By Val Walker

Could anything make you feel lonelier than having no one to take you home after a medical procedure? Before the day of the procedure, single older adults scramble to find a ride for their colonoscopy or endoscopy, asking friends, neighbors, family members, colleagues, church members—you essentially go begging—but no one can be pinned down to pick you up. These days, medical centers have moved as much of their services to outpatient procedures and day surgeries where patients are moved through the pipes like an assembly line. So, they expect their patients to have a trusted ride at the ready to sign off so they can whisk you through and release you to someone “responsible.” This is especially tricky when a patient has anesthesia and cannot simply take an Uber or hire a ride service, or use public transportation, or use the volunteer ride services that senior centers offer.

For single older adults like me, I had to reschedule my endoscopy four times because my friend or neighbor or chosen ride fell through at the last minute. I was given hurried, dismissive advice by my medical center to just call my local senior center or call a medical transport service. Sometimes these services had been discontinued, or did not qualify, or cost more than $300 for a ride. There is a pervasive misconception that any older adult can simply call their local senior center or grab a volunteer from church for a ride to a medical appointment. But I told everyone who so casually handed me lists of ride services that a procedure involving anesthesia in an outpatient facility would not accept a driver from any organization due to liability concerns.

Some of us stranded seniors who’ve fallen through these cracks have flat out given up on bothering to get ourselves the care we need.

This flakiness and chaos with finding reliable rides caused my biopsy to be delayed for four months. I was feeling more and more frustrated and worried, but far worse, I was falling into a pit of feeling lonelier, downright abandoned (does anyone give a rat’s ass?) that no one could keep their commitment or go out of their way to help me get that long-overdue biopsy. Did my friends or anyone care that abnormal cells were already growing in those membranes? I already had thyroid cancer four years ago and I sorely needed this next biopsy for my Barrett’s esophagus and abnormal cell changes in the membranes of my throat. But I could find no one, after a good 60 attempts to find people for a ride. Sure, I was “well-connected,” but could I count on anyone? Finally, I resorted to scheduling a home health agency and having to pay $120 just for a ride home (and that’s pretty cheap these days). Paying for this certainly meant I had to go without other basic needs (had to use the food pantry).

Not only is this predicament unfair financially and medically for isolated adults who are forced to delay important, perhaps life-saving procedures—it hurts us most in our hearts and makes us feel uncared for and unloved. Yes, I am being emotional here, but I believe most of my fellow solo agers out there on their own fighting for basic health care feel just as lonely and abandoned. And to tell the truth, I’m sure I’m not the only one who was haunted by an inner demon nagging at them saying, “So who cares if these cells turn into cancer—maybe it’s time to get out of Dodge.”

And yet, with just a little more help from those friends around us, an early cancer can be spotted by one single act of kindness—a ride home from an endoscopy.

So, I’ve said it: Our health care system can make solo agers feel even lonelier when left to their own devices to scrounge up someone to drive them home from an overdue biopsy. And if we cannot find anyone available or willing without having to pay for them to help us, our sense of isolation and abandonment might weaken our will to keep fighting—and our will to live.

That’s what social isolation really means. That’s one way it can kill us. What do you think?

Val Walker is a contributing blogger for Psychology Today and the author of 400 Friends and No One to Call, released in 2020 with Central Recovery Press. Her first book, The Art of Comforting (Penguin/Random House, 2010), won the Nautilus Book award and was recommended by the Boston Public Health Commission as a guide for families impacted by the Boston Marathon Bombing. Val received her MS in rehabilitation counseling from Virginia Commonwealth University and is a rehabilitation consultant, speaker, and educator. Her articles and Q&As have appeared in AARP, Caregiver Space, Babyboomer.com, Caregiver Solutions, Time, Good Housekeeping, Coping with Cancer, Boston Globe Magazine, Belief Net, Marie Claire, and Sweety High. Keep up with Val at www.ValWalkerAuthor.com

An Interview with Paul Kandarian, Actor, Writer, Activist:

By Val Walker

Introduction

This year the Health Story Collaborative, in partnership with COAAST (Creating Outreach About Addiction Support Together), launched performances of an autobiographical play written by Paul Kandarian and his son, Paul, called Resurfacing. Their story takes a close look at how addiction tears apart family relationships as well as how our wider community can play a vital role in bringing a family back together in the fragile, early stages of recovery.

