A Conversation with Julie Norstrand, PhD, MSW, MSc

 INTRODUCTION

Back in January--in what seems like years before the pandemic invaded our lives--Julie Norstrand, an executive board member at the Newton Council on Aging, invited me to join a panel to discuss social isolation among older adults. Already, loneliness and isolation had been declared an epidemic according to AARP (Connect2Affect studies). Most Americans were beginning to be aware of the isolating forces in the lives of many seniors, especially those who lived alone (one in three people over age 65 live alone according to the US Census Bureau). This panel was to provide a public forum for the citizens of Newton to tackle loneliness and brainstorm on ways to increase the quality of the social lives of older adults.

I was keen to join Julie’s mission and sit on the panel at the Newton Free Library, scheduled for June 8th.  It was heartening to get to know her as we discussed our talking points --but suddenly, in the middle of March, the lockdown began, and all of our planning froze. We decided to pause for a few weeks. But Julie persisted in staying in touch to pull together the other panelists and organizers. We all marveled at the irony of our predicament: Now we ourselves are isolated and painfully aware of how our older loved ones were even more isolated. What could we do to break through the isolating forces of the pandemic, particularly in Newton? Julie’s determination led us through our planning and goalsetting, and her passion for the project was inspirational.

The panel was held on June 8th, and over sixty citizens of all ages attended.

As an eldercare consultant and a gerontology scholar, Julie has been aware for decades that older adults as they age “become increasingly invisible and isolated.” With the advent of the pandemic, she felt a call to action to organize a response in the Newton community. Indeed, before the panel at the library, Julie had been spearheading a group of Newton Council on Aging members to raise awareness of social isolation among older adults in the general community. Before the pandemic hit, Julie and her team had been standing at the library with brochures and ready to answer questions about this important topic. Unfortunately, due to the pandemic, this community activism had to stop. In an ongoing effort to tackle loneliness, along with her colleagues at Regis College, Julie recently started to develop a survey of older adults in Newton to assess how well organizations and individuals were reaching out to those most isolated.

She also runs her own consultancy, Help My Aging Parents, LLC, guiding her clients in how to juggle the havoc of the pandemic with all the other tasks of caregiving. Ultimately, the goal is to help families plan ahead for caregiving! Finally, Julie is also an adjunct professor in the social work program at Regis college where she teaches social work as well as gerontology courses. Teaching gerontology speaks to another of Julie’s missions which is to help students realize the enormous value that the aging population brings to our society; ultimately, to have more students enter the gerontological workforce.

I was shocked that Julie had the time to do an interview with me for HSC. I was eager to know what she thought about the effects of COVID-19 on the lives of older adults six months since the start of the pandemic (as of August 2020). Most of all, what could she tell us about how communities could take action in meeting the dire needs of seniors moving forward?

My Conversation with Julie

Val: What alarmed you about COVID and how it was affecting older adults?

Julie: It was quite apparent that there was tremendous anxiety and need for social contact among seniors. When the Newton Senior Center offered phone contact to them, we heard, “Yes please, I want a call back!” They were hungry for human contact. The need for contact becomes more poignant as you become older and more vulnerable.

I was also hearing from my clients, typically in their fifties or sixties, who had aging parents. I run a support group for adult caregivers through Zoom and was listening to their stories of how COVID had touched their lives. It was so painful for them because they felt so powerless about their parents. One daughter was so worried about her mother in an assisted living community because she could not see her in person (due to COVID visitor restrictions). She said her mother told her, “I don’t see the point of living.”

Some of my clients were in a terrible bind. For example, one daughter wanted to bring her mother home to live with her, but her husband was a physician—there was too much risk of her mother being exposed to COVID. This is the reality of so many families who want their parents to be home with them but worry about their safety.

I wondered what more could be done to promote quality of life during COVID at nursing homes and assisted living communities. There needs to be more interventions to create remote groups for social media and online communication. But this would entail more training and access to technical skills for older adults.

Val: Having worked recently in activities programs with seniors at assisted living communities, I know that during COVID there has frequently been a shortage of staff and unfortunately not enough time to teach seniors how to use social media or Zoom. So very tragic for those who are left out of the technical solutions.

Julie: One thing is certain as we move forward since the pandemic: Older adults will need better access to social media—particularly those who live in assisted living communities and nursing homes. There needs to be more effort put into training them for online communication. It should be easier to get access by creating remote groups. Our Aging in Place models are now looking at different social engagement interventions for a post COVID world.

On the bright side, baby boomers (adults in their sixties and seventies) tend to be more savvy about using social media and online social networks. Let’s hope that in the next few years, as boomers move into these communities, they will be more comfortable and resilient in building community online. But still, for people now in their eighties and nineties, this technical transition has been terribly difficult for them without the support they have needed during COVID.

Val: Even as a boomer myself, I don’t take to Zooming too well. I get fed up and exhausted with it. I am starving for more “warm fuzzies” from in-person human connection. I can only imagine how it feels to be eighty-five and hungry for human touch. 

Julie: But as I see it, sadly, this pandemic will last a long time, and there are likely to be more pandemics in the future. This pandemic has forced us to change the way we view social engagement—and older adults who live in nursing homes or assisted living communities will need a much better range of social activities online balanced alongside their in-person activities offline—in short, a good balance.

Val: Long before COVID, you were doing research on the benefits of social support for older adults. For over a decade, you have studied how important it is to prevent loneliness and isolation as we age. For example, socially isolated adults are more likely to develop Alzheimer’s, as well as develop heart disease. What got you started in this research?

Julie: About twenty years ago, I was a research assistant with the Philadelphia Corporation for Aging. Back in the early 2000s, we were involved with a team from New York City working on disaster preparedness planning. We knew of the dire consequences of heatwaves, such as in Chicago and Paris, where older adults were the most vulnerable. Specifically, single or widowed white men were more likely to die of heat exhaustion. Quite frankly, they did not know how to ask for help and get support—and it seemed to them that asking for help was a sign of weakness (but okay for their wives to ask for help.) They had previously relied on their wives or sisters to do all the reaching out as they had the social skills for this task. The men perished trying to tough it out all alone, trying to fend for themselves against the heatwave.

So, it all came down to this, as I saw it: Our rugged individualism and social stigma about asking for help was not a healthy approach to aging because we become more vulnerable as we age. We need to learn how to tap our communities, ask for help, talk openly about our needs, build social networks. This was my realization that building social capital was essential as we aged, and our communities could play a greater role in this (especially at removing the stigma against asking for help).

Val: You are now working on a survey for older adults coping with COVID-19 and aim to use the survey results to initiate a community response. Based on what you learned from the study during the Chicago heatwave—that some seniors are reluctant to reach out for help, or don’t know how—then, how are you planning to offer support in the midst of this pandemic?   

