social media are only secondary supports, not the one or two people we can really count on in a crisis.

What can doctors do to help socially isolated patients?

Dhruv Khullar:  I think it’s in the doctor’s purview to ask about the social needs of our patients. Doctors have an important opportunity to screen for social isolation just by asking a couple of questions. We can identify isolated patients by asking simple, concrete questions such as “Who do you have to talk to about your surgery?” Or “Is there someone to take care of you when you go home?” Just two or three basic questions can make a difference. Also, practical, care-based questions are less likely to be threatening for a patient.  Instead of starting with psychological issues (“Are you feeling lonely?”) we can ask, “Is someone coming by to see you today?”

And once we have identified a patient who lacks social support, we can make a referral to a social worker, chaplain or hospital volunteer. They are a crucial part of the team. Healthcare has become so complex, it’s better to deliver care in a team-based setting, especially for a patient who has no one to rely on. Though we as doctors can play a vital role in identifying socially isolated patients, we need to alert our team so these patients get connected to the best services that meet their needs.

What you said makes so much sense. It does seem natural that a doctor would ask questions about who is caring for you—who is there for you. And further, I’m wondering this:  If your doctor is genuinely concerned that you don’t have anyone there for you, could these questions encourage you to talk openly about your lack of support?

Dhruv Khullar:  Yes, I believe asking simple, care-based questions can make it easier for patients to have an honest conversation about their need for more support. And this conversation could alleviate some of the shame and distress about being alone without support. Conversations, even brief talks with doctors, have a way of normalizing what has felt uniquely embarrassing or shameful. A patient might not feel so alone when their doctor emphasizes that social isolation is a common problem.

You got me thinking about the stigma in our society that makes it so difficult to speak up if we lack social support, and are truly alone. We don’t want to appear “needy.” What do we do if we really don’t have people to turn to when we must have surgery, or find ourselves seriously ill? Isn’t talking about being alone and needing help a hard conversation to have?

Dhruv Khullar: Conversations can start with a doctor or healthcare provider, even if we are too ashamed to discuss our lack of support with someone else. Once the conversation has started, patients may be able to face their need for support with less shame and more action. Once again, care-based, concrete questions can help us speak openly, and begin planning our care, including making referrals for the support that is needed.

We need to have more conversations about social isolation. The more candid the better. Hopefully we will find the courage to ask, “Will you be there for me?” And we will keep talking until we know who we can count on.

Besides making referrals to hospital social workers, chaplains or volunteers, is there a particular resource that you find helpful when you identify a socially isolated patient?

Dhruv Khullar:  I highly recommend the Health Leads program. This service is available in many hospitals in Massachusetts and other areas of the country. It can help connect patients to services they need, with links to community resources.  I use it very often.

When interacting with a patient who is alone and lacking support, what do you say or do to put them at ease?

Dhruv Khullar:  In the busyness of the hospital what sometimes gets lost is the human connection. One patient I remember was dying alone, without any loved ones around. At those times, it’s important just to listen. So I listened to whatever he wanted to talk about. Being present was as valuable as anything else I could do.

In my experience, even in just a few minutes, there are moments for deep connection. If we make the time, we can deeply and honestly communicate about what’s most important.

I’m really moved by your words. Thank you so very much for your generosity and insight, Dr. Khullar. And I’m so grateful that you’re encouraging people to talk more about this problem of social isolation. You have validated for me just how vital it is to have honest, realistic conversations when we need to ask others to help us.

Dhruv Khullar:  Thank you, it was a pleasure to talk with you today.

Resources

More about Dhruv Khullar

Health Leads Program

AARP Study on Isolation: Framework for Isolation in Adults over 50

Dhruv Khullar, M.D., M.P.P. is a resident physician at the Massachusetts General Hospital with interests in health policy, economics, and journalism. He is a contributor at the New York Times and writes regularly for both mainstream and academic publications, exploring evolving trends in medicine and health care. He recently worked at the ABC News Medical Unit, where he helped curate and communicate health information, and was previously at the White House Office of Management and Budget (OMB), focusing on Affordable Care Act implementation.

Khullar graduated with honors from Yale University (B.A. in Biology), and earned his medical degree (M.D.) at the Yale School of Medicine. He also received a Masters in Public Policy (M.P.P.) from the Harvard Kennedy School, where he was a fellow at the Center for Public Leadership. His work has appeared in the New England Journal of Medicine, Journal of the American Medical Association (JAMA), New York Times, Washington Post, Wall Street Journal, USA Today, The Atlantic, Slate, Politico, and Scientific American. He was recently recognized by LinkedIn as one of the Top 10 Healthcare Professionals Under 35.

Val Walker, MS, is the author of The Art of Comforting: What to Say and Do for People in Distress (Penguin/Random House, 2010). Formerly a rehabilitation counselor for 20 years, she speaks, teaches and writes on how to offer comfort in times of loss, illness, and major life transitions. Her next book, 400 Friends and No One to Call: Breaking Through Isolation and Building Community will be released in March 2020 by Central Recovery Press.

Keep up with Val at www.HearteningResources.com

This patient on my mind—let’s call him Sam—is smart. Sharp might actually be a better word. He knows what he should say to get out of here, and he probably even knows how to do it gradually enough so that we believe him. Sam knows our attending thinks he’s afraid of people caring about him, for instance, so he could play that up and pretend to let him in, fabricate a healthy exchange. These are the thoughts I have about Sam on the walk home, typing furiously away at my notes in my phone, with the hope that they’ll stay in the document and out of my head. I think about Sam, what he says, and what he actually means.