Last April, I sat in the audience of this play alongside an audience of over 100 people who broke into a standing ovation as we wiped away our tears of relief and hope. I felt the power of a live theatrical performance telling a true story with a very hard-won and inspiring ending.  

Resurfacing tells the story of Paul as a father who was once painfully disconnected and powerless over his son’s opioid addiction. And worse, he believed he was responsible for his son’s pain. “I felt like a shitty parent that my kid had turned out this way.” The shame Paul suffered, alongside his son’s shame of being addicted, became a vicious isolating force that polarized one from another. But despite the limitations of his family to heal from this isolating force, and the alienation of returning from Afghanistan as a veteran, his son turns to supportive people in his community to help him build his recovery support network. The healing force of the wider community is also what Paul needs as a father to break through his isolation and shame. 

In short, Resurfacing shows us how our community can hold families together through isolating times when they have no one to count on. We need our communities to grapple with addiction and the long, lonely path of recovery.

About Paul

Paul E. Kandarian is an actor and a writer living in the Boston-Providence area. He has written countless articles for a variety of publications, including the Boston Globe, Yankee magazine, Rhode Island Monthly, Boston Parent, Seattle’s Child and many others. Since 2007 he has dedicated his creative talents towards acting by appearing in independent films, TV commercials, educational videos and more.

But with all the acting he does, the most important work he does is performing with the nonprofit, COAAST, Creating Outreach about Addiction Support Together. A Rhode Island-based nonprofit devoted to eradicating the opioid epidemic through arts-based therapeutic and community-driven approaches, COAAST was founded by Ana Bess Moyer Bell. Working closely with Ana Bess, Paul performs in the COAAST production of Four Legs to Stand On in addition to Resurfacing in his mission as an activist in helping communities heal from addiction.

Theater as a Gathering Force to Build Community

Paul Kandarian with Ryan Durkay in Resurfacing (Photo: Boston College The Heights)

Paul was the perfect person to explore the role theater plays in strengthening our communities to grapple with addiction. I couldn’t wait to ask Paul about his experiences performing for diverse audiences since Resurfacing was launched earlier this year.

Val: Paul, how does repeatedly performing in a play about your own painful ordeal make you feel? It must be exhausting, to say the least, if not difficult.

Paul. Sure--It does feel nerve-wracking at times, and it does hit close to home. Yes, it’s raw, and you “put yourself out there,” and you do “go there” time and time again. But seriously, it’s necessary. That’s why I do this. This story needs to be told and it comes straight from the heart, which I think is the best way to get it out there. My words and my son’s words speak for thousands of fathers and sons going through addiction and recovery. I am honored to be performing, and I will say again why I am performing as an activist: “We hurt as a community, so we must heal as a community.”

Val: How does theater make us all feel part of our community?

Paul: Theater works on many levels to make us feel a part of our community. First of all, theater validates that we already are a community. When we all get together in a big room to watch a true story being told, we are assured that community is truly around us—we just don’t see it until we are all in that room together. Theater shows us what has been there behind the scenes, that our community is in action, long before it has turned into a news event or a script or a play. Just think about it: When you go to a play about something you care about, you are surrounded by a bunch of people you don’t know (strangers) and yet we’ve all come together to be moved by the same things (addiction, loneliness, isolation, families in chaos) and we all have a common experience at the same time—now, that’s community.

We forget we are part of a community because most of the time we are running around in our individualized little bubbles. It’s like the saying, “A fish doesn’t know it’s wet.” We hardly remember we are all in this big shitstorm together as human communities.