Julie: I am now in talks with my colleagues at Regis College in developing a survey for older adults in Newton. We will be mailing out surveys to adults aged 75 and older in October.  Our surveys will entail 20 to 30 questions. We will be asking how they are coping during COVID-19. It is a nuanced assessment that looks at: how adults are coping, the services and outreach that they have been receiving, the extent to which needs are met, and who they have been reaching out to receive and provide help, and how they are spending their time on a daily basis. Furthermore, a subset of these respondents will also receive friendly phone calls from a Regis college student over a four to five month period. It is hoped these friendly calls will provide some emotional support and friendship during these difficult months ahead.

Val: That sounds really helpful. It makes so much sense that you are giving seniors a chance to spell out exactly who is helping them and how they are helping. Specifics are vital here. And even the reluctant folks (proud, “rugged individualists”) have the opportunity to identify what they need without coming off as too “needy.” I also love the idea of the Regis students, mostly young Gen Zs, chatting with the eighty-year-olds.

Julie: Yes, and some of those students are feeling scared, left out, and lonely themselves. The older adults can share their life’s experiences to comfort and encourage the students—and that makes them feel relevant.

Val: Right, feeling relevant. Researchers studying loneliness have often reported on the importance of having meaningful conversations to alleviate loneliness. But--now that you say the word “relevant”--I can see how older adults yearn to be relevant to others, and this is what gives them meaning.

Julie:  Yes, that’s right. The most resilient older adults I studied were the ones who still felt relevant to others. Not only do older adults want to be needed, they want to feel relevant to others.

When studying social capital with older adults as part of my dissertation, what mattered was the quality of the relationships they had, not just the number of contacts. The key to their emotional and physical health was the quality of their connections. So, in considering how to increase social engagement for older adults, we need to ask the question: How can we help to make them feel more relevant?

Val: I imagine you ask your clients that very same question:  How can they make their parents feel more relevant? Can you tell me more about your consultancy, Help My Aging Parents?

Julie: Yes, I do ask that question a lot. But, more fundamentally, I help my clients plan ahead and think out loud. To have serious conversations about the future of their loved one.

I provide eldercare consultation to individuals and families who are increasingly concerned about the well-being of an aging relative, but do not know how to “step in.” After a thorough consultation, an effective action plan is developed, tailored to the aging relative’s needs and wishes.

It all comes down to thinking ahead. Being proactive, not reactive.

It’s better to plan ahead and consider options when you are not in the middle of a medical crisis. There is no reason to be caught with financial hurt and emotional hurt in a messy situation that could have been avoided with good planning. Ultimately, you know your parent will need assistance at some point, and the whole experience is just so much more positive if you are ready.

And best of all, sometimes, having an honest conversation about caregiving can actually bring the parent emotionally closer with their adult children. I encourage my clients to speak from their hearts about what is on their minds.

Val: Hopefully, that honesty can open doors—if it’s expressed with genuine love. It’s really sad that in our society we tend to put off having those deeper heart-to-hearts, especially about what we need and desire as we become more vulnerable in our aging process. Julie, the work you do is so vital. You empower family members to “go there” to the hard topics and scenarios that we often dread talking about. And your research and insights are valuable. I am so pleased we could talk today. Thank you very much.

And, oh yes, please keep me posted on how the survey is going.

Julie: I certainly will. This was a lovely chat, and I appreciate your time. Thank you.

MORE ABOUT JULIE NORSTRAND

Julie’s Consultancy, Help My Aging Parents: www.helpmyagingparents.net

Julie has worked in the field of aging for the last fifteen years by serving in the clinical, academic, and research domains of gerontology. Her academic qualifications include a PhD in Social Work, Master’s in Social Work, and a Master’s in Clinical Psychology. She is extensively experienced in assessing individual older adults and the environments in which they live, having worked in hospital and community settings as well as serving on various boards focused on aging-related issues. Her research has specialized in examining the role of community life of older adults and age-friendly communities.

Julie is a native of Denmark, and lives in Newton with her husband and son. She currently serves as an adjunct faculty member at Regis College and runs her consultancy, Help My Aging Parents, LLC, providing guidance to families about their caregiving needs for their aging relatives.

Julie’s philosophy: “Since coming to America in 1995 I have gained the appreciation of the value of older adults in our communities. Sadly, too often older adults, as they age, become increasingly invisible and isolated. This is tragic. We as children of our aging parents have a moral responsibility to ensure that we maximize the quality of their lives by giving them a meaningful and safe environment to grow old in.”

Peer-Reviewed Publications

·      Ring, L., Glicksman, A., Kleban, M. & Norstrand, J. (2017) The future of age friendly: Building a more inclusive model using principles of ecology and social capital. J of Housing for the Elderly, 31(2), 117-129

·      Xu, Q., Norstrand, J.A. & Du, Y. (2016). Effects of living alone on social capital and health among older adults in China. Int J Aging Hum Dev. Advance online publication. doi: 10.1177/0091415015624419.

·      Norstrand, J.A. & Glicksman, A. (2015). Influence of living arrangements of community dwelling older adults on the association between social capital and health. In F. Nyqvist & A.K. Forsman (Eds.) Social capital and health among older people: the meaning of community and context (pp. 89-109) NY: Springer.

·      Norstrand, J.A. & Chan, K. (2014). The relationship between health and community across aging cohorts. J Aging Research, Article ID 626097, 10 pages.

·      Norstrand, J.A., Glickman, A., Lubben, J., Kleban, M. (2012). The role of the social environment on physical and mental health of older adults. J Housing for Elderly, 26(1-3), 290-307.

Val Walker, MS, is a contributing blogger for Psychology Today and the author of The Art of Comforting (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 new book, 400 Friends and No One to Call: Breaking Through Isolation and Building Community, was released in March, 2020, with Central Recovery Press. Learn more at www.valwalkerauthor.com

A Q&A with Diane Atwood, Founder of Catching Health, and the Conversations about Aging Podcast

Val Walker

Diane Atwood was a health reporter at WCSH-TV for more than twenty years, and later a marketing and public relations manager for Mercy Hospital in Portland, Maine. She is now a full-time blogger and podcaster on health issues, specializing on aging and isolation. Diane Atwood is the founder of Catching Health, and the podcast, Conversations about Aging. She describes her mission as “Health reporting that makes a difference.”

Introduction

Diane Atwood is a master interviewer, profiler, and journalist, well-known in Maine for her deep and richly detailed conversations with her interviewees on her blog and podcasts. I was honored that she recently interviewed me about the release of my new book, 400 Friends and No One to Call.

Indeed, it was Diane’s interview with me that inspired me to interview her. She was, quite frankly, a wise and seasoned interviewer who could teach me and others about her craft.  I have always found profiling and interviewing people to be a fine art—particularly if we could capture the essence of that individual through their stories revealed through thoughtful and leisurely paced conversations. I have a story to tell about how Diane interviewed me, as it sheds light on how she works her magic in these times of rushed and fragmented conversations in our digital age.

