Harnessing The Healing Power of Stories

 

Health Story Collaborative Blog

Harnessing the healing power of stories...

Beating the Risks of Chronic Pain: Avoiding Addiction and Suicide in Chronic Pain Sufferers

By: Steve Johnson

 

Living with chronic pain so severe that it impacts the ability to attend school, work, or carry out general activities of daily living (ADLs) is an unfortunate reality for many people. Chronic pain is sometimes managed – not cured – with the use of prescription painkillers.

 

 

However, the use of addictive medications, even under the guidance of a physician, can lead to addiction and its consequences, including suicide. While studying chronic pain in medical school, I met a woman with severe arthritis. A hairdresser for over 30 years and a gifted piano player, her life had gotten to be unbearably painful after her medication stopped working.

 

 

Unable to find relief and afraid to go to the doctor (she worried she’d be written off as a drug abuser looking to “score”), one night she couldn’t take the agony any longer and attempted to end her life. Though she was able to make a full recovery – and start more effective pain treatment – I’ll never forget the look in her eyes and the quiver of her voice as she told me that suicide genuinely seemed like her best option at the time. I decided that day to do everything I could to help others avoid this heart wrenching dilemma.

 

The good news is that there are ways to manage chronic pain and reduce the risks associated with the use of prescription pain medication.

 

Communicate with Your Pain Management Provider

 

People suffering from chronic pain may take more medication than they once did to achieve the same relief due to developing tolerance to the drug. Eventually, their physician may refuse to prescribe more medication or higher dosages. In fear of suffering from immense pain or withdrawal, these desperate patients turn to street drugs such as heroin to avoid the pain. In fact, four out of five new heroin users say they first started taking prescription pain medication.

 

Communicating with your provider is key. If you’re truly experiencing breakthrough pain or are fearful of withdrawal, your provider may be able to help you wean off of your medication or offer alternative treatments to ease potential withdrawal symptoms.

 

Know Your Risks

 

It’s not uncommon for people who suffer from chronic pain to have more than one risk factor for addiction and/or suicide. You may also have a genetic predisposition to addictive behaviors, or you may be part of a minority group that has a higher risk of suicide.

 

Understanding your personal risk profile can help you work with your pain management provider to devise a treatment plan that minimizes your risk of developing addiction or contemplating suicide. You may be able to rely on alternative pain management techniques such as acupuncture, for instance, allowing you to take less addictive pain medication to cope with your chronic pain.

 

Treat Your Whole Body and Mind

 

Managing chronic pain if you suffer from an underlying mental illness is only fixing part of the problem. It’s especially important for people who suffer from chronic pain to rule out any other diagnoses such as major depression.

 

While you may be able to manage your pain with pain medication, your other illnesses can exacerbate problems and increase your risk of suicide and addiction if you’re not receiving treatment for those disorders as well. For instance, a person with bipolar disorder may be more likely to engage in reckless behaviors, such as using heroin for the first time, during a manic episode.

 

Ninety percent of people who die from suicide have an underlying illness that is often treatable with proper healthcare. When you pay attention to what’s going on both mentally and physically, you’re better able to advocate for the treatments that will help you get well rather than rely on a quick fix to mask pain that may be better treated by managing the underlying illness.

 

There are even holistic approaches you can try to manage your pain. Though there is still much research to be done to get conclusive results, many people with chronic pain find that meditation and diet changes can greatly improve their quality of life. Maintaining healthy sleeping patterns can also make a positive impact on pain symptoms.

 

Chronic pain is not a problem that should be ignored, even if you have multiple risk factors for addiction or suicide. While you shouldn’t suffer through the daily pain, you also shouldn’t rely solely on medications to ease your pain. Communicate with your healthcare provider, seek treatment for underlying physical and mental illnesses, and be open to trying alternative therapies to potentially reduce your reliance on prescription pain medication to cope, and you’ll be taking major steps for your overall well-being.

 

Steve Johnson has always been dedicated to promoting health and wellness in all aspects of life. Studying in the medical field has shown him how important it is for reputable health-related facts, figures, tips, and other guidance to be readily available to the public. He created PublicHealthLibrary.org with a fellow student to act as a resource for people’s overall health inquiries and as an accurate and extensive source of health information. When he isn’t hard at work in his studies, Steve enjoys playing tennis and listening to his vintage record collection.

