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.

I have taken approximately 2,604 birth control pills in my life. Every night for almost seven years, the incessant alarm on my phone sounds at 10pm reminding me to grab my water bottle and swallow my pill. They are a consistent aspect of my life, which being on a first-name-basis friendship with the pharmacist at my local Walgreens epitomizes. They feel like a core part of me, determining when, where, and how I start to bleed.

I began taking them in the seventh grade to regulate my hormones in order to control acne. Contrary to popular belief, I am not alone in this, as many women use birth control to regulate their periods, lessen their cramps, and curtail the debilitating symptoms of PMS.

My experience with these pills has been tumultuous, to say the least. At first, I could not say enough about their strength and success. My skin was clear, I knew exactly when my periods were starting, and I felt so grown-up taking a pill from an aluminum case every day. But that honeymoon period (pun intended) did not last long. About six months after taking my first pill, I returned to the doctor that had initially prescribed them. The pills were changing who I was as a person. My entire family had noticed that the week before my period, I became withdrawn and extremely moody, crying multiple times a day. At first, this was attributed to a combination of cliché teenage mood swings and PMS. However, it wasn’t long until the characteristics that had defined my personality– a quick sense of humor, a happy-go-lucky attitude, and a passion for pulling pranks– had all but disappeared. To my shock, my doctor explained that this was not unusual or uncommon for women taking oral contraceptives. She told me we could experiment with different formulas of pills, but some bodies simply could not handle the pills. I was devastated.

I have tried eight different kinds of birth control pills with varying levels of success. Although an inconvenience in my life, I came to terms over the years with the pill being a core aspect of my womanhood. But after spending a semester enrolled in Women, Gender and Sexuality Studies exploring why women deserve more than what society often expects them to accept, I have come to believe that we deserve more from our birth control products.

 My experience is not unique. Women have learned to expect serious side-effects with any form of birth control. These side-effects include, but are not limited to: nausea, weight fluctuations, headaches, anxiety, depression, and suicidal thoughts.

Strangely, there is no outrage about this extreme failure in medication efficacy. In the US, 62% of women are currently on some form of birth control, yet any action being taken to improve it is underfunded and under-appreciated. Women accept less effective medications with more side effects because we, as a society, have learned to be comfortable with a lower standard of care for women.

Widespread apathy towards women’s health is extremely evident when one looks at a recent study experimenting with men’s birth control. In this study, 320 men were given birth control shots every night for eight weeks, in an effort to share out the responsibility of avoiding unwanted pregnancies. The sample considered men of varying backgrounds and levels of sexual activity. Despite potentially optimistic results, we will never see this study brought to fruition. It was halted due to the men experiencing “severe” side effects, such as mood swings and acne. Prior to the termination of the study, many women were hopeful that men’s birth control was finally a solution to their own undesirable experiences. However, the scientists would not allow men to endure these negative side effects for even eight weeks, when millions of women experience them for the entirety of their reproductive years.

This begs the question of why society is untroubled by the less than ideal standard of care given to women yet does not believe it is acceptable for men to tolerate comparable experiences. The lack of women in STEM careers, a reluctance to believe women’s symptom descriptions, and a greed-driven pharmaceutical industry are all connected to this double standard. The compounding of these three elements creates structural inequalities in healthcare that put women in physical danger and must be addressed sooner rather than later.

Women are underrepresented and undervalued in STEM careers. I am a two-year member of WashU’s Women in STEM Club, which aims to increase support and mentoring for women in STEM fields so that they can be better prepared to endure the journey ahead of them. As a college student aspiring to have a future career in the field of medicine, this cause directly affects the trajectory of my life. A 2013 study called “What's So Special about STEM? A Comparison of Women's Retention in STEM and Professional Occupations” explored the environment faced by women in different careers. The results found that women in STEM have a statistically significant increased tendency to remove themselves from their fields. Due to careful consideration of any confounding variables, the study uncovered that the main cause for the mass exodus from upper STEM fields by women is not due to children, as many people tend to believe, but rather because of a “hostile work environment.”

This unsustainable work environment is evident at a well-known and iconic leader in the technology field, Google headquarters. In August of 2017, an executive engineer penned an internal memo to the entirety of Google named, “Google’s Ideological Echo Chamber.” In this memo, the employee explains that women are biologically more predisposed to neuroticism, have less drive for higher status, and are more agreeable than assertive. He claims, “This may contribute to the higher levels of anxiety women report on Googlegeist and to the lower number of women in high stress jobs.” He later explains that accommodations should never be made for any employees on the basis of gender or race, as the only reason women and minority groups are underrepresented in tech is because of “biological disadvantages.” This memo went unaddressed by Google leadership for many days. Eventually, an apologetic email that contained plans for improvement was sent out to the company staff, but the damage was already done.

Women’s perspectives are integral to the creation of a successful product for women, yet the vast majority of scientists creating, testing, and marketing birth control products are men. I believe men cannot possibly comprehend the debilitating side effects of birth control pills, and therefore will not fight as hard as women would to find a solution. Because of this, it is essential that we encourage and support young women considering careers in science–which must occur early in a girl’s life. A 2004 research study done by Patricia VanLeuvan uncovered that there is a massive dip in interest in science careers of young girls between the seventh grade and the first year of high school. Careers that have better representation of women, such as medicine and biological sciences, experienced a lesser decrease in interest than less represented fields, such as engineering. This research shows that when one generation of women are inspired to pursue fields in STEM, a domino effect will result in the coming generations.

A recent episode of Grey’s Anatomy, one of my personal favorite shows, explored society’s shortcomings at recognizing and treating women’s self-reported symptoms . Dr. Miranda Bailey, a world-renowned and extremely respected Chief of Surgery, goes to a rival hospital’s ER and calmly explains that she believes she is having a heart attack. The ER doctors and cardiologists, all her friends and all white males, immediately begin questioning her history of OCD and anxiety, blaming these disorders as the reason for her symptoms. Chief Bailey responds with authority and confidence, relaying that heart attacks often manifest themselves differently in women, with symptoms such as shortness of breath without pain, anxiety attacks, and jaw and neck pain. Even with her expertise and obvious medical savviness, the other doctors refuse to believe her until her heart literally stops beating for two minutes. It is no wonder that doctors regularly disregard women’s self-reported symptoms, when Dr. Miranda Bailey, one of the most beloved doctors in the TV world, was not believed when she described her condition.

