Seven years ago, Orna's life was irrevocably changed when she was abducted, tortured, and raped. Though she survived the attack, her wounds are still healing.

In this intimate podcast, Orna describes the mixed medical and psychological care she received, the complexity of tending to both her personal health and the legal process, and how she is learning to navigate the healing process. Orna suggests how healthcare providers can provide more sensitive care, offers solace and inspiration to other survivors, and shines a light on the racism and stereotypes our culture perpetuates about rape. We must collectively commit to dismantling the misnomer that rape only happens to young white women: it also happens to men, people of all races and cultures and ages, LGBTQ individuals, prisoners, and military personnel.

Suggested Resources:

The nation’s largest anti-sexual violence organization provides advocacy, resources, and educational information: RAINN.org

National Sexual Assault Hotline: 1.800.656.HOPE

Article on racism and rape: http://endsexualviolence.org/where-we-stand/racism-and-rape

For survivors: http://endsexualviolence.org/forsurvivors

Online forum for survivors to anonymously share their stories, and read others to see they’re not alone: Brave Miss World Speak Out

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

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

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

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

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

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

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

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

Read more from Medical Student Voices here

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

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

By Annie Brewster

Daniel and I went to the same private school I attended for high school. I was older by a few years and don’t remember him well, but he seemed like a happy enough member of our school community. It wasn't until last year, 30 years after graduating, that I learned about the abuse: In middle school, he was molested by an English teacher. Students, faculty and administrators stood by, most of us oblivious but some aware, all silent and all somehow complicit.

Now 45, Daniel shares his story with strength and compassion, speaking out straightforwardly and unapologetically about this trauma and the effects it had on his health. He has not only recovered, but is also helping other individuals who have experienced similar abuse, or are at risk of it.

Trauma associated with the abuse of a student by a teacher is especially insidious, as the perpetrator is often a respected authority figure, someone the student wants to please, typically held in high regard. For Daniel, it was difficult even to label what was going on as abuse. Instead, unconsciously, he internalized shame. Years of depression and anxiety ensued, and an ongoing journey of recovery. Today, Daniel says that the struggles he has faced, though unwanted, have made him stronger, and ultimately healthier, by encouraging depth of perspective, self-knowledge, resilience and empathy.

Recent reporting by the Boston Globe has highlighted the prevalence of sexual misconduct by staff at New England prep schools, with over 100 private schools identified as potentially involved in such incidents over the past 25 years, and more than 300 alleged victims coming forward.

In most cases, like Daniel’s, school administrators did not intervene to stop the abuse when they should have. Allegations were not taken seriously, and abuse survivors are justifiably angry. But Daniel would say that our school responded admirably, with compassion, respect and action, when he approached administrators regarding his abuse a decade ago -- more than 18 years after it occurred. The school, with Daniel’s help, has become a role model in guiding other schools through this process.

Daniel recently brought a civil suit against his abuser, and is satisfied with its settlement. Recent changes in the law extending the statute of limitations on sexual abuse of minors allowed him to bring the suit, and still more such legal changes are likely in the coming months.

Daniel says that recovery, both from depression and trauma, is non-linear and involves slowly naming and making sense of what has happened.With time, he has learned to integrate the complexity of his situation, to appreciate his vulnerability and his strength. He is a survivor of trauma, and so much more. No one part defines him. In this acceptance, he is whole.

Originally posted on the WBUR CommonHealth Blog on December 28th, 2016

Picture this scene:

It was winter in 2011.

I was 35 years old.

I had two little kids, a girl and a boy. Clare was 4 and Hayes was 1.

My husband Sam was totally engaged in family life, a great husband.

My book publishing job was full time and included frequent travel.

I was trying to take care of the kids, to be a good wife and good friend, to exercise, to eat well, to cook, to read, to stay up to date on current events, to relax, to meditate, to travel, to volunteer at our preschool.

I knew that I could do all I wanted to do and I was happy a lot of the time. But as much as I was happy, I was exhausted and cranky.

I remember saying to Sam that I couldn’t maintain the level of intensity, that my body was breaking.

I was worn out.

On the last Sunday in February, I felt a lump in my right breast. Since Hayes was still nursing, there were lumps and bumps, but this felt different. More solid. I went to my midwife’s office on Monday morning, and the nurse agreed that the lump felt unusual. In fact, the cheerful banter about the kids immediately stopped when she felt the lump. Her face was instantly serious, drained of color. She recommended that I have a biopsy and she scheduled it for Thursday of that week. That was my first mammogram and my last. The experience of the mammogram and biopsy was fine. I was a little scared, a little shaken, a little teary but at that point there was a 50% chance that the lump would be nothing to worry about. Life would go on as usual.

But that of course is not what happened. The results of the biopsy came back on Monday morning. The same nurse who helped during both of my pregnancies and who sent me to the hospital for the test called me that morning. She said that all of the details of the biopsy were not back. The preliminary news: You have breast cancer. It is invasive duct cancer. We can’t tell you more at this point. You have a meeting with a great team of doctors at Mass General next week.
What??

On the one hand, this was shocking news. I have breast cancer? I am 35 years old. I have two babies. I have a full time job. I have plans. How is this happening?