Sam has made multiple attempts to kill himself. He’s had a tough life, and I won’t attempt to explain the root of it all. He accepts his pain as constant, and he does so without drama. He fits the criteria of involuntary commitment because he’s at what’s considered an “unacceptably high risk” of hurting himself if he’s discharged, and he’s waiting for placement at a state hospital, where he’ll be for an undetermined amount of time. Sam keeps asking what the point is, saying that he’ll kill himself when he leaves, that he doesn’t envision a future for himself. Still, he repeats all the things he knows will keep him here. Why does he set himself up to be institutionalized, if he really wants to leave and end it? Does he want help, but is so incapable of asking for it, that he’ll say whatever will compel us to keep him here? How can we connect to him, if that’s the case?

At first glance, Sam looked to me like a lot of teenagers do, with this angst sort of hovering over him, sulking around with huge headphones on and refusing to show up to morning rounds. I’d catch him at groups, sitting with his hands glued in his pockets or folded against his chest. When I say Sam is smart, I mean I think Sam is probably a lot smarter than me. He’s cynical, with a sort of wisdom and a dry humor that ages him and makes him easy to relate to. Sam will laugh at you when he knows you’re trying to “doctor” him, an effective way to puncture and deflate your ballooned ego.

He brightened up a little while we played scrabble during group one afternoon, making me think for a moment, I don’t know, maybe there’s a chance for him. It’s frustrating, maddening even, to see a guy as sharp, as funny, as “normal” as he is, describe how painful life can be, and watch him carry that pain so complacently. But I can’t be mad at Sam for being in the kind of pain he’s in, I can’t even blame him for wanting to hurt himself. The fact is, I’ve only been here a few short weeks. Who am I to say he’s being selfish or pessimistic? Through his charm, in a way, Sam throws a wall up around himself, one you feel like you can’t tunnel through no matter how “real” you are with him. How can you really know him? How can you understand what he’s going through, and how can you know what to do to fix it?

I like to check off boxes, to feel like I’ve accomplished something. I like to feel as though I can walk out of a patient’s room having made a genuine attempt to contribute to their care. With Sam, it feels impossible to do that. At the end of the day, I am one of a batch of students with stiff, starchy white coats that cycles in and out of this locked unit for six weeks at a time, eager to “let these patients in,” but it’s likely that nothing will change for Sam and his painful reality in that time.

I pursued medical school with an idea. I even wrote about it in my application. I wrote that I wanted to become a doctor so I could meet people from all over, each with a story of their own, and that I could take a little piece of them with me and that all those pieces would add up to something meaningful. I think this became a part of my mindset growing up. My dad was in the military, and he traveled all over the world flying huge carrier airplanes. My siblings and I lived on a military base with my mom, and with each trip we waited for him to bring back all kinds of souvenirs and stories. I started to dream up all the places he went to, and the people who lived there. I kept a picture of a pyramid he took while he was in Egypt on my bedside table. I imagined people with lives so different from mine, and I convinced myself that as a doctor, I would find the most opportunities to encounter all these people, to get to know them and become a part of their stories while they became a part of mine.

When I met Sam, I began to wonder if all those pieces I’ll take with me would eventually show me how futile this job can feel. It started to feel like so many of the pieces we take are the ones full of pain and hopelessness, frustration and grief, and fear. My short experience with Sam puts a stark but simple realization back into view. I can’t fix his life, or hand him some profound new way of dealing with it. And it’s not about what feeling of accomplishment I can gain from working with him. All I can do is try my hardest to know where’s he coming from. I can educate myself on all the options he might have—medications, therapy, or anything else I can think of. I can help lay them all out for him and try to be prepared to answer any questions he might come up with. I can be honest with him, and I can listen. I can try my best to know what he cares about most, what he fears most.

Maybe that’s unsatisfying, but I think that’s sort of the point. You have to keep trying, whether or not the feeling of self-satisfaction ever comes.

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Jacqueline Hodges is a third year medical student at Tufts University School of Medicine. She is from Gainesville, Virginia and graduated from the University of Virginia, where she majored in biochemistry with a minor in global public health. Jacqueline is pursuing a dual degree in medicine and public health at Tufts and plans to do a residency in internal medicine. Outside of medicine, her interests include graphic design, hiking and traveling, and eating Korean and Southern food.

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, And!?” 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, And. 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 path 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, she will receive the treatment, she 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

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Andrew is a second year medical student at Harvard Medical School.

Storytelling seems like a strange topic for a daylong event in the middle of Hubweek, a weeklong celebration of “innovation at the intersection of science, art, and technology” in Boston. Innovation implies novelty or discovery, but storytelling is ageless: we are, after all, narrative creatures, hard-wired to tell stories.

The panel discussion during Storytelling and the Future of Medicine—the concluding session of Hubweek’s Medical Storytelling event—focused on defining why storytelling in medicine is natural as it is innovative. Featuring Jon Adler, PhD, Annie Brewster, MD, and Suzanne Koven, MD, and moderated by WBUR reporter Rachel Zimmerman, the panel reflected on medicine’s (re)turn to its narrative roots.

Despite our narrative nature, modern medical practice has minimized intimacy of caregiving and storytelling. To an extent, modern technology has dehumanized medicine and, in its turn, muffled the patient’s voice. Clockwork appointments leave little time for interpersonal exchange. Diagnostic technology lets the body speak for itself. As a result, patients feel dissatisfied and isolated, and caregivers burn out.

While medicine and storytelling are staged as opposites, their relationship is complementary and vital: health and healing are possible only at their intersection. Where the medical institution has established boundaries or binaries, Dr. Adler, Dr. Brewster, and Dr. Koven have all found remarkable overlap.

Dr. Adler, who studies narrative psychology and identity formation, spoke about the ways stories influence our sense of self. Storytelling puts both routine and extraordinary life events into context. Our life stories are mutable: we are constantly contextualizing and re-contextualizing our lives. Mental health is thus intimately tied to the way we frame our stories and make sense of our their high points and low points.