 

Image via Pixabay by bykst

 

 

College Voices: Me, My Tumor, and Cancer

 

By Kitty Sargent, Boston College '16

 

A tumor.

 

The first time I noticed “It,” I was looking at my reflection in a dingy bathroom.

 

“Hello,” It introduced itself, “I’m new, but I’ll be here awhile.” It was a lump on my neck, found only because it cast a shadow.

 

“Do you have a name?” I asked, hoping in vain that this time It would answer. Silence, as always, would follow. Just the steadiness of my heartbeat, pulsing blood through my veins—through It, feeding It, helping It grow. Out of my control, yet within me.

 

I bargained with that silence as if it would have made a difference. “If you go away, I’ll go to the gym more. I’ll eat fewer desserts.”

Still silence.

 

“I’ll work harder in school. Go to the gym EVERY day. Eat no dessert.”

 

Still silence.

 

But the bargain felt complete, and the silence less threatening, and Its presence retreated back into the corners of my brain. I carried on, hating the body that put me in this position. Feeling helpless to do anything, yet determined to do something—if I couldn’t control It, I’d control everything else.

 

This cycle repeated for months. Until the first time It broke the silence.

 

“My name is Danger,” It said, “and you should fear me.”

 

“What kind of Danger?” I asked. But my translator, the doctor, didn’t know. It wasn’t speaking clearly yet. The doctor needed to make a personal visit. Needed to cut It open and confront It. Surgery.

 

So It had a name. A vague name: Danger.

 

But I was no closer to knowing what kind of Danger. An urgent one? A false one? “It’s most likely nothing,” the doctor said. The visit would be a formality, just to confirm this.

 

The Danger’s silence was deafening. I went back to bargaining, desperate for more control; more information. My bargaining had me eating too little, working too hard, and stressed out about how to act ‘normal.’

 

I looked like I had it all together, people later told me. Wrong: I was a sad and anxious human.

 

In the midst of these bargains, I learned about cultivating a gratitude practice while scouring health blogs for diet tips. Be grateful, and happiness will follow, the experts said. I wanted to be happy.

 

So I would wake up 5 minutes earlier and list what I was grateful for. My family, my friends…the usual. Then 5 minutes became 10, and I listed more things: the opportunities to attend college, and to live near the best hospitals in the world.

 

One morning, there was something new on the list. I hadn’t planned it. It just slipped out unexpectedly:

 

“I’m grateful for my body.”

 

What?!

 

My body, inhabited by Danger, my elusive enemy? My body, the home of that tumor? No, that can’t be right, I told myself.

 

But then I thought about it. My body lets me run and jump and sing and laugh and love. My body was fighting back against Danger and all his pervasive silence.

Okay…maybe I could be grateful for my body.

 

It became my mantra. Even on days when I didn’t believe it, I expressed gratitude for my body. In the beginning, that was most days. But I had believed once, so I knew I could believe again.

 

The next time Danger broke his silence, it wasn’t good news. The visit that my doctor paid didn’t confirm It was “nothing.”

“I’m sorry, but it was cancerous.”

 

So that’s your real name. Not “It.” Not “Danger.” Cancer.

 

But the name, Cancer, was liberating. While fog had once obscured the path to health, now I had a flashlight, and a map. Now I knew my enemy. How to fight him. How to beat him.

 

I think that I’d known all along that It was really Cancer. It hadn’t felt like a friendly tumor when I first found it. It felt wrong, full of dark energy. Panic and anxiety greeted me whenever I examined It in the mirror.

 

But now that it’s all over, pride greets me when I look in the mirror. My scar is a daily reminder that two surgeries and radiation sent Cancer packing. My body fought back. She wouldn’t let the worst happen because she was strong and full of love. Now, when I run or jump or sing or laugh or love, it’s a victory lap.

 

Cancer wanted to rob me of fully embracing life, but I didn’t let it. There wasn’t one specific moment when I realized that I had really started living; there were lots of small moments that added up:

 

Like on the day I was three months clean, and my friends surprised me with an enormous card telling me how proud they were and how much they loved me. That was the day I realized that I didn’t fight cancer alone for a single moment.

 

Or when I was eight months clean, when I walked out of class at the Sorbonne and realized I was living out a childhood dream, to study in Paris. That was the day I realized that I should continue to dream, because those dreams could come true.

