How Stories Transform Our Lives: A Conversation with Lani Peterson

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. 

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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

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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

Out of Control with Cancer

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

So why do I feel so traumatized?

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

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

Call it cancer lite.

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

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

This was starting to get scary.

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

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

When did medicine switch from treating symptoms to preventing them?

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

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

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

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

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

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

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

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

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

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

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

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

But we’ll never know.

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

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

Staring

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

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

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

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