On the other hand, cancer had always been looming on the edges. My mom died of pancreatic cancer when I was 2, my brother was almost 6, and she was 33.

There was a haunting feeling that we were reliving history. The ages were too close, the story too close. I knew what Sam and my kids could lose. The pain is real and forever.

[I want to pause here for a second. I have a hard time untangling my cancer story from my life story. My mom’s death is certainly part of my cancer story, but it is important to note that it is really the central theme of my life story. Her death changed everything—from where I grew up to how I grew up to the person I married and to how I mother. My cancer story exists within her cancer story.].

In the days after the diagnosis, I was in organizational mode. I spent a lot of time organizing my office, calling family and friends, grasping for control.

At our first medical appointment, we talked about my cancer—about the stage, the grade, and the plan. Sam and I left with a clear idea of how MGH would treat my cancer. I would have a lumpectomy, followed by chemo, and maybe by radiation. We had a team in place. We felt in good hands.

At the recommendation of the doctors, I decided on genetic testing for a breast cancer gene mutation. It was notable that my mom had cancer in her early 30s as well, even though it was a different cancer, one that I always thought was not inherited. What I didn’t know before my diagnosis is that pancreatic cancer has a dotted line to the BRCA mutations.

A few weeks later, on a really crisp and bright morning, our little house was buzzing. I was getting ready for work, the nanny had just arrived, my husband was using the vacuum in the kitchen, Hayes was crying, Clare was saying “Mom. Mom. Mom. Mom. Mom.” The phone rang. It was my surgeon. The rest of the world fell back, sound faded, as I heard her words: You’re BRCA1 positive. This changes the course of treatment. We recommend a double mastectomy, followed by chemo and radiation. For whatever reason, I immediately agreed to this path. I was not reluctant to have the surgery, even though I nursed my babies for a long time and was still nursing Hayes. I was attached to my breasts, but I knew they had to go. I wanted every single breast cell to be history. The mastectomy would be followed by breast reconstruction and an oophorectomy because of an increased risk of ovarian cancer. At that point, I didn’t understand the long-term consequences of taking out my ovaries, removing my breasts, but even if I had, I would have moved forward with this plan. I wanted to do everything possible.

Waiting for the surgery was hard. The mind plays tricks: I knew that I could feel the tumor growing. I could feel it move to my lymph nodes.

The surgery was on March 31. I don’t remember arriving at the hospital, meeting with the doctors, going under—really any of it. I do remember my parents at the hospital. I remember being incredibly out of it. I remember a friend visiting, though only vaguely.

Day by day, I felt better.

At the end of April, I was accepted into a clinical trial which required a full body scan in preparation. Though my oncologist was confident that the cancer had not spread, I was happy to have the scan for peace of mind. A baseline. I went to MGH West for the day with my oldest and best friend Rosie. I drank the awful drink, we laughed, goofed around, and headed home. I was not nervous at all.

We had been home for about an hour when the phone rang. It was my doctor. Something in the liver looked suspicious and a biopsy was scheduled for the next morning.

The biopsy was the worst experience of my life. The giddiness of the day before was gone. I was terrified. My husband took me to the appointment in the bowels of MGH-no windows, no private room. Curtains only. The anesthesia did not totally knock me out because the doctors needed me to respond to cues. The suspicious spot was behind my ribs so the needle went between two ribs.

The medicine made me sick. I vomited so much that blood vessels were popped on my face. I couldn’t speak. Finally, around 8:00 my husband wheeled me out and we were home soon after. My daughter ran up to me—I remember in pink tulle—but I couldn’t speak and I was too weak to even hug her. I slowly carried myself upstairs and into bed.

This was a very physical experience. I felt so annihilated by the experience that I didn’t have the energy to worry about the biopsy results.

The results were fine. The cancer hadn’t moved. The suspicious spot was a lesion that has now been monitored for five years and hasn’t changed. We stayed on course. Chemo started in early May.

I got through chemo. I very rarely felt nauseated like I thought I would. What I did feel was totally crazy. I was wired and not thinking straight. I was wide awake but totally out of it. I felt out of my mind.

Surprisingly, over time, I began to feel healthy and confident with my cancer look. I loved the shape of my bald head and the colorful scarves. I felt beautiful, but not always. During a visit by my incredible sister-in-law Mary Lou, I happened to catch a glimpse of my naked body in a mirror. I was thin. I was bald. My breasts were gone, with only the shape of my expanders and stiches where my nipples used to be. My chest had been dug out up to my collar bones, so the upper chest was concave. The scar from Hayes’ delivery a year earlier was still red. It was shocking. The hug that she gave me in that moment literally held me up. Without her I would have collapsed in despair. She supported me and the moment passed.

Our family was in survival mode. During the treatment, my dad assured me that my story would be different than my mom’s story, that the times had changed, that my cancer was not her cancer, and that my ending would be a happy one. But the chance that I would leave these kids was too real.

