Segment III – Ditching the Wig: Completing Treatment & Coping with Late Effects

by Rachel Trachten

 1.     Peach Fuzz

My love-hate relationship with the wig is mostly the latter. I hate being bald, I hate having cancer, and I hate needing a wig to look even remotely like my former self. 

But the wig does serve its purpose. It’s top of the line, handmade with natural hair. It makes me look more-or-less like a regular person, albeit a fragile, skinny one. But the wig is heavy and makes my head itch and sweat. I constantly worry that it will get pulled off or slip sideways, revealing my weird alien-like head. In a recurring nightmare, a gust of wind carries all that hair off my head and into the ocean.

When a friend suggests trimming the wig, I take her up on the offer. She cuts off a good four inches, and I feel a rare bit of freedom. I take a certain pleasure in watching all that hair fall to the floor as she snips.

It’s January 1980 and almost time for my very last treatment. The final insult is one more dose of Cytoxan, the nastiest drug of all. It’s so toxic that I’ll spend the whole day at the hospital getting IV fluids to wash the poisons out. At home, one of my parents will awaken me every hour and convince me to drink eight ounces of water to prevent bladder or kidney damage. 

By this time, Zach and I are living in a basement rental on Bank Street in the West Village. He’s taking some time away from Amherst for an internship in City Council President Carol Bellamy’s office. I’m back at NYU while finishing the chemo. We’ve been living together for several months, and he’s encouraging me to come back to our apartment after getting the Cytoxan. “I want to take care of you,” he says. “I’ll wake you every hour all night long.” But I’m not ready for him to see me throwing up. Over his protests, I go home to Brooklyn with my parents.

After that last dose of Cytoxan I’m officially finished with treatment. I experiment with thinking of myself as someone who no longer has cancer, but I’m still bald. I try head scarves and turbans but can’t come up with a better option than the wig.

Gradually, the cold winter days give way to spring. Grass and flowers pop up on the Manhattan streets, and my head sprouts a thin layer of peach fuzz. Zach says it looks adorable.

In our West Village neighborhood, it’s pretty much the norm to look different. Hair might be dyed pink or blue or gelled into spikes. Black leather and tie-dye are both in fashion, and torn fishnet tights are all the rage, especially with Doc Martens.

It’s a May afternoon, and I’m getting ready to leave our apartment for a class at NYU. The weather is unusually warm, and I can already feel sweat gathering where the wig presses against my neck. Just as I’m about to head out, I yank it off my head and toss it onto the sofa. I quickly lock the door behind me, trying not to think about what I’ve just done. With hair that looks more or less like a crew cut, I hit the streets. I’m awkward and self-conscious but love feeling the gentle breeze on my head. I study the faces of people I pass to see if they’re staring.  No one looks twice as I stroll over to the campus.

In my art history class, an acquaintance greets me, and I sit down next to her. “Nice look,” she says. “Who cuts your hair?”

2.     The Party 

To celebrate the end of treatment, my mom wants to throw a party, but my dad resists. He admits that it scares him, that it feels like hubris: don’t flaunt your good fortune or it will be taken away.

But in the end, he changes his mind. As an unstated compromise, we decide to call the celebration a “Good Health” party as opposed to something that would bring the heavens down on me, like “Goodbye Cancer,” or “Hurray, I’m Cured!” One way or another, the party planning begins. My longtime friend Jeffrey, who goes on to become a successful chef, offers to do the catering.

I was 18 when I started treatment; I’m 20 when it ends. Soon I’ll be headed back to Amherst once again. Normal life will resume, won’t it?

The party is in our Brooklyn backyard on a warm summer evening. Several months have passed since my final treatment, and my hair now approximates the Twiggy look. I’ve also managed to gain a few pounds, so I’m no longer a literal 98-pound weakling. I feel festive in a light-blue Marimekko sundress with tiny pink and green swirls.

That night, we celebrate my good fortune, my survival. People from all corners of my life show up with good wishes, gifts, and champagne. I watch Zach as he chats easily with my relatives and childhood friends. No gods strike me down as I mingle with guests and munch hors d’oeuvres. A chance of rain is in the forecast, but not a drop falls.

Still Breathing: Forty years later …

Sometimes people ask about the “gifts” of cancer or what I might have gained from the experience. I bristle at the question, though I can’t deny that illness has made me a more empathic person. And now that I’m well into middle age and my friends have their own medical problems, I’m often able to commiserate in a deep way. Unlike the experience of being surrounded by immortal teens, having peers in their 50s, 60s, and older means that many of us are grappling with health issues. Being healthy is no longer an absolute goal—it’s more a question of figuring out how to cope with whatever disease or disability comes our way. Although I do bring some wisdom to this struggle, the words “cancer” and “gift” don’t belong together in my world. It’s a gift I would have been thrilled to return.

That said, I’ve enjoyed many gifts over the years. Zach and I graduated from Amherst and were married two years later. We both wanted children, but my doctors advised against trying to conceive. Undaunted, we adopted a daughter and then a son. We moved across the country to California in 1998, when Julia and Alex were 10 and 5. I joined a local tennis team and imagined playing year-round for decades to come. Maybe the kids would even take up tennis and we could play family doubles.

Around the time of my final treatment, Doctor Murphy and other experts warned me that some patients start to experience cardiac problems and other “late effects” about 15 years after chemo and radiation. I vaguely took in this doom and gloom, but it all seemed so far away. At the time I thought, “maybe none of that will happen to me.”

But two years after the move, I started to feel the cardiac symptoms doctors had predicted. I found myself quickly out of breath while taking a jog or running for a forehand. My athletic singles game became a gentle doubles game instead.

By the time Alex was a young teen, I’d put my racket away for good. I recall a day we were walking up a steep San Francisco hill together. I had to stop and rest about every five steps. Alex was way ahead but circled back every now and then. “Aah, you’re so slow,” he teased. Then, “Will your heart ever get better?”

It was the first time he’d asked such a direct question about my health. I wavered, but decided he was old enough for the truth.

 “I don’t think so,” I said, “unless someone discovers a great new drug.”

He looked down and jammed his sneaker into the sidewalk. “That sucks.”

“I know hon, it does.”

At the time I was treated, there was no way to know that the doses of radiation and chemo I was given were likely more than was needed to cure my cancer. That particular protocol was used for a relatively short time before doctors discovered that they could treat Hodgkin’s Disease successfully without causing quite so much long-term damage. My future was determined by a particular moment in medical history: Had I been diagnosed a year or two earlier, the treatment wouldn’t have been available and I would likely have died a teenager; if I’d been diagnosed a few years later, I might still be running around a tennis court today.

Somewhere between those extremes, life goes on. Julia lives in New York now, and on a recent visit home, she suggests going to an Oakland A’s game. Zach (who isn’t much of a baseball fan) offers to have dinner waiting when we get home. Julia and I share a love of sports, and the game will be extra special because her beloved Yankees are in town. 

Unfortunately, a heat wave arrives with the Yankees, and we get to the stadium under a blistering afternoon sun. “I’ll drop you off, Mom,” Julia says, just as I’m about to make that request. “Go through the disabled entrance,” she adds, “so you don’t have to stand outside in this heat.” It’s easily 90 degrees and I’m taking baby steps. The air feels thick and heavy. On a good day I can walk for about 30 minutes, but hills, stairs, and heat have all become powerful obstacles.

I follow Julia’s advice about the disabled entrance, something I rarely take advantage of. I can often hide my disability by avoiding situations where it might show, though that’s becoming harder to do.

Julia parks the car and catches up with me inside the stadium. I’m relieved that our seats are in the shade and require minimal stair climbing. It feels great to sit down, and Julia quickly waves at a ballpark vendor selling iced lemonade. I’m breathing easily now, sipping my drink and starting to relax and cool down. I feel a wave of happiness as I take it all in—the noisy crowd, the players jogging onto the field, the sour-sweet lemonade, my daughter beside me.

Rachel Trachten appreciates life in Northern California, where she works as associate editor for Edible East Bay magazine. She is a longtime childhood cancer survivor. This is the final segment of her three-part piece for Health Story Collaborative.

See parts 1 and 2 here.

Segment II – Clowns, Boots, & Radiation: The Surreal World of College Plus Cancer

by Rachel Trachten

1.     Egg Salad

 After the surgery, I begin a course of outpatient chemotherapy. At 18, I’m often the oldest kid in the clinic.

There’s always plenty of waiting there, and at lunchtime staff bring a cart with sandwiches and drinks. Sometimes volunteer clowns with giant shoes and fake red noses walk through the waiting area, trying to cheer patients up with jokes and balloon animals. Some kids smile, but others are just too sick to care.

It’s early fall, and I’m waiting with my father. On this particular day, the clowns couldn’t have coaxed a smile from me. I haven’t seen Zach in weeks, and I torment myself by imagining him at Amherst being pursued by beautiful, athletic young women, all with long flowing hair. In reality, he’s been struggling to keep up in an advanced physics class while also traveling with the varsity squash team. I wait impatiently as his letters travel from the Amherst post office to my Brooklyn mailbox. Our correspondence sustains me as a I slog through more chemo, scans, and blood tests.

My dad is gloomy too. The New York Times is on strike, which is close to a catastrophe for him. He’s flipping through some other newspaper, sighing and grumbling about inferior journalism.

After a few months of chemo, I’m down to about 100 pounds. Most of my hair has fallen out, first in strands and then in clumps. At some point I just pull the remainder out to get it over with. George Michael comes to the rescue once again, referring me to an expert wig maker. When I look in the mirror, it’s hard to believe that I’d so recently been a normal teen, wearing my long hair in a ponytail and trying to lose five pounds so I’d look more like a dancer.