On March 18th, the day of my interview, everyone in the Northeastern US was scrambling to prepare for their COVID-19 lock down. I was in the throes of adjusting to (and grieving) the drastic loss of dozens of speaking engagements, book signings and classes—indeed, the loss of my business-- and a terrible time to release a new book! I hardly wanted to be interviewed at all, as I still had not had time to wrap my mind around how COVID-19 had radically changed the meaning of my book, if not the magnitude of my book’s message about loneliness and isolation. I didn’t feel prepared to speak confidently about breaking out of isolation because I was clueless about how I would pay my rent next month. How dare I speak as an expert on social isolation and loneliness when I felt cut off from my clients, networks, colleagues, and friends who were all as isolated as I was?

But within minutes of our phone call, Diane put me at ease, welcoming my book into the world, inviting me to tell my story--the good, the bad, and the lonely--about why I wrote my book and what my message meant during these pandemic times. Her steady and friendly approach, gently probing, permitted me to trust her judgment and guidance as we delved into profound storytelling. Diane’s deep exploration helped me grasp a new perspective of my book’s message in times of social distancing, giving me a clear vision of how my book was going to help people survive isolating times. Her Q&A with me etched out the ways my life’s work was meaningful and vital at this time, and I am deeply grateful for her gift as an interviewer, profiler and storyteller. Her interview with me left me with a beautifully unique portrait of my essence and my life’s purpose, not just a description of my book.

With this first-hand experience of being her interviewee, I can attest to how Diane shares her gift with older seniors who are eager to have their life story told and their vibrant essence celebrated and shared. Her podcast series, Conversations about Aging, reflects her passion and dedication.

A Q&A with Diane Atwood

Val: What got you interested in doing interviews with seniors in their homes?

Diane: A couple of years ago, I went to a conference about the isolation and loneliness of seniors in rural Maine to report on this topic. I already knew that loneliness was deeply entrenched in rural society. After attending the conference, alarmed about seniors living alone in the empty, sparsely populated landscapes of Maine, I felt a call to visit seniors in their homes--just to engage them in conversation, storytelling and reminiscing. Perhaps I could help them feel less lonely this way. It was clear seniors needed meaningful and personalized conversation, and they longed to share their life experiences with others. I decided to start a podcast where I could post interviews with people over age sixty, calling it Conversations about Aging. And further, having deep, long conversations for up to two hours might be particularly rewarding—mutually speaking.

Diane with interviewee, Wayne Newell

Val:  What do you especially enjoy about interviewing seniors and creating podcasts of their stories?

Diane: I love it when I ask someone, ‘Tell me about your life,’ and suddenly our conversation takes on a life of its own! Our conversations are adventures, and, as the one asking the questions, I have the power to steer the adventure, like a guide through their exploration of their life. My passion for interviewing people is to help them find meaning in their stories. This is how I feel I am making a difference. I believe people are starving to share, on a personal level, what matters about their lives. I love to see their eyes light up, and then our conversation deepens, bringing their past up to the present.

After I have arrived at their home and settled into asking questions, I have often heard them remark, ‘Nobody’s ever asked me these kinds of questions before.’ They usually are surprised at first. But they appreciate my interest in them, and they seem to like that I’m not afraid to ask them personal questions that typically didn’t fit daily chatter.

Val: What kinds of questions do you ask?

Diane: One of my favorite things to ask is, ‘What makes it a good day for you?’ I’ve heard answers such as, ‘What makes a good day for me is just to hear the birds.’ Or, ‘That I have someone to show my pictures to.’ Or, ‘That I have another day to look forward to.’

And so many are grateful to see me, and tell me, ‘Thank you for travelling so far to hear my story.’

Another question I ask is, ‘Do you feel lonely?’ It’s astounding the range of answers I get. I have found that isolation is not always the cause of loneliness. You can have lots of people around and plenty to do but still feel isolated. Or you can live days and weeks completely alone and enjoy your own company alongside the comfort of nature and animals.

One woman in her 90s who lives alone in rural Maine remarked, ‘I enjoy my own company surrounded by beautiful memories.’ She loves her quiet life of solitude.

On the other hand, I spoke with a man in an assisted living community who had plenty to do every day, but still felt lonely. His one, painful reason for being lonely was that he could not interact with his kids as often as he’d like.

I believe loneliness has more to do with a lack of meaningful connection in our lives.

Val: Yes, I so agree that meaningful connections are essential as we age. What do you believe fosters meaningful connections?

Diane: First of all, just look at all the losses in their lives.  Loss of friends, family, work—and all the ways we have maintained structure throughout our lives, especially through rituals and routines—these have disappeared. They have lost their patterns of behavior with their daily routines, no matter how small. Perhaps, they had been meeting at their churches, their local coffee shops with their friends, taking daily walks with their dog in their neighborhood park, going to regular events such as birthdays, anniversaries, holidays. Their rituals have provided meaningful connections for them for decades. But suddenly, those rituals and routines are gone, and they must somehow find a replacement, even in an assisted living community or nursing home. Or in your own home without being able to access what you used to do.

But here’s the most tragic part: It seems no one is interested in your story these days, in our rushed, distracted society. It seems there is never the right time to share your story because there is a lack of rituals and routines that can provide the structure to have long and rich conversations. Seniors often lose these opportunities just to tell their stories, to have the time and undivided attention without being hurried or interrupted. You can have lots of people around and plenty to do but still feel isolated, just because our lives feel meaningless.

Val: Besides asking good questions, what are other ways you spark conversations?

Diane: I think the mere fact that I am interested in someone’s story provides the most potent spark.

For instance, I had a blast with a Passamaquoddy Indian man named Wayne Newell, whom I interviewed in Princeton, Maine, where he lives with his wife Sandy on the Indian Township reservation. (Wayne prefers to call himself Passamaquoddy Indian rather than native American.)  Wayne, age seventy-seven, is blind and dependent on oxygen from a tank. When I visited him, he was recovering from pneumonia, but said he was so looking forward to our conversation he didn’t want to cancel. He was worried about his voice not being a strong as usual, but we ended up talking for about two hours. I was captivated by his stories of growing up on the reservation, the many challenges he has faced, and how he was able to get a Master’s degree from Harvard. 

People are often eager to share not only what they have accomplished, but also what they are still accomplishing. For example, Ernie DeRaps, who’s in his 90s, was once a lighthouse keeper. When he retired at age eighty, he began painting lighthouses. He showed me his collection down in his basement. It was an honor to spend time viewing his paintings. Every single painting of each lighthouse had its own story.

