Lani Peterson, Psy.D.

Director, City Mission's Public Voice

By Val Walker

Everywhere we look, it seems too many people insist on having the last word—on TV (the election campaigns, the pundits and experts), on Facebook, at our office meetings, at our kitchen tables. We all know how it feels to be trying to tell our story, but some “listeners” must have the last word. Those last-word conversationalists take our message and turn it into theirs. They usurp the meaning of our message before we can even finish our story. We not only feel unheard and unvalued, but downright robbed. We may have cynically concluded we’re living in a last-word culture, so we’re forced to be last-word conversationalists ourselves to survive these days.

This last-word problem has been bugging me, particularly this election year. But thankfully, contributing to Health Story Collaborative has become a way to proclaim the sanctity of telling our stories and having fruitful conversations-- free from last-word conversationalists. Through Health Story Collaborative, I’m fired up about the transformative connection between storyteller and story listener when we go beyond having the last word.

To add a fresh perspective on the topic of going beyond the last word, we’ve invited Lani Peterson to weigh in on how sharing each other’s stories—the telling and the listening-- creates meaning for our lives. We are pleased she could join us.

Lani is a psychologist, professional storyteller and coach who specializes in the use of story as a healing art and powerful medium for personal growth, connection and change. Drawing on her broad and varied experience with individuals, teams and organizations in the profit and nonprofit worlds, Lani brings a unique combination of personal stories, knowledge of the theory behind stories, and vast experience helping people use stories to transform their understanding of themselves and others.

Lani is currently the director of City Mission’s Public Voice, currently working with Boston’s homeless to tell their stories for healing and social change.

Lani's professional training includes a Doctorate in Psychology from William James University, and a Masters in Counseling Psychology from Lesley University. She is a member of the National Speakers Association, the National Storytelling Network, and serves on the Executive Committee of the Healing Story Alliance, which she recently chaired for five years.

Perched on a green velvet sofa in Lani's sunny living room in Cambridge, I enjoyed our lively, two-hour conversation chock-full of aha!-moments and astute observations. My mug of coffee was left untouched on her table, as her stories and insights so intrigued me.

I’d like to share the highlights of the experiences that have transformed Lani’s life as well as the lives of the many people she has touched through her work.  To do justice to her wisdom, I’m presenting her “answers” to my questions as inspired stories in their own right.

When did you know in your bones that your calling was storytelling?

Lani: Living in Philadelphia in the 90s, I was a psychologist as well as the mother of four young children under the age of six, two of whom were adopted. Trying to balance both my career and family, I worked for a time as a community outreach worker presenting talks on parenting to a wide variety of groups.  Although I had completed my doctorate in psychology and was licensed to practice therapy in three states, I had put my private practice on hold. I had worked with clients for nearly ten years, but still wrestled with doubts about whether I had enough knowledge, training or skill to truly help another heal.  Self-doubt caused me to relentlessly pursue more reading, training and learning about what practices led to healing, but ironically, the more I learned, the more I doubted my own skill as a healer. Teaching (while simultaneously learning!) parenting skills seemed like the perfect safe road to follow while figuring out what I wanted to do when both my children and I grew up.

One evening, I was invited to speak to an audience of 300 parents on the topic, “Children and Self-Esteem.” So there I was in front of this huge room full of people, telling parents about how to foster self-esteem in their children, all the while not clear in my own gut that I had the right stuff myself.

I plowed through my prepared material anyway, and as I concluded my lecture, I invited the audience to ask questions. After many practical questions about child discipline, one woman bravely spoke up and shared some of her story before asking a question. She had come to the US from India after her husband died, hoping to give her son a better life. But sadly, her son was being bullied at school, and she felt helpless to do anything about this. “Do I stay here, or should I go back to India?” she implored. It seemed the whole room felt her confusion and despair.

I knew I had to say something, offer something to her, but none of the theory or literature I had on the subject felt relevant. Somehow, a story came to mind from a much younger time in my own life. Before I started, I let her know, “I don’t know yet why I need to tell you this story, so do with it what you will.” I told her about a time when I was a student at Smith College, and  asked to fill in at the last minute to do an interview with the famous poet, Maya Angelou. My roommate, who was scheduled to do the interview, had come down with the flu and asked me to step in in her place. She handed me a list of questions to ask and sent me off. After hearing Maya Angelou speak and share her poetry, all the questions I had with me felt meaningless. So when I finally sat down with Maya Angelou after her performance to interview her, I spoke instead about my own feelings of being lost and confused, seeking out whatever comfort and wisdom she might offer me. Maya took my hand, and said, “Let me tell you right now, dear, there isn’t one right path. It’s all about how you walk on the path you’re on. So, if you fall into a hole, let yourself grieve and cry, and when you climb back out—and you will—you can find your way to dance again.”