A study aptly named, “The Girl Who Cried Pain,” exposed the unfortunate truth that female patients are “more likely to be treated less aggressively in their initial encounters with the health-care system until they ‘prove that they are as sick as male patients.” This statement translates more tangibly to a nationwide average 49-minute wait time for men compared to a 65-minute wait time for women after reporting the same acute abdominal pain in an ER.

The lower standard of care given to women who choose to take birth control is ignored by those who have the power to improve it, specifically a greed-driven pharmaceutical industry. “Big pharma” makes billions of dollars every year off of birth control products, including pills, IUDs, vaginal rings, patches, and shots. These profit margins are only increased by women trying multiple versions of each product, as they are forced to do when side effects are too debilitating for them to function. These profits serve as positive reinforcement for big pharma to continue making imperfect products.

For many years, big pharma companies have gotten away with imperfect pills, knowing that they are the preferred choice of birth control for sexually active women. A recent study in the UK shows that these tides are turning. Bayer Healthcare, a leader in the market of contraception products, conducted a research study investigating women’s attitude towards varying forms of birth control. This research was confirmed by the Office of National Statistics, and found that 31% of women chose, at some point in their lives, to switch from the pill to Long Acting Reversible Contraception, or LARC’s. These women were totally unsatisfied with the side effects and overall effectiveness of the pill and decided that their bodies and minds deserved better.

Society has taught women to expect a lower standard of care from all healthcare providers, ranging from doctors to CEO’s of pharmaceutical companies. This custom is dangerous for the physical and mental well-being of women, which further effects all aspects of society. Therefore, it is time that we, as women, demand more for ourselves. We deserve birth control that does its job with no side effects. We deserve to be heard when we go to the Emergency Room asking for help. We deserve to be represented in fields that make decisions about our health. We deserve (birth) control.

Works Cited:

“(Don’t Fear) The Reaper.” Grey’s Anatomy, season 14, episode 11, ABC, 1 Feb. 2018. https://www.hulu.com/watch/1215330.

Fassler, Joe. “How Doctors Take Women's Pain Less Seriously.” The Atlantic, Atlantic Media Company, 15 Oct. 2015, www.theatlantic.com/health/archive/2015/10/emergency-room-wait-times-sexism/410515/.

Glass, Jennifer L., et al. “What's So Special about STEM? A Comparison of Women's  Retention in STEM and Professional Occupations.” Social Forces, vol. 92, no. 2,  2013,  pp. 723–756. JSTOR, JSTOR, www.jstor.org/stable/43287810.

Haelle, Tara. “Does Some Birth Control Raise Depression Risk? That's Complicated.” NPR, NPR, 9 Oct. 2016, www.npr.org/sections/health-shots/2016/10/09/497087838/does-some-birth-control-raise-depression-risk-thats-complicated.

JV. “Side Effects Are OK for Women's Birth Control - but Not for Men's?” USA Today, Gannett Satellite Information Network, 1 Nov. 2016, college.usatoday.com/2016/11/01/male-birth-control-side-effects-come-on/.

Planned Parenthood. “Birth Control Methods & Options | Types of Birth Control.” Planned Parenthood, National - PPFA, www.plannedparenthood.org/learn/birth-control.

VanLeuvan, Patricia. “Young Women's Science/Mathematics Career Goals from Seventh Grade  to High School Graduation.” The Journal of Educational Research, vol. 97, no. 5, 2004,  pp. 248–267. JSTOR, JSTOR, www.jstor.org/stable/27548037.

Sarah is currently a junior at Washington University in St. Louis, studying Psychological and Brain Sciences. She strives to one day incorporate her passion for women's health into a career in the medical field.

Elaine Scarry, Harvard English professor and advocate for narrative medicine, said: “To have great pain is to have certainty; to hear that another person has pain is to have doubt.”

We can never truly know what someone else’s pain feels like, or truly understand another’s experience with illness or injury.  But we are mistaken if we think that this gives us reason not to try.

As two sophomore Nursing majors and Medical Humanities minors at Boston College, we feel a personal responsibility to give voice to stories of pain—including the suffering associated with physical, emotional, and mental illness and stress we have heard from our peers. We also feel called to elicit and validate the stories of pain which haven’t yet been told. Many suffer silently every day on campus, and our hope is to provide space for these people to share their stories and thus feel less isolated.

“Underheard HSC” (@underheard_hsc), the Instagram account we’ve launched, is dedicated to sharing anonymous short health stories and art pieces by and from college students. It aims to make stories of illness, disability, and loss in college more accessible to the students facing these challenges, to encourage those who aren’t naturally inclined to write about their experiences to share their stories, and to help those who haven’t experienced such challenges to join in conversations about health and illness with those around them.

In college, there is great stigma around diseases or injuries that are considered unusual in our age group. We are expected to be young, strong, and resilient to whatever comes our way. This presumption of healthiness makes it challenging for those who undergo debilitating illnesses to express themselves. When these experiences are under-discussed, it leads to misunderstandings about the reality of being sick, and about how to best respond to and care for those around us who are experiencing these challenges. For this reason, we are particularly interested in reaching college students through our work as interns at Health Story Collaborative.

Our hope is that Underheard HSC becomes a space where young people feel less alone in their pain and comfortable enough to submit quotes or short stories about their own health.

View fullsize

Each of us has or will deal with health challenges in our lifetime. It’s time to start talking about it.  By taking the time to listen to and express care for the stories of our peers, we will not only be showing them kindness, but we will also begin to make space for a kind of storytelling which can lead to emotional healing. Our greatest ambition is to inspire better communication and deeper human connection. We hope that this platform welcomes students to share and serves to validate and honor every health story.

Supporting unique projects and starting new conversations can sometimes be scary, but the barriers to discussing the difficulties of illness which we have comfortably hidden behind until now are the very reason we must take a leap and open our minds to the infinite stories of illness and pain existing around us.  Please join us in taking a small but important step in showing our peers that we care: follow @underheard_hsc on Instagram.

For questions or to submit a story, please email Evelyn and Heena at hscinterns@gmail.com.

Heena Nissaraly is a sophomore at Boston College majoring in Nursing and minoring in Medical Humanities. She aims to become an empathic nurse specialized in anesthesia or hospice care, and hopes to eventually improve healthcare in Madagascar.