 

Or when I was sixteen months clean, and the leader for a retreat I had agreed to help with kept poking just a little bit more than anyone else had at my feelings about cancer, and I admitted out loud for the first time that I had been scared. That I had pretended I wasn’t so no one would worry about me. That was the day I realized the importance of being truly vulnerable and honest with myself about my feelings.

 

Really living means being aggressively friendly to friends new and old. It means saying yes to pizza AND fries, because life is too short to choose. It means running faster, jumping higher, singing louder, laughing longer, and loving deeper.

 

Really living means I don’t bargain with the silence. I fill it with life.

 

Kitty Sargent is a recent graduate of Boston College, where she studied Political Science and French, and served on the executive board of Real Food BC, a food sustainability group.

 

 


 

 

College Voices: Sit

 

By Claire Stauffer, Boston College '16

 

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

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

Read more from College Voices here

 

Learn more about the Community Voices and discover more empowering health stories here

 

Living Consciously While Facing Death

 

When A Mother Decides To Stop Cancer Treatment And Face Death

 

By Dr. Annie Brewster and Leah Meyer

 

More than a decade ago, Colleen Lum was diagnosed with Stage 3 ovarian cancer. Her children, Kyle and Kiara, were 11 and 8 years old at the time.

 

A few months ago, after battling the disease for 13 years, Lum, who lives with her husband and family in Hopedale, Massachusetts, decided to end treatment. Today, at age 56, her health has further declined, according to her daughter. Lum is no longer eating or drinking much. And she's very, very tired.

 

Through it all, though, she's been clear-eyed about her illness.

 

"We’ve always been straightforward and honest," Lum said during an extensive interview in June. The kids "get the facts and the truth and it’s not 'Mommy has a tummy ache.' No, 'Mommy has cancer.' "

 

Lum added: “I was a good parent before cancer, but cancer made me a better parent, because you don’t have time to postpone.”

 

Listen to Lum and her daughter Kiara share their stories here:

 

 

 

 

 

Ovarian cancer is an insidious disease, often asymptomatic until it is quite advanced, resulting in five-year survival rates of under 50 percent.  Lum has beaten the odds and navigated an onslaught of difficult decisions with resilience and a keen sense of her priorities.

 

"You can talk about sex and drugs and alcohol with your kids because you don’t have time to postpone those conversations," Lum said. "Nobody’s guaranteed tomorrow. And cancer makes that very relevant. When you can sit and talk to your children about your death, everything else becomes easy."

 

Four years ago, Lum refused to participate in a clinical trial that would have required her to spend several months away from home and apart from her kids. When her physician implored her to enter the trial, saying it was his job to keep her alive, she replied, “Well, it’s my job to be a mother.”

 

Lum knows that she won’t be around to see her 21-year-old daughter graduate from college — and it's the thought of missing those major life events that saddens her most. "It’s not the dying that upsets me," she said. "It’s the milestones in your children’s lives you’re gonna miss. Seeing them walk down the aisle or seeing them have babies."

 

Still, she's happy and proud she got to be a mother for so long. "My miracle isn’t that I walk out of here and I get cured. My miracle is that I got 13 years of a Stage 3C diagnosis and I watched an 8-year old and an 11-year old turn into a 21-year-old and a 24-year-old. The biggest thing here is perspective."

 

After years of intrusive treatment, harsh side effects and approximately 160 rounds of chemotherapy, Lum knew in April that it was time to stop. Her body had had enough. To those who insist she must keep fighting, she said: “So many people want to jump back into denial and pretend … that this isn’t happening. If you’re coming along for the ride, you’re getting in my boat, and my boat is reality.”

 

Now, with death approaching, Lum is grateful to know that not much has been left unsaid. And she spends time envisioning her death:

 

I hope I die with grace and dignity, which I probably will, and a few swear words. It’s one thing I’ve got as cancer’s gone on — I’ve maintained my filthy little mouth and my few favorite swear words. I wanna have the best quality of life for whatever days we have, and then it’s like, I don’t know what this whole dying stuff is gonna involve. I hope it’s not painful, I hope it’s peaceful. I hope I can die at home. But I don’t know what it looks like. If I got to call the shots, I’d get to hang around in bed and talk to the very last frickin’ minute. And kinda joke and go, 'Hey, it’s time to go.' And I say goodbye, and I’d walk out peacefully. But as with cancer and most things, I don’t know how much of a choice I get in that.