As I told my own story of being lost and confused to this woman standing alone in the audience, it felt like we were in a trance, in a deep, one-to-one connection, although the room was filled with 300 people. When finished speaking, I simply uttered, “That’s all I know.”  The woman, appearing moved by Maya Angelou’s message, simply said, “Thank you. It is enough.” I watched as the woman left the auditorium that night surrounded by a group of other audience members who appeared to be reaching out to her. I realized that something profound had happened. I realized the act of telling one’s story as well as the act of listening to stories was indeed more than enough to support one on the healing journey. That moment of profound connection between teller and listener provided a revelation for me both professionally and personally: Through stories we can courageously share our vulnerabilities, understand the truth of our experiences, and create new meanings for those experiences. It was a new way of understanding how insight, understanding, and healing could occur.

For me, it was also the moment when I discovered my calling.

What a moment that was, Lani, a moment of truth if there ever was one. And now, as the person interviewing you, your story about interviewing Maya Angelou certainly speaks to me. There are so many layers to any story, and each time we share it with a different person or group, we find a different meaning or takeaway from it. This leads me to ask you, on a deeper level, what happens between the storyteller and the story listener?

Lani:  First of all, we’re all story listeners, even when we hear our own stories. When we speak out loud, our words enter a different part of our brain, the auditory part of our brain, the part of our brain that listens, so we are hearing ourselves in a very different way than when we think only to ourselves. We become a listener to our own story, enabling us to take a different perspective, gain insight and perhaps discover new meaning in what we have said.

That’s so true, Lani. Maybe that’s why I talk to myself so much when I’m alone! And as a writer, I can see why reading my stuff out loud helps me make sense out of all those words.

Lani:  Yes, we can get perspective on the stories we are creating in our heads when we say them out loud, and even more so when we hear other people’s reactions to them. People can get stuck in the stories that they keep locked inside their heads, plus they convince themselves that there is only one particular meaning to their story. Life is far too complex for anyone’s story to be held hostage to only one meaning.

And because we’re all both storytellers and story listeners, we have the potential and ability to free each other from being limited to any one meaning, especially if it is a meaning that brings us pain, limits our potential or keeps us distant from those we love.

Furthermore, when we are able to find new meanings in our stories, we are using additional neural pathways in our brains. In short, by finding alternative meanings in our stories, we can continuously revise and increase our neural paths. Ultimately, healing comes from expanding our relationships to our stories, seeing how our own judgment and self-concept contained in stuck stories might have been holding us back. 

You’ve worked with so many groups with various socio-economic and cultural differences, and with marginalized people—all with extremely different judgments, self-concepts, beliefs and values. You're enormously accomplished with bringing people together through storytelling and story listening, especially to be advocates for social justice.

Lani: I worked with City Mission Boston to create The Public Voice Project. Although the program was originally created to help recently released prisoners learn public speaking skills to address issues related to reforming the CORI Laws, I found that examining and telling their personal stories led to huge change and growth amongst the participants. I watched how people could be transformed by building trust over the weeks and opening to explore their more difficult stories. They wrestled with shame and self-blame to gain insight into how their past story came into being, and through that process find self-compassion and compassion for each other. They moved from seeing themselves as either victims or perpetrators, to now being the hero of their story. It was incredibly empowering and healing to own their stories and take responsibility for how they wanted to live the next chapter of their lives.

Since 2004, Public Voice storytelling programs have evolved to train both men and women who have been previously incarcerated, youth at risk, homeless or victims of social inequity. Our storytelling graduates have gone on to speak to lawyers, congressman, churches and schools. The speakers are able to see firsthand how their stories can make a difference in the lives of others, or bring about change within the community through putting a human face on the issues, raising awareness and motivation to get involved in social change efforts.

 Some questions we explore in our storytelling groups include:

• Who are you in your story?

• What have been your challenges and obstacles? Who has helped you? What are the inner resources, skills and strengths  you have relied on to get you through the hard times?

• How does your story guide you in your life?  Does your current rendition of your story sustain you or constrain you as you try to move forward in your life?

•  Who needs to hear your story?

• How can you help your audience both hear and understand your story?

• What changes (both internally as well as for others) would you like to see happen as a result of telling your story?