Evelyn Caty is a sophomore at Boston College majoring in Nursing and minoring in Medical Humanities.  She discovered for herself the utter inexpressibility of pain when she suffered from undiagnosed back pain for many years, and she hopes to use this knowledge to encourage her peers struggling with health challenges to begin healing through the telling of their own stories. She, too, hopes to use her passion for the medical humanities and for storytelling to become a compassionate and effective nurse.

It was a humid night in June,
One of the hottest days of the year.

You could feel your hair standing up on its end,
As a cold and warm front collided.

It left passers-by wondering if the lightning would ever stop.

It did.

So people believed that the storm was over,
That all was well.

I was too loose.

A group of us were going to Fenway,
First game of the summer,
First beer of the week.

The change in weather felt like a good omen,
We bantered as we walked up to Yawkey,
Taking in the smells of Franks,
The shouts of vendors,
And the sight of RED.

As we moved past security,
And scalpers that hounded,
We made our way to our seats.

Suddenly,
To the right of me,
I heard a sickening sound.

Like the thump of a bird as it hits a window,
Or the crack of a gun as it soars through the air,
Or the split of a head as it meets concrete.

A man lay,
Cane sprawled in front,
Unmoving.

RED blood started pooling,
Pouring out of both ears,
Like my beer pouring out of its tap.

People were screaming,
But I couldn’t hear.

I kept thinking,
He is right next to me,
DO SOMETHING.

I thought back to the CPR training I had taken two summers before,
Was this it?
Is this what I was supposed to do?
Is this the final test?

I got confused and spun in a circle,
Walking around next to him,
Hoping that suddenly I would know his diagnosis,
As the loops straightened out in my head.

Looking,
Gaging,
Watching,
But not acting.

THANK GOD.

Someone else nudged him
Someone else was on a phone,
Someone else said help is on the way.

THANK GOD SOMEONE ELSE IS HERE.

My friends call me over,
Terrified,
But they know they are ok.

They don’t know him,
He’s not their dad,
Uncle,
Or brother,
But I know him.

He was standing right next to ME.

Just that morning,
I was telling someone about my degree.

What do you study?
Medical Humanities.
What does that mean?
EMPATHY.
HELP.
CARE.
LOVE.
SUPPORT.
Oh ok. I get it. We need more people like that.
I AGREE.  We need more people like that.

NOT
Running away,
Waiting for someone else to step in,
A FRAUD.
A PHONY.
A DISGRACE.

As the stretcher wheeled itself,
And four EMTs rushed after it,
I considered chasing after them,
I felt sick.

I’m sorry man!
I didn’t know what to do.
I’m sorry man!
I panicked.
I’m sorry man!
I’ve never seen blood pouring out of a brain.
I’m sorry man!
I haven’t signed up for this.

But I didn’t.

Maybe I’m not EMPATHETIC.
Maybe I’m not destined to:
HELP.
CARE.
LOVE.
SUPPORT.
Maybe we need more people like that.
I AGREE. We need more people like that

Sarah Ramsey is an incoming senior at Boston College with a major in Operations Management and a minor in Medical Humanities.  She is the Managing Editor of the Medical Humanities Journal of Boston College and a trip leader for the Appalachia Volunteers.  Sarah aspires to use her business background to improve and expand health opportunities.

Ana Bess Moyer Bell

Drama Therapist, Founder of COAAST (Creating Outreach about Addiction Support Together)

By Val Walker

Ana Bess Moyer Bell is the founder of COAAST, a non-profit organization in Rhode Island that offers arts-based education and therapeutic programing to address the opioid epidemic, aid in prevention education for teens, and continuing medical education for healthcare professionals. She most recently graduated from New York University with a Masters in Drama Therapy. She currently works as a Drama Therapy consultant for The BETES Organization creating and implementing theater-based programs for families of children diagnosed with Type 1 Diabetes. She previously worked as a drama therapist at Access Community Health Center, an outpatient substance abuse clinic, in Manhattan, New York. She held a position as drama therapist at the VA Hospital in West Haven Connecticut, and worked with patients in hospice, cancer treatment, and with PTSD diagnoses. From 2013-2014 she volunteered in San Quentin Prison where she co-facilitated group talk therapy with inmates.

COAAST is a non-profit 501(c)(3) whose mission is to create an ongoing dialogue about addiction and recovery through arts-based community-engaged programming. COAAST (Creating Outreach about Addiction Support Together) is a community-oriented organization that helps individuals recognize addiction not only affects the addicted person, but also their family. Their programs use this saying as a guide: “We hurt in relationship, therefore we heal in relationship.”

Val: What sparked your interest in doing theater about the opioid epidemic?

Ana Bess: I lost my high school sweetheart to an overdose in 2012, which I thought to be an isolated incident. By 2014, three more of my friends died from addiction. I was suffering from the grief of so much loss along with many others around me. There was a feeling of isolation inside this kind of grief because heroin addiction is stigmatized, and often there are feelings of deep shame. From my own suffering I understood that addiction is a family disease, as well as a community disease.

2014 was the turning point when I realized something bigger was happening—more overdoses were reported that year in New England, the worst ever. Communities were desperate. We needed to share our experiences in a way that brought families, friends and communities together. Because I knew theater could be a safe place to explore our stories together, I believed the timing was right to start a theater project about this crisis.

As soon as I became openly vocal about it on Facebook, it seemed like people came out of the woodwork to tell me their story. I inadvertently became the town’s story collector. From these stories themes began to arise; shame, silence, guilt, scapegoating, loss…etc. Finally, I sat down and teased out all the salient themes, and used them to write the play, Four Legs to Stand On.

Val: How does theater create a safe place for healing?

Ana Bess: Theater does two opposing things, both at the same time:  It brings you in so you can empathize with the characters, but it also provides distance, so you see their situation in a larger perspective. Sitting in the audience with the physical distance of the stage, we can be deeply touched while gaining a greater perspective all at once. This happens simultaneously, so we’re participating in an event in real time, while reflecting on it.  Theater asks a lot of us as participants, both in the audience and on stage.

Val: You say theater asks a lot of us as participants, to feel and react, but also to see the bigger picture more clearly at the same time. When it comes to the topic of the opioid epidemic, what is it about a performance that heals the grief and suffering?