 

Lum wants to go out on her terms. “No ventilators or feeding tubes in this body,” she said. While she accepts that she may not be able to control many things that happen at this point, she wants to control the things she can, and she has spelled it out clearly for her family.

 

For instance: If she is in a coma, she says it's OK to send her to the hospital or hospice. She has chosen a casket, and wants it to be open. She's lined up a caterer for the reception.

 

In our society we are notoriously bad at talking about death. It wasn’t until this year that Medicare finally began reimbursing for end-of-life conversations between patient and doctor.

 

In one of the countless conversations Lum has had over the years, she imagines death as a continuation of life, but different: "What if [it's] nothing but two little hills, and there’s a bridge? And you’re just leaving one world to go to another … and it’s really something very simple?”

 

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

 

Originally published on WBUR CommonHealth Blog on August 5th, 2016.


Resources:

 

The Conversation Project

 

Man Enough: Reflections on Male Body Image at College

 

By: Christopher Kabacinski , Boston College '16

 

“Do I look man enough?”

 

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

 

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

 

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

 

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

 

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

 

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

 

“Do I look man enough?”

“Do I look masculine?”

“Do I have a good body?”

“What is a good body anyway?”

 

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

 

June was Men’s Health Month, and advocates across the country created space for discussing issues like preventive health and mental health. After long being solely cast as women’s health issues, body image and body satisfaction have become increasingly vital topics in men’s health as well. For instance, during Love Your Body Week at Boston College, there is always an event that addresses issues of masculinity and body image. 

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

 

Read more from College Voices here.

 

Learn more about the Community Voices and discover more empowering health stories here.


 

How Stories Transform Our Lives: A Conversation with Lani Peterson

 

by Val Walker

 

 

 

Lani Peterson, Psy.D., Director of the City Mission's Public Voice

 

 

 

 

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

 

 

 

 

 

Val Walker, MS, is the author of The Art of Comforting: What to Say and Do for People in Distress (Penguin, 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. Keep up with Val at www.ComfortinginAction.com.

 

 

 

 

Out of Control with Cancer

 

By: Debora Hoffman     


The end of the story is this: it is over. It worked. I am grateful.

 

So why do I feel so traumatized?

 

 

I grew up thinking that breast cancer was my destiny. Inevitable. A foregone conclusion. My mom had it and so did her mom and so did her aunt. I was doomed.


So when I was diagnosed with cancer this summer, I was, well – shocked. Because I had lymphoma, not breast cancer. And it was the best kind of lymphoma ever – the slow growing variety that my doctor said would not kill me.

 

Call it cancer lite.

 

Still, it was recommended that I get 6 treatments of a combined chemo (Bendamustine) and monoclonal antibody (Rituxan) to target the nasty B cells that were taking over my abdomen. Reluctantly, I signed up.

 

The treatment was said to be well tolerated and I would not lose my hair. I’d probably gain weight because of the steroids. I could still eat fruit (wait – why wouldn’t I be able to eat fruit?) as long as I washed it for one minute. Think about that. A minute is a looong time to wash a nectarine. I could also go to the dentist for a cleaning, as long as it was right before a treatment cycle began. I would be more sensitive to the sun (how is it possible to be more sensitive than I already am?) and could not take ibuprofen or aspirin because of concerns around bleeding. Hmm…Tylenol has never touched any pain I’ve had. And I had to call if I got a fever of 100.4 or higher. I would be immune-suppressed and vulnerable to illness.

 

This was starting to get scary.

 

Each treatment was two days. Treatments were 28 days apart. Like having your period, mom said my daughter. Day one was almost a full day and day two was about half a day. I would sit in a Barcalounger and could bring one other person with me.

 

That first treatment was, well, awful. I had to start a drug to prevent tumor lysis syndrome (lisoprinol) and steroids (decadron) a few days before. In addition to the steroids and lisoprinol and the two treatment drugs, I got Tylenol, Benadryl, IV Pepcid, and two long-acting anti nausea medications. Both days.

 

When did medicine switch from treating symptoms to preventing them?