The lunch cart comes our way, and my dad folds his newspaper. “Hey, they have egg salad today!” he says, as if this is a gourmet treat. “And how about one of these milkshakes?” He means the cans of Ensure, a calorie-rich drink to help patients keep up their weight. 

“I’m not hungry,” I say. When the chemo is injected into my veins, it feels ice cold and has a nasty metallic flavor. I try to disguise the taste by sucking on a handful of peppermints.

“I could go down to the deli,” my dad offers. “How about some chicken soup?”

I know he won’t quit, so I take a sandwich. It’s cut into quarters, and I stare at the four little squares laid out on a paper plate. It looks like an immense amount of food.

My dad has practically finished his sandwich when he notices me barely nibbling on mine. “You need calories,” he urges. “You could eat that little piece in just one bite.” And I could have, in a different life. But on this day I get through just an eighth of a sandwich and call it lunch.

 2.     Sherry & Sandy

Waiting for the hospital elevator, I might have been a visitor, decked out in my natural-hair wig and hoisting a backpack. I am in fact on my way for outpatient chemo, having come directly from a college class downtown at NYU. (I’ve enrolled there as a part-time student with assurances from Amherst that they’ll accept the course credits.) I like the fact that I don’t look like a patient—that I’ll escape that role someday and get back to being a normal college student.

Just as the elevator doors open, I see Sherry’s mom, Sandy, heading towards me. I hold the doors for her, and she smiles gratefully. “You look good, hon,” she says. “You have an appointment today?”

“Chemo,” I reply, and she nods.

My family met Sherry’s months earlier on the outpatient pediatric floor. They’d come to New York from a small town in the midwest seeking help for Sherry’s advanced bone cancer. She’s just 14.

“Sherry’s back in inpatient,” Sandy announces, as the doors close.

“Oh.” I know this is bad news. It’s just a question of how bad. 

“Do you want to come and say hello?” Sandy asks. “I’m sure she’d love to see you.”

“Ok, sure,” I say, dreading the visit.

Sherry is curled up in bed clutching one of those hateful mint-green vomit basins. Tiny wisps of hair stick to her nearly bald head.

“Hey honey, Rachel came to say hello. Can you sit up?” her mom coaxes.

Sherry hardly moves, but she briefly opens her eyes and whispers, “hi.” Then she falls back to sleep.

“She can barely stay awake, poor thing,” Sandy says, pulling the blanket up around her daughter. “How’s school going for you?”

“Um, it’s going well, I’m taking modern art history and Irish fiction,” I say. As if my choice of classes mattered. 

“Well, you stay in school, sweetie. That’s so important.”

“I hope Sherry will get back to school too,” I say.

“Yes, she will,” Sandy says, and I nod as if I believe her.

I try to think of another topic of conversation, but nothing seems right. “Well, I should probably get upstairs to my appointment,” I say, backing out of the room. A few weeks later I ask one of the nurses about Sherry and learn that she died a few days after my visit.

3.     A Social Worker and a College Prof

My first big setback comes just a few months after starting the chemo. It’s the fall of 1978 and I’m in the student lounge at NYU. In the bathroom, I notice that my urine is an odd beige color. I know this probably means trouble.

I call Dr. Murphy from a pay phone. It’s a struggle to hear her over the chatter of students hanging out and drinking coffee between classes. But I’m pretty sure she’s telling me to come right to the hospital. She suspects that I have hepatitis and, as usual, she’s right; I’m soon an inpatient again.

The days pass in a blur. Sleep, blood tests, nurses coming and going.

One day a woman comes into my room and introduces herself as Lynn, a hospital social worker. Fine with me, no needles involved. After going through the basics, I find myself pouring my heart out, telling Lynn all about Zach and his recent letter saying that he loves me.

Zach and I have been keeping up a steady stream of cards and letters. I send news of blood and platelet counts along with worries over exams, complaints about the subways, and descriptions of foods I’m eating to keep my weight up. In one letter, I tell him that I’d discovered a new node in my neck and felt paralyzed with panic, assuming it meant the Hodgkin’s was getting worse. I’d gone right to the hospital, where Dr. Murphy assured me the node was harmless. Zach sends newsy notes about life at Amherst, describing his struggles with physics problem sets, his wins and losses on the squash court, and a budding romance between two of our friends.

What I’m not aware of at the time is how much Zach is suffering. His letters are mostly upbeat, but years later he tells me that he was constantly worried about my health. He describes going to frat parties almost every night, trying to numb himself by drinking beer, and dancing until he’s exhausted enough to sleep.

He’s also falling behind in his course work and asks his Russian literature professor for an extension on a paper. Stanley Rabinowitz is a renowned scholar whose lectures are enormously popular with students. He takes the time to ask Zach about his life, and Zach tells him about my illness. The professor gives Zach some advice that sounds obvious but has a profound effect. “Try not to worry about things before they happen” is the essence of his wisdom, and Zach takes it to heart and finds healthier ways to cope.

After a few weeks, I recover and leave the hospital, glad to have met Lynn. As an outpatient again, I pop into her office for a long talk or a quick catch-up every chance I get.

4.     Stick It!

I barely say a word as the curly-haired nurse sticks her needles into my tiny veins over and over, trying to get the required tubes of blood.

I always try to be friendly to the nurses, and most of them are friendly right back. Pediatric nurses are accustomed to screaming babies and thrashing toddlers, but I’m someone who can be reasoned with, even talked to as a peer of sorts.

The curly-haired nurse barely acknowledges me. She offers no sympathetic smile, just gets right down to business with her rubber gloves and syringe. She doesn’t even suggest warming my arm up to make the veins bigger. Then, she becomes increasingly annoyed as my delicate veins roll away from her probing needles. Black-and-blue marks pop up wherever those needles pierce my skin.

My response is to burst into tears as soon as she leaves the room.

“Where’s your fight?” I want to ask my teenage self. “Don’t you hate her?” 

What if I’d pulled my arm away and simply refused? What if I’d marched out of that hospital for good?

5.     New Boots

Dr. Murphy is petite and gray-haired, looking more like a midwestern grandma than one of the country’s leading pediatric oncologists. I eventually learn that she was one of only two women in her med school class back in 1944. At Sloan Kettering she collaborates with another female oncologist, Dr. Charlotte Tan, who looks to me like a Chinese grandma. I’m fascinated by the way Dr. Murphy refers to her colleague simply as “Tan,” as in, “I’ll speak to Tan about that.”

When I become Dr. Murphy’s patient, I’m 18 and she’s about 60. Just as I’m starting treatment, I’m having terrible insomnia. Won’t she please, please give me some sleeping pills? She listens carefully but won’t do it. “If you can’t sleep, just rest,” she tells me. I protest, but she won’t budge. 

As the months pass, we get to know one another. I come to every appointment with a written list of questions, and she always tries to answer each one. She’s a pediatrician but treats me like an adult.

One day in clinic I show her an itchy rash on both of my legs, from my ankles up to my knees.

 The rash is getting worse every day, and I’m starting to panic. She studies my legs, and I ask if I should see a dermatologist.

 “How long have you had this?” she asks.

 “Just a few days, but it’s getting worse.”

She looks over at the leather boots I’ve left in the corner of the room. Stylish brown boots, very chic.

“Did you just buy these?” she asks. She picks one up, touches the stiff leather.

“Yes,” I say, surprised at her interest in my footwear.

 “They must be awfully tight around your legs,” she says, and then I get it.

She picks up her prescription pad, scrawls a few words and hands it to me. “Rx,” it says. “New boots!”

6.     Zapped 

As I’m going through it, the radiation doesn’t seem like a big deal. It happens at the halfway mark of the treatment, with three cycles of chemo behind me and three to go. I show up at the hospital Monday through Friday for three weeks running. The visits are quick: I lie on a table under a futuristic-looking machine and the radiation is beamed through me. My chest and back have been permanently tattooed with tiny blue-grey dots to guide the beam.

Some patients might have questioned the long-term safety of radiation treatment, but I accept it as something I need in order to get well. I’m relieved to find that it’s quick and painless, practically a vacation compared to the nausea and needles that come with chemo. Sometimes I even go out for lunch or to the movies afterwards.

Little did I know that what felt like a respite at the time would have such a powerful effect on my future health. Many years later, a renowned cardiologist at Stanford will tell me, “You got zapped.”

7.    How’s it Going? 

Happy day! Now that I’m halfway through the chemo, Dr. Murphy has given me the okay to return to Amherst. I’ve spent months lobbying for this, reassuring her that I’ll really, truly take good care of myself.

“You college kids never know when you’re tired,” she tells me. But my blood counts improve and she works out the medical logistics with a cancer specialist near Amherst. I’m all set to get back to college life. I’ll take a half-load of classes, live on campus, and continue chemo treatments nearby.

But once I arrive, I feel completely out of place. I’m surrounded by healthy young adults, the sort who wake up early to jog or swim laps before breakfast. It’s February, and most students wear nothing warmer than a down vest, while I’m bundled into sweaters and a bulky jacket. At night I’m exhausted but too anxious to sleep. Zach tries his best to help, but between science labs and travel to squash tournaments, his schedule is packed. Afraid to burden him, I conceal how stressed and alienated I feel.

A few close friends know what I’m going through, but what should I reveal to casual acquaintances? When I opt for the truth, some people are effusively sympathetic and tell me I’m “so brave” or look at me with pity. Others just change the topic. I hate all of these responses and decide to say less. Whenever someone asks, “How’s it going?” (a common refrain on campus), I smile and say, “Good!” (the expected response).