The kids were little so cancer was not tangible to them in the way it would be to older kids, but it was hard on them. Our routine was destroyed. Clare turned 5 that May. Clare is amazing, full of life and vigor. She fights for what she wants—and at age 5, she wanted attention, sweets, and TV. People were coming and going. Everyone had different tactics for disciplining her. And different tactics for spoiling her. Presents, ice cream, pedicures. It was so confusing for her.

Hayes was a baby. After the surgery, I couldn’t lift him out of his crib. I couldn’t hold him. I stopped nursing him. I felt as if I was abandoning him. In August, after my chemo had ended and I was feeling better, I was on a walk with Hayes and Sam. Hayes wouldn’t come to me, and Sam said, accurately, “He doesn’t trust you anymore.” My heart was broken.

But then, moment by moment and day by day, we rebuilt our bonds.

During my cancer treatment, many people suggested that I go back to work for at least a year and a half, to find normalcy again. This was great advice, helping me to put other things besides cancer on center stage. But in June 2015, about four years after the diagnosis, I packed up my desk and headed home. I really wanted to be with my kids, to raise them, to mother. I felt that I was missing too much. We’ve spent the last year living normal lives—doing homework and extracurriculars, lounging, traveling, bickering, cooking, exercising. It has been a great year, filled with bumpy life.

My health has been good, and my trips to the cancer center have slowed down. Cancer still has my attention (when I had a stomach bug recently I asked my husband if he thought it could be metastasized cancer—he didn’t), but it is not the focal point. It is part of my story, not my entire story. It is my story, not my mom’s story. And I am thankful for this.

Spring 1997

I eye up the worn and tattered catcher’s mitt 20 feet ahead. It’s a warm May morning and the elementary school bus is coming down the street in 10 minutes. But, more importantly, baseball season is finally here. Mom is down in the catcher’s stance, “Fire it in here!” she shouts and then grins at me as I start my wind up. I pull my gloved hand up to my face and tuck my right hand in, resting the ball in the heel of the glove. I take a short step to my right and shift my weight slightly over my right foot. I swing my left leg up high and, pushing off my right leg, send everything I’ve got into the pitch, whipping the ball at mom, as she squats in the grass with the mitt held open wide. The ball smacks into the glove’s weathered pocket with a “Crack!” “Isn’t that the best sound, And!?” she exclaims, firing the ball back to me and readying herself again. We have to get 10 pitches in before the bus comes. There is no secret to being good at something. You just have to love to practice. That is her philosophy. Now it is mine too.

January 2011

It’s now junior year of college and my morning routine has shifted away from baseball. Now I get up, eat oatmeal, and review notes before class. Fewer “heaters”, a lot more books, but the same philosophy: love to practice, love to learn. I write frequently in the journal I keep on my computer. So far it is mostly ramblings -- on my dying faith in the Catholic church (what’s the point of God?), on my breakup with my high school girlfriend (what’s the point of love?), on my fascination with cell biology and chemistry (what’s the point of studying anything else but the pure molecular basics of life itself!?)

In this moment, my relationship with cancer is so ordered and neat and sterile. It is a series of PowerPoint presentations in air-conditioned classrooms. A set of logical experiments, producing clear data from which succinct conclusions are drawn. It is graphs and figures and tables and genes and proteins and signaling pathways. I have a poster outlining all the known cellular pathways that contribute to cancer on the wall beside my bed. Cancer biology is what I do, not something I fear.

April 2011

That ordered, neat, sterile, intellectual relationship with cancer collided with the powerful, unpredictable, emotional, force of real life on a beautiful spring morning later that semester.

I am home for the weekend from school, with my mom. Our morning ritual is to have a cup of Irish breakfast tea together. Always with a splash of evaporated milk and a half teaspoon of honey. We started this in high school when she was teaching 9th grade and I would hop a ride to school with her each morning.

I made my cup and walked out to the back porch where she was sitting, her mug beside her, at our small wrought iron table. If that table could talk, it could tell the entire history of our family. It has sat on the cracked slab of concrete we call the back porch ever since we moved in on Evelina Road

“Good morning, Andrew” my mom says as she smiles and looks up at me from the crossword puzzle, looking not quite her usual chipper, enthusiastic self.

 I don’t remember exactly what we talked about at first, but, eventually, she said to me, “I’ve got some news, And. I went to get this thing on my leg checked out and they said I’ve got some bad cells.”

 To me, immersed in a Cancer Biology class, bad cells equal cancer. No need for further description. I just took an exam on this very topic.  How ironic is that? “Bad cells” stop doing their jobs. “Bad cells” disobey orders. “Bad cells” exhibit the 6 characteristics of cancer, which I can hardly remember in this moment.

“What did the path report say?” I ask. “What kind of cells? How fast are they replicating? What stage is it?” In this moment of internal turmoil, I grasp for what is familiar to me – the science and the cells -- rather than looking for what might be helpful for my mom. She recognizes my angst and -- despite the fact that she received the diagnosis, she will receive the treatment, she will be confronted with  her own mortality in the coming weeks-- she opens her heart and comforts me.