Val. I never thought of community in that way--that we just forget that we already are a community until we are all in that room together having the same experience. Grappling with addiction, recovery and isolation does require this powerful sense of community that supports us. And furthermore, how does theater create community?

Paul: Theater has an immersive force. It pulls us in. That immersion is healing because we are somehow given the permission to tap what is uncomfortable inside us. Theater allows us to “go there” to what’s eating at us, what’s downright painful. When we identify with a character, we sort of hitch a ride with that person to go through their journey and come out with something they have learned. Essentially theater works on the assumption that if you can feel it, you can heal it. Best of all, theater can take us to the stigmatized, or shameful parts of ourselves. The parts we hide from others as well as ourselves. We might even feel acceptance and compassion for those hidden parts.

 Paul E. Kandarian, (far left) son Paul S. Kandarian, (second from left) Anna Bess Moyer Bell (holding mic), Founder, and other COAAST performers. (Photo courtesy of COAAST)

Val. Yes, the stigmatized and shameful place that the opioid epidemic touches in all of us…

Paul. To make a point about stigma, I often try a live experiment with our audiences who come to see Resurfacing. Here is what I do: I ask the people in the audience to raise their hands if they know someone who has cancer, and most people will raise their hands. But when I ask people to raise their hands if they know someone with an addiction, far fewer hands will go up. The audience “gets it” when we do this experiment. We hide so much. Still, theater has a way of reaching the parts we hide, and this helps remove the stigma.

And I have one more thing to say about why theater is so healing. It is revelatory. It shows us we are more similar than we are different. It reveals we are mostly alike deep inside. I find that very hopeful.  Theater helps us feel that this world does not have to be so impersonal and dehumanizing. We are, indeed, much more alike than our world seems to tell us. Social media, for example, can tell us how special or different or unique or better or worse we are from one another. I believe theater does the opposite. We show up and we feel the same feeling at the same time in the same place. Theater gathers us together and breaks us out of isolation and loneliness.

Paul Kandarian’s son, Paul S. Kandarian

Val. Paul, of all the shows you have performed with Resurfacing, which one has been the most memorable for you?

Paul: Earlier this fall, we performed at the Providence VA Medical Center. It was a packed house, a great turnout. It felt so good to perform for so many veterans. My son, a veteran of the war in Afghanistan, was in that audience. Sitting in that audience was also the clinician that he first reached out to and trusted, Lynne Deion.  Lynne never gave up on him and has been there throughout his recovery. It was brilliant to have them all there. It was cathartic, to say the least. I am so proud of my son. He has now completed his degree in psychology and is working as a rehabilitation counselor with others in recovery.

I’m looking forward to more performances of Resurfacing in 2020. In partnership with the Health Story Collaborative, COAAST will be expanding Resurfacing to more venues, especially for veterans in Rhode Island and Massachusetts. Stay tuned.

What a long, long journey it has been for all of us. It’s hard work, but being an activist as an actor is the most rewarding thing I’ve ever done in my life. I never thought helping others could feel this good.

Val. Thanks for all you do, Paul. Congratulations for launching Resurfacing this year. It’s been wonderful to talk with you.

Paul. I’ve enjoyed it. Thanks very much.

TO READ MORE ABOUT RESURFACING AND COAAST PRODUCTIONS, EVENTS, AND PROJECTS:

COAAST (Creating Outreach About Addiction Support Together) www.COAAST.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) which won the Nautilus Book Award. 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, with Central Recovery Press. Learn more at www.valwalkerauthor.com

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.

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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.

An Interview with Molly Stewart, Mission Services Director at the Cancer Community Center of South Portland, Maine

By Val Walker

A Cancer diagnosis and treatment can be an isolating experience for many of us. I wanted to learn from Molly how a support organization like the Cancer Community Center could help us break out of isolation by fostering new friendships and a sense of community. On paper, of course, we could assume a community center was supposed to build connection, but in reality, I knew it was difficult to get people engaged after a life-changing illness such as cancer. What did it take to get people in person to bond again after a long period of being in survival mode and pain?