 

The treatments were Thursday and Friday. That weekend, I felt drugged and out of it. My brain didn’t work, my body felt inhuman. I smelled like a Superfund site and I felt like a drug addict. The anti-nausea medications constipated me. For days. The steroids made me feel like, well, I was on steroids. I walked several times a day with an aggressive energy. My house was never so clean. And when, as directed, I stopped taking the steroids, I could not get out of bed. I was completely flattened.

 

I slowly climbed out of that first hole. I felt anxious and eyed food with suspicion. Favorite foods made me queasy – coffee, anything dairy, carbs, sweets. Kind of like being pregnant again. I lost 20 pounds that first month. I lived on well-washed fruit. I crashed at 9 pm every night. I saw germs everywhere and washed my hands compulsively, avoiding hugs, handshakes, and the cat litter box.

 

Before I was to begin my second treatment, I was told I had to have a central line – basically access into a big vein because the chemo was an irritant when given through a small vein. I was told it was for the comfort of the nurse and that I couldn’t receive treatment without it. Really? I had read about portacaths and had told my doctor I didn’t want one. So for my first treatment, I was given the IV in the teeny tiny veins in the back of my hand. Sure enough I got some phlebitis (inflammation of the vein with swelling and pain).

 

I almost bailed at this point. I was working with two oncologists at two different hospitals and one of them told me that her hospital did not require a central line for this drug and that the nurses could evaluate my arm veins (which are huge) if I wanted. But that would mean driving 30+ minutes to each treatment, back and forth. Proximity won. I stayed with the hospital that was a 10 minute drive from my home. And I had to make my choice.

 

My choice for central access was either a PICC or portacath. Look them up. Everyone likes their port. Most people end up with a port, I was told. I knew 2 women who had ports. Neither liked it much. One had a massive infection on her chest which required the port’s removal. The other said that it never stopped hurting.

 

Neither the PICC nor port sounded good to me. I felt like I was starving and being told I could have dog food or cat food. I had scheduled the portacath surgery and done the necessary pre-screening and special germ-killing washing beforehand. But after talking to the radiologist on the morning of, I decided on the PICC for one reason: he told me that PICCs are used for short term treatments and are good for only 6 weeks. That sounded heavenly: I could have one in for 2 treatments and then get a month break before having a second one inserted. I would need 3 in all. The idea of having surgery to get a port installed and have the nurse insert the IV into my chest at treatment was repulsive to me.

 

When I showed up for treatment with my newly-installed PICC (which I already hated), my nurse asked me why I didn’t get a port. Everyone likes their port. When I told her I could have the PICC taken out after six weeks, she said that most people keep theirs in for the entire six months. She even doubted what I told her and called down to radiology to ask if they had told me that six week thing. Hmm. Maybe the radiologist told me the six week rule to encourage me to get the port. Everyone likes their port. Well, not me.

 

Here’s what I didn’t like about the PICC: it was external so I had this very obvious looking medical device sticking out of my arm. I wore a fishnet stretchy covering over it so that it wouldn’t get caught on things. I had to wrap it in Gladwrap Press’n Seal before I showered and my husband (a physician) had to change the dressing every week. Here’s what I liked about my PICC: I only had to have it in for six weeks at a time. Did I mention that?

 

For the second treatment, my steroids were tapered so that I wouldn’t get flattened. Well, that worked, but I began to lobby for no steroids. And fewer anti-nausea medications. For my third treatment, I had no steroids and only one anti-nausea medication. Still, I felt over-drugged for symptoms I wasn’t experiencing. I never showed signs of infusion reaction nor did I have severe nausea. For my fourth treatment, I was given Zofran for nausea instead of the other two drugs. Yet, I was still not given a choice. I got it in my IV. I wanted no anti-nausea medication. I found that I recovered more quickly and felt overall better with fewer drugs in my system. For my fifth treatment I was given 2 Zofran pills. I took one. No IV anti-nausea meds. Still, each treatment left me feeling crummy for about a week and a half.

 

The chemo began to show toxic signs in my body: my blood counts were low and I got a mouth sore. My fifth treatment had to be delayed a few days so my counts could recover. I was encouraged to get a shot of Neulasta to boost my neutrophils, but warned about the bone pain it could cause. I settled instead on one shot of Neupogen, about 1/20th the strength of Neulasta. The shot worked and my counts were fine when I went back four days later. Out came that awful PICC at the end of day two.