June 2011

You would never find mom inside on a sunny day. She’d be ticking off miles walking all over town with her best friend, hitting the tennis ball with a fellow teacher, or kneeling in the garden behind the house, back bent, hands covered in mud, transplanting some black-eyed Susan’s or pulling weeds. But on this “glorious summer day”, as she would most certainly have proclaimed it, there she was, inside. She was curled up with blankets in her bed, her hair, frizzled and wild, pushing out over the covers. She was now a few weeks into interferon treatment for her cancer. On the days of her infusions, she collapses into bed with chills and whole body aches. It’s jarring seeing my mom so visibly weak. She could not help the shivering. She could not bite her lip and just power through the aches. The interferon was pummeling her and I hated the medicine for doing that, even though I knew, theoretically, that it was helping. I went into the room and wrapped my arms around her without anything to say.

Eventually she completed the treatment and the chills and the aches stopped. The scans came back “clean”; but that might have been the easy part: getting cancer off the scans. The real hard part is getting it off your mind. Mom told me that the greatest challenge after treatment is not becoming obsessed that every headache or cold, sharp pain or little rash is a sign that the cancer is back.

For the rest of us, at least superficially, things seemed to be “normal” again. We didn’t really talk about cancer. We didn’t use the term “remission”. We just assumed “cured.”  It was logical. Plain and simple. Mom had cancer. Mom endured the treatment. Mom beat it. Like we knew she would. We could all move ahead with our lives now, thank you very much.

April 2015

Until last spring, April 2015. She went in for her yearly PET scan. She came back with “findings” that needed to be explored with a biopsy. “This really is not happening,” I remember thinking to myself, “Why not?” came an internal reply.  The worst was confirmed: metastatic melanoma, stage IV cancer (“That’s the last stage,” I remember telling my older brother when he asked me how many stages there are).

September 2015

Now I’m in the first year of medical school. Tomorrow we will be talking about melanoma in class. I am doing the reading to prepare and I come across the survival statistics. Odd that I have never actually looked this up myself before. The five-year survival rate for a person with stage IV lung metastases is 17%. I stare at the accompanying figure, a Kaplan-Meier survival curve. Looking out at the 16-month marker on the x-axis: not many survivors. Were all those dots on the chart really someone’s mom or dad, or brother or sister? I keep reading, “Malignant melanoma is the cutaneous neoplasia with the greatest mortality rates and one of the malignancies with the highest potential of dissemination. The prognosis of patients with metastatic melanoma is grim…” Time for a shower, I think,. Enough studying for tonight. I walk down the hall of our dorm in my sandals, head straight to the showers and turn the water on hot. I get in and stand there for a few moments, letting the water pour over me. “The prognosis is grim,” I think to myself, “17% survival at 5 years.” “Shit,” I whisper. I am hit with this longing to see my parents and be with my brothers. I picture my mom’s funeral. My brothers carrying the casket. I picture my dad speaking at the wake, thanking everyone for coming. There’s my mom’s sister and brother. There’s her best friend. There are her nephews waving goodbye to her. I picture my mom on the back porch with a cup of tea, looking toward the sun. The hot water runs over me and I weep. I cover my face, but what is the point? I can’t stop it; the tears flow, falling off my face, joining the water droplets from the shower, crashing into the tile and falling down the drain. I want to follow them down there.

September 2016

I pull a mask over my face, slip a pair of gloves on while I make my way over to the metal table to join my classmates, who are peering over specimens while a pathology resident asks a question: “What do you guys think this person died of?” I pick up the cold tissue in my hands. Definitely a lung, though it is collapsed now, greyish-tan color – bland, lifeless. The tissue is dotted by small dark specks, some as small as a pencil’s tip, others the size of its eraser. I roll these little specks through my fingers. They are smooth, but irregularly shaped. They are hard and stick well to the tissue. They are uniformly black. “Is that from smoking?” a classmate ventures. “No, but good guess!” the resident replies excitedly, “That black stuff isn’t from particulate matter. Think about what cells can make that sort of pigment.” Another student speaks up, “Skin cells. Melanocytes produce pigment!” The resident, who nods in approval, concludes, “Yes, this patient died from metastatic melanoma.” The group shuffles to the adjacent table where diseased kidneys await us. I stand with the melanoma lung in my hands and roll my fingers over the small bumps again and again.

As a medical student, I’ve learned enough to fear diseases like cancer, by studying their pathology, watching tumors excised from abdomens in the operating room, or as I did recently, holding the nodules of metastatic melanoma in my hands.

But as a son, the disease is not so much what I’m afraid of…loss is. The cellular morphology isn’t scary. Even the scans aren’t that scary. The thought of being without someone irreplaceable, like my mom, is what is terrifying.

Sometimes I try to live only as the medical student, sometimes only as a son. This experience, I’m learning requires both, and, as a great poet has said, the only way forward it seems, is to live like the river flows, carried by the surprise of its own unfolding.*

* John O’Donohue

Read more from Medical Student Voices here

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

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

On September 28th, as part of HUBWEEK 2016, Health Story Collaborative hosted one of our Healing Story Sessions at the Paul S. Russell, MD, Museum of Medical History and Innovation. Healing Story Sessions are live storytelling events founded on the belief that story sharing is healing. In preparation for these sessions, we work closely with participants to construct their stories of illness and healing and to become comfortable sharing their stories in spoken word in front of an audience. Typically, story sharers invite a group of community members to witness their stories in a safe and supportive environment. On September 28, in a departure from our norm, we opened the event to the public.