Then, the wig. To take a shower, most students simply walk to the dorm bathroom wearing a robe. I can manage this, but what about the wig? Should I walk down the hall wig-less with a towel around my head? Or should I wear the wig, then hang it on a towel hook? What if someone sees it hanging there? I finally decide to leave the wig in my room. Hoping I won’t run into anyone on the way, I scurry to the bathroom clutching a towel around my bald head. I feel nothing like a normal college student.

 8.     Sisterhood

Women take over the men’s bathroom at the Holly Near concert that February night. It’s 1979, and I’m with Amy, my best friend at Amherst. She and I had hit it off as soon as we’d met, and I love her toughness and honesty. Naturally, Amy joins right in when the women waiting in line decide that the men’s room is up for grabs too.

Amy and I are enthralled by the music and the proximity to so many like-minded women. We both identify as feminists at a college that has only recently gone co-ed. After visiting the Women’s Center during one of my first days at school, I’m surprised by the reactions I get from other female students: “Why would you go there?” and “Don’t you know they’re all man-hating lesbians?”

That night Holly Near and Meg Christian sing about sisterhood and love and political power. I’m eager to escape into the music and forget that I have cancer.

Amy and I can usually talk about anything, but she consistently avoids the topic of my illness. Leaving the concert, she says, “Let’s do a radio show about women’s music.”

A friend at the college radio station can help with the technical side. All we have to do, Amy says, is write a script, choose the music, and tape the show. I have no idea how we’ll manage this, but Amy is confident.

Two weeks later, we’re ready to record. It’s evening, and snow falls steadily as we enter the studio. I do my best to stay alert, but I’m exhausted from the chemo. Amy is focused on the radio show, and I feel hurt and abandoned as she acts like I’m just fine. Months later, she confides, “I felt so close to you that I couldn’t accept how sick you really were.”

 9.     A Small Rash

About two months into the semester, I develop a small rash on my left side. It doesn’t look like much at first, but it persists, reddens, forms small crusts. I show it to my local oncologist, who sighs and says I have shingles, a nerve inflammation that’s common when your immune system is weakened by chemo. He prescribes codeine in case the rash becomes painful.

I fill the prescription but assume I won’t need anything more than Tylenol.

Dr. Murphy suggests I return to New York, but I resist. She reluctantly agrees to let me track how quickly the rash is spreading. Luckily, Zach is not at all squeamish. In fact, the experience of my illness has convinced him to go pre-med, a decision that makes perfect sense given his interest in both science and the humanities. With help from another pre-med friend, he outlines the contours of the rash with a marker to track its progression.

By the next day, I’m popping codeine every four hours. And a day after that, the red spots swell and spread into ugly blisters. The rash has more than doubled in size, and codeine isn’t enough to ease the pain. My mid-section looks like some kind of ghoulish topographical map.

Zach calls Dr. Murphy and describes the blisters and my pain level. “Put her on a plane today,” she says, and my semester is over. I fly back to New York dazed and sleepy from painkillers; my parents practically carry me off the plane. We go directly to the hospital, where I’m quickly admitted. Years later, my mother tells me she nearly blacked out when she saw those blisters.

 10.  Girlfriends

I’m finally well enough to leave the hospital. I’ve been an inpatient for nearly two months, battling shingles, meningitis, and other complications from the chemo. I later learn that my survival was uncertain, but at the time I’m too sick to even wonder about it. 

During these months, my contact with the outside world is limited to staff and visitors. Once I start feeling better, I take slow walks round and round the nurse’s station. Two close friends, Allison and Lisa, are on spring break from college and come to see me. If they’re shocked by how frail and bald I am, they never let on. They bring Italian bakery cookies and gently rub my fuzzy head. Many years later, Allison tells me that when she first learned about my diagnosis, her mother told her not to look it up in the encyclopedia, but she did anyway.

Allison and I became nearly inseparable starting in sixth grade, and Lisa made it a threesome when we got to junior high. With so much shared history, the three of us can relax and giggle even in a cancer hospital. When the nurses let them bring me out to the deck in a wheelchair, I can almost convince myself we’re just out on the town.

The day I’m discharged from the hospital, I walk along the Manhattan sidewalk like a country bumpkin gaping at big city life. My dad drives to Brooklyn and stops at a local market, but I stay in the car, watching the scene around me as if it’s a movie. People come and go with bags of groceries, small children in tow. I’m feeling sleepy and almost drift off for a nap, but the world pulls at me. I find myself thinking about Lisa and Allison and wondering when they’ll come home for the summer. I imagine going out to Sunday brunch and catching up on their lives and dating adventures. Months later, Zach and I rent a basement apartment in Greenwich Village. Before we move in, Lisa and Allison show up with buckets and cleaning supplies and help us scrub every inch of that apartment.

Rachel Trachten appreciates life in Northern California, where she works as associate editor for Edible East Bay magazine. She is a longtime childhood cancer survivor. This is the second segment of her three-part piece for Health Story Collaborative.

See Part 1 here; see part 3 here.

by Rachel Trachten 

Section I- A Fateful Haircut: Diagnosis & Surgery

 1.    Every Last Hair

 Oddly enough, it’s a guru of long hair who leads me to baldness.

 It’s 1978 and I’m 18. My dad’s girlfriend, Susan, is a regular at George Michael’s Madison Avenue salon, where they specialize in long hair. She and George Michael are old friends, and Susan has brought me here as a special treat. We’ve had a delicious afternoon of pampering and long-hair luxury, complete with fragrant orange and pink potions for washing and conditioning.

 Once my hair is clean and silky, I stand in front of the mirror for a trim. Just a trim, because long hair is the goal.

 But as I stand there, dark spots appear in front of my eyes and the world starts to close in. I go down, and next thing I know I’m on a black leather sofa in George Michael’s office.

Before immigrating to the US and becoming a hair tycoon, George Michael had been a medical doctor in Russia. When Susan tells him how I’m still exhausted from the mono I had months earlier, he urges her to push for more testing. Soon after that hair salon episode, I have a biopsy of a swollen gland in my neck, revealing that I have Hodgkin’s Disease, a cancer of the lymphatic system.

As it turns out, even oncologists like to get their hair done. Cancer specialist Dr. Lois Murphy is also a longtime client of George Michael. He makes the call that gets me on to her patient list, and pretty soon the chemo she gives me will knock out every last hair on my head.

2.    Back on the Court 

Just before I have that fateful biopsy, the surgeon tries to calm my fears: “I hear you’re a tennis player,” he says. “Don’t worry, you’ll be back on the court in no time.”

“Could I play by the weekend?” I ask.

“Doubles should be fine,” he says.

Liar.

I need the biopsy because that big swollen gland in my neck just won’t go away. I’ve been exhausted for weeks, maybe months, but I’m 18 and keep pushing through. I’ve never been seriously ill, and how could I be? I’m an athlete with big plans to join my college tennis team. 

When I get the biopsy results, I’m stunned but strangely calm. I take it all in, including my parents’ assertion that this illness is serious, but can be treated. Decades later, I can’t help but wonder how a less compliant teen would have handled it all, someone more like my sister, Jessica. “Cancer!?” she would roar. “No fucking way! I’m a jock. And how could I play doubles after that lying surgeon slashed my neck open?!” She would slam doors and throw dishes, relishing the crash as they hit the kitchen floor.

 3.    The Bracelet

The plastic hospital bracelet feels like a declaration of ownership: you belong to Sloan Kettering Memorial Cancer Center; get used to it. But once the bracelet is secured on my wrist, I’m set free until evening. I head out with my parents (they’re divorced, but friendly) for a few hours in Manhattan before returning to face the prospect of the next day’s surgery. 

At this point, I’ve finished just one semester at Amherst College. I’d missed what should have been my first semester thanks to the mono. But now I’m supposed to be back on track, feeling fine and choosing courses for the coming term. Instead, doctors are going to remove my spleen, an organ I didn’t even know I had. For good measure, they’ll take out my appendix too and probe my insides for more evidence of cancer.

It’s a warm July day, and we end up on the sprawling steps in front of the Metropolitan Museum of Art. The area is packed with tourists and New Yorkers enjoying the sunshine, eating ice cream, watching street performers. As I stand a few feet from my parents, someone taps my shoulder.

“Rachel, great to see you!” It’s Andrea, a casual friend from Amherst, smiling and looking perky in a yellow sundress embroidered with tiny white daisies. “How’s your summer going?” She looks tanned and healthy; she’s practically glowing. 

I pull on my sleeve to be sure the hospital bracelet doesn’t show. Should I state the grim truth? “Things couldn’t be worse. I have cancer.”

I don’t say this. I stare at a thread hanging from one of those cute daisies on her dress and imagine giving it a tug. How far would it unravel?

“The summer’s been good,” I say with a forced smile. “But I’ve got to go; some people are waiting for me.”

 4.    Broken

That evening my parents are with me in the hospital, and at some point I have a few minutes alone with my dad. He looks as broken as I feel.

We sit in my hospital room as the sun goes down. I don’t recall exactly what I say, but I must have used the word “despair.” And he kind-of snaps to attention and shakes his head like he means it. “No,” he says. “Now is not the time to despair; it’s the time to fight.”

I give him a teenage “oh, come on,” look, but he insists. “If there’s ever a time for despair, I’ll be right there with you,” he says, “but this isn’t the time.”

His words glue me back together, at least in that moment. He offers up a reminder that he’ll be there no matter what and that there’s still hope. At 18 I already have a strong belief in working hard for what I want—it’s how I got into Amherst and how I win tennis matches. My misery lifts slightly as I take in his words and start to focus on what’s ahead.