Dr. Brewster’s work as an internist and as founder of Health Story Collaborative are rooted in her interest in human connection. As a patient with Multiple Sclerosis and a medical provider deeply interested in the stories of her patients, Dr. Brewster understands the power of listening and being present. Illness and health challenges are isolating and frightening, and stories can provide moments of connection and relief in the face of such incoherence. The listener is as crucial as the teller precisely because the listener is able to accompany the teller, to be present when everything else seems to fall away.

For Dr. Koven, Writer in Residence at Massachusetts General Hospital, medicine and writing were not always two intertwined pursuits. Although she is a lifelong reader and writer, Dr. Koven was trained to separate her two passions. Her view was transformed as she recognized the resemblance between writing and healing and storytelling and clinical practice: stories were key to understanding and caring for patients. What’s more stories give caregivers the opportunity to make sense of their experiences in the rushed and fragmented circumstances of modern medicine.

For all three, to understand the achievements of modern medicine is to understand its shortcomings. Medical advances have come at the cost of human connection and storytelling, and patients and physicians alike have expressed their dissatisfaction at the structure of modern medicine.

Dr. Adler, Dr. Brewster, Dr. Koven, and Ms. Zimmerman refuse to settle for medicine’s isolation and thus turn to storytelling as the necessary solution. For each, their return to storytelling is as radical as it is natural.

I sit down in the chair opposite yours. It’s a lovely day outside: Spring peeks her head out along the esplanade, the sun warms our space beside your bed.

 You don’t know me. I am a stranger to you, but you let me stay anyway.

Our conversation starts slowly: small talk about the weather, hospital food. Then we shift; the gradual dance of vulnerability between strangers begins. You take a breath, and begin letting me into your life. I listen and learn. About your frustrations. About how long you have been here, in this hospital, beneath the fluorescent lights. About the lack of answers, the constant struggle for control. I nod and murmur.

Now you talk about your family. About feeling like a burden to them, being here, sick, dying. Now you talk about depression, the loneliness of death, how narrow the tunnel becomes when you’re heading towards its end. You talk now as a human being struggling to hold onto your humanity.

Gingerly, I reach across the sun-lit space. I hold your hand, but I say nothing. What is there to say in the face of human suffering? Where words fail, touch and silence speak.

--------

For the past two years I have been blessed to work as a palliative care volunteer in a hospital. My job is simple: to provide company to patients who are chronically ill or dying. Really, I just serve as a companion – to sit with, to talk to, to watch TV beside, to listen to music with. In this role, doing these simple things, I have received one of the greatest gifts of my life: through others’ stories of suffering and joy, I know the beauty of a shared humanity.

 If healthcare is defined as curing or fixing, then I am essentially helpless as a volunteer – I have no skills, knowledge, or experience that can cure or fix these people. However, I have come to learn through time spent with my patients that sometimes it is not knowledge, tools, or skills that are required for healing. Rather, healing can be wrought by each of us simply as we are, as people. Sometimes all we need to provide a moment of healing for one another lies in the ways in which we are able to hold, sit, and simply be in each other’s company.

From my patients, I’ve learned something both humbling and empowering: in a world where we are constantly trying to fix, sometimes it’s okay to just sit together and be broken in our own separate ways. It is through the cracks within us that the healing enters.

Claire Stauffer is a recent graduate of Boston College, where she majored in Biology and English. She serves as an EMT-B and palliative care volunteer in the Boston area. Her first narrative piece “Weight” was featured in the Boston College Medical Humanities Journal and on the HSC College Voices blog.

Lani Peterson, Psy.D.

Director, City Mission's Public Voice

By Val Walker

Everywhere we look, it seems too many people insist on having the last word—on TV (the election campaigns, the pundits and experts), on Facebook, at our office meetings, at our kitchen tables. We all know how it feels to be trying to tell our story, but some “listeners” must have the last word. Those last-word conversationalists take our message and turn it into theirs. They usurp the meaning of our message before we can even finish our story. We not only feel unheard and unvalued, but downright robbed. We may have cynically concluded we’re living in a last-word culture, so we’re forced to be last-word conversationalists ourselves to survive these days.

This last-word problem has been bugging me, particularly this election year. But thankfully, contributing to Health Story Collaborative has become a way to proclaim the sanctity of telling our stories and having fruitful conversations-- free from last-word conversationalists. Through Health Story Collaborative, I’m fired up about the transformative connection between storyteller and story listener when we go beyond having the last word.

To add a fresh perspective on the topic of going beyond the last word, we’ve invited Lani Peterson to weigh in on how sharing each other’s stories—the telling and the listening-- creates meaning for our lives. We are pleased she could join us.

Lani is a psychologist, professional storyteller and coach who specializes in the use of story as a healing art and powerful medium for personal growth, connection and change. Drawing on her broad and varied experience with individuals, teams and organizations in the profit and nonprofit worlds, Lani brings a unique combination of personal stories, knowledge of the theory behind stories, and vast experience helping people use stories to transform their understanding of themselves and others.

Lani is currently the director of City Mission’s Public Voice, currently working with Boston’s homeless to tell their stories for healing and social change.

Lani's professional training includes a Doctorate in Psychology from William James University, and a Masters in Counseling Psychology from Lesley University. She is a member of the National Speakers Association, the National Storytelling Network, and serves on the Executive Committee of the Healing Story Alliance, which she recently chaired for five years.

Perched on a green velvet sofa in Lani's sunny living room in Cambridge, I enjoyed our lively, two-hour conversation chock-full of aha!-moments and astute observations. My mug of coffee was left untouched on her table, as her stories and insights so intrigued me.

I’d like to share the highlights of the experiences that have transformed Lani’s life as well as the lives of the many people she has touched through her work.  To do justice to her wisdom, I’m presenting her “answers” to my questions as inspired stories in their own right.

When did you know in your bones that your calling was storytelling?