 

That treatment turned out to be my last. I opted not to have the sixth treatment because I was in remission after number three and the chemo was starting to have some toxicity. And I didn’t want to have that awful PICC put back in for that last treatment.

 

Looking back I am grateful that the treatment worked and that I no longer have tumors. But I wonder if the process could have been more patient friendly. Instead of giving every patient drugs to prevent every possible side effect, why not give a choice? Had someone asked me if I wanted drugs to prevent nausea or drugs to treat nausea if I got it, I probably would have chosen the latter. The treatment was not associated with a lot of nausea and I do not easily get nauseous. And why have a blanket policy around central line access? Not every hospital does. I felt bullied and cornered into doing something I did not want to do. Perhaps a larger arm vein or a slower infusion would have been enough to prevent phlebitis.

 

But we’ll never know.

 

The experience made me realize that once you sign on for a medical treatment, you step onto an escalator – and, like an escalator it’s really hard to get off. Every intervention brings with it a protocol and sometimes a side effect. You go into it thinking OK, I’ll get this treatment – I will permit these chemicals to be infused into me - because I’m told it will make my cancer go away. You then learn that in order to get this treatment, you have to submit to countless other chemicals, interventions, and scans. It’s like Get Smart – you walk into a door and there’s always another door you need to go through. And another. You never feel in control of your body. You never feel like you have a real choice. Feeling out of control is a huge component of being a patient and for me, it is this element more than any other that causes the trauma that I feel even now, over eight months after the end of my treatment. Allowing patients to participate in decision making around their care – giving them real choices - even if it means more work for the caregiver, can only be a plus.

 

Debora Hoffman lives in the Boston area, works in a domestic violence agency, and is a climate activist.

 


 

College Voices: Staring

 

By: Karolina Mieczkowska, Boston College '17

 

Born with a benign tumor (or “hemangioma”) on my left cheek, I attracted a great amount of uncomfortable attention. This attention influenced the way in which I saw myself. I often felt that my blemish prevented me from being what society considered “beautiful.”

 

As a girl entering her teenage years, I could not help but worry about the ways I would be viewed by others, especially by boys. When I expressed these concerns to my mom, she offered a potential solution that would require no words – a stern stare back would do the trick. I would simply be giving others a taste of their own medicine. While my voice was hushed in hopes of diverting attention away, it quickly became apparent that even this solution would not work. My work illustrates this struggle and my resulting frustration as I felt that I had no control over how people looked at me.On the contrary, it began to feel like others had more control than I did over how I perceived myself.

 

My comic was inspired by Miriam Engelberg’s graphic narrative, Cancer Made Me a Shallower Person, in hopes of showing rather than telling my experience with staring. My piece ends with my unsatisfied self confronting the reality of living with an abnormal mark on my face. It is difficult to change the way society views people who possess different characteristics. Such a societal approach has the power to negatively impact the illness experience of many individuals living with various disabilities, disorders, and diseases. As I matured throughout my experiences, however, I came to learn that a greater triumph can result in the way I react – by not letting the stares of others reflect onto the person I saw in the mirror. With this perspective I became a more confident individual who appreciates the differences that other people possess.

 

 

 

Karolina Mieczkowska is a senior at Boston College majoring in Biochemistry and minoring in Medical Humanities. She plans on pursuing a career in medicine as a physician.

 

 

 

 

 

"Art, Stories That Honor Those Who Died By Drug Overdose"

 

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

 

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

 

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

 

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

 

You can check out the CommonHealth post here


 

 

Brave New Normal: Conversation, Naturally


Brave New Normal: Keeping Conversations Vital in Healthcare

 

By Val Walker

 

Brave New Normal is a series of Q&A's with professionals devoted to preserving the role of conversation in healthcare.

 

I'm excited to interview innovative and outspoken experts weighing in on how to have effective conversations in the hurried new normal of our digital age. I'll be profiling authors, researchers, clinicians, and educators to inspire our confidence as communicators—person-to-person.

 

This month's Brave New Normal Q&A is with Sharon Perfetti.

 

Conversation, Naturally

 

 

 

Sharon Perfetti, Executive Director,

Cool Kids Campaign, Towson, Maryland

 

 

 

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, 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. Keep up with Val at www.ComfortinginAction.com.



 

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