We had three courageous story sharers. In the coming weeks, we will feature the written stories and the accompanying videos from the live event. We encourage you to read and watch.

As our first feature, we bring you Michele Foley. Michele is living with Stage 4 Melanoma. Her story is brave and beautiful. For the event, she shared the stage with her son, Andy, currently a second year Harvard Medical School student. Stay tuned for his story next week.

Good Mornin’ Glory

By Michele Foley

Andrew reminds me of a story I often forget. It is a story of becoming stronger, forgiving myself, laughing at myself, connecting with others. He reminds me -with his questions and focused listening -how sacred it is to share in someone’s story. I thank him for his sublime attention to my medical experience over these years. His willingness to be so involved inspires action within me, and action from others. He wraps his positive energy around me—and he might not know till now, how he has held me together and kept me walking forward.

2010 At crossroads in my life. Our answer to the empty nest? My husband and I take flight ourselves- new college jobs in the Southern Allegheny Mountains of rural Pennsylvania. Initially empty nest for me is filled with a sense of loss for what I called home: 28 years of memories with our three sons, close friends, a high school teaching routine. Change evokes a gut-wrenching ache. Where is everyone I have been centered on for the last twenty-nine years? I am off-balance. Why is my reaction to withdraw and isolate myself? Why cling to the familiar, and long for what has been? “Give yourself time,” my sister reminds me. Time to listen, pay attention, so I start to open my eyes to my new world. I drive back and forth every day, up and down the Cresson Summit, 2,430 feet above sea level. I notice massive cloud formations, September blue skies, sunsets, stars, and moonlight with magnificence like never before. College chapel bells bless each hour, adding sounds familiar from my neighborhood as a child that bring comfort. Let this new adventure be an example of what I want to tell others: get up, get out and walk boldly into your life. “Shine on,” those chapel bells sing. And so we do. Poet Nina Bogan’s lines capture my feeling then:

When I walked up the road, the string sack

Heavy on my arms, I thought

That my legs could carry me anywhere,

Into any country, any life…

One year later I am rambling back on the train from NYC to the college, to my new home. Sent to the big city to attend the JED Foundation Gala, I finish with my five hours of fun and fancy. I return to work in the train’s quiet car. Answering a call from the surgeon’s office, I step out between shifting train cars, struggling to keep my balance, and lean on the aluminum wall to take notes. I cannot hear the medical assistant’s voice and ask her to repeat and spell the results. I copy her exact words on a remnant scrap and keep it in my hand, returning to my seat. I struggle to keep my inner balance. This can’t be good. Exceedingly rare neoplastic cells positive for Melanin A, HMB-45, S-100 features consistent with metastatic deposit. Malignant metastasized melanoma. No. Not this, not now. I am just into my new life. If I don't say it aloud, look at the words scribbled on the paper, I might not have it. I will deal with this myself. Alone. No one else needs to get upset or derail their lives. Not so much sorry for myself, I feel sorry that I must begin to tell family about this. Once I disclose the diagnosis, I will have no control over others’ reactions. I don’t want to be the reason my husband is upset, my sons are sad.

I return the next day to have sutures removed. Maybe there is a mistake in the lab report. Staff stare at me as if I am dead. Even the surgeon gives me a hug, “god blesses” me, hopes I have my “things in order.” I can't leave fast enough. I bolt to my car, roll down the windows in the sweltering Ford, sit quietly, and notice bells dreadfully tolling the noon hour from the nearby rundown cathedral. “For whom the bells tolls, it tolls for thee.” Doomed, done, those bells keep telling me.

Surgery tolls. Driving to the hospital, I command my husband a la ultimatum. “If they can remove the cancer completely, but need to take my leg--fine. If they go in, the cancer is everywhere, lymph nodes and all, keep the leg intact and let it be.” Not long ago I felt “my legs could carry me anywhere.” Foolish to think I am in command. Come, Holy Spirit, fire me up. Keep me warm as I shiver pre-op. I ask for boldness of heart, I ask for patience with the unfolding of life, I ask for joy. Come what may. Good thing I memorized it. Pre-op needles in, monitors beeping, it all signals solemnity.

Post op results – Tumor exceedingly rare. We have never seen this (tumor type) before. So I am “one in a million?” Ah, it makes my stomach ache. Can’t this be ordinary? Please no, not exceedingly rare.I like to think I am one in a million but not like this!

My bubbly Brazilian surgeon exudes optimism and hope. I try to share his outlook. It lasts three days. Floodgates open when, with water from the shower, I make my first attempt at loosening the bandage. There it is, a twelve-inch gash spanning my left outer thigh. Raw, jagged, unfamiliar- I begin to sob. My life-long optimism betrayed by this. It felt like I was being mocked--ha-- “my legs could carry me anywhere.” I was going nowhere. I was heading straight to the Interferon lab.

“Give yourself time to heal,” my son Matt coaches. The scar healed; I started to fall apart, needing constant reassurance that all of the cancer was removed, margins clear and everything under control. Guaranteed, right?