Lani: Living in Philadelphia in the 90s, I was a psychologist as well as the mother of four young children under the age of six, two of whom were adopted. Trying to balance both my career and family, I worked for a time as a community outreach worker presenting talks on parenting to a wide variety of groups.  Although I had completed my doctorate in psychology and was licensed to practice therapy in three states, I had put my private practice on hold. I had worked with clients for nearly ten years, but still wrestled with doubts about whether I had enough knowledge, training or skill to truly help another heal.  Self-doubt caused me to relentlessly pursue more reading, training and learning about what practices led to healing, but ironically, the more I learned, the more I doubted my own skill as a healer. Teaching (while simultaneously learning!) parenting skills seemed like the perfect safe road to follow while figuring out what I wanted to do when both my children and I grew up.

One evening, I was invited to speak to an audience of 300 parents on the topic, “Children and Self-Esteem.” So there I was in front of this huge room full of people, telling parents about how to foster self-esteem in their children, all the while not clear in my own gut that I had the right stuff myself.

I plowed through my prepared material anyway, and as I concluded my lecture, I invited the audience to ask questions. After many practical questions about child discipline, one woman bravely spoke up and shared some of her story before asking a question. She had come to the US from India after her husband died, hoping to give her son a better life. But sadly, her son was being bullied at school, and she felt helpless to do anything about this. “Do I stay here, or should I go back to India?” she implored. It seemed the whole room felt her confusion and despair.

I knew I had to say something, offer something to her, but none of the theory or literature I had on the subject felt relevant. Somehow, a story came to mind from a much younger time in my own life. Before I started, I let her know, “I don’t know yet why I need to tell you this story, so do with it what you will.” I told her about a time when I was a student at Smith College, and  asked to fill in at the last minute to do an interview with the famous poet, Maya Angelou. My roommate, who was scheduled to do the interview, had come down with the flu and asked me to step in in her place. She handed me a list of questions to ask and sent me off. After hearing Maya Angelou speak and share her poetry, all the questions I had with me felt meaningless. So when I finally sat down with Maya Angelou after her performance to interview her, I spoke instead about my own feelings of being lost and confused, seeking out whatever comfort and wisdom she might offer me. Maya took my hand, and said, “Let me tell you right now, dear, there isn’t one right path. It’s all about how you walk on the path you’re on. So, if you fall into a hole, let yourself grieve and cry, and when you climb back out—and you will—you can find your way to dance again.”

As I told my own story of being lost and confused to this woman standing alone in the audience, it felt like we were in a trance, in a deep, one-to-one connection, although the room was filled with 300 people. When finished speaking, I simply uttered, “That’s all I know.”  The woman, appearing moved by Maya Angelou’s message, simply said, “Thank you. It is enough.” I watched as the woman left the auditorium that night surrounded by a group of other audience members who appeared to be reaching out to her. I realized that something profound had happened. I realized the act of telling one’s story as well as the act of listening to stories was indeed more than enough to support one on the healing journey. That moment of profound connection between teller and listener provided a revelation for me both professionally and personally: Through stories we can courageously share our vulnerabilities, understand the truth of our experiences, and create new meanings for those experiences. It was a new way of understanding how insight, understanding, and healing could occur.

For me, it was also the moment when I discovered my calling.

What a moment that was, Lani, a moment of truth if there ever was one. And now, as the person interviewing you, your story about interviewing Maya Angelou certainly speaks to me. There are so many layers to any story, and each time we share it with a different person or group, we find a different meaning or takeaway from it. This leads me to ask you, on a deeper level, what happens between the storyteller and the story listener?

Lani:  First of all, we’re all story listeners, even when we hear our own stories. When we speak out loud, our words enter a different part of our brain, the auditory part of our brain, the part of our brain that listens, so we are hearing ourselves in a very different way than when we think only to ourselves. We become a listener to our own story, enabling us to take a different perspective, gain insight and perhaps discover new meaning in what we have said.

That’s so true, Lani. Maybe that’s why I talk to myself so much when I’m alone! And as a writer, I can see why reading my stuff out loud helps me make sense out of all those words.

Lani:  Yes, we can get perspective on the stories we are creating in our heads when we say them out loud, and even more so when we hear other people’s reactions to them. People can get stuck in the stories that they keep locked inside their heads, plus they convince themselves that there is only one particular meaning to their story. Life is far too complex for anyone’s story to be held hostage to only one meaning.

And because we’re all both storytellers and story listeners, we have the potential and ability to free each other from being limited to any one meaning, especially if it is a meaning that brings us pain, limits our potential or keeps us distant from those we love.

Furthermore, when we are able to find new meanings in our stories, we are using additional neural pathways in our brains. In short, by finding alternative meanings in our stories, we can continuously revise and increase our neural paths. Ultimately, healing comes from expanding our relationships to our stories, seeing how our own judgment and self-concept contained in stuck stories might have been holding us back. 

You’ve worked with so many groups with various socio-economic and cultural differences, and with marginalized people—all with extremely different judgments, self-concepts, beliefs and values. You're enormously accomplished with bringing people together through storytelling and story listening, especially to be advocates for social justice.

Lani: I worked with City Mission Boston to create The Public Voice Project. Although the program was originally created to help recently released prisoners learn public speaking skills to address issues related to reforming the CORI Laws, I found that examining and telling their personal stories led to huge change and growth amongst the participants. I watched how people could be transformed by building trust over the weeks and opening to explore their more difficult stories. They wrestled with shame and self-blame to gain insight into how their past story came into being, and through that process find self-compassion and compassion for each other. They moved from seeing themselves as either victims or perpetrators, to now being the hero of their story. It was incredibly empowering and healing to own their stories and take responsibility for how they wanted to live the next chapter of their lives.

Since 2004, Public Voice storytelling programs have evolved to train both men and women who have been previously incarcerated, youth at risk, homeless or victims of social inequity. Our storytelling graduates have gone on to speak to lawyers, congressman, churches and schools. The speakers are able to see firsthand how their stories can make a difference in the lives of others, or bring about change within the community through putting a human face on the issues, raising awareness and motivation to get involved in social change efforts.