• By reaching out and sharing stories with the wider community, not only do participants see that they matter, but they begin to trust that they matter no matter what.

You’ve also worked with healthcare facilities conducting storytelling workshops for providers, patients and families.

Lani: I have brought my story work into several hospital settings, including Dana Farber Cancer Institute, Boston Medical Center, The Greater Baltimore Medical Center and most recently, the Roswell Park Cancer Institute in Buffalo, NY. At the Roswell Park Cancer Institute, I facilitated a story-listening workshop with chaplains, delivered a lunch time lecture on story listening for their medical personnel, as well as worked with the staff who run their Life Recorded Program which had been initially developed by Story Corp. The focus of the Life Recorded Program is to elicit and capture the stories that help patients remember who they are beyond their illness, beyond their identity as a sick person or as a sick person’s caregiver. Additionally, Roswell Park supported a healing retreat for cancer survivors and their caregivers to explore their healing journey towards wellness. Over a hundred patients gathered together for a full day of story sharing. Using Joseph Campbell’s hero’s journey model, they shared their stories of:

• Who was I before I became sick?

• What have been some of the hardest moments and how did I get through them?

• Who helped me that I didn’t expect?

• Who did I think would help, but they couldn’t be there for me?

• What have been the external resources I have relied upon to get me through?

• What have been the internal resources I have discovered about myself through coping with the hardships on this journey?

• Who do I want to thank?

• Who do I need to forgive?

• Who do I need to ask forgiveness from?

• What I am grateful for?

Within my workshops I encourage participants to look at their stories from all different angles, not trying to change their story, but to expand it such that it can hold more of themselves. Patient stories are about so much more than coping with illness; they are about their identity and sense of belonging in the world. Doctors and nurses are dedicated to curing disease, but healing can happen without a cure. Healing is often connected to the stories we (and others) tell about ourselves. The wonderful thing is that we have so much control over that. Whether someone is challenged by an illness, recovering from a trauma, or coping with a loss, the stories we tell about our experiences and the meaning we make of it can be the beginning of reclaiming our lives.

Have you also worked with doctors?

Lani: At UMass Medical Center in Worcester, I consulted with a group of physicians and researchers studying the impact of storytelling on health equity disparity (CHEIR). They were interested in exploring the ways that hearing stories of positive medical intervention could increase the trust in minority communities to engage medical help or follow through on medical recommendations.  Although the researchers understood that story could be an important factor in gaining patient trust, they were in need of support to help successful patients convey their stories in a way that could captivate and inspire others. So, essentially I was hired as a story coach to teach storytelling skills to patients as well as to the physicians and researchers. These stories have since been captured on video and disseminated on radio and television throughout the community. New patients are now being screened to see if the stories they heard had an impact on their decision to pursue or follow through on medical treatment.

Patient’s challenges, seen through their stories of their cultural and social predicaments, not only encouraged other people struggling with symptoms to seek out medical help, but also helped doctors to communicate with their patients with more patience and empathy. One of the things that I am most excited about, is that researchers are also beginning to explore the impact of storytelling on the storyteller.  What does it mean to share your story with another, knowing that it could perhaps ease their medical challenge, if not even save their life? How does that change how one feels about themselves as the storyteller? Sharing stories is not a one-way process. Both the teller and listener can benefit from the interaction.

Something that’s been on my mind: How does living in the digital age affect how often or how deeply we share our stories? How much do you think our digital world is affecting us?

Lani: I remember that even when I was a little girl sitting at the dinner table back in the 1960s, the TV was on with the evening news blaring across the room. Media and its ability to steal attention from relationships is not something new. Over the past several decades, we’ve all gradually grown accustomed to letting media direct our lives, leading to distraction, multi-tasking, short attention spans.

There are well-documented accounts of the rise of addiction in the indigenous populations in Alaska during the 60s and 70s when family storytelling traditions were replaced by television. As children no longer sat through long evenings listening to the stories of their elders, certain life lessons and values were no longer handed down. The effects were not felt for years, but  researchers now make connections between the decline in family storytelling and loss of family cohesion. But fortunately for all of us, storytelling has been making a comeback.  Not only for children, but people of all ages are being encouraged to tell their stories as well as listen to the stories of others. Story Corps and the Moth are good examples of how storytelling is re-entering our culture, leading people to take a deeper interest in listening to each other’s stories as opposed to interacting with a device.