Ana Bess: First, just acknowledging people are suffering from being stigmatized, and suffering alone. This very act of acknowledgment connects us. As the story unfolds on stage, we see how this epidemic has separated and divided us, and how we are isolated in our suffering.

Val:  It’s ironic-- by acknowledging the aloneness of our grief together in a theater, we become connected.

Ana Bess: Yes, and by witnessing our own stories, we become more compassionate and empathetic with ourselves. We must start with ourselves. Even subconsciously, we feel a call to action within ourselves.

When we go to see a performance we create a supportive community, at least for a brief period in time. This is especially important for people struggling with addiction. Research has shown they are more likely to seek help, enter rehab, and follow through with long-term recovery when they have a supportive community and family.

After each of our performances we always provide a 20-30 minute period for the actors to take questions from the audience. Talking together following the performance is a vital part of healing. This offers the audiences a space to process their feelings, tell their own story, and brainstorm what their immediate community can do in terms of social action. We often perform for medical communities, such as Harvard medical staff, the Rhode Island Department of Health, and other healthcare entities.  CEUs and CMEs can be provided.

Val: I’ve read terrific reviews of your play, Four Legs to Stand On, which toured this fall throughout Massachusetts. Can you tell us more about this year’s highlights with your group, COAAST?

Ana Bess: Where do I begin? What all of us as a cast sat with over and over again this fall was the overwhelming amount of loss. Town after town, we were faced with mothers, daughters, uncles, friends, and lovers of those lost to opioid addiction. When we were in Middleborough, there was a mother in the audience whose son had died five days prior to us performing, and I’m not exaggerating in saying that every single person in that sold-out crowd had lost someone to addiction. The devastation this epidemic has caused was so palpable every place we performed, and yet felt so silenced.

I learned again the dire need for better and more accessible treatment. Again, over and over, it was glaringly clear how important family and community support is; not only for our addicted ones, but also for those who love them.

At our final performance at a gorgeous black box theater in Franklin, one of the audience members pointed to a lack of attendance. If this were another more fashionable disease, he stated, the room would be filled with a line out the door. So, I guess that’s what I’m left with: stigma is still our biggest battle.

Val: Where will you be performing in 2017? What lies ahead?

Ana Bess: I will be using the performance to teach at some Universities this winter, and we have begun booking already for our spring tour. You can find those dates on our website: www.coaast.org. If you are interested in bringing us to your local community theater, hospital, or school, please contact us.

Val: If you could sum up why storytelling through theater is vital for you, what would you say?

Ana Bess: I believe in the power of storytelling; it is how we make meaning of our lives. Story is a meaning-making tool. Through performing, sharing and witnessing our stories, we’re able to uncover what it means to be a human being. It helps us feel less alone, less disconnected, and more understood.

Val: This is such important work you are doing. I’m honored and thankful to have spent some time with you today.

Ana Bess: Thank you. I’ve enjoyed it.

Ana Bess Moyer suggests these websites for further reading about COAAST and the opioid crisis.

LEARN TO COPE, a support network for families coping with addiction and recovery

SUBSTANCE ABUSE AND MENTAL HEALTH ADMINISTRATION

FACING ADDICTION

SAFE COALITION

AED FOUNDATION, ASSIST, EDUCATE, DEFEAT

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

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.

Today I attended the funeral of my friend and neighbor of 35 years, Ms. Enid.

No one knew her exact age except for her best friend Ruby, another neighbor here at the Roycroft, our six-storey art deco apartment building that we all lived in.

Enid was distinguished and healthy, but dementia grabbed her sensibilities in her last year. Because she was single and had no family, she was sent to a nursing home far away from the Roycroft and her friends, a good forty-minutes drive on the highway.

Her death has had a huge impact on me. I miss her tremendously, of course, and her passing has made me reflect upon my own situation. You see, I’m single too. Even though I have my will in place and am relatively healthy (despite the Canadian health system), financially stable, and of sound mind and soul, I’m not sure that my end-of-life wishes will be carried out. Who will be my advocate?

I’ve selected two executors, but in reality, in the absence of caring family or friends, I worry that no one monitors the executor. What happens if there’s no one left alive to watch over you and your belongings? Can the executor do anything he/she pleases with their client’s estate, body, burial, and belongings? It seems the courts only step in if someone blows the whistle.

Enid’s funeral service seemed designed more to please the needs of her estate lawyer than to please her. When I asked him where Enid wanted to be buried, he admitted that he had never asked her. Her ashes were to be shipped two hours away to a cemetery where he believed her parents are buried. I asked him if Enid wanted to be buried with her parents. He said he hadn’t asked her. How could that happen, I thought?

Interestingly, Enid did have the wherewithal to state that her obituary NOT print her age. Good for you, Enid. Age should be irrelevant, and besides, it’s no one’s business.

These days when we hear a person’s age, assumptions form. An older person is rarely thought of as being or having ever been vital, skilled or talented, and yet, many were and are. While other cultures honor and respect their elderly population, North America seems to dismiss the thought that a senior can be captivating, attractive and interesting. Adding insult to injury, seniors are often referred to as ‘cute’. A puppy is cute. A baby is cute (sometimes).

Unfortunately, after a certain age, people become a member of the invisible race. (I should keep that in mind the next time I want to steal something.)

Enid's memorial service was different than those I’ve been to, particularly because she had no living relatives, no one to eulogize her life from personal experience, and no one to shed tears the way primary mourners do. I cried plenty when I received the news of her death, but somehow that's not the same thing. Or is it? Enid’s friends didn’t want to speak at her service, so I was asked to say something.

I spoke about being Enid’s neighbor for over three decades and what she meant to me. I spoke about the night we spent together one New Year’s Eve, sharing stories while she polished her late mother's silverware, an annual ritual. I spoke about the answer she gave me when asked how she maintained such a close friendship with Ruby for over 60 years.

“Two things, Marla…boundaries and privacy.”

And I spoke about the best advice she ever gave me: “Take a walk every day, and have a goal for your destination. It could be to buy an apple, or the newspaper. Most importantly Marla, get out and move.”

As I looked out into the faces of Enid’s few mourners--just eleven neighbors from The Roycroft, her cleaning lady, and our superintendent--I thought about the sense of community we had created, complete with love, hate, and disparity.

When Enid’s memorial concluded and we crowded around her boxed ashes, and fragile-framed portrait, her lawyer asked a painful question:

“Does anyone want Enid’s photographs?”