Ernie DeRaps

Val: I notice with your podcast, Conversations about Aging, you typically describe in great detail the landscape of where your interviewee lives. I find that interesting--as if the place where the person lives is part of what defines the individual’s character.

Diane: Yes, I always describe the landscape of where we are in the podcasts. Wayne, for example, spoke about the lake by his home. Listeners of his podcast can learn of his sense of identity through this lake, his connection to this particular place, his sense of history and belonging through the world of this lake. Or through stories of his life on a reservation.

Val: It seems the detailed and colorful descriptions of where your interviewees live help to segue so beautifully into their life stories.

Diane: And here in Maine, in rural settings, it is essential to let your interviewee know that you are noticing these things about their home, about their town, about the woods or the lake or the area. It not only helps them feel comfortable with you, it is a sign of respect and honor.

Val: Do your interviewees like to have their story shared as a podcast and published?

Diane: Not necessarily—some do, and some don’t. Sometimes they don’t respond at all to their podcast once it is up on my website. Some of my interviewees are satisfied just with our conversation itself. One of my interviewees, Leona Chasse, told me, ‘I enjoyed this so much—just the conversation.’

Val: But what a tremendous gift you are giving them, Diane. They are so fortunate to have you there with them.

Diane: This work gives my life meaning. I love synthesizing all the disparate information from my visits to their homes and from their memories. Gathering all the information from our interactions, stories, photos, and natural landscapes—somehow, I try to capture the essence of that person.

Val: And you do that, brilliantly. Thank you for sharing your wisdom with Health Story Collaborative today. We are all storytellers here and you have helped us appreciate even more the power of harnessing our stories.

Diane: I’ve enjoyed it. Thank you.

To learn more about Diane Atwood and her work, please visit www.dianeatwood.com

Val Walker, MS, is a contributing blogger for Psychology Today and the author of The Art of Comforting (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 new book, 400 Friends and No One to Call: Breaking Through Isolation and Building Community, was released in March, 2020, with Central Recovery Press. Learn more 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

An Interview with Marisa Renee Lee

By Val Walker

No matter how difficult her day might have been, Marisa’s best bet for beating the blues is to read stories of people helping others. She loves to learn how people turned empathy into action with kindness, thoughtfulness and resourcefulness. Following her passion, Marisa and her friend, Jackie Scharnick, launched a website in 2018 called Supportal which is dedicated to publishing first-hand accounts of friends helping friends who are experiencing life-changing challenges. Supportal is devoted to celebrating the infinitely possible ways that empathy calls us into action--as caregivers, as comforters and as wonderful friends. In short, as Supportal’s tagline says, “Being there starts here.”

About Marisa

Marisa Renee Lee is a graduate of Harvard College and an avid Green Bay Packers fan. She resides in Falls Church, Virginia with her husband Matt and their dog Sadie.

In 2007, Marisa founded The Pink Agenda, a breast cancer non-profit, in honor of her mother Lisa. Almost a decade later, The Pink Agenda is now a national organization of young professionals committed to raising money for breast cancer research and direct care service programs in partnership with The Breast Cancer Research Foundation. 

Today Marisa is a cross-sector leader dedicated to engaging the private sector to help solve public problems. In addition to her work on Supportal, Marisa runs a social impact firm that allows her to support a variety of institutions on organizational design and development, public-private partnership strategies, change management, and stakeholder engagement. Until 2017 Marisa served as the Managing Director of the My Brother’s Keeper Alliance (MBK Alliance), a nonprofit born out of President Obama's call to action to address the barriers to success that boys and young men of color (BYMOC) disproportionately face along the life path. Through her work with MBK Alliance, Marisa leads a collaborative, cross-sectoral movement that unites business, philanthropy, nonprofit, and community leaders, to increase pathways of opportunity for BYMOC.

 Photo: Marisa with her mother

About Supportal 
 

Supportal’s mission is to show people how to turn empathy into action. Marisa learned much about the wisdom of empathy at a young age as her mother’s primary caregiver as she struggled with multiple sclerosis and eventually succumbed to breast cancer. She and her friend, Jackie Scharmick, a survivor of leukemia, founded Supportal to help others cope with demanding ordeals where we find ourselves strapped, isolated and overwhelmed. Marisa and Jackie are committed to ensuring that “no one will have to go it alone.

A Conversation with Marisa

Val: What brings you joy in your work with Supportal?

Marisa: Supportal’s mission gives me joy: Helping people help others. I love reading people's stories of kindness, thoughtfulness, and comfort. Supportal gathers stories of people helping others who are going through hard times. It brings me joy to know that good things are happening out there, and that people are really showing up, not just making vague promises. People need encouragement, but they also need to celebrate the action that has been taken—the difference it has made in their lives. We need to celebrate empathy in action.

Val: How do you see the internet and social media helping to bring people together around difficult issues such as illness, grief, loneliness, or other losses?

Marisa: One simple example: My friend from years ago shared his story on Facebook Messenger about losing his father. I hadn’t heard from him for so very long, and I didn’t know he’d lost his father, the only living parent he had in his life. It was great to hear from him that all of my sharing about grief and loss made him feel less alone in his own grief. It reminded me that the online spaces—Supportal, social media, etc., can be a great way for people to find connection with others going through similar experiences. No one needs to be alone.

Val: Do you think the internet and social media can cause social isolation?

Marisa: If young people, especially children and teens, are onscreen too much of the time, I think it can be damaging for their social development and limits their social skills—just being able to have conversations. Also, social media can set us up to believe in unrealistic expectations--standards that we can never live up to. It's isolating to feel that we aren't living the way we think we are "supposed" to be living. That’s why I think it’s important for us to share real stories online like the ones found on Supportal. So, yes, there can be a downside to social media, but at the same time it can play an important role in bringing people together. It really is all a balancing act.

Val: What is in store for Supportal?

Marisa: I'm developing Supportal to be a one-stop-shop for what to do when something bad happens to someone you care about. If someone we love suffers from a divorce, a miscarriage, a job loss, or a death, what can we say and do? How can we help? Supportal provides readers with first-hand accounts of people who have been through a life-changing challenge and share what helped them most. We provide ideas for gifts, goods, services, and practical tips for how to show up for those in need.

Val: It’s heartening that Supportal teaches us through stories that show us how to support people in distress. There’s nothing like real-life experience for how to comfort others!

Marisa: Right. Stories are wonderful for giving examples of empathy in action, how to respond to our friends and loved ones who are in difficult circumstances. Stories have a way of showing us what to do. Stories are about challenges and how we face them—but we don’t have to be alone facing those challenges-- let’s celebrate the ways we are supported by others! That’s why I co-created Supportal. We don’t have to do it all alone.

Val: Thanks for sharing your time with us! 

Marisa: Thank you--this was fun!