Val: A Cancer diagnosis can be an isolating experience. Molly, what does it take to break through the isolation many of us go through?

Molly: Breaking through isolation takes courage. After a cancer diagnosis, your social needs could change. And even though you know you need to take the first step, you might not even be sure what you’re looking for. You don’t know what to expect.

It can take a lot of courage just to walk through our doors at the Cancer Community Center. And before you’ve walked through our doors, it’s taken courage to recognize you’re lacking support and want to do something about it. It’s not unusual for people to express surprise, disappointment or frustration with responses to their cancer diagnosis.

Speaking of the courage to be open and vulnerable, I love the work of the author, Brené Brown (The Gifts of Imperfection, Braving the Wilderness). She writes beautifully about the courage it takes to show up for each other, and “letting ourselves be seen.”  Stepping into our doors at the Cancer Community Center is a statement that we’re brave enough to let ourselves be seen, to be open and vulnerable. We hope that is a healing step—just coming to the Center.

Val:  It’s heartening to hear how welcoming you are for those brave enough to step through your doors. Are most people looking for the same kinds of connections and resources?

Molly: It’s important to remember that everyone has different needs when it comes to social support. We’re each unique in what we want, and our social needs change over time. Some people coming to the Center are looking to expand their social network, and others just want a quiet, private space to talk with one another. Some people are aware that they lack social support and want to engage and make connections in the activities at the Center. Others may have enough support from family and friends, and want to talk with someone who has been there.

Val:  You offer classes, support groups, an individual buddy program, resources. What do you recommend for people living with cancer who feel fearful or hesitant about venturing into new connections?

Molly: I encourage people to take small steps in getting out again. You might ask, “What am I looking for?” Pay attention and become more aware of the social aspects in all areas of your life— your physical, emotional, spiritual, financial, and occupational needs. Who is there in these different areas of your life? By just being aware, assessing and reflecting how people influence us or nourish us (or not), we can choose what is best for us as we resurface from isolation. I’ve studied social science research, and as humans we are wired to be social. We want to belong and feel accepted.

Val:  I believe strongly that anyone recovering from isolation, whether from an illness, or a loss, needs a period of social recovery. During our ordeal when we’re in survival mode, we may have lost our confidence in how to connect with others. We might even feel despondent about people “not being there” for us. What do you have to say about our social recovery after a long, lonely period of feeling disconnected?

Molly: If we’ve been disconnected and isolated for a time, and experienced a major life change, we might need time and support to start connecting with others. We might have rusty social skills, less confidence in making connections, or the lens with which we are making connections has changed and we have to adjust to a new social perspective. What I witness with many of our community members is that they’re building social confidence, after a difficult life experience.

If your ability to connect socially were a muscle, after a time of change in your life (whether that is an illness, the birth of a child, or retirement) you might need to rebuild your social strength with conditioning, to practice in safe and supporting social situations. Once your social muscles are toned up, you feel more prepared to go out into the world, to your workplaces, families, friendships, and communities, having had safe and supportive social interactions that helped to integrate that experience into yourself.

Val: That’s a brilliant way of looking at rebuilding our confidence to be social again! Yes, it’s social conditioning, social muscling-up. Having the Cancer Community Center as a safe place to muscle-up and practice being socially active is a way to prepare us to get back out into the world. What have you learned from working at the Cancer Community Center as their mission services director?

Molly: Val, I’ve had the experience of interacting with hundreds of people diagnosed with cancer and their loved ones when they come to the Center to find support. We sit down often one-on-one with every new community member. When they first come in, they’re often scared and overwhelmed. We share information about the programs at the Center, how we can help and work together to identify what they’re most interested in. Many activities at the Center are based on a peer support model which means we create opportunities for people to connect with someone else who has had a similar experience. We offer support and educational groups, complementary therapies, nutrition and movement activities.  When someone who is recently diagnosed talks with another person who has been there and knows what it’s like to get that diagnosis and try to figure out the path ahead of them, it's like seeing a person in the dark find a flashlight. All of a sudden, there is hope. They understand that others have been down this path, and they're here to help and share what they learned, what worked, and what was hard for them, and that every experience is different. It's reassuring to know you’re not alone.