Enid's photographs were respectfully scattered about the memorial room as if it was a staged set. We didn’t know who the people in the photos were or their importance to Enid. But there they sat, and what to do with them now was our dilemma. These photos may have been of her parents, or treasured aunts and cousins. We shall never know, now. What we did know was that no one wanted them, not even Ruby (who is also single with no family and 95 years young). Perhaps for Ruby it is just too painful a reminder of what she will miss. I wonder how long she will last without Enid, her best friend, to walk with and talk with and share meals with, especially on Christmas Eve and New Year’s Day.

An 8x10” portrait of a younger Enid now sits in our lobby, with a battery-operated votive candle beside it. Soon it will be removed, tossed into the trash and driven to the city dump where it too, will become ashes.

Questions swirl around in my mind.

Is this how the single population in our society end up? Our once cherished photographs recording our life, loves and lineage all to be tossed into the garbage?

What becomes of their worth, their knowledge, and their very existence?

Deep in my heart, I know that my photos, articles, and recordings of my careers will also end up in the city dump along with the other single people’s tangible memories. They are nobody’s keepsakes but mine.

For now, I’m going to dust off my framed articles of me as standup comic, inspirational speaker, and jazz singer, as well as my photo collection of family members and dogs. I’ll try not to think about what will become of them when I am gone.

A common epitaph is: “You Will Live in Our Hearts Forever.” Another popular one is “Gone, but not forgotten.” I’m starting a new one: “Ashes to Ash, Tossed in the Trash.”

I’ve learned a lot from Enid’s death. We must all legally prepare for our inevitable passing, and get our specific needs, desires and end-of-life arrangements down on paper, while we are mentally able to do so. And we should have someone outside of the executor’s circle making sure our wishes are respected. Some find it morbid to discuss such matters. The truth is, it’s imperative. I’m feeling a bit low today and I know what Enid would tell me. She’d say “Marla, go for a walk. Pick a goal for your destination. Buy an apple, a newspaper, it really doesn’t matter what. Just get moving. It will make you feel better.”

I think she’s right.

Marla Lukofsky is an Inspirational Speaker, Comedian, Singer, Cancer Survivor and Writer. Her stories have been published in various medical journals including Cell2Soul. With two TEDx Talks to her credit, Marla continues to share her experiences in the hopes of helping others.

“Do I look man enough?”

As someone whose body falls outside the societal ideal, I have struggled to establish a positive body image. Skinny, lithe, and lean, my body might fit the mold of a long-distance runner, but one would hardly consider it stereotypically masculine. One might even say it’s feminine. And if there’s one thing men are taught to reject, it is femininity.

I have spent years painstakingly overanalyzing nutrition and exercise and appearance, trying to decipher whether my body was a body I wanted, a body I felt proud of. I’ve tried to balance my daily miles with my daily calorie intake, a strong lower body with a comparatively weaker upper body. My exercise accomplishments —hikes, long runs, marathons, personal records—can sometimes feel less valuable when I consider my frame.

While trying to make sense of my body, I’ve grappled with the rigid definitions of masculinity and femininity: what constitutes a “good” body versus a “bad” body? The construction of these illusive categories show deep-rooted problems in the way society understands health, gender, and individual expression.

In the United States, the ideal male body is muscular, athletic, formidable, and toned. I don’t have bulging or sculpted muscles. I’m not tall or broad-shouldered. And for so long I focused on how my body failed to meet standards instead of defining my own terms for body satisfaction.

My time at college is marked by small steps forward in my journey towards establishing healthy body image. It has involved coming to terms with the ways in which my body does not meet the dominant standards of masculinity. This progress is largely due to students and faculty initiating conversations and posing important questions about body image and campus culture at Boston College and other campuses across the country.

While exploring my body image, I have grappled with questions like:

“Do I look man enough?”

“Do I look masculine?”

“Do I have a good body?”

“What is a good body anyway?”

What I’ve come to value—and what has helped so much—is having space to explore these questions with others, whether in class, at a lecture, or in a friend’s living room. So many people are exploring these questions!

June was Men’s Health Month, and advocates across the country created space for discussing issues like preventive health and mental health. After long being solely cast as women’s health issues, body image and body satisfaction have become increasingly vital topics

in men’s health as well. For instance, during Love Your Body Week at Boston College, there is always an event that addresses issues of masculinity and body image.

This chiseled ideal of masculinity narrows the range of male bodies deemed acceptable, attractive, or desirable and casts an impossible mold for men and boys. If you deviate too far from that standard, you might just feel out of place. For example, restricting the ideal body to an impossible healthy and muscular standard has produced an unhealthy culture of workout supplements and bodybuilding. The body is often a source of concern and dissatisfaction, and this kind of scrutiny can have debilitating consequences for mental and physical health, as in Body Dysmorphic Disorder and Muscle Dysmorphic Disorder.

Stories about body image are necessary because they reveal the cracks in the impossible model of embodied masculinity. Even starting these conversations can be difficult because stereotypical masculinity dictates that we show unwavering confidence in the face of adversity, that we hide vulnerability. Instead of engaging honestly and critically, we keep quiet.

Against the odds, while in college, I began to embrace my own body and celebrate the remarkable and beautiful diversity of all bodies. At college, we’re encouraged to examine the way our bodies affect our relationships with friends, classmates, partners, mentors, and professional connections. What’s less talked about is how this obsession with idealized bodies affects our relationships with ourselves.

Taking part in the campus conversations about body image and learning to celebrate difference provided the momentum I needed to move forward.

I had many difficult days and experiences, like runs not intended to celebrate my body but to punish it, restrictive eating habits, and experimenting with protein supplements. But I’ve come to focus less on how my body looks, and more on what it can do. I might have a slight frame, but my accomplishments are sizeable. I’ve raced two marathons and run countless miles. I’ve hiked difficult trails, culminating in the most spectacular views. I’ve become an adventurous eater, and I’ve embraced food as nourishment and cooking as an opportunity for building connections with friends and family.

Taking a holistic approach to body image—realizing that I am more than my body as much as I am my body—has helped me recognize the value and worth of my own frame. Instead of focusing on the stereotypically masculine features I don’t have, I focus on what I do have: an agile body that supports my everyday activities, an efficient and powerful stride that powers my long distance running.

I’m only one man, but this body is man enough for me.