One of the problems is that social media tends to lack the depth of story that nurtures us. Facebook certainly seduces us with story, but these stories are often void of depth, values, or learning, causing them to lack the nourishment that stories can give us. It’s sort of like junk food—an addictive junk story to fill us for a while, but we feel hungry again very soon.

Yes, Lani, I’m glad you said that a story needs depth, needs the time for the whole story to unfold. I admit it’s the depth that I miss so much in my conversations these days with friends and loved ones. I just wish we had more time for sharing our stories, and finding more meaning from them—together.

Lani: I hope you can advocate for making the time to share stories more deeply.

I certainly will. In my work with elders as an activities specialist at assisted living communities, I’ll be thinking about you when I lead discussion groups and storytelling sessions. You’ve already motivated me to be a better story listener—a deeper story listener. Thanks so much for your time, your generosity, and your wisdom.

Afterthoughts: Lani’s Beautiful Takeaways

Four of Lani’s quotes were so helpful and wise that I couldn’t resist doing a quick recap of her stand-outs. These takeaways are worth savoring on their own:

“Life is far too complex for anyone’s story to be held hostage to only one meaning.”

“Healing comes from expanding our stories so we can find more than one meaning in them. We can see how our own judgment and self-concept has locked us into one meaning that might be holding us back.”

“By reaching out to the wider community, not only do we see that we matter, but we begin to trust that we matter no matter what.”

“When we own our story, when we are accountable for it, we don’t need to isolate ourselves with it, but we can go out into the world with it. This story has helped me, and it can help you. It’s not a one-way process to tell our stories.”

Resources

Lani Peterson's site

Boston City Mission

CHEIR at UMass Medical Center in Worcester

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

Keep up with Val at www.HearteningResources.com

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

So why do I feel so traumatized?

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

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

Call it cancer lite.

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

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

This was starting to get scary.

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

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

When did medicine switch from treating symptoms to preventing them?

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

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

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

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

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

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

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

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

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

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

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

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

But we’ll never know.

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

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

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

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

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

View fullsize

View fullsize

View fullsize

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

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

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

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

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

You can check out the CommonHealth post here. 

Sharon Perfetti

Executive Director, Cool Kids Campaign, Towson, Maryland

By Val Walker

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Resources, Further Reading:

The Stories Between,  www.thestoriesbetween.com

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

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

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

Keep up with Val at www.HearteningResources.com

When I was five, I wouldn’t let a single person near my hair. My mother had to go out and buy me an expensive bristle brush designed for sensitive scalps. She gave me a peek at it in the car as we drove home. “It’s a magic brush,” she told me. “A magitch brush,” my dad would correct with a wink.

 Still, hair-brushing time always filled me with dread. In a sudden burst of toddler witticism, I compared the process to airplanes flying into the back of my head. My mother and my nanny Marcy had to get creative. In a particularly successful method, I would wrap my arms around the hairbrusher in question and holler into her shirt as she teased out the snarls. In another approach, I would flip my head upside down and stand with the blood rushing to the tips of my ears as my tangles were torn apart. My dad lacked the courage to even try. On the mornings he was in charge of my hair, he spent half an hour gingerly skimming the brush somewhere over my head, leaving a knot hidden at the nape of my neck.

 My mother lost her hair twice. Every morning, she would wake up to another nest on her pillow, her hope to be spared shattered like broken eggshells. I was too young to grasp the gravity of this grief. I wrote her a poem as a peace offering, and then cut off my own hair to my shoulders three times. And while she fretted over her scarves, I admired them. She picked the most beautiful colors: blue with white-lined diamonds, swirls of autumn painted with the browns and reds of dying leaves, lilac stained with deep purples.

 When her hair grew back the first time, it arrived in curls. My mother taught herself to tame it with her hair dryer and various brushes, the scariest of which I dubbed the Red Brush. On weekday mornings in the winter, I would wake up to a pitch black sky and the distant croak of crows. I’d burrow under my blankets, listening to the sound of running water from down the hall. The house was dark but for the soft light from the bathroom, and it was a comfort knowing someone else was up, that she would soon raise the heat, flick on the lights, and sing me awake. It was a comfort knowing that my mother was standing in front of the steamy mirror, wrapped in a towel and curling her bangs, playing with her hair until cancer skulked away, defeated.

 I taught myself to braid after she died. She had showed me the basics – three pieces, weave under, over, under again – but I had never mastered it on my own. Even ponytails were beyond my ability. I spent ages in front of the mirror each morning, screaming in frustration. I worked at it until my scalp groaned in pain. Caring about the inconsequential was my means of survival. But now when I pull at my hair, I don’t worry about it being perfect. Instead, I remember the way my mother twirled her finger around the wisps of my hair when she told me that she loved the way they curled.