Val: Would you mind telling us a personal experience of breaking through an isolating time in your own life?

Molly: I have had several times, but the most powerful one was when my son was born. I was in grad school when Leo was born. First, there were not a lot of other pregnant grad students, and I was a new Mom. Talk about a life change--you’re sleep-deprived, have a huge responsibility of caring for another human being, and you have never done anything like this before. You feel totally challenged every day, and often I felt like I didn’t know how do this.

I was fortunate to have Birth Roots, a support organization for young parents in my city. I was attending a class for new parents, and heard how other parents were coping, or not. I received the benefit of learning that everything I was going through was normal—yes, crying that much is normal. It gave me more confidence in my new role as a mother.

After the group was over, I went back to school, and continued to identify ways to connect with other families. I knew that to have balance in my new role, I had to keep integrating the role of Mother into my identity. I was never a mother before, and now, five years later, that role keeps shifting.  First, I was a new parent, then I was the mother of a toddler, then a preschooler, and now have a son in elementary school. It's always changing, but what I have learned is that I need the social support of other parents because they “get it.” They are there, and that connection helps immensely to reduce the anxiety, isolation and confusion of trying to navigate the vast challenges of parenthood.

Val:  Thanks so much for your story and insights, Molly. It’s clear we need support organizations when we feel isolated by a major life change. It makes life so much easier to have people at the ready who understand our predicament, so we can practice being socially engaged in new ways. It’s heartening to learn from you how we can foster long-lasting, deep friendships, and a build a solid sense of community.

Molly: I enjoyed our time, and thanks so much.

For more information about the Cancer Community Center:  www.cancercommunitycenter.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

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

By Val Walker

Introduction: Social Isolation is an Increasingly Important Topic

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

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

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

2. Mobility or sensory impairment

3. Major life transitions/losses.

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

5. Location (rural, unsafe or inaccessible neighborhoods)

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

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

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

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

Q&A with Dhruv Khular, M.D.

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

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

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

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

What can doctors do to help socially isolated patients?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Resources

More about Dhruv Khullar

Health Leads Program

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

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

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

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

Keep up with Val at www.HearteningResources.com

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.

Lani Peterson, Psy.D.

Director, City Mission's Public Voice

By Val Walker

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 Some questions we explore in our storytelling groups include:

• Who are you in your story?

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

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

•  Who needs to hear your story?

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

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

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

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

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

• Who was I before I became sick?

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

• Who helped me that I didn’t expect?

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

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

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

• Who do I want to thank?

• Who do I need to forgive?

• Who do I need to ask forgiveness from?

• What I am grateful for?

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

Have you also worked with doctors?

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

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

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

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

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

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

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

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

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

Afterthoughts: Lani’s Beautiful Takeaways

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

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

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

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

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

Resources

Lani Peterson's site

Boston City Mission

CHEIR at UMass Medical Center in Worcester

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

Keep up with Val at www.HearteningResources.com

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

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

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

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

You can check out the CommonHealth post here. 

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

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.

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.

For my first piece, I spoke with Dr. Sayantani DasGupta, a former professor of mine devoted to raising awareness in her students and in society about how to approach and honor illness narratives, and the intersections between narrative, health, and social justice.

Stories as Social Justice: An Interview with Sayantani DasGupta

“Stories are not the end goal, they’re not a treasure we dig up, they’re not a simple repository of facts, but rather, they’re a process. And listening to them is an act of social justice.”

- Dr. Sayantani DasGupta

Anyone who considers stories as central to healing swoons when listening to Dr. Sayantani DasGupta. I certainly did the first time I heard her speak, as my professor in an “Illness Narratives” class I took in Fall 2012 as a graduate student in Columbia University’s Narrative Medicine program. Sayantani’s passion for the power of story in medicine - which twinkles in her tone of voice and glitters in her eyes - is infectious.