Christopher Kabacinski is a recent graduate of Boston College, where he studied English and medical humanities, co-founded the Medical Humanities Journal of Boston College, and led the public speaking and storytelling group Word of Mouth. Originally from Scranton, Pennsylvania, Chris now lives in Boston and works in global public health.

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. 

Sharon Perfetti

Executive Director, Cool Kids Campaign, Towson, Maryland

By Val Walker

Sharon believes conversation is critical to the health of family life when a child is battling cancer. She has helped to create a comforting, friendly center for families to drop in and talk freely. Sharon is the executive director and one of the co-founders of the Cool Kids Campaign, a nonprofit dedicated to improving the quality of life for children with cancer, and to bringing families together.

According to Sharon, families facing childhood cancer spend an average of two years battling the illness, consuming an enormous part of a young child's development, and impacting the development of their siblings as well. Parents carry the burden of not only fighting for their child's recovery, but also of keeping family life as normal as possible. Sharon believes in the importance of creating a space for parents to connect and talk in a relaxed, comforting environment, while staff provide services for the children.

Her inspiration to co-found Cool Kids sprang from leading a community effort of thousands of volunteers to build Annie’s Playground in Fallston, MD, to memorialize her friend’s daughter, Annie Cumpston, and other children who had died too soon.

Now soaring past their 10th anniversary, the Cool Kids Campaign serves hundreds of families in the Towson, MD, area, operating a learning/tutoring center for children undergoing cancer treatments, as well as offering support groups for their siblings.  Cool Kids provides 250 care packages annually, a newsletter, a drop-in center for families, and organizes many fundraising events.

As Executive Director of the Cool Kids Campaign for children with cancer, how vital is the role of conversation in your mission?

Sharon:  Conversation is critical to the health of family life—especially when we have a child with cancer. From the first day we opened our doors, it was clear to me those parents needed face-to-face conversations with each other. They were eager to talk.

Through conversation, in a natural way, parents could develop trusting relationships with each other so they could think out loud, problem-solve or just vent. And beyond the frightening medical aspects to consider, there were logistical, financial and educational needs, as if the emotional toll wasn’t big enough. “How can I manage my child’s time away from school during the long term treatment?” “How can I handle the needs of my other children during these months or years of treatment?” “What will happen if the prognosis gets even worse?”

How did you create an environment conducive to parents starting conversations with each other?  Did you provide support groups or classes, or offer counseling sessions?

Sharon: We just gave people the space and the level of comfort they needed, putting them at ease, and they started talking naturally. We take care of the children while parents kick back and just talk.

As important as support groups, counseling and other resources are for parents, we focus more on providing play activities for the children, or tutoring the children, meeting the needs of the children first. But as parents sit together, watching their children playing and learning, just relaxing, they casually chat and develop solid connections. By allowing the parents some respite from their burdens, they feel free enough to open up and talk about whatever is on their minds. Basically, we give them a break, so they can enjoy the simple pleasures of hanging out with other parents. We don’t steer them into a particular conversation or topic—they just finally have the time and place to talk, creating strong bonds. I’ve observed how this organic, drop-in process is effective for sharing even the most painful feelings and situations, as some parents face anticipatory grief during the palliative care for their child.

Sharon, what do you think is really going on when parents are talking to other parents of children coping with cancer?

Sharon:  First of all, parents are not looking for someone to solve their problems. They want empathy, reassurance, understanding, and certainly kindness. All this comes from a good conversation with another parent going through similar hardships. The magic happens when conversation flows naturally, and the parents are surprised by what comes up—a new perspective, a sense of normalcy, a good laugh, a sudden revelation.

Once again, here are the ingredients to creating conversations:  Welcoming people heartily, freeing them up by caring for their children for a while, letting them sit back and watch their children play and learn, letting them have another parent right next to them to turn to—and then-- let the conversation begin!

What personally motivated you to become an advocate for conversation for the families at Cool Kids?

Sharon:  It all started before I worked with the Cool Kids Campaign, when I was volunteering for Annie’s Playground as their general coordinator. Annie’s Playground is a memorial playground for dozens of local children who have died, many of them from cancer. I mostly worked from my home in those early years of building the playground, and family members who I had never met came knocking at my door to drop off checks for the equipment needed for the memorial sites. Quite spontaneously, parents and family members would start sharing their memories of the children—they needed to talk, and of course, nothing could be more profound than the death of a child. As they opened up to me with their stories, I would invite them to sit down in my living room, and they often talked for an hour or two. From so many conversations during those years, I learned the power of listening, and that even if we can never fix something broken or lost in our lives, we can at least share what we’ve learned and what we’ve loved. So, a few years later, when the Cool Kids programs developed, I was very much aware that we needed a homelike environment for families to talk.

Personally speaking, the whole conversation experience with these families has guided me to teach my own children, now ages 21, 18, and 16, the importance of in-person conversation and good listening. Even in our digital age, there are just too many things in life that can’t be fixed, and we need to be able to talk with each other even when we don’t have the answers. When we can’t get the job we want, or the cure we want, or the results we want, at least we still can enjoy our relationships.

Are there new media projects developing from all the conversations over the years between the parents, and with you and your staff?

Sharon:  We're working on a booklet called You Are Not Alone, a result of the many, many conversations we've had about how families can reach out to each other. Also, from my years with Annie’s Playground and with Cool Kids, witnessing how healing it is to continue our stories about our loved ones after a death, I've created a tribute site, The Stories Between. It’s designed to memorialize loved ones with our stories, videos, and music. It's a free service for anyone anywhere who'd like to create pages for their loved ones.

Thanks so much for your time and thoughts, Sharon.  It's rewarding to hear how much you've worked towards reclaiming the role of conversation in the lives of your families—and in your own life.

Resources, Further Reading:

The Stories Between,  www.thestoriesbetween.com

Cool Kids Campaign, Towson, MD, www.coolkidscampaign.org

Annie's Playground, Fallston, MD, www.anniesplayground.net

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

Your scabs are elegant because they are outward signs of you mending and regenerating, creating soft new skin without even thinking about it. While you’re busy being angry about your inability to finish a task for work or dreading calling  someone back, while you’re regretting the choice you made last month, without even knowing it, you’re subconsciously reconstructing yourself, and your ‘big’ worries are trivialities compared to your body’s own constant maintenance of what is vital, what keeps you alive.