 On those mornings when we were running late and my hair was in no state to make its daily appearance, my mother would wash it in the kitchen sink. She’d rest a towel behind my neck and tell me to lean back, the tips of my hair dangling near the drain. I can still feel her fingers on my head as they traced rhythmic circles from one side to the other. I can still hear the squeak of air as she squeezed the shampoo bottle and made fireworks of soap bubbles float around us.

Anna McLoud Gibbs is a freshman at Harvard College. She has not yet declared a major. She is from Ipswich, Massachusetts.

Your scabs are elegant because they are outward signs of you mending and regenerating, creating soft new skin without even thinking about it. While you’re busy being angry about your inability to finish a task for work or dreading calling  someone back, while you’re regretting the choice you made last month, without even knowing it, you’re subconsciously reconstructing yourself, and your ‘big’ worries are trivialities compared to your body’s own constant maintenance of what is vital, what keeps you alive.

I’m not going to tell you to find someone to hold your hand even when it’s callused or scabbed. You’ve already been told that, and that doesn’t mean it always goes well, or will provide what you need. Instead, I’m going to tell you to learn to respect your own scabs, to find elegance and utility in the way your calluses grip your coffee mug. To not think twice before wearing shorts when there are chain grease stripes, scabs and bruises on your legs.

It’s far too easy to fear someone else’s split-second judgment about your scars or calluses or the shape of your muscles. But, while someone else may shake your hand for five seconds, you wear and carry it always. You are the one who watches your

fingers nimbly hop the keys of your keyboard as you type, lift the spoon in your breakfast each morning, and gently comb out your hair each night. As you work to modify yourself with your mind, recall that your body is doing the same, and respect it. Respect your scabs.

Annie Harvieux is a senior at Harvard College, where she is an English major.

Jennifer Sax

Director of Communications, Good Shepherd Community Care

By Val Walker

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

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

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

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

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

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

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

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

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

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

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

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

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

Good Shepherd Community Care

http://www.gscommunitycare.org

The Conversation Project, and Founder, Ellen Goodman

www.theconversationproject.org

National Health Care Decisions Day (April 16, 2016)

http://www.nhdd.org

Honoring Choices Massachusetts

http://www.honoringchoicesmass.com

The Institute for Healthcare Improvement

www.ihi.org

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

Keep up with Val at www.HearteningResources.com

It was quiet that afternoon. Weekday afternoons were always quiet in our house. Dreamy, lazy, languid in the heat of summer, resting on the downstairs couch I heard you calling me from upstairs. Your voice had that same timber, will always have that same timber every time you call me upstairs. I rose, hesitant to leave that sunlit couch, but your voice again Claire, come up just a moment! there again beckoned me up, up into that bathroom. I entered the room and met eyes with you and you said I just need your help for a moment in that hushed way, in that way that made me know it was ME who needed to help you, and it couldn’t be Jill. That hushed language between parents and older siblings is one you learn from the moment that second child is born. Out on the smooth counter-top sat Dad’s old electric razor. I lifted it, felt it weigh in my hands. I knew what was coming, God we all knew it was coming. It had been coming since April, since that hushed conversation, that same hushed language in the car on a same sunny afternoon, that same don’t tell Jill had weighed the same as this razor weighed now. You sat in that chair and stared back at me from the mirror, but your eyes weren’t meeting mine, not really, and mine weren’t meeting yours, not really.

You looked like a child then, like I did when I was five and waiting for Dad to comb my hair, and you looked up at me, your child, in that same way. Waiting for me to comb your hair. The razor felt heavier now, the weight of that hush felt heavier now, everything was heavier now the moment you looked up at me like that.

I turned the razor on.

It became real then.

I fumbled my way through the already thinning patches of your scalp. I felt unsure, unready, wielding that razor. Shouldn’t I know how to do this, shouldn’t everyone know from the movies? They do this all the time in movies, this moment right here. But they don’t tell you about how heavy that razor is in movies, they don’t tell you how much steel can weigh when you look at me like that.

You made a joke like you always do - that Irish bleak humor never turns off, not even for a second. I laughed. I appreciated it.

You could tell how hard this was, I could tell how hard this was, but we just kept staring and not seeing, not actually. But we knew, and we kept that secret, you and me, between ourselves and the hushes and that heavy, heavy razor.