More about Marisa

Marisa’s background is remarkably extensive, and I would like to share more here

In 2010, Marisa joined the U.S. Small Business Administration (SBA) as an appointee in the Obama Administration. During that time, she was able to begin to combine her passion for service with her finance and small business background. At the SBA, Marisa focused on entrepreneurship and access to capital in underserved communities. Marisa supported the Agency’s program offices on outreach, restructuring and creating new lending programs, and the formulation and implementation of policies to promote entrepreneurship. Marisa also coordinated minority business engagement activities across the Obama Administration. Additionally, Marisa spearheaded a series of Urban Economic Forums co-hosted by the White House and the SBA. These forums connected thousands of urban entrepreneurs to public, non-profit, and private sector business development resources.

In 2013, Marisa accepted a position with the White House Domestic Policy Council as a Senior Policy Advisor for Urban Affairs and Economic Mobility. Marisa directed all engagement efforts for the President’s Ladders of Opportunity and Promise Zones initiatives. Marisa later served as Deputy Director of Private Sector Engagement at the White House where she oversaw public-private partnerships and relationships with the business community on behalf of President Obama.

In 2016, Marisa was recognized in the Chronicle of Philanthropy 40 Under 40 as a “Rabble Rouser for Obama.” In 2017 she was named a member of the Ebony Power 100 amongst other Community Crusaders she greatly admires. In 2018 she was a contributing author to the book Modern Loss, a series of candid stories and illustrations on grief. In addition, she has been a featured speaker at several forums including SXSW. Marisa has also written op-eds on race, opportunity, and economic mobility for CNN, Philanthropy News Digest, News One, and other outlets.

Resources

Supportal

My Brother’s Keeper Alli

The Pink Agenda

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 Dr. Anne Hallward

By Val Walker

ABOUT DR. ANNE HALLWARD

Dr. Anne Hallward is the host and founder of Safe Space Radio and a board-certified psychiatrist in Portland, Maine. Anne’s interest in difficult subjects began in her teens, when she noticed how few adults around her seemed to be talking about intimate or difficult subjects. Formerly on the faculty at Harvard Medical School and Cambridge Hospital, she designed and taught courses on death and dying, cultural competence, sexuality, and psychiatric interviewing, and has published on death and dying, cultural bias in medicine, sexuality, and hunger in the Philippines and Bangladesh. Anne is the recipient of the Ulrich B. Jacobsohn Lifetime Achievement Award from the Maine Association of Psychiatric Physicians, the Jeanne Spurlock Social Justice Award from the Association of Women Psychiatrists, and the Exemplary Psychiatrist Award from the National Alliance on Mental Illness (NAMI). She has also been recognized for her work in radio with a Gracie Award for Best Host of a Local Radio Show. Anne speaks internationally on stigma and shame, traumatic silence, and voluntary vulnerability as a form of leadership.

INTRODUCTION: WHY I WANTED TO TALK WITH ANNE

Could there be anything lonelier than not being able to talk about something terribly difficult—something that no one feels safe talking about? One of the greatest causes of social isolation is carrying the burden of stigma, shame or silence. We need safe spaces, or safe people, for sharing what is keeping us isolated and ashamed. Safe spaces are essential to breaking through the walls of isolation. I’d heard of Safe Space Radio in the years I’d lived in Maine yet had never listened to it until I moved to Boston a few years ago. Anne Hallward, a psychiatrist, was the host, so I’d wrongly assumed it was for issues about mental illness until I recently discovered it’s for talking about anything that’s hard to talk about.

The first thing I saw on Anne’s website for Safe Space Radio says it all: The show about the subjects we'd struggle with less if we could talk about them more. Heartened after reading her engagingly informative website and listening to a podcast, I reached out to her, first with an email, and then with a phone call. She graciously answered, and we spoke right away.

I was grateful that Anne could take time for an in-depth conversation about what it takes to create a safe space, and how safe spaces help us break through isolation. Our conversation alone was powerful enough to give me a boost to be more courageous in “going there” with the topics we usually shy away from. After speaking with Anne, I have a new motto: Courage is contagious.

INTERVIEW WITH DR. ANNE HALLWARD

Val: Since launching Safe Space Radio in 2008, you've interviewed hundreds of guests. Though you’ve covered a wide range of compelling topics, has there been a common, prevailing message from all your guests through the years?

Anne: Yes, there is a common message. People have a wish to turn their struggles into a gift for others. They give voice to hidden and silenced stories in order to help others. We started out with a focus on reducing the stigma of mental illness, so I talked with many people who had struggled with depression,  anxiety, or addiction.  Each guest wanted to share their story because they didn’t want others to feel as alone as they had.  They wanted to help to reduce shame and stigma.  Soon we began to include a much wider range of topics including homophobia, racism, sexuality and death and dying, and each guest brought the hope that the story of their struggle could be freeing to others.

Val: Because we all have a sense of what a safe space means, I would love to know what safety means to you.

Anne: I used to think that safety referred to the absence of physical threat. But now I think of it more internally, as the feeling of being able to be fully oneself. A common threat to a sense of safety is shame, and the forces, both internal and external, that tell us that we are not good enough.

So, safety begins inside ourselves and then extends to our personal relationships, our communities, our culture, and our nation.

Safety means being able to reveal our whole selves to each other and that entails two important things: feeling able to share our vulnerability as well as our strengths. The invisibility of either side is painful, so being safe means we are free to express both parts of ourselves. For example, when thinking of refugees, we often only see their suffering and don’t see their gifts. They had to flee their country, arriving here as people of color, needing help. The lens of a stereotype can blind us to their extraordinary gifts. For women, and people of color, and those with disabilities and other marginalized identities, safety is not only about honoring difference and vulnerability, it is about seeing and respecting strength.

Sharing our vulnerabilities as well as our gifts also applies to the topic of asking for help. I’ve learned from my guests that we avoid asking for help because we are afraid that our needs will define us. We fear that people will only know us through our needs or vulnerabilities. Indeed, if either our gifts or our vulnerabilities are invisible, it’s very painful. If I trust that you can hold both sides of me in your mind, and we can fully know each other—then that’s what safety means.

Val: I’ve never thought of safety in that way—to be able to show our vulnerabilities as well as our gifts. So, when you have a guest on your show sharing a painful ordeal in her life that was stigmatized and shamed, her strengths still shine through.

But, speaking of stigma, can we ever get rid of it?

Anne: Erving Goffman (a well-known sociologist) says, “Stigma is a sense of spoiled identity that you cannot wash off.” That’s why we need to share our strengths at the same time we share our vulnerabilities, so the needs don’t end up defining us in a stigmatized way. We need to see each person as whole. Safe Space Radio is one public health approach to fostering greater empathy and understanding in order to reduce stigma. As the famous gay activist, Harvey Milk, once said, “This is how the revolution will happen, one lonely teenager at a time.” Each time someone dares to come forward publicly with a silenced story, the culture shifts incrementally.