I’m not going to tell you to find someone to hold your hand even when it’s callused or scabbed. You’ve already been told that, and that doesn’t mean it always goes well, or will provide what you need. Instead, I’m going to tell you to learn to respect your own scabs, to find elegance and utility in the way your calluses grip your coffee mug. To not think twice before wearing shorts when there are chain grease stripes, scabs and bruises on your legs.

It’s far too easy to fear someone else’s split-second judgment about your scars or calluses or the shape of your muscles. But, while someone else may shake your hand for five seconds, you wear and carry it always. You are the one who watches your

fingers nimbly hop the keys of your keyboard as you type, lift the spoon in your breakfast each morning, and gently comb out your hair each night. As you work to modify yourself with your mind, recall that your body is doing the same, and respect it. Respect your scabs.

Annie Harvieux is a senior at Harvard College, where she is an English major.

Jennifer Sax

Director of Communications, Good Shepherd Community Care

By Val Walker

1. What sparked your interest in having conversations about our end-of-life care?

When I was 14, I began volunteering for a hospice in Maine where my mother worked as a nurse—and she still is a hospice nurse. Even as a teen, and throughout my life-- both personally and professionally,  I have witnessed how having conversations about one’s end-of-life wishes has impact on the way we live our lives.  These conversations are not just about dying. They are about how we want to live until we die. They are about taking responsibility, expressing our values and advocating for our care.

2. What are the most important reasons for having conversations with our loved ones and providers about the end of our lives?

Studies consistently report that one of the single most important factors in whether patients and family members report a positive end-of-life experience is whether or not they have had a conversation with their family and loved ones about their wishes. We find that when people have had these conversations, caregivers and loved ones suffer less complicated grief – and have less guilt, confusion and stress.

As providers, by initiating “the conversation” we have the opportunity to significantly and effectively change the kind of care people receive.

I’m a firm advocate for having these conversations from an early age. Life can be unpredictable and it’s never too late, until it is.  The earlier and more frequently we can be having these conversations the more comfortable we will become and the less likely we are to end up making decisions in crisis.

3.  As a communications professional, how do you currently advocate for having end-of-life conversations?

As part of my role in directing the programming of Good Shepherd Institute, I frequently have the opportunity to raise awareness and promote community dialogue around end-of-life issues and planning. I believe that we are in the midst of a pseudo “social revolution”  towards increasing people’s comfort with end-of-life issues ---advance care planning is an integral piece.

There are lots of wonderful organizations out there doing this work. I recently participated in a new media campaign for The Conversation Project and we have had the pleasure of hosting its founder, Ellen Goodman, at one of our Institute Dinners. Good Shepherd is also a partner of Honoring Choices Massachusetts and we participate annually in National Healthcare Decisions Day (April 16th) by sponsoring community programming and education. This year we are hosting “Who’s Your Proxy” as a fun and interactive way to take some of the “edge” and stigma away from these topics.

4. Because you’re so active in teaching the importance of end-of-life conversations, how do you envision the healing role of conversation in general for health care?

With the influx of the electronic medical record and changing health care regulations, I believe we have been at risk of discouraging conversations between patients and providers. That said, there are advocates for change out there (Dr. Atul Gawande, Being Mortal) and certainly some Medicare reform that speaks to the importance of these conversations. The bottom line is that I think people need to be advocates for themselves and know that they can “open the door” to these conversations – not only with family and loved ones, but with providers as well.  For so long we have been a society focused on cure. Having these conversations is about shifting our focus to what is truly important.

I couldn’t agree more, Jennifer. Thanks so much for speaking with me today!

I found Jennifer’s training resources for end-of-life conversations to be very helpful, and have listed below the links, for further reading:

Good Shepherd Community Care

http://www.gscommunitycare.org

The Conversation Project, and Founder, Ellen Goodman

www.theconversationproject.org

National Health Care Decisions Day (April 16, 2016)

http://www.nhdd.org

Honoring Choices Massachusetts

http://www.honoringchoicesmass.com

The Institute for Healthcare Improvement

www.ihi.org

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

I’m a photographer and multidisciplinary artist whose work centers around the idea that sharing stories and making art about potentially isolating experiences can help make those experiences less lonely. I map experiences that many of us share, but don’t always talk about.

I’m currently working on an evolving art project about bereavement called Grief Landscapes, in which I’m documenting the wide variety of ways that people respond to loss. First, I’m inviting people to answer a series of questions about how they grieved after someone’s death. I'm then photographing, in extreme close-up, something that evokes the memory of the person who died, transforming it into an abstract landscape inspired by the person’s grief story.

Grief is often described as a journey, but it’s an intensely individual and often isolating one: rarely do people speak openly about the range of ways of grieving, and there seem to be many misconceptions about the grief process. I’m using the project to examine a number of questions about grief and bereavement: What does it look like? How do people navigate it differently? How does grief change us? Grief Landscapes documents grief not as a prescribed set of steps or timelines but as a place where there are no right answers, just an exploration of new territory.

You can live anywhere in the world to participate in Grief Landscapes, and I’m looking for contributors of all ages and backgrounds, with different relationships to the deceased, and different lengths of time since the loss. To view the project so far and submit your story, go to grieflandscapes.com.

Grief Landscapes is supported by a grant from the Ontario Arts Council.

Mindy Stricke is a multidisciplinary artist creating photographs, interactive installations, conversations and collaborations. Her work has been awarded grants from the Toronto Arts Council, the Ontario Arts Council and the Canada Council for the Arts, exhibited throughout North America, and has appeared in international publications including The New York Times, Time Magazine, Newsweek, and the Smithsonian Institute Photography Initiative’s book and online exhibit, Click! Photography Changes Everything. Originally from New York, she now lives in Toronto with her husband and two children.

Each fall at Boston College, the Women’s Center hosts Love Your Body Week (LYBW), “a week of programming dedicated to promoting healthy body image on campus.” The Women’s Center, in collaboration with other organizations, aims to give students space to reflect on their relationships with their bodies. Inclusivity is a key feature of this week, as many of the events of consider how body image intersects with race, gender, sexuality, ability, and class. This year events ranged from lectures on body image and the media and panel discussions on colorism, to a performance of Eve Ensler’s Good Body andEmbodied Expression, a therapeutic painting session.