 5.    Good Books

Night falls, and the Manhattan skyline glitters outside my hospital room window. My parents leave, and I stare miserably at the bright lights and skyscrapers. Then I decide to take the plunge and call Zach, the guy I’ve fallen hard for at Amherst.

When I first saw Zach, he was in our dorm library sprawled on his back on an old sofa. He looked irresistible in a white tracksuit with thin black stripes down the sides. He was reading from The Complete Works of William Shakespeare, a weighty hardcover edition that he held overhead like a paperback. I asked around and learned he was a varsity squash player, a sport I vaguely associated with high-end prep schools. It certainly wasn’t on anyone’s radar at my public high school in Brooklyn.

I also heard that Zach had a bit of a reputation as a playboy, but I wasn’t scared off. A few weeks after we met, he asked me to dance at a Valentine’s eve party and the chemistry between us was undeniable. When we sat in the same lecture hall or I spotted that white tracksuit across the campus quad, I felt his presence like an electric charge. One night we took a midnight walk around campus and kissed by moonlight. I soon learned that Zach had grown up in Northern California, where his dad was a physicist and his mom worked in public television. His West Coast childhood was as exotic to me as my New York roots were to him. 

When the semester ended, Zach and I parted for summer with the quasi-commitment “try not to fall in love with anyone else.” I headed home to Brooklyn, and he left for California, then back to his mom’s current home near Boston.

Now it’s July, and Zach has no clue that I’ve just been diagnosed with cancer and will have surgery first thing in the morning. We’d been writing occasional letters that summer, and I’d mentioned that I was having a biopsy. But neither of us took it too seriously, assuming it was just something I was doing to appease my parents. 

I set off in search of a pay phone, clumsily pushing my IV pole down a hallway decorated with cheerful museum posters. I’m on a pediatric floor and most of the children I see are bald. I try not to think about what that means. Some of these kids also have amputated limbs and are getting around using crutches or wheelchairs. As I slowly make my way toward the phones, doctors and nurses in bright scrubs bustle past, miniature teddy bears clipped to their stethoscopes.

I’m trembling as I dial Zach’s number and try to explain the train wreck my life has become. “Hodgkin’s Disease,” I say. “It’s a cancer of the lymph nodes, but they say it’s curable. The surgery is tomorrow.” Silence hangs between us.

“So, um, what else have you been doing?” he finally says. “Have you read any good books this summer?”

Good books?! We end the call soon after that, and I sob against the cold hospital wall. Why would he want a girlfriend with cancer?

 6.    Love Medicine

I’m stuck in the hospital for two weeks after the surgery, and Nancy is my main nurse on the day shift. She’s good at her job, but mostly it’s her love life that helps me through those depressing days. 

Post-surgery, my abdomen is covered by a large bandage with stitches underneath. I have a tube in my nose, an IV needle in my arm, and pain meds every few hours. The saga of Nancy and her boyfriend offers something to focus on other than my own misery. 

Nancy lives in New York, but she’s in love with a guy in Boston. They’ve been in a long-distance relationship for almost two years, and, at 30, she’s more than ready to get married. But Boston won’t commit. He’s content with the status quo, where they see each other every few weekends. Nancy is starting to doubt his love. Meanwhile, there’s a New York guy who adores her, but she’s only lukewarm on him.

It’s my daily bit of fun to hear Nancy’s latest drama. And she’s eager to hear my boyfriend blues too instead of just taking my temperature and blood pressure. When Zach announces that he’s coming to visit, Nancy and I have a long conversation about which nightgown I should wear. In the moment, it’s an important choice, and she turns out to be good medicine.

 7.    Nurse or Supermodel?

My mother stays with me in the hospital after the surgery. There’s a cot for her next to my bed, though I can’t imagine she got much sleep.

 I’m aware that my mom has terrible fears about hospitals. But I’m a typical self-centered teen and don’t give it much thought.

I do know that my mom had tried to visit a friend in the hospital but had to leave almost immediately because she felt faint. Perhaps she never even made it to her friend’s room. And now Sloan Kettering is her second home.

 Somehow, she copes.

One post-surgery night, I awaken with sharp abdominal pain. Please, let it be time for more painkillers. No, it’s too soon. My mother goes in search of the night nurse, who turns out to be a glamorous blond. I can’t help but admire her chic angled haircut and the tiny diamond studs in her ears. But something about her cool elegance makes me think she’ll tell me to tough it out until I’m due for pain meds.

My mother explains what’s been happening, and the nurse listens closely. In a soft voice, she asks me to show her exactly where I’m hurting. Then she gently rearranges my body to help ease the pain. She gets extra pillows, putting them in just the right places under my legs. The nurse promises more meds soon, but I’m already feeling better. People can surprise you.

 8.    My Own Prince Charming

After telling Zach about my diagnosis in what feels like a disastrous phone call, I try to resign myself to the end of our relationship.

In an attempt to protect him, well-meaning friends and relatives also suggest that he let our romance end. Recovering from Hodgkin’s Disease is far from a given in 1978. In fact, the protocol I’m getting is barely beyond the experimental stage and is being tested only at Sloan Kettering and Stanford Medical Center. Dr. Murphy tells my parents that this combination of drugs and radiation is beginning to show good results, with cure rates as high as 75 percent. I’m unaware of these statistics, but I do know that my disease has progressed to stage IV, having spread to several parts of my body.

Zach ignores the advice to stay away. Instead, he calls my father and arranges a visit. About a week after my surgery, Zach gets on the Eastern Airlines Shuttle and into a cab and appears at the hospital. I’m so excited and anxious about his visit that I exhaust myself before he gets there. I’m sound asleep, probably snoring, when he arrives.

I open my eyes and he’s standing there in khaki pants and a striped button-down shirt, his hair nearly blonde from the summer sun. I forget about my pain and tubes and stitches. Whatever Sleeping Beauty felt when she awoke to find Prince Charming beside her, I’m sure it was nothing compared to my joy in that moment.

For a while, we make small talk about Zach’s flight from Boston. Then we cover his recent visit to California, where his father lives. The issue of my illness feels too dangerous to touch. Finally, we tiptoe up to it. “I won’t be back at school in the fall, with all this going on,” I say tearfully, motioning toward my body, the IV pole, the room. “I know,” he says. He sits by my bed and holds my hand, and, after a little while, I doze off.

 Rachel Trachten appreciates life in Northern California, where she works as associate editor for Edible East Bay magazine. She is a longtime childhood cancer survivor. This is the first segment of her three-part piece for Health Story Collaborative.

See Part 2 here: see part 3 here.

This is a story about the value of writing and how it sustained me throughout my treatment for an aggressive cancer.

In 2016, my annual physical exam detected low white blood cell counts. My doctor referred me to a hematologist who recommended a bone marrow biopsy.  The biopsy discovered acute myeloid leukemia and triggered immediate hospitalization. In forty-eight hours, I went from feeling fine to intensive treatment for a lethal disease.

The same day I began chemotherapy my wife was admitted to my hospital with a fractured femur. After preparing for and recovering from surgery, she transferred to a transitional care unit for a month-long rehabilitation.  Meanwhile, I had a five-week hospital stay to treat infections arising from chemotherapy-induced immunosuppression.

I proceeded through induction chemotherapy, consolidation chemotherapy, and a successful cord blood transplant. I’m now over three years out from my initial diagnosis and final treatment, and I remain cancer-free.

While doctors treated my body, several strategies sustained my identity. Although I was retiring from my role as a professional sociologist, my identity as a writer making sense of my social and personal worlds was crucial throughout my odyssey. My identity-sustaining strategies included mindfulness practices, physical activity, a pro-active attitude to my illness, unrelenting humor, and a secular worldview. But my most valuable strategy was writing my story.

It started simply enough during my first week of hospitalization when I realized we needed a way to keep folks informed about our situation. People suggested a Caring Bridge site with updates for all to see.  However, announcing to the world that our home would be unoccupied for a month or more seemed unwise.

Instead, I sent an email to neighbors asking them to collect our mail and keep an eye on our house. I quickly realized that emails were an efficient way to keep everyone informed. I eventually sent over sixty reports to more than fifty recipients. These missives combined medical updates and progress reports with reflections on being a cancer patient and the often mysterious and frightening world of cancer care.

These reports were composed for a known audience. I was highly conscious that I was writing for others and included some humor to lighten the impact of my otherwise dire news. One of the great benefits of writing for others was the supportive feedback I received from my correspondents.

It eventually dawned on me that these cumulative reports had become a kind of cancer memoir. On a more profound level, it also occurred to me that I was writing for and to myself.

Each day in the hospital brought a new, dizzying array of personnel, medications, tests, scans, side-effects, cautions, and complications. While I received excellent care, it was an overwhelming initiation into the world of cancer treatment that left me feeling highly vulnerable and utterly dependent on the care of strangers.

The best way I could make sense of it was to write about it. Writing became my therapy. It allowed me to take the chaotic threads of my daily experience and weave them into a coherent narrative of what was happening to me.

My writing translated swirling emotions and unpredictable circumstances into a narrative that tamed my fears and preserved my identity.  At a time when there wasn’t much I could control, telling my story made me the author of my own life. In short, writing became a psychic survival mechanism.

Late in the process, I decided to share my story more broadly.  With the addition of a preface on lessons learned and an epilogue on identity changes, my memoir appeared from Written Dreams Publishing in December 2018.

As I was preparing my book for publication, I read the Canadian sociologist Arthur Frank’s book on The Wounded Storyteller. His work retrospectively overlaid a whole new level of insight into my narrative and how patients can retain their personhood in the face of life-threatening illness and technically driven treatment.