I finished and cleared some stray hairs from your crown, and you sat (admiring yourself, I liked to imagine). Seeing yourself, that terrifying feeling of seeing yourself, and while you were seeing yourself so was I. I was seeing you, actually. For the first time, maybe.

You were thinner now, medications already starting to wear on you. But you looked determined. But you looked scared. But you looked at me and I knew you were looking at me as equal now, because I was seeing you for the first time. How is it that after sixteen years I am only now seeing you for the first time?

We’ll be okay you said. That ‘we’. The ‘we’ that meant we were in this together, as partners, as equals, that ‘we’ that made up that hushed language, that ‘we’ that had been weighing down on me since you pulled over that car on that sunny afternoon in April and you told me that you had breast cancer.

Yes, that same ‘we’ that made me know we—you, and me, and Jill—we would all be okay.

Claire Stauffer is a senior at Boston College, where she is double majoring in Biology and English. This piece was originally published in The Medical Humanities Journal of Boston College, Volume 1, Issue 2, Fall 2015.

September 1990

In her dream, there was an intruder in the house, a frightening presence. She found herself sliding close to the wall as she tried to become invisible, to find a way to escape. Outside, she saw a group of people standing on the lawn. Her husband was there, her children, as well as friends and colleagues. Several policemen arrived. An officer stepped out of his car with a bullhorn yelling: “Betsy – Betsy! Stay in front of the window so we can see you! Then when we shoot we won’t hit you!”

I pour myself a cup of tea, musing about the dream and the feelings it evoked. I am struck by the way my psyche is working to sort things out. Breast cancer. Ever since that moment of diagnosis, that jumble of terror and grief, my mind has alternated between dead slow and hyper-speed. The mammogram, biopsy, partial mastectomy – events that ripped through my orderly life - only numbed me further to this trauma. Yet this dream had sent a message directly related to my dilemma: should I agree to undergo radiation treatment? As a psychotherapist, I believe in the unconscious. I guess I have to trust its wisdom in putting these images together.

I must get going, for I have to go back to the hospital. As I head up the stairs to change, I experience again that strange sense that has haunted me throughout this time: a sense of profound loss and fear coupled with a feeling of incomprehensible reality. Every day in my office, I hear so many people speak of how difficult it is to take in the enormity of their troubles. I marvel at their stamina, their dignity, their bravery. But I cannot relate it to myself facing breast cancer, for I feel so out of control, so abnormal. My life seems to be passing by me in a series of jolts. It is so difficult to express my feelings, for I am topsy-turvy. I can see my home, my daily tasks, my work, my family. Yet I am separated from all that by the image of a neon sign constantly flashing in my head: I have cancer I have cancer I have cancer. I see a woman walking toward me on the street, and I want to scream out to her, to ask if she has it too. Or I want to blame her for not having it. I look so normal - but nothing is normal, whatever that means.

Scary things tend to happen in rooms that have no windows. Lying on the hard treatment table in the radiation suite I await the “marking up,” the tattooing around my breast that will guide the beam of radiation. Those dots will be mine for life. I stare up at the inane poster of a cute kitten pasted on the ceiling. Technicians move around me with what look like slide rules and triangles in their hands. I am the challenge, they have the formula. While I recline, awaiting their solutions, I distance myself and see this experience as a movie scene: semi-nude woman, one arm carelessly thrown up over her head, harsh bright lights all around. Is this really happening? The staff is kind but impersonal. I envy them their distance from this disease even as I feel isolated by their detachment. They photograph me; I feel like a tumor. Then they tattoo dark blue ink dots in a large rectangle around my left breast - the guide for daily treatment, for 33 times. I worry - my heart is under there.

Before leaving the hospital, I have to meet with the doctor who will be in charge of my treatment. I must sign a release form forgiving them if the treatment causes me irrevocable harm, such as a fatal tumor, or heart damage. And of course, I have to expect to be burned from radiation. Is this really necessary? Can I trust that the treatment won’t put me at further risk for more breast cancer? I feel so cynical about it all and then, suddenly so angry I can hardly contain myself. Rationally I sort of understand all this, but I am no longer rational. Somehow I switch into coping, clench my teeth, sign the form, and leave. Exiting the garage, I am asked if I am a patient. I am not a patient! So they charge me the visitor amount – nine dollars for my one-hour visit. I am enraged and drive blindly out to the street.