Patient patient I am not; setting new goals helps. I will walk again without a hitch. I will wear long pants forevermore. I will never go to the beach again, only to be mocked by the sun. I, I, I, now seems silly. Pace myself? Who am I kidding? My body will let me know. Let go. No control. Let it, allow it, flow with it. Practice it. Make it my practice. Learn again. Again and again. Work to get my balance back. Identify what gives me strength, go after it. Slow and steady. “Take your time,” my husband reminds me. This is not a race.

2011. 2012. 2013. 2014. 2015 No evidence of metabolically active recurrent or metastatic disease. With each checkup I move a little closer to lightness of being. The remarkable feeling of seeing reports that deem organs “unremarkable” brings a smile. My ordinary life swings back with tutoring, teaching, editing. I act as if the summer of surgeries is a distant past. Deep within though there’s the tolling. I am aware of time ticking both in my head and heart. It counts the time I may have with my people; it counts the time until the next scan. I try to remind myself: Be open. Be alive. Pick up what is right there in front of you--this gift!

2015 Routine PET scan reveals spot on left lower lung. I feel that shot to the gut again. Unfortunately default mode kicks in. I go to clinic appointments alone. I go to biopsy alone. My heart pounds. My head throbs. Tears well up but not out. Metastatic melanoma Stage IV. Medical plan RadVac. It is on the move, in my bloodstream, everywhere. I go to radiation appointments alone. My arms hurt. This is too much for me to carry. Our son Matt is getting married to Katie in a few weeks. Wedding bells should be ringing, not the tick tock, chime, timer, bells tolling that my time is up. Off-balance. I steel myself. I will carry this latest news myself.

When will I learn?

I tell my people. It is happening to all of us, our son, Andrew reminds me. We will walk this next part together.

After two weeks of radiation and one Pembrolizumab treatment, wedding bells chime! Our son Tommy, reminds me to feel all the love that fills, overflows in our home. I stand off to the side looking at our yard filled with a circle of love-all of us enjoying a summer eve together. I listen: belly laughing and belching; crickets’ song and sounds of kids. Listen hard. What a fool I’d be to isolate myself from all of this wonder-filled-ness. Balanced and buoyed. I gather strength, more than I ever knew from those who love me. It is the ordinary time we spend that is the best: taking a walk, prepping a meal, pulling weeds in the yard, collecting sweetie tomatoes, icing up a glass of cold water and surprising the other with it. Such comfort in the beautiful ordinary day.

“What’s good?” my son asks, just to remind me.

Along the way, it has been a challenge to find the energy to always begin again: new treatment, new clinics, new procedures, new side effects, new allergies, new story –that is the norm. Gather again and again the beginner’s mind. Inner balance is what I am spending time on, and implementing a plan to keep strong. I begrudgingly take time to attend to symptoms of the pembrolizumab treatment. My sister chimes in, “Be as good to yourself as you are to me, to others.” Only after that can I spin into the ordinary day: tutoring, editing, walking, practicing yoga, humming, being grateful. I am the luckiest person on the planet.

I have imposed only three goals this time around. One, I limit my thought/conversation about the melanoma on an ordinary day to max ten minutes. This includes internet research, telephone conversation, complaining to family. The timer is set and when it chimes--DONE. Two, taper back on daily work--some tutoring, editing continues. Three, tend to the wellness to keep balanced. I admit all that attention makes me weary. No shortcuts. Fresh fruit and veggies, green tea, yogurt, kefir, beans, broth; then start over again shopping and preparing. A cup of tea, a homemade blueberry muffin, good company: today’s recipe for feeling fully alive.

There are a few aspects that I am working on these days.

*What does life as “normal” after cancer look like? Loved ones just want to see the old “me” back as a sign that all is well. Gone, she has moved on

* In my quest to pay more attention to detail, I try to work and stay ahead of whatever symptom is presenting, no matter how small. This self-compassion and self-coaching has been helpful in keeping my brain focused on a plan to affect a better outcome.

* I have pledged full disclosure always to family (in so doing I model what I hope will be same for us all).

* I am terrible about asking for something for myself, so that is my subset of full disclosure. Not edit, sugar coat, back pedal, apologize, or cry. Name it; claim it and move through it. This is applicable from extremes: craving butter almond ice cream to refusing to go to the next scheduled treatment.

2016 Currently, I am on hold after 8 Pembrolizumab infusion treatments. Last scans just in August were straightforward. No new evidence of metastatic disease in the chest, lower left lobe. Nodular component near the medial margin measures 0.9cm and is unchanged since 5/16/2016. There are no new pulmonary nodules. Like Poetry.Details regarding this type of melanoma say it is least receptive to targeted drug therapy. Darn again, that one in a million! The plan is to monitor and report symptoms to clinic every three weeks. No travel. Follow up PET scan. It feels good putting a bit of distance between clinic visits now. So I approach this interim as time to get my second wind. I want to be present to the here (and hear) and now, taking it all in—saturating my sense as I pause often during an ordinary day. I continue to pray to have the guts to be able to “carry” whatever comes next. Not really sure if that points to me or to those I love. No matter. Lately a sense of great freedom is emerging - having faced a bit of darkness. How to get back a bit of the “my legs can carry me anywhere?” Get up, get out and walk boldly into your life. Begin to hit the tennis ball, plant basil, bake Irish soda bread, dab on lavender, walk two-a-days, occasionally buy a good cup o’coffee.