The week kicked off on Monday, November 9 with the opening reception for Embodied Stories, a photography exhibit by Ben Flythe, a student photographer. Flythe photographed students and their bodily identifiers—tattoos, scars, burns, skin color, and birthmarks, for example. Accompanying the portraits were quotations from interviews with the students, who discussed what their bodies mean to them. Although the portraits highlight the specificities of each body, the students never become just bodies: their identities shine through; the photographs celebrate the dynamic and complex ways identities align with body image. In his gallery talk, Flythe emphasized the diversity of the stories he captured. These individual stories, he noted, speak to our own stories of embodiment. We each have an embodied story, and putting our own stories into dialogue with the stories of others—those portraits, for instance—is to understand that we are all connected.

This year I was fortunate enough to have a small hand in LYBW, as I helped to bring two student speakers to the opening reception. Leading up to the event, Marwa Eltahir—a Women’s Center staffer and co-coordinator of LYBW—and I sat down with Erin Sutton and Justin Kresevic and heard their stories; we were struck by how their stories spoke to the goals of LYBW and the complexity of body image. My work with Health Story Collaborative prepared me well for this task, and I adapted the Healing Story Session guidelines and questions for the purposes of the event. What’s more important, however, is that Health Story Collaborative taught me how to listen, to be present as someone shares their story, to accompany them. What mattered most was letting them tell their stories that needed to be told.

At the reception to Embodied Stories, Erin told her story of living with bulimia and her difficult, continuing journey to recovery. She spoke to the difficulty of coming to love her body at Boston College, where body image and appearance issues so often go unnoticed, unsaid. She expressed her gratitude to the people who have supported her, and spoke to the daily challenges she faces in coming to love her own body. Justin spoke to the difficulty of being short, when masculinity is associated with being tall and muscular. This dissonance has affected his personal relationships, and he works everyday to accept his own body. Justin emphasized the need to work against the problematic ideals of men’s body images: masculinity is as individual as each of our bodies.

Erin and Justin challenged all of us in attendance to understand truly what Love Your Body Week means. Loving one’s body isn’t something to be taken for granted, to be considered easy. When so many images and ideals of bodily perfection and worth hold up problematic and impossible standards, coming to love one’s body is a challenging and harrowing experience. By sharing their own stories of embodiment and acknowledging their continuing journey towards loving their bodies, Erin and Justin asked us all to consider our own stories.

I am so grateful to have been a small part of LYBW and to have heard these stories. Erin’s and Justin’s stories, along with the stories of students photographed by Ben, speak to how important it is to talk about these issues and how valuable it is to enter into meaningful conversation with others. These stories have stayed with me, in my own process of coming to terms with my own body. Sharing stories, at the end of the day, is about building community, starting conversations, and realizing that none of us are alone, that our stories all matter. I look forward to hearing more stories, perhaps telling my own, and continuing the worthwhile conversations around body image happening both at Boston College and beyond campus.

Erin ended her talk with a powerful statement about our selves, our bodies, and our stories: We are all worth it.

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

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

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

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

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

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

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

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

You can watch the Mirror To Society video here.

In the weeks leading up to the 25th anniversary of the Americans with Disabilities Act (ADA) on July 26, social media was abuzz with disability stories. The National Museum of American History even organized an international Twitter conversation on #DisabilityStories on July 15, 2015. For the remarkably successful daylong event, people from across the globe engaged in conversations about representations of disability in art and popular culture, the lived experience of disability, and historical accounts and artifacts.

For people with disabilities and disability rights advocates, this anniversary occasions both celebration and reflection. Accessible spaces, biomedical technology, and assistive services have made the world a more habitable place for people with disabilities. At Boston College, where I attend school, student have rallied around the cause of disability, fighting for a campus as accessible as it is beautiful. The Disability Awareness Committee of Boston College has made accessibility a critical issue on campus, documenting the ways in which the built environment and institutional policies at Boston College—for instance, steep pathways marked as wheelchair accessible—disempower them.

Disability advocates in Boston marked the anniversary with a celebration in Boston Common.

The ADA has been a remarkable success, but we must not forget the work left to do. William Peace, who attended the event, perhaps sums it up best: “[The ADA] has succeeded legally, but socially it has a long way to go.”

Securing the civil rights of and equal opportunities for these citizens is, bottom line, an issue of representation. People with disabilities are daily disempowered and isolated by institutions and individuals that pass over, erase, or ignore the realities of disability. It happens when a conference is held in an inaccessible building. It happens when a path is marked as accessible but is, in fact, unnavigable. It happens when a vision resources workstation provides no resources, when the sign for the workstation isn’t even in braille.

People with disabilities are often invisible in some parts of everyday life, such as in the workplace. In 2012, only 33.5% of working-age people with disabilities were employed. In the media and popular culture, individuals with disabilities appear less often than able-bodied individuals. When they do appear, their portrayals are often limited.

The unflagging stigma and underrepresentation of disability halts the progress of the ADA. If people with disabilities continue to be forgotten or perceived in problematic ways, then the ADA will fail to achieve its ultimate goals of accessibility and inclusion.

Stories are the answer to this crisis of representation. Which stories get told and how those stories are circulated determine how disability is understood socially and culturally.

We need to move away from disability as burden and the “super-crip” stereotype. While these two overarching narratives seem compassionate or inspiring, they both portray disability as a tragedy, and life with a disability as inferior and unsatisfying.

Disability cannot be reduced to a single narrative of pity, overcoming, or empowerment. Disability, as with all lived experience, is complex, multi-faceted, rich, individual. It resists a single story.

As a society, we should listen more to the stories of individuals with disabilities. To the stories of their everyday life, of their successes and their struggles, the minutiae and the monumental moments. Disability is an innumerable range of stories—told, retold, to be told.

Telling stories of disability is vital to making visible and giving voice to individuals with disabilities. Hearing stories is a way of acknowledging the reality of disability and empowering people with disabilities. By acknowledging similarities, differences, and singularities, we connect ourselves with stories.

So let’s keep sharing #DisabilityStories beyond the 25th anniversary of the ADA. The success of the ADA is about more than ramps, web accessibility, or public services. It’s about making everyday life accessible, inclusive, and fulfilling to people with disabilities. It’s about changing our attitudes and assumptions toward disability once and for all.

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

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

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

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

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

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

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

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

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

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

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

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

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

Resources:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

More about Brad Lewis:

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

More about Annie Robinson:

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

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

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

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

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.