Val: Your message is powerful. But what if we are socially isolated and don’t have a safe person to turn to? To confide in?

Anne: Therapy has a tremendous value here. Many of us have had painful experiences of trying to share our vulnerability with someone, and feeling judged or rejected, so we might be understandably afraid to make ourselves vulnerable again and could benefit from a therapist with whom we can practice being vulnerable. Support groups are also spaces to practice being vulnerable. If there are no support groups that you feel you can belong to, then you could start your own. For example, Alyson Thompson, a biracial woman in St. Louis was struggling with feeling left out, isolated and feeling like there was nowhere she belonged.  She created a monthly meet up group through Facebook, called “Mixed Feelings” which has attracted a large group of other biracial folks in her area.

Val: That’s a great name for her group. Facebook was an ideal way for Alyson to launch her group. But looking at social media overall, do you think it decreases social isolation or increases it?

Anne: Social media can go both ways. It can bring people together (as it did for Alyson), but it also can be isolating because comparing ourselves to others can be a source of great loneliness. Research on social media is not my area of expertise, but social media seems to perpetuate “in your face” comparing of ourselves with others which can make us feel inadequate and alone.

Val: What inspired you to start Safe Space Radio?

Anne: From a young age, I’ve always been hungry to talk about the things that weren’t named--topics that were avoided and kept secret. When I was in medical school doing my pediatric rotation, I watched children being held down while tubes were being put in them, and watching their distress really troubled me. Of course, these procedures were necessary and life-saving, and were done with the best intentions, but it still troubled me, and I wanted to find out more. I began doing research on this topic, as well as research with my own medical records from my childhood.

I made a discovery. I found out that I was hospitalized for a serious infection as a toddler of 18 months and isolated for 10 days on an infectious disease unit. My mother had just given birth to my younger sister and was not allowed to visit me for those 10 days. This was a traumatic experience for me, and I had many nightmares throughout my childhood. Yet no one ever spoke about this. Childhood medical traumas like these are often unrecognized, because the intention of the doctor is to help the child. But from the perspective of the child, the experience may feel akin to assault.

But thank goodness for my medical records, and for medical school that uncovered what had happened to me! I felt a great sense of relief that my early experiences could be named. And I felt a deep passion to humanize our patient experiences by sharing our stories. I now ask new patients about medical trauma whenever I take a trauma history, and this has brought up so many stories of suffering that the person hadn’t fully understood or recognized as being legitimate trauma. I began a research project by interviewing women with a history of childhood medical procedures, measuring the long-term psychological consequences. The surprise to me was how grateful they each were to have their struggles validated, and how eager they were to let me use their stories to try to change and humanize medical practice. The experience of living with the shame of a silenced story, then discovering the power of telling it for my own healing and the healing of others inspired me to begin Safe Space Radio.

Val: That is an amazing story, Anne. It must have been so frightening at 18 months old to be isolated in a hospital room, separated from your mother among strange people in white coats doing painful procedures. It’s so important to tell this story.

Anne: I would like to share something I learned from guests on my show about what it takes to tell our stories. I used to think my role as the host was to create a really safe space so my guests could tell their most courageous story. But over the years, I’ve learned that I had it backwards; it was their courage that creates that safety for others and for our listeners. Where there is safety, there is someone who has had the generosity to make it so through their own courage.

When I was interviewing Ebrahim Rasool of the Truth and Reconciliation Commission of South Africa, he told me a story about the role that psychiatrists can play in fostering courage. He said people who had been tortured were offered an opportunity to see a psychiatrist before they gave their testimony to the commission. The role of the psychiatrist was to foster their courage, to help them tell their story and give voice to their silenced trauma.  He called this the work of “en-couragement.”  He told me that we should always think of the word en-courage as having a hyphen. He taught me that hearing the stories of others and being taken seriously when we dare to speak foster our courage. Courage is contagious. Learning about the meaning of en-couragement transformed my work as a clinician. An important part of my role as a psychiatrist is to foster courage.

Val: It rings so true when you say courage is contagious. We can foster courage in each other by telling our stories. That’s why Safe Space Radio is so powerful. I’m wondering what topics you will be covering this fall? Any new initiatives?

Anne: We are now in conversations with WBUR to be our distribution partner to NPR stations nationwide. We are creating a 4-part series that covers topics that are hard to talk about. The first show is called Apologies. What do we need to make our apologies truly healing? The second show is Asking for Help. We often underestimate people’s willingness to help and miss opportunities to be supported by others. Our third show is called Loneliness. How can we reduce the stigma and shame about loneliness? And finally, the fourth topic is Talking to Kids about Race and Racism. White people tend to feel awkward about this topic. How can we find useful ways to help kids understand and begin to address the disparities they see around them without reinforcing stereotypes?

Val: We could learn so much from courageous conversations about these topics. Anne, you’ve opened my eyes about what a safe space really means and about how our stories foster courage in ourselves and one another. People like you encourage us to be brave and to speak about the unspeakable things.

Thanks so much for your time today.

Anne: Thank you. I enjoyed our time.

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

Another Conversation with Robyn Houston-Bean, Founder and Director, The Sun Will Rise Foundation

By Val Walker

In our first interview, Robyn shared how the support from her grief counselor, her friends, and her support group had all helped to hold her through her darkest months after her son’s overdose.

Nearly a year after his death, she discovered that community action was her path to healing, and started her own support group in Braintree, MA. Soon she launched The Sun Will Rise Foundation. Her insights about how support groups and community service can empower us after a tragedy sparked a whole new conversation.

Val: Can you describe what gave you a sense of purpose a few months after Nick’s death?

Robyn: After a few months of grieving, I attended an event with a group called Hand Delivered Hope that does street outreach for those living with active addiction and who call the streets home. Joining in with other families and feeling so welcomed and accepted, it suddenly struck me that I had a sense of purpose: My child was not here anymore, but I could help another child. Although my Nick wasn’t here, someone else’s child needed my love and support. This warm, friendly group and others, such as Let It Out and The Boston Grief Group, inspired me and gave me strength to start my own group in Braintree. I knew we needed a grief support group closer to where I lived because I finally realized the scope of all this grief out there in the world. It’s so important that support groups are convenient for local people to meet and come together easily. We need people to understand us and validate our feelings, so we don’t have to make excuses for our tears and our laughter.

Val: I would love to learn more about how helping others is healing for you.

Robyn:  To put it simply, helping others helps me. I know that if I didn’t go down the path of helping others, I would be at a different place with my grief. Helping others forces me to step out of my own pain and hear and feel the grief of others. The group members are so appreciative to have a place to put their grief. Nick was so compassionate and caring, and each time someone is helped with our group, I know he is smiling down on me.

Val: It amazes me that you went straight to the Braintree Town Hall to ask about starting a support group. How did this happen?