 Some questions we explore in our storytelling groups include:

• Who are you in your story?

• What have been your challenges and obstacles? Who has helped you? What are the inner resources, skills and strengths  you have relied on to get you through the hard times?

• How does your story guide you in your life?  Does your current rendition of your story sustain you or constrain you as you try to move forward in your life?

•  Who needs to hear your story?

• How can you help your audience both hear and understand your story?

• What changes (both internally as well as for others) would you like to see happen as a result of telling your story?

• By reaching out and sharing stories with the wider community, not only do participants see that they matter, but they begin to trust that they matter no matter what.

You’ve also worked with healthcare facilities conducting storytelling workshops for providers, patients and families.

Lani: I have brought my story work into several hospital settings, including Dana Farber Cancer Institute, Boston Medical Center, The Greater Baltimore Medical Center and most recently, the Roswell Park Cancer Institute in Buffalo, NY. At the Roswell Park Cancer Institute, I facilitated a story-listening workshop with chaplains, delivered a lunch time lecture on story listening for their medical personnel, as well as worked with the staff who run their Life Recorded Program which had been initially developed by Story Corp. The focus of the Life Recorded Program is to elicit and capture the stories that help patients remember who they are beyond their illness, beyond their identity as a sick person or as a sick person’s caregiver. Additionally, Roswell Park supported a healing retreat for cancer survivors and their caregivers to explore their healing journey towards wellness. Over a hundred patients gathered together for a full day of story sharing. Using Joseph Campbell’s hero’s journey model, they shared their stories of:

• Who was I before I became sick?

• What have been some of the hardest moments and how did I get through them?

• Who helped me that I didn’t expect?

• Who did I think would help, but they couldn’t be there for me?

• What have been the external resources I have relied upon to get me through?

• What have been the internal resources I have discovered about myself through coping with the hardships on this journey?

• Who do I want to thank?

• Who do I need to forgive?

• Who do I need to ask forgiveness from?

• What I am grateful for?

Within my workshops I encourage participants to look at their stories from all different angles, not trying to change their story, but to expand it such that it can hold more of themselves. Patient stories are about so much more than coping with illness; they are about their identity and sense of belonging in the world. Doctors and nurses are dedicated to curing disease, but healing can happen without a cure. Healing is often connected to the stories we (and others) tell about ourselves. The wonderful thing is that we have so much control over that. Whether someone is challenged by an illness, recovering from a trauma, or coping with a loss, the stories we tell about our experiences and the meaning we make of it can be the beginning of reclaiming our lives.

Have you also worked with doctors?

Lani: At UMass Medical Center in Worcester, I consulted with a group of physicians and researchers studying the impact of storytelling on health equity disparity (CHEIR). They were interested in exploring the ways that hearing stories of positive medical intervention could increase the trust in minority communities to engage medical help or follow through on medical recommendations.  Although the researchers understood that story could be an important factor in gaining patient trust, they were in need of support to help successful patients convey their stories in a way that could captivate and inspire others. So, essentially I was hired as a story coach to teach storytelling skills to patients as well as to the physicians and researchers. These stories have since been captured on video and disseminated on radio and television throughout the community. New patients are now being screened to see if the stories they heard had an impact on their decision to pursue or follow through on medical treatment.

Patient’s challenges, seen through their stories of their cultural and social predicaments, not only encouraged other people struggling with symptoms to seek out medical help, but also helped doctors to communicate with their patients with more patience and empathy. One of the things that I am most excited about, is that researchers are also beginning to explore the impact of storytelling on the storyteller.  What does it mean to share your story with another, knowing that it could perhaps ease their medical challenge, if not even save their life? How does that change how one feels about themselves as the storyteller? Sharing stories is not a one-way process. Both the teller and listener can benefit from the interaction.

Something that’s been on my mind: How does living in the digital age affect how often or how deeply we share our stories? How much do you think our digital world is affecting us?

Lani: I remember that even when I was a little girl sitting at the dinner table back in the 1960s, the TV was on with the evening news blaring across the room. Media and its ability to steal attention from relationships is not something new. Over the past several decades, we’ve all gradually grown accustomed to letting media direct our lives, leading to distraction, multi-tasking, short attention spans.

There are well-documented accounts of the rise of addiction in the indigenous populations in Alaska during the 60s and 70s when family storytelling traditions were replaced by television. As children no longer sat through long evenings listening to the stories of their elders, certain life lessons and values were no longer handed down. The effects were not felt for years, but  researchers now make connections between the decline in family storytelling and loss of family cohesion. But fortunately for all of us, storytelling has been making a comeback.  Not only for children, but people of all ages are being encouraged to tell their stories as well as listen to the stories of others. Story Corps and the Moth are good examples of how storytelling is re-entering our culture, leading people to take a deeper interest in listening to each other’s stories as opposed to interacting with a device.

One of the problems is that social media tends to lack the depth of story that nurtures us. Facebook certainly seduces us with story, but these stories are often void of depth, values, or learning, causing them to lack the nourishment that stories can give us. It’s sort of like junk food—an addictive junk story to fill us for a while, but we feel hungry again very soon.

Yes, Lani, I’m glad you said that a story needs depth, needs the time for the whole story to unfold. I admit it’s the depth that I miss so much in my conversations these days with friends and loved ones. I just wish we had more time for sharing our stories, and finding more meaning from them—together.

Lani: I hope you can advocate for making the time to share stories more deeply.

I certainly will. In my work with elders as an activities specialist at assisted living communities, I’ll be thinking about you when I lead discussion groups and storytelling sessions. You’ve already motivated me to be a better story listener—a deeper story listener. Thanks so much for your time, your generosity, and your wisdom.

Afterthoughts: Lani’s Beautiful Takeaways

Four of Lani’s quotes were so helpful and wise that I couldn’t resist doing a quick recap of her stand-outs. These takeaways are worth savoring on their own:

“Life is far too complex for anyone’s story to be held hostage to only one meaning.”