Frank claims that storytelling by ill persons can play a crucial role in shifting them from a passive to an active role in their illness. While doctors may ensure our survival, telling our story can maintain our identity. Put differently, while people surrender their bodies to medicine, they retain their self by telling their story. Storytelling thereby rescues patients from the medical colonization that would otherwise reduce them to passive patients in an asymmetrical power relationship.

Frank describes three types of stories that emerge out of illness. The first, restitution narratives, say “I was healthy, then I was sick, now I am (becoming) healthy again.” Here, the patient’s body is analogous to a broken-down car, the physician is an able mechanic, and the patient is a passive bystander drinking bad coffee in the shop’s waiting room.

Patients eventually get better in a restitution story, but it remains one in which an active physician restores the sick body of a passive self. Restitution stories are the medically and culturally approved way we think about illness: when something is broken, we get it fixed and move on. They nonetheless leave something important out of the picture as the person is reduced to a body needing repairs and the self is sidelined by the doctor’s expertise.

The coherence of restitution stories is lacking in the second type of narrative: chaos stories. Without narrative order, coherent sequence, or discernible causality, they carry no expectation of recovery or illusion of control. These stories are threatening to the patient, but also to physicians because they are an implicit critique of their limited ability to fix things.

By their nature, chaos stories cannot be told as much as simply experienced by ill persons as overwhelming. They can overtake any sense of a coherent self and an orderly world for a patient. Despite the patient’s sense of helplessness and the physician’s dislike for such stories, they must be acknowledged before the patient can reclaim their personhood.

The final type, quest stories, are the only ones in which the teller assumes center stage. Here, the patient accepts their illness and uses it to try to gain insight from their experience. Such stories involve a recursive journey; the patient takes a trip in order to discover what kind of trip it is, and then finds meaning that can be passed on to others.

There is heroism in quest stories; it isn’t the physician vanquishing disease but rather the patient persevering through suffering. As people become wounded storytellers, they derive meaning from telling their illness. Through quest stories, people become not just survivors but witnesses with a responsibility to share their stories.

As I digested Frank’s ideas, I realized I had become a wounded storyteller and that all three types of storytelling had appeared in my own accounts.

My odyssey began as a chaos story. Upon my hospital admission, I had no clear understanding or sense of control over what was happening to me or my spouse. But wait, there’s more: three weeks into our mutual incapacitation, a nasty storm brought down two sixty-foot trees onto the roof, deck, and gutters of our unoccupied home. It just seemed like anything could (and did) happen. My fractured impressions nicely fit Frank’s description of chaos stories as proceeding through multiple, destabilizing events linked only by the phrase “and then” repeated over and over.

Shortly thereafter, my reports changed as I learned more about my disease, my short-term treatment, and the long-term options for further treatment. In effect, my doctors were telling me a restitution story about how I had been healthy, then became sick, and now will get better. While my doctors and treatment provided the data points for this story, I played an active role by narrating it. But in order to convey my experience to others, I had to comprehend it myself. My readers became the prod for my own self-understanding, as writing-for-others seamlessly became therapy-for-me and a means of maintaining a coherent self

The next turn in my narrative occurred after my day 180 consultation. I was six months out from my transplant and had tapered off my anti-rejection medication and its unwelcome side-effects. That turning point sparked a qualitative shift in my mindset. For the first time, I was able to accept that I had weathered my treatments, that they had been successful, and that I was actually better. I then described my mood as serene euphoria, but it came with a powerful urge to reach out and share my story.

I now see this period as the beginning of a quest story. As I have reached out through my memoir, support groups, peer counseling, speaking engagements, writing workshops, fund-raising events, and survivorship conferences, I have met the responsibility to share my story and forge new connections with other members of the cancer community.

My most meaningful, current activity is being a peer volunteer meeting with current transplant patients. Our common bond of transplant fosters profoundly personal conversations between complete strangers as we share our stories. In so doing, we broaden the circle of people who become authors of their own lives and join the community of wounded storytellers.

Steve Buechler is a retired sociologist. His memoir is titled How Steve Became Ralph: A Cancer/Stem Cell Odyssey (with Jokes). More information on his book and activities is at www.stevebuechlerauthor.com. You can also find a brief interview with Steve at https://www.youtube.com/watch?v=IUfYUImyhJU.

Have you ever tried writing poetry when struggling as a patient or the caregiver of a loved one? Writing a poem can feel like a meditative practice. You slow down, consider your thoughts, and ponder topics for your poem. Your mind can wander over territories well-known and those unknown. You explore questions like: Why am I in this place? How will I move from denial to acceptance? Or, will I ever reclaim my life? Along the way you may uncover thoughts previously unknown. Poetry opens a door to vast possibilities for self-expression.

After my daughter Elizabeth died from a rare bone cancer at the age of fourteen, poetry sprang forth from me. Unplanned, unrehearsed, unnerving at times. As I read my journal entries written during Elizabeth’s yearlong illness, I knew that somehow, I had to process my pain, my anger, my devastation.

With pen in hand, I delved deep into foreign lands. Overtime, I discovered that drawing metaphors with the natural world allowed me to open up but not feel too vulnerable, to take risks, and to unfurl tightly held emotions.

I’d like to share a poem that I wrote. I hope that after reading my poem, you might consider picking up your pen and writing one, too.

Waves of Life

Snow follows a day of sun;

Cold follows a day of warmth;

Pain follows a day of joy.

I have learned that I will never know

what the next day will hold,

but I am no longer afraid of this uncertainty.

Changes are the waves of life—

we will not know their strength,

or how hard the waves will hit the beach,

but they will flow in each day and night,

ever changing, ever free.

If we can learn one vital truth,

we will be set free:

Life constantly changes but we are never alone,

the earth is under us,

the waves break before us,

the moon shines upon us,

family and friends comfort us,

and the one who has left us,

encircles us with love.

© Facing Into the Wind by Faith Fuller Wilcox

Listen to Sean share his story.

At age 22, while a graduate student at Boston College, Sean Manning had a hemorrhagic stroke.Seemingly out of nowhere, a blood vessel in his brain “exploded” while he was lifting weights.In a second, he went from a physically fit guy doing squats at the gym to someone with lasting physical deficits. Only later did he learn that he had been living with an arteriovenous malformation (AVM)--an abnormal tangle of arteries and veins—in his brain, likely since birth.Without knowing it, he had always had an increased risk of vessel rupture and cerebral hemorrhage.

Initially, he was in a coma. When he woke up two days later, he was in the hospital and couldn’t speak or move the left side of his body. He wanted to get up and run, but wasn’t able, and he felt trapped. Still, to this day, he gets a panicky feeling when he is in hospitals, overwhelmed by a sense of confinement and a desire to escape.

While the days in the hospital are somewhat of a blur, he remembers struggling to come to terms with what had happened:

“Can I possibly live a life after this?” he remembers thinking. “Am I am going to be in a home for the rest of my life? Am I going to be in a wheelchair? I play pick-up basketball three times a week. I just dunked last week. And now you are telling me I can’t walk?”

He had never before experienced such an out of control feeling and he was terrified. He describes a long process of recovery, which is ongoing. He worked his way through denial, anger, and self-pity and has come around to accepting his new reality. His three-year anniversary was in March, 2019. He still struggles with some left sided weakness and with periodic seizures, but these challenges aren’t holding him back. He has successfully completed the Master’s degree program in accounting he started before the stroke, but notes that his priorities and passions have shifted. He no longer wants to be an accountant. Today, he works in ambulatory practice management at the Dana-Farber Cancer Institute and intends to pursue a career in nonprofit consulting.

His stroke caused enormous suffering in his life—something he had never experienced before—but he is finding a way forward, and acknowledges that he is now a different, and in some ways better, person than he was pre-stroke. He is more open to different experiences and perspectives; his relationships have strengthened and deepened; he is more empathic.

*Mixing and sound design by David Goodman

Music:

1. Guitar, “Le Conqerant”

2. Roxy Music, “If There Is Something,” 1972

3. Trypheme, “White Douleur"  Thanks God for Air Emotions (freemusicarchive.org)

4. Junkadelic Brass Orchestra, “Baron Samedi,” Travelling in the Footsteps (2017)

5. Lee Rosevere, “Trying to be Strong,” Living with Trauma, 2018 (freemusicarchive.org)

6. Dee Yan-Key, “Dreamworld” One Hour of Your Life (freemusicarchive.org)

Chris Davie died on January 8, 2019, at the age of 41. He was diagnosed with a grade 2 Glioma—a brain tumor—on the last day of 2007, when he had an unexpected seizure in the car with his wife Betsy and baby son Nathan, on their way to a New Year’s Eve party. It was a frigid Minnesota night; luckily, Betsy was driving.

The diagnosis was a shock and the initial treatments--including brain surgery-- grueling, but he was told his life expectancy with this type of tumor could be 10 to 20 years, and this seemed like a long time. “

I know this is the real world, that this is terminal,” he recalls thinking, “but I am going to do my best to go 20 years.” Despite regular medical checks, life went on as usual, for the most part, for the next 10 years. But in 2017 the tumor started to grow again and, after a second brain surgery, the tumor was re-classified as a Grade IV Glioblastoma, a diagnosis with an average life expectancy of 15 months. The cancer was no longer “surreal,” as it had been for so many years. Suddenly, it was a reality with a frighteningly short time-line.