Robyn: I knew a person who worked for the mayor, so I floated the idea of having a group at the town hall. Right away that person thought it was a great thing for our town to do. What a perfect way to say “no” to the stigma about the opioid crisis by having this group right at the Braintree Town Hall! After the group was going for a while, we had our first fundraiser for the foundation right there at the town hall. We have been lucky because not all communities have embraced the idea that substance use disorder can happen to anyone, and that we all need to work together to help prevent it.

Val: What was it like learning to be a group facilitator?

Robyn: I doubted myself very much at the beginning, but I received such great support from some of the facilitators. My doubts were erased very quickly. Figuring out the logistics, learning about facilitating, getting the word out so people in grief could find a tribe—all this kept my mind busy and kept me going in the early days.

Val: How is having a purpose contagious with other families affected by the opioid epidemic?

Robyn: I'm amazed how powerful it can be when people who are usually on the margins are given a voice. Grieving is hard enough, but on top of that, it’s a stigmatizing death, and it can cause people to focus inward and avoid dealing with day to day life.  It can cause grievers to be left alone in their grief by friends and a community that doesn't know how to deal with loss. Being part of our community, a place where people are safe to explore their feelings no matter what, a place where we can share anger, confusion, sadness, hopelessness, guilt and not be judged is a powerful thing. Having someone there to say, "Me too, I've felt that way" can really make a huge difference in our lives. Once you know you aren't alone, that there are hundreds of people out there who have felt your pain and have survived-- not only survived but lived again after loss--can be an incredibly healing realization.

Here are some ways that support groups have helped to turn grief into action:

• People build new friendships.

• They advocate for change in their own towns.

• They work to change laws.

• They gather together in prevention activities.

• They support the newest members of the group.

• They find their voice again.

I'm so glad the people who led the path before me gave me my voice, and that I have played some small part to help others find theirs.

Val: Robyn, you have been so generous with your passion and wisdom. Thanks so very much for all you have done.

Robyn: Thank you for giving me this opportunity to talk with the Health Story Collaborative.

Recommended Resources

• Robyn’s Foundation, The Sun Will Rise

• Team Sharing Inc., a national organization of parents who have lost children

• GRASP: Grief Recovery After a Substance Passing

• Hand Delivered Hope, Boston 

• The Opioid Project, created by Annie Brewster, MD, and artist, Nancy Marks

• Robyn Talking about Her Son, Nick, recorded on the Opioid Project

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 Robyn Houston-Bean, Founder, The Sun Will Rise Foundation

By Val Walker

INTRODUCTION

Robyn Houston-Bean lives in Braintree, MA, and manages an insurance agency for four days a week. She is married to John Bean, a sheet metal worker, and has a daughter, Olivia, age 25, and a son, Jake, age 21. Amazingly, around her demanding business and the needs of her family, Robyn runs a dynamic, fast-growing organization, The Sun Will Rise, dedicated to serving families affected by the Opioid epidemic.

Three years ago, Robyn’s oldest son, Nick, died of an opioid overdose. Just one year after his death, finding a way to channel her grief, Robyn began building her foundation in honor of her son, and soon engaged hundreds of families with support groups, inspirational talks, and fundraising events.

I wanted to understand how Robyn was able to express her grief through community activism, and more deeply, to explore how she found comfort, understanding and support for her grief.

One grey morning in February, I enjoyed a rich, two-hour interview with Robyn. Her candid insights about how grief isolated her, and what it took to break through isolation and turn to others was a powerful story in itself. She didn’t hold back from “going there” to describe her first devasting weeks after Nick’s death. Her story is so compelling and important that I have written her interview in two parts. Part One is about how she broke out of the isolation of her grief. Part Two is about her healing adventure of developing her foundation, The Sun Will Rise.

Right at the beginning of my conversation, Robyn made one thing quite clear: We don’t ever “get over” nor completely recover from our child’s death, but hopefully, we learn to live with loss—and if possible, find a sense of purpose to guide our grief. For Robyn and many who support her work, community activism for facing the opioid epidemic has given devasted people a sense of meaning, purpose and belonging.

INTERVIEW

Part One: Breaking Through the Isolation of Grief

Robyn didn’t hold back from “going there” to describe her first devasting weeks after Nick’s death.

Val:  Can you describe the early stages of your grief—starting at the point you think it’s best to start?

Robyn: First, I should tell you about the night before he died.  I’ll never forget the night before Nick overdosed. Strangely, out of the blue, before Nick came home from work, my daughter, Olivia, said, “I have a bad feeling about him.” As soon as he got home, he walked straight to the fridge. When Nick put his face into the fridge I made him look at me because of my daughter’s feeling that something didn't seem right. I put both my hands on the sides of his face to make him look at me.

I asked, "Are you okay?" He told me, "I'm just tired-- I'm going to bed, why?" I answered, "Because I love you, and don't want anything to happen to you.”

He replied, "I love you too. I'm tired and going to bed. I have to be up for an early shift." It still haunts me that I didn't know something horrible was going to happen that night.

The next morning as I was headed out to the gym for my usual workout, I was surprised to see Nick’s car in the driveway, as he usually drove to work on the early shift. I wondered, why was Nick’s car still there? I called upstairs towards his room, “Hey Nick, are you up there?” It seemed so weird he was not answering as he was such an early morning kind of guy. I went to his room and found him lying motionless in his bed, cold and blue. I tried to revive him with Narcan but I could tell it was too late. I screamed a horrible, guttural sound—a sound I have never made in my life. Still, my daughter called 911. The EMT and police came and took him to the hospital, but he was gone.

Val: What a horrible shock—to be the one to find him dead right at home. Before his death, had there been any signs that you sensed Nick was using again or hiding anything?

Robyn: Not really. It was such a shock, and there really are no words to describe this kind of shock. He was doing so well and so proud of his new job as an Emergency Services Technician. He had just finished his certification and was feeling a real sense of purpose and mission in his life. He told me almost every day how he loved his work, and loved being so helpful for others, saving lives. But…perhaps, he saw too many awful things during emergencies and rescues, and maybe some things had triggered him. I will never really know.

Val: What were those first weeks or months like for you?

Robyn: Everything just stopped. I just stopped. All I could do was sit on the couch. I had always been a super-energetic person who loved fitness competitions and worked hard to be the best at anything I wanted to do. I was once the unstoppable, super-achieving woman who never looked back.

But when Nick died, I didn’t know how to be me anymore.