I am driving now, back on the same road, still in the same day, heading to my office. But I am not the same. I have a patient to meet in an hour, and I am just going to make it. I feel enormously strained in my heart. Where can I put breast cancer for 50 minutes? I must look so changed; I must radiate fear and anger like a thundercloud. But when I walk into my office I am complimented on my dress… and I open the cancer file in my head and put my experience inside. I turn myself over to my patients’ pain. What a relief. I can do this.

This is the day after Thanksgiving – and the first day of radiation treatment. Am I thankful? I try to put it into perspective; as people have said to me I am lucky; it could have been worse. This will not be as bad as having a mastectomy. That is true…but am I lucky?

Another underground hospital garage, dank and cold. Down, down I drive, watching the clock and worrying I will not be able to find a space. Is that enough of an excuse for not showing up? I find my way to another radiation site in this huge hospital. A nurse leads me to a closet-like changing room. “Everything off from the waist up, dear” she instructs. I am trembling as I hang my clothes in the steel locker. Later, I cannot find the right locker.

As I emerge into the waiting room I surreptitiously scan it. There are eleven people here, all in white hospital gowns like me: they have cancer. There are men, women, and a teenage boy – he has no hair under his Bruins cap. In a wheelchair in the corner, her head wrapped in a scarf, sits a pale young woman, a basin in her lap. No one looks at each other; they simply wait. My shield of denial is crumbling, for the reality of why I am here can no longer be denied. I want to bolt out the door, out of this place of cancer. I do not want membership in this club! I feel devastated, alone in my fear and pain. And I know I must repeat this scenario for six and one-half more weeks.

Again I am driving home, the same road, the same day. A replay flashes through my mind: the treatment room, the enormous radiation machine, the technicians leaving the room while I am radiated, the hum of the machine, a mobile of hamburgers swinging over the table. The hamburgers are to distract the children they treat, who are harder to manage when they are frightened. I am the model of cooperation – I want them to shoot straight.

On the kitchen calendar at home, beside the date, is the number 33. Each day it will go down; as I cross it out it seems more hopeful, one less treatment to go. I call my husband and tell him what the experience was like. It does not feel like me talking to him, for I am in a faraway place. I have this unreal sense again, for to talk with him about what to have for dinner seems so insignificant. Do we still do dinner? Am I still me? What is it I have lost? It is what I have gained that has caused the feelings of profound loss: a new identity. I have a disease. I am a cancer patient. I belong to that club, the cancer club. My normal life is gone.

As I set the table for dinner I trim the tulips I bought earlier. As they are squeaked into their vase, they are still the same. That gives me pause. I take the salmon out of the refrigerator – how many times have I set this table, cooked salmon for dinner? Through the gain of cancer I have lost normal, for living my life, work, and daily tasks at the same time as I endure treatment for breast cancer isn’t normal. Reflecting on this feeling, I see my life now as two parallel tracks: on the left, the usual track of a day, breakfast, work, dinner with my family; on the right, the unusual track - the letters that spell C A N C E R. That image, in all its starkness, captures the feeling. I focus on it as I place the fish in the pan, then have to pause, because the image is changing. Some tiny connections are materializing between those two tracks, some small everyday predictable links that may start to ease this whole ordeal for me. One of these is happening right now – as I’m making dinner for my husband. It’s salmon. Salmon is normal.

Originally published in 1995: Tyson, Elizabeth, 1995. "The Case: Salmon Is Normal." Second Opinion 21, no.1 (July 1995): 35 -37. Reprinted with permission from the author.

I'm not a diabetic, I’m a person with diabetes. I was diagnosed with Type 1 diabetes in 1993. I thought my year of exhaustion, weight loss and crazy mood swings were the result of a bad marriage and the stress of parenting 2 active boys, ages 3 and 6. But for some reason, that day, after drinking my umteenth glass of water which did nothing to quench my thirst, I stopped and thought about the symptoms I'd been living with for over a year that suddenly seemed to coalesce in a moment.

I called the doctor and described my symptoms. “Do you think I have diabetes?” No one was going to tell me that over the phone. I went in for a test and 24 hours later I had a diagnosis: Type 1 diabetes. A week later, I was staring at a much-xeroxed piece of paper titled Diabetic Diet with boxes and columns to fill in: food item on the left, amount in ounces and cups on the right. There were other pieces of paper: Diabetic Eating Guidelines and Diabetic Food List. The diagnosis was traumatic enough, but these guidelines and sample diets shrank my world into one miserable, tunnel-visioned focus. I was a diabetic–walkers, blindness and kidney failure loomed on the horizon.