Betsy Davie, Chris’ wife, contacted me by email in early June, 2018. She had learned about Health Story Collaborative after watching a live-streamed story event, co-hosted by CaringBridge, featuring Michael Bischoff, another patient living with Glioblastoma, and his neuro-oncologist, Dr. John Trusheim. Betsy and Chris resonated with Michael’s story and were motivated to reach out. “Chris is in a tough spot medically,” she wrote.

“The last few months have been difficult. To be transparent, the tumor is affecting his ability to communicate, particularly in written form, which is why I am writing to you. In the last month we have discussed, at length, the importance of being more open with family, friends, and possibly the wider community. We are exploring ways for him to tell and share his story while he still can.”

We met in August to record their story. Chris was clear on his goals. He wanted to capture a record of his experience, to communicate what he was going through, what he had learned and what had been meaningful to him. Most importantly, he wanted his kids, Nathan, now 11, and Julia, now 7, to remember him and to know, deeply, how much he loved them and how much their love meant to him. During our conversation, he mentioned a song that has been important to his family—“The One Who Knows,” by Dar Williams. A quote from this song hangs on the wall in the hallway between his children’s bedrooms, where it has been for years. “You’ll fly away, but take my hand until that day,” it begins, “So when they ask how far love goes, when my job’s done, you’ll be the one who knows.” He knew that he would fly away first, before they are grown, but the message still pertains.

While on his way out of this world, Chris worked actively and intentionally to deepen his connections and to make his love known.

Michael Bischoff, who, without his knowledge, led Chris and Betsy to me, also has young children, and has also committed himself to doing what he can now, before it’s too late, to share his story and deepen his relationships. Michael reflects on his first experience sharing his story in community as follows:

“I was putting my trust in the healing power of bringing forth what is inside of me, not in thinking that it will magically cure me of cancer, but in trusting that bringing together my internal and external worlds will bring me closer to life, and connect the sometimes-lonely landscape of moving through brain cancer with other people I care about.”

Michael is now part of the Health Story Collaborative team, our Healing Story Principal, guiding others in storytelling and leading by example. He has taught me that it is possible to heal even in the face of death. He has demonstrated the power of connection. If we fully own and openly express our vulnerability, the imagined walls that keep us separate often disappear.

At Health Story Collaborative, our work centers on using storytelling as a therapeutic tool. We work closely with individuals navigating health challenges to help them construct and share their narratives in ways that are psychologically productive and empowering. Our approach is grounded in research supporting the health benefits of storytelling. We encourage the development of certain narrative themes that have been linked to improvements in mental health, namely agency, communion, redemption and coherence. But the people we work with keep it real. It is not always possible to have a sense of agency in the throes of illness. And not everything is redeemable. It can’t get worse than death.

And yet, Chris and Michael, two men with Glioblastoma, a deadly brain tumor, have given me hope and inspiration. They remind me: it is not all or nothing. Even when death is imminent, we can look for threads of redemption and flashes of agency. We do what we can, and we do it with love. We nurture and celebrate our communities and connections. We give voice to what is in our minds and hearts. We expose our humanity. They remind us.

If this isn’t healing, what is?

Originally published on WBUR CommonHealth Blog on January 15h, 2019.

*Mixing and sound design by David Goodman

Music:

1. Catie Curtis, “Passing Through”

2. Dar Williams, “The One Who Knows”

3. Sugarland, “Shine the Light”

I met Denise last spring, in a 6-week Narrative Medicine course I co-taught for social workers. She stands out in my memory of the group in many ways: her outfits were always exquisitely coordinated; her eyes sparkled and often glistened with tears; she easily offered humor, truth, and consolation. She always made comments that illuminated the texts we read together in ways I had not previously considered. Perhaps most striking of all was how profoundly the workshop seemed to impact Denise: “It was a monumental experience for me, in my life, as a clinician and as a person.”

For 28 years, Denise has been serving victims of trauma in Brooklyn and Queens. Although she considers herself strong emotionally and mentally, she inevitably experiences vicarious trauma through her work. Narrative medicine - a field based in the belief that effective clinicians must know how to receive, interpret, and help craft their clients’ stories - offers her a means to work through some of that trauma: “(It) is a healing measure that I can tap into that will keep me grounded, keep me available, keep me conscious. To never ever find myself in a position of ‘Oh, I’ve heard this, I’ve seen this before…’ No. Each time is my first time with that person. And (narrative practice) helps with that.”

As traditional narrative medicine occurs in a classroom, the course consisted of closely reading and discussing a piece of poetry or prose every week. Then each participant, facilitators included, composed a brief response to a prompt related to the reading, and shared our writing aloud with one another.

Denise has always used writing to sort out her experiences. But the practice of narrative medicine expanded her appreciation for the power of the written word: “Reading someone else’s writing and trying to make sense of it, how I might interpret it, and then using that to be able to reflect and write about a personal experience I’ve had – that blew me away.”

Denise models how clinicians can incorporate narrative practice into both their personal and professional life. She finds it helpful to do on her own during a busy day at work: “Sometimes I’ll have to sit in my office and close my door and start writing a thought that I had about an experience I just had with someone, and it’s safe. It’s in a place where I know I can go back to it. I can ground myself. I can be in a place of objectivity instead of subjectivity.”

Denise also introduces her clients to their own narratives during therapeutic encounters, by asking: “What was the first thing you thought when this happened to you?” She observes how an invitation for them to tell their first-hand experience of the trauma “allows them to push everyone else to the side. Often people don’t think about their first thought, their first emotion. And that gets them to a place where they can write a (first-person) narrative.” 

She guides them to develop their story, through writing or speaking: “Some write a paragraph, some only write three sentences. And those three sentences we can talk about for weeks. Some of them choose not to write at all, but instead to record their own voices. And they save those recordings in their phone, and they (listen to it) every so often.” Some of her younger clients even choose to narrate through rap.

Once they begin writing - songs, lyrics, poems, any genre - Denise sees them “healing and moving forward towards closure. They’re experiencing and developing or recognizing skills they had but suppressed or pushed to the side, because they didn’t consider it important. But it’s that very strength they have in them that draws them to a place of healing.” There is a sense of ownership, mastery, and pride that they gain from becoming authors of their life experiences.

Denise encourages her clients to see themselves as she sees them: individuals who have experienced traumatic events, not victims whose stories can be lumped together in domestic violence tropes. She discourages them from telling their stories as: “I’m a victim of domestic violence and this is what we victims of domestic violence…” Denise instead tries to help each client realize, through crafting a unique story, that “You’re an individual. This is what you went through. How did it affect you: your thoughts, your body, your emotions? I want them to be able to write that out. That narrative is so crucial.”

Denise recognizes, in herself and her clients, the radical changes that narrative practice can cause: “It keeps you from being stuck and unmoveable, to a place where there is mobility, and there are choices. And those choices can be so powerful that it can get people to move from A to B, but in some cases all the way down to Z (where they) find closure.”

Denise vows to carry onward in her clinical practice and personal life using narrative medicine as an unparalleled resource: “This story practice…I don’t think that there’s any medication that people can take that does the particular piece that this work does. On a cognitive level, physical level, emotional level – it’s not anything that can be replicated anywhere else.”

Below is a poem Denise wrote in honor of her clients and their experiences.

Out of the Darkness

Wounded outside in

I felt as though I have sinned

Wounded inside out

Oh how I wanted to shout

But there was no way out

Confused by the tormenting of my mind

It often told me to flee

And escape this life of mine

These intrusive thoughts

Powerful and fierce

Lead me into a world of

Self-affliction and fear

In the shadow and secret nights

You told me I was your Queen

Once you called me wife

Confused by your touch

Why did you love me so much?

Your hands strong and mighty

Forming a fist that would crush my body

So, still I stood, unaware of my own breathe

Somewhere in the corner of my mind

Wondering when will the night terror end

The story is out now and my song is strong

No longer will I hide in the corner of my mind

No longer confused and afraid of the midnight air

It stops here

Listen to my story loud and clear

I am free of the misery and constant fear

No longer vulnerable or invisible I am here

I will sing loud and strong for the courts to hear

What you have done to me over the years

It stops here.

The table has turned now

Hide in the shadow and behold your fate

As you will spend the rest of your years

Fearing those who have heard my song 

More about Denise Briales:

Denise has worked in the field of social work for the past 28 years servicing victims of trauma both from secular and sectarian backgrounds.  She herself has been exposed to many traumatic events that have made powerful imprints in my personal and professional life. Denise has long used journaling as a therapeutic tool. Since being exposed to narrative medicine, when she reads back her written words, she attains centering, grounding, awareness, and healing from the experience of vicarious trauma that affects caregivers in mental health professions. 

More about Annie Robinson:

As a patient, and as a caregiver in the role of a doula supporting women through birth, abortion, and miscarriage, I have experienced the power of stories in healing. I recently graduated from the Narrative Medicine master's program at Columbia University, and will begin at Harvard Divinity School next fall to explore the borderlines between ministry and medicine.

I also curate an oral narrative project called “Inside Stories: Medical Student Experience”, for which I interview medical students about their experiences in medical school with the intention to provide a platform for their own person healing, self-realization and empowerment through the sharing and receiving of personal stories. You can listen to their stories on iTunes podcasts or here: http://in-training.org/inside-stories.

Over the coming year, I will be working as an intern for Health Story Collaborative and writing a series of blog posts that profile remarkable individuals committed to honoring and making use of stories in health care. If you or someone you know might be interested in being interviewed, please contact me at healthstorycollaborative@gmail.com.

There are days when dealing with this chronic illness just becomes too much and I simply want to curl up in a corner and wait for it to end.

I’m tired of all the doctor appointments, being sent from specialist to specialist, trying to explain over and over again the many symptoms I’ve been experiencing every day for the last 5 years.