“Healing comes from expanding our stories so we can find more than one meaning in them. We can see how our own judgment and self-concept has locked us into one meaning that might be holding us back.”

“By reaching out to the wider community, not only do we see that we matter, but we begin to trust that we matter no matter what.”

“When we own our story, when we are accountable for it, we don’t need to isolate ourselves with it, but we can go out into the world with it. This story has helped me, and it can help you. It’s not a one-way process to tell our stories.”

Resources

Lani Peterson's site

Boston City Mission

CHEIR at UMass Medical Center in Worcester

Val Walker, MS, is the author of The Art of Comforting: What to Say and Do for People in Distress (Penguin/Random House, 2010). Formerly a rehabilitation counselor for 20 years, she speaks, teaches and writes on how to offer comfort in times of loss, illness, and major life transitions. Her next book, 400 Friends and No One to Call: Breaking Through Isolation and Building Community will be released in March 2020 by Central Recovery Press.

Keep up with Val at www.HearteningResources.com

This past June, Dr. Annie Brewster and visual artist Nancy Marks started offering workshops to individuals who have recently lost a loved one to opioid overdose. These workshops encourage participants to use art and storytelling to honor those who have died by drug overdose. 

After completing three workshops, Brewster and Marks will curate a community art exhibition and opening to share art and audio pieces with the public, and to bring together all participants. The hope is that this community event will increase public awareness and reduce the isolation and shame that can accompany the loss of a loved one to drug overdose.

The next workshop will be held in September. If you want to learn more, please contact Annie Brewster or Nancy Marks.

Recently, Dr. Annie Brewster shared more about the project on WBUR's CommonHealth. 

You can check out the CommonHealth post here. 

Some of the most impactful people encountered in our recovery journeys are our treatment providers. They provide invaluable education, compassion, faith in our capacity to heal, accountability, and the best of them help us relearn how to trust.

I met Kim Wyman, the dietician at Monte Nido Vista, my first night of residential treatment. It was a Monday, the day every week when those furthest along in recovery prepare dinner for the whole house. To bless the beautiful meal they prepared and to cultivate a positive mindset before eating what for some of us was quite a challenge, Kim sang “Amazing Grace.” Her heavenly voice, glowing presence, and palpable joy for sharing this food in community brought me to tears.

Though we only worked together for ten weeks, Kim’s wisdom resounds in my head to this day, guiding me to stick to recovery’s course and reminding me of the healthy ways to meet my needs. In this podcast, she shares some of her perspectives on the process of healing from an eating disorder.

How we feed ourselves is an expression of how we feel about ourselves. Sometimes the most effective way to change how we feel about ourselves is to change how we feed ourselves. Kim considers Recovery to be a process of Recovering Self. She elucidates the different parts of Self that need to be actively, compassionately cared for, and explains how one must separate physical needs from emotional needs (to be seen, heard, witnessed, and acknowledged) in order to meet them all appropriately.

Activating sensory experience is one of Kim’s hallmark methods for recovery. She encourages people to get out of their heads and into their bodies by seeking pleasure, enjoying nature, and cultivating a loving relationship with food through the creative act of cooking, truly tasting food, and eating with others.

Kim explains the 3 tenets of recovery – never weigh yourself, journal, and reach out to others – and also offers advice about how to find the best dietician for you.

In addition to being a Registered Dietician, Kim holds a Master’s in Public Health. She has been working primarily with men and women who struggle with eating disorders since 1997.

Annie Robinson, a Health Story Collaborative team member and a recent graduate of Columbia University's Narrative Medicine program, curates the podcast "Inside Stories", a forum for medical students to share their stories of medical training. Read about this project here: 

On a warm June afternoon, clustered around picnic tables, cradled in the mountains of the Berkshires in western Massachusetts, eight medical students from around the world began telling one another their stories. They were among approximately 40 students invited to participate in a weeklong intensive program run by AMSA for medical students interested in integrative medicine called LEAPS. As a graduate student of Narrative Medicine at Columbia University, I was asked to help facilitate the program.

Over iced tea and dark chocolate, they spoke of heartbreak and grief and divorce, of exam-stress and isolation and fear. They also shared brilliant visions of innovative approaches to medical care, and their aspirations to foster intimate relationships with their fellow medical students, their families and friends, and their patients. I listened with rapt attention as they described how, from personal struggles, conviction and vision were born for their careers as caregivers. I shivered, on that muggy summer day, knowing I was in the presence of my tribe. 

I was raised to revere the power of storytelling, which has been a critical component in how I have navigated my way through the world. It proved particularly useful when I entered the healthcare system in my early adolescence. I have spent over half of my life now as a patient, grappling with illnesses and issues of embodiment. In large part, it has been by speaking my struggles aloud that I have been able to heal. Telling my stories has allowed me to harness the power of the dark times to create connections and attain insight. 

As I sat there at LEAPS, witnessing medical students experiencing what I myself had experienced time and again–that relationships and wisdom come from baring one’s soul – I began to envision a way to enable more students to engage in this powerful narrative process. The seeds for my oral narratives podcast project Inside Stories: Medical Student Experiences were planted. I wanted to hear more student stories about the path to medicine, about struggles and triumphs, roadblocks and dreams. Through sharing over the course of that week, the students gained clarity and catharsis, and many remain in touch to this day. 

Inside Stories emerged from those conversations with LEAPS students. The idea was to develop a podcast platform that would enable medical students anywhere to both voice and listen to stories about medical student experience. Inside Stories’ mission is “to provide a means of personal healing, self-realization and empowerment through the sharing and receiving of personal stories, as well as to cultivate community among students in the often isolating medical school environment.” The interview process involves recording stories from current medical students, remotely or in-person. Recruitment has been done via word-of-mouth, social media platforms, and at medical humanities conferences. Student participants comprise a diverse demographic of men and women from all four years of medical school, of various races and nationalities, interested in medical fields ranging from OB/GYN to pediatrics to gastroenterology and many more. 