Sayantani trained in pediatrics and earned a Master of Public Health, and now devotes her time to being a professor, writer, speaker, feminist, and mother. One of the things that most excites Sayantani is thinking about how gender, race, class, and other social factors influence how we tell the stories of our bodies.

In a recent conversation we had, she expressed concern that physicians tend to see stories as just “nice” instead of essential: “Physicians sometimes think, ‘Well, okay, that’s nice, but is it really necessary?’"

“Yes!” she insists. Through their stories, patients become contextualized in the wider system to which they belong. As Sayantani puts it, patients “are both a unique individual in this universe, and they are also not alone. They’re situated in a family, in a culture, in a community, in a social system, in a political system, in a labor system.” By listening to stories, physicians come to appreciate their patients as more than just parts and isolated disease carriers; they can see how the health of individuals is shaped by matters of social justice.

And Sayantani believes that when physicians hear patients’ stories, they are not only equipped to offer better care, but they are able to make major changes in healthcare: "The greatest potential for narrative work in healthcare is the ability of renewed attention to story to illuminate structural injustices in medicine as a profession, and healthcare as a system.”

She advises physicians to consider how "broader issues they’re thinking about, like health access, continuity of care, accurate diagnosis of treatment, long-term follow-up, are connected to narrative. If we simply think of narrative as something that feels good and is nice...then we rob it of its real power.”

It’s not only important that physicians listen to patients’ stories, it’s important how they listen. Sayantani believes that in order to provide the best healthcare, physicians must first engage in honest self-examination.

They can ask themselves: “What am I bringing to the table? What are my prejudices and expectations? What do I think about this person? Is it that they remind me of my Aunt Millie? Do I really hear their story well? Or do they frighten me and I don’t hear their story well?”

She also encourages physicians to listen with a sense of their own limitations, something she calls “narrative humility” - that we can approach stories without the assumption that we're going to always necessarily "get" all of it:

“The folks we take care of are not necessarily going to be just like us - they are very likely not going to be like us - and their stories are not something that we can become necessarily competent about.”

A medical student Sayantani once taught who had Multiple Sclerosis wrote a beautiful piece about her experience that captures the essence of narrative humility. The student wrote:

"As a patient, I urge every doctor to try and place him or herself in the patient’s shoes. Don’t stand by the foot of the bed and power over your patient. She feels small already. Take a minute, sit down, listen.”

She then offered a small piece of advice to medical practitioners reading her essay: “Try to understand. Realize that you will never understand. Try anyway.”

I shivered as Sayantani recounted these words, slowly and with reverence, and nodded in fervent agreement when she told me why she felt so moved by this simple but poignant piece:

“She’s talking about the practicalities of how to listen, but also about the inequality inherent in one person being ill, vulnerable, naked, and frightened, and the other being full of knowledge. It really brings home the social justice role and the healing role of storytelling in our work. Yes, we try to put ourselves in our patient’s shoes, but we have to be conscious of power. We also have to be conscious of what we bring to the table.”

The words echoed in our conversation, and still do in my heart:

"Try to understand. Realize that you will never understand. Try anyway.”

More about Sayantani:

Sayantani DasGupta originally trained in pediatrics and public health at Johns Hopkins University, and now serves as a core faculty member of the Program in Narrative Medicine at Columbia University. She also teaches in the Health Advocacy program at Sarah Lawrence College. In addition to being a prolific writer, she is a nationally recognized speaker on issues of gender, race, storytelling, and medical education. At Columbia, one of the classes she teaches is a Narrative, Health and Social Justice seminar, and she co-chairs a faculty seminar of the same name.

Website: http://www.sayantanidasgupta.com/

Blog: http://storiesaregoodmedicine.blogspot.com/

Our first Healing Story Session on March 5th, 2014, was a great success. Approximately 30 invited guests gathered to listen to LJ and Marie, two amazing women living with cancer, share their stories. Read more about this Session on WBUR's Commonhealth Blog and on Marie's blog Adventures in Spiritual Living.