I’m tired of pain, of weakness, exhaustion, difficulty breathing, night sweats, lack of sleep, trouble swallowing, muscle spasms, twitches and involuntary kicks and flinches, and all the other symptoms that have joined the party.

I’m tired of trying medication after medication, hoping to find one with minimal side effects or allergic reactions.

I’m tired of dealing with the insurance company and explaining to doctors why I can’t work. I’m tired of feeling like I need to convince everyone that there is something very physically wrong in my body when to the outside world I look normal.

I’m tired of doctors giving one diagnosis, then another, doing their best but not able to provide any words of comfort. First, they say I likely have ALS, then Amyloidosis, then Isaac’s Syndrome, then some other horrible incurable disease but no one can be sure yet, so I’m told to wait to see how it progresses. I’ve waited and I’ve waited, it’s been 5 years, can someone just tell me what the heck is going on?

I’m tired and weary. These are the thoughts that rise to the surface of my mind from time to time, and I’m starting to feel more comfortable with that now. I’m learning to give myself space and permission to feel what I feel when I feel it.

For me, this means…

• Allowing myself to feel sad on days when it’s really windy and I long to be windsurfing

• Acknowledging that I really miss having a healthy body that’s able to participate in all of the sports I love    

•  Having the courage to say no when asked to join friends for an evening out, trusting that they will ask again and not give up on me because of my illness

• Making peace with the reality of a life that is largely lived indoors, and being much less active than I would like

• Admitting the feelings of guilt I have about not being able to work and not advancing in my career

• Accepting the feeling, whether real or created in my own mind, that I’m being judged for not trying hard enough

•  Allowing myself to feel angry and frustrated because there is no end to this illness “treadmill”, and there is nothing I can do to change it.

I don’t have to save myself from these uncomfortable emotions by plastering on a brave, happy face when I feel like crap because let's face it, being chronically ill sucks. I don’t stay in this headspace all the time because I don’t feel this way all the time, but I do let these thoughts and feelings have their way with me when needed, knowing that I can always find my way back to a place of happiness and contentment.

Discovering the Buddhist art of being present to life just as it is, completely free from judgment, has been paramount in helping me learn to stay open to all of the thoughts and feelings that arise through chronic illness. The practice of remaining open-hearted toward all of my experiences has reduced my resistance to the various difficulties I face and has given me the ability to unconditionally accept the circumstances of my life. Viewing my challenges with kindness and treating myself with compassion empowers me to make good choices for myself and helps me think creatively about the life I want to live.

Self-compassion has stretched me into learning how to accept help and kind words from friends where earlier I would have tried to go it alone because I didn’t want to show weakness or be a burden to anyone. I’ve also learned that when I’m having a pretty rough time physically it’s okay for me to say, “I don’t have to have a ‘productive day’ today; today I’m watching Netflix because that’s the very best and kindest thing I can do for myself."

This willingness to kindly do what my body requires by accepting help or resting for weeks on end is no longer something that makes me feel less-than or weak; it provides what I need for living a full life. I’ve become truly happy again and am loving life and all the possibilities it holds, despite my illness and its restrictions.

Self-compassion has given me what I need to look at my life and situation in a way that says, ‘My illness isn’t who I am; I’m someone who still has a lot to offer to the world’. I’ve become excited about my life and what may be on the horizon instead of being fearful of what might happen. My illness has benefited me by giving me the time for some much-needed self-reflection, which has led to a greater insight into who I really am, how much I’m loved, what I love, and the many ways I can still add value to the world. It feels a little like I’ve been given the gift of a new life.

While I can no longer do many of the activities I love to do, like windsurfing, tennis, golf (just about any sport really), I have begun to discover that I am much more than the sports I played or the career I had. I have a wide variety of loves in my life that previously I either ignored or just hadn’t noticed. But because my health has thankfully required me to slow down, I am discovering them now.

I am so much more mindful of the beauty, life, and love I see all around me every day. I enjoy it in the deep and meaningful conversations and experiences I have with my wife, I experience it in the wonder of nature and the myriad shades of green that bloom at the beginning of spring, I see it in the care-free dogs that are affectionately taken for walks beneath my balcony every day, I hear it in the laughter and joy of the children playing at the nearby school, and just as nature and dogs never seem to worry about what’s in the future, these kids have yet to discover that worrying and looking ahead is a “thing”: they are just revelling in each moment.

Learning to live this way has not eliminated my illness and symptoms, but it has started to remove the suffering caused by focusing on what is wrong, what I can’t do, and what could go wrong. I have slowly found myself realizing that, although I’m not healthy, and physically I sort of feel like I’ve been hit by a bus every day for the last 5 years (and that bus always seems to back-up to hit me one more time just to be sure I don’t walk away without a limp - I hate that dang bus), I’m not suffering anymore. I’m learning to live life defined by what I love, not by my illness.

Because of poor health, my career may have stalled and my physical abilities may be limited, but my capacity to be curious, to take a deep inner look at myself, to learn self-compassion instead of self-pity, to try new things that I would have been too fearful to attempt in my old life, to be willing to take chances like I’m doing right now by writing, have flourished.

At 51-years-old I’ve finally realized that my purpose is to keep discovering what I love, doing what I love, sharing that love with others, and showing those closest to me that they are truly and deeply loved. Chronic illness might have the ability to impose boundaries on my life but it will never be able to set any boundaries on the things I love.

I find myself no longer waiting for my illness to depart and my life to arrive; I truly have a life I love right now.

Within the boundaries set by a mysterious neurological condition, Chad loves spending his available energy enjoying good food, getting lost in different worlds through writing and reading, strolling in the sunshine, watching sports and being an armchair quarterback. He lives on the Canadian Prairies with his wife (who is also managing her own chronic illness--what a fine pair).

My social anxiety plays me like a deceitful little game, except I spent the last 15 years pretending like I wasn’t on the court. The painful shyness I faced as a child, my inability to smile at any adults except my parents until the age of eight, the meeting with my fourth-grade teacher that my concerned mother sat through, afraid her daughter wasn’t voicing her needs: it’s always been you, dear social anxiety. My conviction in middle school that my friends didn’t care about having me around: that was you, too, wasn’t it? You pushed and pushed with such excruciating force until that stupid conviction became my reality. As did tears, insecurity, and a lack of reassurance I desperately needed. In high school you hid behind black skinny jeans, punk rock band t-shirts, and an eating disorder that wasn’t glamorous like in the movies. You danced around obsession, meticulous numbers, and crippling self-judgment. This is my reality, and the reality of millions of other people. And we are being ignored.

What if our society ignored the number of people who suffered from cancer each year? What if we claimed that cancer wasn’t real and its effect on lives was simply a conjugation of one’s imagination? If we stigmatized this illness, how would it impact those 15 million Americans who live with it? How would it make them feel? We don’t ignore those battling a physical illness because it’s usually easy to see how they manifest, yet mental health disorders can be harder to see and are thus treated differently.

The number of people who live with cancer every year is equivalent to the number of North Americans who live with social anxiety. That’s roughly 7 percent of our continent’s population. The disorder is more prevalent among teenagers and college students: an estimated 10 percent of college students suffer from significant social anxiety disorder, and general anxiety disorder affects an astounding 25 percent of teenagers. So why is the second most commonly diagnosed form of anxiety disorder is also so commonly overlooked? It’s challenging enough to live with a mental illness: its stigmatized reputation is an additional obstacle to overcome.

The stigma American society has so carelessly placed upon those struggling with social anxiety is rooted in insensitivity and judgment. The ignorance that drives this stigma not only discourages people from seeking help but attempts to convince them they have no problem to begin with. The pressure to break out of the shyness and nervousness becomes debilitating. When someone is repeatedly told their struggles don’t exist or their social awkwardness is just something they need to suck up and get over, we begin to believe it. I know I did.

My social anxiety made me question all the wrong things. I questioned the value of my curvy physique. I questioned my ability to be alone for hours at a time and not crave any verbal exchange. I questioned why people assumed I was so shy when I didn’t raise my hand in class, even though I always knew I had something to offer. At the time, I didn’t know what kept restricting me. I had questioned why everyone I knew was making friends at college, while my “friends” kicked me out of their roommate pool instead.

My first semester in college drained me. The pressure of constant socialization and having to present my best, bubbly, and agreeable self to everyone I confronted took a toll on my mental health. If I was anything but outgoing and always eager to go out on a weeknight, I was afraid my worst internal fear would come true—people would only pretend to be my friend because they felt a sense of pity towards me. I spend an exorbitant amount of energy and time rehearsing what tone I would use to respond to my name during attendance call in class, or considering which shoes would make the least noise when I walked into a 300-student lecture. One night my roommate asked me to make a phone call to the resident hall janitor because our window was jammed. I knew exactly the look I shot her, one brimming with such nerves and astonishment that makes someone wonder if they’ve suddenly sprouted a second head. She stared back at me quizzically and within seconds quickly muttered, “Never mind, I’ll do it.” The conversation ended abruptly. Why couldn’t I do it? Social anxiety.

But now I know it’s you, anxiety. Things make sense now: why I over-think the most basic social interactions, why I can’t present an accurate first impression no matter how hard I try, and why making friends is a hurdle I never fail to trip over. I need constant reassurance from the people in my life that I matter to them; that they want me to be there, and I haven’t just shoved my way in. I understand now that you are the driving force behind that heavy weight of insecurity that has traveled with me throughout my first year of college. But I want you to know that I am not afraid of you. Coming to college has given me the courage to speak openly about the daily challenges you provide. Because of you, I have discovered my passion of advocating for mental health awareness. I have overcome my eating disorder. I have made a friend or two, and I’m working on making some more. Thank you for being a constant in my life, dear social anxiety. Yes, you are a piece of me. But if you think you are going to define me, you are so painfully mistaken.