In a monumental turnabout, I have moved from “I have to take care of everyone” to “Good morning glory. Let me gather my strength and be of help today.” I am humming along with guarded optimism, knowing the limits to that I can control. So I have retired from some of my favorite avocations: running my brother’s life, offering childrearing advice, meddling as the smother-in-law, badgering students about Thirsty Thursday when a paper is due Friday, forwarding TED talks to 30 on my contacts list, arguing with my hubby.

Postscript

As the Joan Didion quote says, “We tell ourselves stories in order to live.” The story I tell myself is to get up, get out, and walk boldly into life. Over and over again I realize how lucky I am. Andrew shared with us a quote during his first week at Harvard Medical School: “ Life is short and we have never enough time for gladdening the hearts of those who are travelling the journey with us. Oh be swift to love, make haste to be kind”. This is my avocation now.

This narrative unearthed so much that was unspoken, tucked away, intentionally forgotten. Wrestling with, loving, crying, remembering, speaking, listening, forgetting, and forgiving—all messy indeed. It has been cathartic and calls me to be courageous. As the psalm says, for what has been, thanks. For what is to come, yes.

Ana Bess Moyer Bell

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

By Val Walker

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Ana Bess: Thank you. I’ve enjoyed it.

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

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

SUBSTANCE ABUSE AND MENTAL HEALTH ADMINISTRATION

FACING ADDICTION

SAFE COALITION

AED FOUNDATION, ASSIST, EDUCATE, DEFEAT

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

Keep up with Val at www.HearteningResources.com

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

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

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

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

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

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

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

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

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

Quilt for Emalia Brown, 25.5" wide x 25" high

Machine quilted and hand stitched with organza overlays and beading

By Gillan Wang:

This quilt was made for Emalia Brown, a high school friend from Maui, where we both grew up, after she was diagnosed with stage IV cancer. The news of Emalia’s illness came as a terrible shock. I created the art quilt to raise money to help defray her escalating medical costs and to work through my own sadness and demonstrate my compassion. She died while the quilt was in process, and It is now being donated in her honor to benefit her preschool aged son, in the Kahalakea Guard Educational Fund. The format of the piece is based on a traditional Hawaiian quilt, but differs in that it tells the story of Emalia’s journey, and our shared connections to Hawaii. 

Traditional Hawaiian quilts typically feature a solid geometric plant-based pattern, appliquéd onto a high-contrast solid fabric.  The geometric pattern that I created is based on the silhouette of my friend from a high school year book photo.  The reference is specific, yet her identity is intentionally ambiguous.  (Emalia’s trademark is a flower behind her ear, which is discernible in the silhouette). I used sheer fabric for the silhouette/geometric shape, atop many colorful fabrics that collectively evoke a sense of water, marine life, flora and fauna – all of which we both love. The sheer fabric allows the imagery below to read through, thereby allowing for multiple readings, and suggesting an elusive state of existence. The words grace, love, peace and eternal are embroidered on and around the geometric form, in English and in Hawaiian.

While I was driven by sorrow to create this quilt, I aimed to express a more upbeat message of love, peace and acceptance.

 The creation of this artwork helped me to come to terms with a very upsetting loss.  Initially I was overwhelmed by my sadness, but eventually this project helped me to reflect on the positive attributes of my friend, which we will forever celebrate.  It also allowed me to feel empowered by taking action to help my friend's family in a tangible way, as opposed to feeling helpless about an unfair situation.

Artist Statement:

 My work is primarily mixed-media, with a recent focus on art quilts. Most of my work is inspired by life’s poignant experiences, such as newborn children, parenting and loss. I am especially interested in establishing a narrative in my work, which invariably informs the aesthetic of a piece. I enjoy creating and considering multiple interpretations, and I take pleasure in exploring concepts and ideas using a variety of materials in unexpected ways. Whimsy, bold color schemes, text and found materials often characterize my work.

I grew up on Maui, Hawaii, which heightened my aesthetic sensibilities and appreciation of color and the natural environment. I have a deep love of diverse materials and for working with my hands. I have a BA from Bard College and a Master’s degree in Architecture from Syracuse University, which expanded my capacity to think spatially, and introduced me to many concepts that I now explore in my artwork, such as layering and transparency.

Art by Gillan

Art quilts, collage & painting

Website: ArtbyGillan.com

Email: ArtbyGillan@gmail.com

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

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

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

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

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

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

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

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

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

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

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

“Two things, Marla…boundaries and privacy.”

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

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

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

“Does anyone want Enid’s photographs?”

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

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

Questions swirl around in my mind.

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

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

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

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

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

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

I think she’s right.