The topics addressed are vast. Hannah spoke about the challenges of navigating in medical school while being a mother. Petra reflected on how her spiritual path informs the challenges being a medical student. Katie discussed the encouragement she gained from finding her mentor. Leah shared how writing poetry aided her personal healing. Samar described how self-care practices helped her get through school. Angie talked about how her Syrian heritage drove her motivation to become a physician. Hieu shared his experiences as a community health worker in Uganda propelled his motivation to combat structural violence. Carlton described his motivation to pursue medicine in the South: to offer the African-American community a provider with whom they can identify.

To date, over 40 students have participated in the project. One participant reflected: “At first I was intimidated at the prospect of sharing my deepest feelings to a public audience, especially because I had never verbalized these feelings and in general I am a very private person. Ultimately, I'm glad I committed myself to this project and am proud to have my message out in the open.” Another described how sharing felt validating: “It made it seem real - everything that I had been through.”

I hope that by listening to the accounts of the courageous, insightful students whose stories constitute this project, others will follow suit and be inspired to share the personal stories at the heart of their journeys through the world of medicine.

If you or someone you know might be interested in telling their story about their experience in medical school, or if you have further questions about Inside Stories, please contact Annie and visit their website and on Twitter @Inside_Stories.

Originally published on the blog "The Doctor is Listening" on September 14, 2014

Liz was diagnosed with Ovarian Cancer in 2011, just a few short months after her mother was diagnosed with the same disease. As an oncology social worker herself, she had a lot of experience with cancer, as a health care provider. Then, suddenly, she found herself in the uncomfortable role of "patient" and was forced to re-evaluate much of what she thought she knew. Liz shares her story with insight, humor and honesty. Here, you can watch excerpts from her June 2014 Healing Story Session.

Dr. Rita Charon, founder of Narrative Medicine, cares deeply about how patients’ stories are told. She believes there are two ways healthcare providers can tell the stories of their patients: with data derived from test results and quantifiable statistics, or with deep understanding of that patient’s experience, derived from generous listening.

Rita observes: “I’m sure many patients have the experience of that first kind of storytelling: ‘They don’t care who I am, they just care what my A1C is.’ But then in the very same place, there’s this other kind, where (a healthcare provider) is not only able to but is rewarded for really coming to understand how to listen to the deeply personal, affective, emotional aspects of not just living, being sick, and of dying.”

But how can providers incorporate this second kind of storytelling into their daily medical practices? Ronald Schleifer and Jerry B. Vannatta, co-authors of The Chief Concern of Medicine: The Integration of the Medical Humanities and Narrative Knowledge into Medical Practices, offer accessible suggestions for clinicians who want to prioritize their patient’s story in their caregiving.

Changes in how providers offer and patients receive care can start with simple but significant technical aspects of storytelling in healthcare: how trainees are taught to write. Usually, hospital notes begin with a patient’s “Chief Complaint”: “My asthma is back” or “I have chest pain” or “I fell and hurt my back.” Schleifer and Vannatta recommend in their book that in addition to a “Chief Complaint”, providers also ask for their patient’s “Chief Concern” - which is markedly different.

This year, for the first time, Rita asked the four medical students she mentored to do just that, and was pleased to see that they took the task of registering a chief concern very seriously. Even at this quite technical level, it is clear “how much it matters how these young kids - 2nd year medical students - are learning how to tell stories.”

The contrasts evident between the complaint and the concern in the examples Rita’s students recorded struck me as nothing short of poetic:

Chief complaint: “Belly pain.”
Chief concern: “I hope my cancer’s not back.” 

Chief complaint: “Relapse of pancreatic cancer.”
Chief concern: “Is it now that I’m going to die?

Chief complaint: “Shortness of breath.”
Chief concern: “Suffocation.”

Chief complaint: “Shortness of breath.”
Chief concern: “I really don’t want to be in the hospital again.”

Chief complaint: “Transfer from the coronary care unit.”
Chief concern: “I don’t understand what has happened to me.”

Chief complaint: “I was not making any sense and was confused.”
Chief concern: “I want to take care of my grandchildren.”

It deeply impresses me how easy yet meaningful it is to inquire about a patient’s chief concern. It opens up the possibility of a different degree of trust between patient and provider. But just what should students do when they hear their patient’s chief concern?

“Tune in!” Rita declared. “Notice the lived experiences and implications of an illness serious enough to get put in the hospital. And because we (ask about the chief concern) right up at the front, (providers) are able - maybe - to pay attention to the deep existential fears.”

Rita feels real optimism about this technique: “It’s not like the doctors don’t want to do this, it’s just that they’ve never been asked to...” or shown how, until now, through narrative medicine training.

Narrative medicine cultivates the development of foresight, the ability to tune in and pay attention. As evident in Rita’s stories about generous listening and asking patients about their chief concern, it’s sometimes the seemingly small gestures that can make all the difference in how clinicians hear, and care, and practice being with.

But it’s important to remember that caring for patients’ stories isn’t easy. Rita acknowledged the challenge in what she asks her medical students to do: “It’s not just: ‘Oh yeah, don’t forget, get the patient’s story…’” It’s about more than just “getting the story”. It’s about “rolling up your sleeves, and getting yourself in a position of confronting the situation’ the patient lives.” Even Rita admits: “There are a lot of things I learn that I wish I didn’t know.”

I imagine how overwhelmed caregivers must feel when confronting the unsanitized, scary, disheartening reality their patients live. But increasingly, providers are discovering that to bear witness to a patient’s whole story, they can better understand and thereby meet their patient’s needs.

Rita says, when it comes down to it, “You don’t need somebody who’s going to put their hands in front of their face and say ‘Don’t tell me about that...’ You don’t need that. You need someone who will appreciate the magnitude of what you’re talking about. And who can then maybe do something on your behalf.”