Mikayla is a sophomore at Boston College studying Communication with a minor in Management and Leadership. She is an active writer for Spoon University, an online food publication, and also enjoys playing guitar and spending time in New York City.

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

By Val Walker

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

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

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

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

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

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

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

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

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

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

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

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

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

• People build new friendships.

• They advocate for change in their own towns.

• They work to change laws.

• They gather together in prevention activities.

• They support the newest members of the group.

• They find their voice again.

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

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

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

Recommended Resources

• Robyn’s Foundation, The Sun Will Rise

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

• GRASP: Grief Recovery After a Substance Passing

• Hand Delivered Hope, Boston 

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

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

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

Keep up with Val at www.HearteningResources.com

In 2001, when I was 58, I developed odd symptoms in my legs - pain and weakness, falling on the sidewalk and unable to get up without assistance. I first went outpatient to my physician who had no idea what the problem might be. Nervous and living alone in an apartment, I carried my portable phone with me. One evening I fell and couldn't get up. I called 911 and the EMTs from my neighborhood fire station came and transported me to the ER of my Harvard-teaching community hospital in Massachusetts. The physician asked me to get up from the examining table and walk. I told him the problem was not walking, but falling. He found nothing wrong with me and sent me home. A few days later, at home, I fell again. I called 911, got the same EMTs, went to the same ER, was told nothing was wrong and was sent home again. Then I fell a third time. Having the same EMTs for all the three calls, they assured me that this time they would insist I be admitted. I was admitted but to the geripsych unit , as they believed I was making my symptoms up for attention! This scenario is well known in the disability community. If a physician cannot determine a medical cause for reported symptoms, the default position is too often psychiatric.

I was placed into a bed and later an orderly told me to get up, as the psychiatrist wanted to interview me. When I told him I couldn't get up, he told me I was lying. After the interview, I asked to see a "regular" doctor. She came, had blood work done and later told me the results indicated kidney failure. She put me in the ICU, all the while I kept saying to everyone "It's my legs" to no avail. Retrospectively, I know my elevated creatine level indicated not kidney failure but evidence of a rare muscle disorder. After 3 days in the ICU without kidney failure, the team finally decided to listen to me. They did a muscle biopsy and told me I had Polymyositis. I was in a med-surg unit for a few days, commenting each evening to my attending "This is odd. My feet are paralyzed". Next evening "My ankles are paralyzed", Next day "My lower legs are paralyzed". Then I had complete respiratory failure and was in the ICU on mechanical ventilation for four months, not expected to live. A friend told me the medical team was frantic, not knowing what was wrong with me. Eventually, I was discharged to a respiratory rehabilitation hospital as I was still medically unstable. I stayed for a year. I was then discharged to a nursing home on a trach and feeding tube, where I have been living for 13 years. In 2006, I was decannulated after 5 years intubated, to the surprise of many.

In 2010 I went for a consult with a Rheumatologist at a Boston teaching hospital where I was made a research patient. After 9 years, I got my correct diagnosis- Guillain-Barre Syndrome (GBS). The team concluded I have GBS based on three factors - my report of what I have since learned is called "upward progression of paralysis", the fact that Polymyositis is not a paralyzing disorder, and finally, by looking at the original muscle biopsy slides, where the inflammation of the muscle tissue was insufficient for a diagnosis of Polymyositis. Because of the failure to be properly diagnosed, I never had the opportunity for treatment of GBS in the acute phase.

Today, I am in my 14th year as a nursing home resident due to quadriparesis, an inability to not only walk, wash, and dress myself, but also to cook and clean. I can use my hands in spite of the contractures of my fingers, and can brush my teeth, feed myself, turn pages of books, read, write and use a computer. My mind is intact. In 2011, I got a power chair which permits me to go outside when I want, after 9 1/2 years living inside facilities. I'm an accidental nursing home and disability advocate. In 2011, I read an article in the Boston Globe about the possibility of a nursing home bed-hold program being eliminated. This would have put me at risk, after a hospitalization, of losing my "home" and having to live in another facility, if my current bed were filled while I was away. I wrote a letter in support of retaining the program to our House Ways and Means committee. The letter was circulated and I was asked to become a state and national nursing home advocate. I am now an active nursing home, disability and elder advocate, nationally published writer, speaker and consultant. You can find some of my work by googling "Penelope Ann Shaw, PhD". I am leading an interesting, and hopefully useful, and fun life as a survivor of acute GBS. I enjoy my personal life immensely, mostly my lifelong friends who have supported me in every way during my medical journey.

Originally published in 2016 by the GBS/CIDP Foundation International: “It’s Only Rare Until It’s You. Stories of Strength and Survival from the Guillain-Barre and Chronic Inflammatory Demyelinating Polyneuropathy Community”. Reprinted with permission.

Penelope Ann Shaw, PhD, a doctor of French Language and Literature, is a former university faculty member and administrator of English Language Learning. Now a nursing home resident, she is on the boards of the Massachusetts Advocates for Nursing Home Reform, and the Disability Policy Consortium. Boston. She is a member of the disability patient access focus group at the Massachusetts General Hospital. Boston. She was named an elder trailblazer for Older Americans Month 2016 by the U.S. Department of Health and Human Services. Administration on Aging's Administration for Community Living.

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

By Val Walker

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Keep up with Val at www.HearteningResources.com

At 44, Karin had a successful career and three nearly-grown children. Then, in 2004, she began a relationship that at first felt dreamy but slowly deteriorated. Eventually, Karin found herself in a position she never imagined: as the victim of domestic violence. Initially, her partner seemed lovely. He was a respected member of her community, well known for his dedication to volunteer work and he was amazingly attentive and romantic. 

Over time, though, the relationship changed. It was a gradual progression spanning four years, starting with emotional and psychological abuse, and eventually escalating to physical abuse.

Here, Karin bravely shares her story of surviving domestic violence.

It’s a narrative that illustrates how insidious this process can be, and how difficult it is to get out of such relationships. As a survivor, Karin has struggled with her own shame and the guilt she feels for exposing her children to this situation. Today, after a lot of hard work and self-reflection, Karin feels stronger than ever. “I was determined to come out of this kicking,” she said. “And I have.” She has a great job and volunteers for a domestic violence prevention organization; her grown children are doing well and she is newly married. Karin’s story is a reminder that this could happen to any of us, and underscores the importance of trusting your own instinct about what feels right and what feels wrong in a relationship.

Domestic violence, defined by the United States Department of Justice “as a pattern of abusive behavior in any relationship that is used by one partner to gain or maintain power and control over another intimate partner” permeates our culture. It is estimated that at least 1 in 4 women in the United states will experience domestic violence in their lifetime, and while both men and women can be targeted, the victim is female 85-95% of the time. Domestic violence occurs across all races, ethnicities, socio-economic backgrounds, sexual orientations and religions. Abuse, based on fear and intimidation, can be physical, emotional, psychological, economic, and/or sexual.

On a societal level, the costs of domestic violence are tremendous. Health related costs alone are estimated to exceed $5.8 billion annually. As in Karin’s case, domestic violence typically escalates over time. Homicide is often the end result. It is believed that 33% of all female murder victims are killed by in intimate partner. For the most part, these homicides are predictable and preventable. By educating ourselves about the issue, we can all become a part of the solution.

Most importantly, Karin wants everyone to know that resources are available. If you have any concerns, seek help.

Originally published on WBUR Commonhealth Blog, October 12, 2012

Resources:

For information, services and help for yourself or someone you care about:

The Domestic Violence Services Network, Inc. http://www.dvsn.org 1-888-399-6111

1-877-785-2020 is a 24-hour, free and confidential multi-lingual domestic violence hotline in Massachusetts

To find the domestic violence program nearest you outside of Massachusetts, call the National Domestic Violence Hotline: 800-799-SAFE (800-799-7233).

To learn more about domestic violence and sexual assault, visit

http://www.ovw.usdoj.gov/domviolence.htm

http://www.janedoe.org/learn_more/what_is_dv#What_abuse

To find programs that help people who abuse/control their partners, visit

http://www.janedoe.org/know/know_resources.htm

In April 2014, Sue Levy shared her story of living with Lymphangioleiomyomatosis (LAM), a rare, progressive and potentially fatal lung disease. Now, she shares her story of navigating infertility, a journey that started years before, but ultimately was informed by, her LAM diagnosis.

Sue, now 37 and married with two young daughters ages 18 months and four years, underwent six unsuccessful cycles of IVF before she and her husband decided to explore alternative ways to have children. They initially pursued domestic adoption but ultimately decided on egg donor and gestational carrier.

A couple is deemed “infertile” when they are unable to conceive after one full year of unprotected sex. In the U.S., approximately 11% of women 15-44 years of age have a difficult time getting pregnant or carrying a pregnancy to term, according to the CDC. While the use of Assisted Reproductive Technology is much more common today than it once was, the term “infertile” is still fraught with negative connotations, especially for women. Dealing with infertility can bring up feelings of shame, failure and loss.

Today, Sue can honestly say that her inability to get pregnant was a blessing, in part because her lung condition is estrogen responsive and can worsen in pregnancy, but mostly because she cannot imagine having any other children than the ones she has now. Her story reminds us that although our plans don’t always unfold as we had hoped, we can find unexpected joy and beauty along the way if we open ourselves up to the possibilities.

Resources:

http://www.health.harvard.edu/topic/infertility-resource-center

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

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

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.

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

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.