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

In 2005, at the age of 36, I was diagnosed with mesothelioma, an extremely rare form of cancer caused by asbestos. I developed the disease because as a little girl I used to wear my dad’s coat – the same coat that he would wear to do construction with drywall and demolition work. Asbestos particles would travel back with him on his coat, and from there they got into my lungs.

Most people who develop the disease die within 18 months. The really lucky ones make it five years. My story is almost unheard of, as earlier this year marked 10 years of being free of this deadly disease.

The last 10 years have not been easy, but they have been a blessing despite hard times. One thing that has helped me get through it all is the work that I have done to spread awareness and educate the public about mesothelioma. I have also spent these last 10 years warning people about the dangers of asbestos, and trying to get the toxic substance banned here in the United States.

It is really amazing how many opportunities have come my way because of mesothelioma, especially because, for most people, the disease means closing rather than opening doors. I’ve met so many wonderful people and been a part of so many incredible events. It seems hard to believe in light of my original diagnosis.

In 2009, after I had attended a symposium run by the Mesothelioma Applied Research Foundation – a nonprofit organization dedicated to finding a cure for mesothelioma cancer – I became aware of the annual observance of Mesothelioma Awareness Day, started by the Meso Foundation. The idea behind this event is to have a single day when mesothelioma patients, caregivers, advocates, doctors, researchers, and others can take out all the stops and let everyone know about the disease. That day is September 26th.

But Mesothelioma Awareness Day is more than just any old awareness day. The Meso Foundation wanted to do something different. Every September 26th, supporters of the foundation-- Mesothelioma survivors, caregivers, individuals who have lost a loved one to the disease, union and industry workers exposed to asbestos--meet in New York City with the goals of coming together, learning together, and spreading awareness. On my first Mesothelioma Awareness Day, more than 50 of us met early in the morning outside of the Today show in Rockefeller Center. We wore the Meso Foundation’s T-shirts, all with large, bold letters, and held signs telling the world why we were there. The Meso Foundation combined this awareness event with a one-day seminar on malignant mesothelioma. Since, my mom and I made have made this an annual tradition. Every year, we attend the events put on by the Meso Foundation, and also take advantage of all New York City has to offer. I love having my mom be a part of something so important to me. Every year is a reminder of how far I have come since my diagnosis.

Over the past few years, I have decided to take in some other events to help bring awareness and raise money for mesothelioma research. For example, I have started participating in the Miles for Meso event, a fun 5k run or walk that has grown into multiple races held in several states. I am proud to be a participant again this year, and to be bringing my supportive husband Cam and my beautiful daughter Lily with me!

This year, for the first time, I participated in the 6th annual Kayaking 4 Meso event. Although I wasn’t able to kayak myself, I, along with the other survivors, rode down the river in a pontoon! This event, started by my close friend Mark Wells whose daughter is a 15 year survivor of the disease and only 16 when she was diagnosed, (the average age of diagnosis is 60), was held on September 10th, before Mesothelioma Awareness Day, and raised money for the Mesothelioma Applied Research Foundation. There was over 225 people kayaking down 8 miles of the Hudson River from Stillwater, NY, to Halfmoon, NY and there will be even more in attendance. Upon completion of the race, Mark was presented with the “Above and Beyond” award by Melinda Kotzian, the CEO Of the Mesothelioma Applied Research Foundation. A much deserved honor for Mark who has raised well over $50,000 for the foundation. It was so great to finally be there to support him and be there when he received the award.

All year long, I attend conferences and events and connect with patients, survivors, advocates, and others as much as possible. Back in the early years of my cancer survivorship, I even started my own observance on February 2nd that I call Lungleavin’ Day, as it marks the anniversary of the day that I had one of my lungs removed – an operation that saved my life. It started out as a small get-together with a handful of family and friends, but has since grown into an event that approximately one hundred people attend. We all write our fears on plates and then smash them in the fire to show that those fears cannot conquer us!

I know how lucky I am to have survived so long. I still sometimes struggle with strenuous activities, but this hasn’t kept me from getting out there and doing all I can. Ten years ago, when I was having a lung taken out and getting chemotherapy and radiation, I never would have guessed that I would have so many opportunities to spread awareness about my disease in order to help others.

I’m not writing all of this to pat my own back. I’m writing it in the hope that it will inspire others to get out there and spread some awareness of their own, about mesothelioma and the dangers of asbestos, or about some other rare disease or condition that has affected your own family. The important thing is just to get out there and make sure others know about it!

You can learn more about Mesothelioma Awareness Day here.

If you would be interested in writing your Mesothelioma story, please share it with us at abrewster@healthstorycollaborative.org

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.

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.

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.

Resource:

The Conversation Project

“Do I look man enough?”

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

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

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

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

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

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

“Do I look man enough?”

“Do I look masculine?”

“Do I have a good body?”

“What is a good body anyway?”

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

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

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

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

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

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

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

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

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

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

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

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

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.

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.

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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.

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

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

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

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

You can check out the CommonHealth post here. 

Sharon Perfetti

Executive Director, Cool Kids Campaign, Towson, Maryland

By Val Walker

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Resources, Further Reading:

The Stories Between,  www.thestoriesbetween.com

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

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

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

Keep up with Val at www.HearteningResources.com