We all need our magnitudes to be acknowledged and honored, because we are not only conglomerations of numerical data, we are people with complicated, unique, and profound stories.

More about Rita:

Rita Charon, MD, PhD, is Professor of Clinical Medicine and Executive Director of the Program in Narrative Medicine at the Columbia University College of Physicians and Surgeons. She directs the Humanities and Medicine curriculum for P&S and teaches literature, narrative ethics, and medical interviewing. She also has a primary care practice at Presbyterian Hospital.

TEDxAtlanta Talk: https://www.youtube.com/watch?v=24kHX2HtU3o

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.

Dr. Rita Charon, founder of Narrative Medicine, is concerned with how medical students are being taught to write about their patients. “Patients have ideas about how their stories get boiled down into abbreviations and numbers and acronyms. A 78-year-old grandmother becomes a ‘diabetic with an A1C of 11.2.’”

As an internist who also mentors medical students at the Columbia College of Physicians and Surgeons, Rita coined the term “narrative medicine” and launched the Program in Narrative Medicine at Columbia University in 2000. Her goal is to help healthcare professionals improve communication and collaboration with their patients, and to bridge the gap between the humanities and the sciences. At the heart of her mission lies the belief that effective healthcare “requires the ability to recognize, absorb, interpret, be moved by, and act on the stories of illness.” Her definitive book Narrative Medicine: Honoring the Stories of Illness has changed the course of uncountable lives, and steers the narrative medicine movement.

I first encountered Rita at my orientation to the Narrative Medicine master’s program in 2011. She emanated a quiet tenderness as she stepped gently up to the microphone - but soon into her speech she burst forth with impassioned exclamations, rallying the troop of incoming students to her cause to bring together the worlds of healthcare and literary scholarship. As deeply attentive as she is demonstrably passionate, Rita never fails to make an impression. Stories organically unfold when she speaks, on any subject.

When we conversed recently, she told me a story that illustrated exactly what narrative medicine is trying to do. This past spring, four second-year medical students were placed under Rita’s tutelage. She met with them twice a week for over two hours at a time, observed them interviewing patients and doing physical exams, and carefully read what they wrote about their patients. At the beginning of the semester, they shared with her the first formal written notes for the medical charts of a patient of theirs. One student submitted a summary of a young male patient with HIV, Hepatitis C, and a life-threatening combination of diseases on the AIDS ward - but how he wrote it dismayed Rita:

“The first five lines of what he wrote was written almost entirely in abbreviation, with a lot of numbers and percentages. There were barely any words. And this was the opening introduction for anyone who was going to take part in the care of this gentleman, this was the introduction to this gentleman’s situation! I got really upset, because the student was being taught - and expected - to write in this telegraphic, reduced, non-linguistic way.”

Rita chuckled as she shared with me the “slightly snarky” comment she offered him in response: “It’s a good idea to get in the habit of introducing a description of a patient with some English.” To her surprise and delight, he really took her suggestion to heart.

Several days after offering that comment to the student, she observed him performing a physical exam and interview with a new patient. The patient was a young man with a serious infection and a new cancer, who had previously had initial success with an earlier cancer treatment. But now, he and all the doctors knew that there was nothing more than palliative care to offer him at this point: the cancer could not be reversed or treated.

Rita recounted: “So I’m just sitting, watching. The student invited the patient to tell why he had come to the hospital, what the situation was, and then the patient, very honestly, graphically, without holding back, told the student and me what he was going through in his dying.”

“He told us about the life he had lived, which had caused his illness. He told us about his heroin use. He told us about his alcoholism. He told us about his promiscuity. He told us about his violent past. He told us about his regrets, for some of the ways he had lived part of his life. He was very, very frank. He said, ‘At this point, as I face my dying, I want to do as much as I can to give back.’

“And this student was so humble, and respectful. The only thing he did as a listener was to remain in the conversation as an active participant. He didn’t just sit by passively and let the patient tell whatever he wanted. He was engaged as a listener - he knew how to signal that he was actively listening. Every now and then he would kind of ask a question, to signal that he was actively listening. It was extraordinary. And this was the student who had written those technospeak sentences two days before!”

When Rita and the student spoke afterwards, it became apparent that the significance of the encounter really resonated with him. “He realized exactly what that patient had given up. He was as moved as was I to hear this open, honest, generous ‘Here’s what it’s like to be dying...’ Isn’t that something?” Rita and her student were both left in awe of the “remarkable, generous donation” the patient offered by entrusting them with his story.

As the student sat at the bedside of the 45-year-old dying with a belly full of cancer, receiving the man’s stories, he gave the patient the opportunity to give something back. At the end of the visit, the dying man said: “I appreciate the opportunity to impart some of what I’ve learned.” Rita witnessed how being given the chance to tell his stories “added some dignity to his life. He was able to give this young, inexperienced medical student some idea of what it’s like to be dying.”

Sometimes the seemingly subtle acts of witnessing and sharing story are the most powerful treatments, for both the patient and the physician.

More about Rita Charon:

Rita Charon, MD, PhD, is Professor of Clinical Medicine and Executive Director of the Program in Narrative Medicine at the Columbia University College of Physicians and Surgeons. She directs the Humanities and Medicine curriculum for P&S and teaches literature, narrative ethics, and medical interviewing. She also has a primary care practice at Presbyterian Hospital.

TEDxAtlanta Talk: https://www.youtube.com/watch?v=24kHX2HtU3o

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. 

In April 2014 Dr. Annie Brewster, Founder and Executive Director of Health Story Collaborative attended the TEDx Fenway event "GRIT" which sought to honor individuals who had the GRIT to persevere and realize their aspirations. 

Dr. Brewster presented her own TEDx talk, "Harnessing The Healing Power of Stories" which appeals to medical professionals to take time to truly listen to their patients and acknowledge the most essential element of healing: the stories of peoples' lives.