Unfortunately, my husband and youngest son didn’t know how to relate to this person I had become—this woman who just stopped everything. And my friends tried to text me and chat to cheer me up. But I couldn’t do chit chat anymore. My daughter could understand somewhat, but she was my daughter and was grieving in her own way. For me to grieve, I needed to have some of Nick’s things around me on the counter by the kitchen—his little harmonica, his coin collection, little pins he wore, his pocket knives, but this bothered my husband to the degree that this caused arguments. He didn’t want to talk about the death of our son or look at Nick’s stuff because he just wanted to push the memories away to get through the day. I was the total opposite from him in how I grieved. There was an awful tension between us. I felt lonely with my grief because no one in my family could understand how I was grieving as a mother. And I was anxious that my friends were trying to fix me and get me to socialize or get back to the gym. No one seemed to accept that the person I was before Nick’s death—that once unstoppable Robyn-- no longer existed.

Val: It sounds so isolating for you. No one in your family is the right person to talk to, and your friends don’t seem to understand how to relate anymore, even though they are trying. What in the world did you do?

Robyn: I had a gut feeling that a grief counselor might help me. For a referral, I asked a pediatrician I liked for years (who had treated my kids when they were younger.) He gave me the name of an excellent therapist, and fortunately I felt comfortable with her.  I opened up and shared everything with her. I was especially concerned about how to cope with my husband and children who weren’t grieving in the ways I was.  A few weeks later, I asked my husband and kids to join for family therapy. They weren’t too thrilled about it, but they cared enough to go for a few sessions. I was relieved this therapy resulted in finding a solution about how I could have Nick’s things around me without this upsetting my husband. We decided to put Nick’s little things in a box on the counter, so when I wanted to connect with Nick I could just get his things out of the box and then put them away. Believe it or not, this simple solution made a huge difference for me and my husband!

Val: Wow. I love what you just said. And what a perfect solution to use the box for Nick’s things.

Robyn: Eventually my daughter, Olivia, started going into the box, getting out his harmonica and coin collection, and sharing memories about Nick with me. But still…I had a long way to go to get used to my new normal without Nick in my life.  Indeed, we all had new normals without Nick in our lives.

But one day a thoughtful friend connected me on Facebook with a friend of his named Carole who had recently lost her child to an overdose. Very soon we were talking on the phone. We could “go there” with the horrible things that no one else could talk about. For our first face-to-face meeting, Carole met me at the cemetery where both of our kids were buried. Can you believe it—both of our kids were in the same cemetery lying near each other! We sat on the grass and cried together. We made a pact with each other that we would “take care of our kids” every day by going to the cemetery every day. We agreed that no one could rob us of our grief and the time we needed to “take care of our kids.”

Soon another friend connected me to other grieving parents through Facebook.  In a few months we found out about an organization called Hand Delivered Hope, a group of concerned citizens affected by the opioid epidemic. This group provided street outreach to people who have been impacted, meeting their basic needs so that recovery was possible. Hand Delivered Hope had organized a benefit event where participants were bringing bags of comfort items. My sister and I attended this event, and to my surprise, I made friends easily with other parents and family members who had lost loved ones or had loved ones still struggling. I didn’t feel judged or that I had to censor myself from talking about messy and awful topics related to addiction. They busted through the stigma of addiction as I was accepted and welcomed. They asked about Nick, and how I was coping with my grief. They shared their own stories about broken relationships and how their kids were destitute, misguided, broken, or had died through an overdose. It was a safe place to talk honestly as a group, and I immediately realized how healing it was to have this open, warm environment where I could be a grieving mother—rather than trying to be that unstoppable, super-achiever person I used to be. This experience of feeling so welcome with my grief was a big turning point for me.

I had a huge revelation, and it all came down to this: My child was not here anymore, but I could help someone else’s child. And I could help someone else who was grieving to feel warmth and acceptance. Braintree needed more support groups, fundraising events, educational events, and resource development. Soon after my revelation, one thing led to another. I met another wonderful friend named Rhonda who was involved with a grief support group at GRASP in Brighton. She told me there was no grief support group on the south shore of Massachusetts. And things started moving from there—it was my calling. I believed I was the one to do this.

Val: Thankfully, you found a group where you didn’t have to hide your grief, and that inspired you to start your own support groups. What about your older friends? Did they fade away? Or were you able to maintain those friendships alongside the new friends you were making?

Robyn:  Yes, I have been able to keep most of my old friends. I finally managed to figure out how I can fit my old and new friends in my life. First of all, these two groups of friends are two separate groups. I call my old friends my “before” friends (before Nick’s death) and my new friends my “after” friends. The “after” friends definitely “get me” more easily and I can talk about the good, the bad and ugly stuff with them. However, I truly love my old friends and I tend to do more fun and lively stuff with them—which is just fine for short periods. I don’t want to be a “downer” with my “before” friends. My “before” friends still want to see me laugh and socialize, and I’m able to do that on some occasions. I must admit they can still make me laugh. I am glad to have both groups in my life. But I couldn’t live without my “after” friends.

Val:   Robyn, what a creative way to make room for all your friends in your life. That also sounds like a beautiful way to embrace your “before” self with your “after” self.

Robyn: Thank you for saying that. It’s all taken a long time.

This concludes Part One of my conversation with Robyn. In my next post on the Health Story Collaborative, Robyn will share her healing journey with developing The Sun Will Rise Foundation. 

• Recommended Resources

• Robyn’s Foundation, The Sun Will Rise

• Team Sharing Inc., a national organization of parents who have lost children

• GRASP: Grief Recovery After a Substance Passing

• Hand Delivered Hope, Boston 

• The Opioid Project, created by Annie Brewster, MD, and artist, Nancy Marks

• Robyn Talking about Her Son, Nick, recorded on the Opioid Project

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

By Val Walker

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

INTRODUCTION

by Val Walker

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

Q&A with KELSEY CROWE

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

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

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

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

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

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

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

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

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

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

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

4. Small gestures make a big difference.

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

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

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

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

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

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

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

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

Kelsey: Right!

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

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

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

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

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

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

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

Kelsey: Thank you!

RESOURCES

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

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

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

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

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

Keep up with Val at www.HearteningResources.com

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

Ana Bess Moyer Bell

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

By Val Walker

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Ana Bess: Thank you. I’ve enjoyed it.

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

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

SUBSTANCE ABUSE AND MENTAL HEALTH ADMINISTRATION

FACING ADDICTION

SAFE COALITION

AED FOUNDATION, ASSIST, EDUCATE, DEFEAT

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

Keep up with Val at www.HearteningResources.com

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

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

Jennifer Sax

Director of Communications, Good Shepherd Community Care

By Val Walker

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

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

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

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

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

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

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

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

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

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

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

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

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

Good Shepherd Community Care

http://www.gscommunitycare.org

The Conversation Project, and Founder, Ellen Goodman

www.theconversationproject.org

National Health Care Decisions Day (April 16, 2016)

http://www.nhdd.org

Honoring Choices Massachusetts

http://www.honoringchoicesmass.com

The Institute for Healthcare Improvement

www.ihi.org

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

Keep up with Val at www.HearteningResources.com