But I followed the guidelines and life came into balance. I gained weight, which was good though initially unappreciated. After months of uncontrolled high blood sugars, I had lost quite a bit of weight from an already thin frame. A few months before my diagnosis, friends began saying, “You look gaunt. Are you OK?” They said “gaunt” but I heard “thin,” another reason it took me so long to see a doctor. I was eating what I wanted and loosing weight–how could this be a problem? But of course it was.

In those initial months I faithfully followed the Diabetic Diet. I ate the suggested amount of food from the suggested food groups and took the suggested amount of insulin to cover the carbs I was faithfully counting. One night, after gobbling down half a peanut butter and jelly sandwich to cover plummeting blood sugars (I still had no idea how much to eat to offset a low), I was hit by a bolt of insight. I said to myself, “I’m going to fit diabetes into my life not the other way around.” In other words, I would define what I ate and when. I would define how I lived my life, not diabetes.

It’s taken years to develop healthy self-care practices. I'm not rigid but I have routines–routines I created myself not routines imposed upon me. I’ve come to believe wellness has 3 interactive practices: pursuit of knowledge about the condition, a creativity practice, and a mindfulness practice (or some kind of spiritual practice). The word "practice" is used deliberately to mean an activity that is part of life, essential to life and life affirming.

My blood sugar control can still be erratic and difficult at times. Sometimes I feel overwhelmed, irritated and discouraged. Feelings can’t be avoided but they can be handled with skill and kindness. Creative, meditative practices have encouraged me to take care of myself with kindness and compassion, using knowledge, creativity and mindfulness. There are no quick fixes. Sometimes situations turn around rapidly after a diagnosis but deep and lasting change is the work of a lifetime.

Words are powerful. I may be dealing with a condition or illness but I am not the illness or the condition. The word "diabetic" defines me as a disease. I’m not. Sometimes groups or individuals claim a noun or adjective as a way to re-claim power, but I’d rather nix labels altogether.

I actively explore the question, "what does it mean to be truly healthy?" Advances in technology, nutrition and exercise are important, but I want creativity and empathy at the center of my life. I'm a public health professional, health advocate, editor, writer, artist, parent, and so much more. I also happen to have type 1 diabetes. That perspective has deeply affected how I take care of myself and interact with others.

About Valerie:

Valerie has lived well with T2 diabetes for 23+ years. She credits a mindfulness meditation practice, access to health care, healthy food and exercise, a circle of supportive friends/family, her creative pursuits in visual arts/writing–and luck–to being complication free so far. She works in community health, and trained as a diabetes lifestyle coach. She believes both clients and providers would benefit from narrative medicine practice in the healthcare system.

Gretchen Hunsberger was first diagnosed with stage 2 pancreatic cancer in 2013, which she successfully treated with radiation and chemotherapy. But fourteen months later in spring 2015, her remission ended when the cancer returned, this time at stage 4.

In June 2015, Gretchen shared her courageous story about deciding to forgo medical treatment and embrace her impending death. Gretchen realized the unparalleled value of community, and how much can be learned from individuals living in Stage 4. She mourned the loss of her vitality, but through mindfulness and meditation practices, experienced joy in the wonders of this world.

Gretchen passed away on August 31, 2015.

Resources:

To learn more about pancreatic cancer, ways to get involved, and sources of support, visit Pancreatic Cancer Action Network.

For inspiration on navigating cancer, explore Bernie Siegel and Mark Nepo's writing.

At the age of 17 at an all-male boarding school in Virginia, Jenks developed what would grow into a life-threatening eating disorder. It began with over-exercising, and quickly spiraled into bulimia, stimulant abuse, and drug and alcohol addiction.

Over the following ten years, the eating disorder ruled Jenks’s life and took uncountable things away from him. He hid his disorder for years, ashamed to tell friends and family that he was struggling with what was considered by many to be a “women’s disease.” It did not help that he did not know any males with eating issues to whom he could turn for advice.

Eventually, Jenks opened up to his family about his co-occurring issues with alcohol, drugs, and food. Hospitalizations and treatment programs helped him address his substance addiction first, but in the absence of those behaviors the eating disorder surged. He realized his pattern of trying to fill the void he felt inside with whatever was at hand: drugs, alcohol, relationships, exercise, or food.

Now 31 and in solid recovery, Jenks discusses the mixed feelings he had for years about letting go of his eating disorder: part of him wanted freedom, but another part was unwilling to give up the rituals. When Jenks began his journey towards recovery in earnest, at a treatment center called A New Journey in Santa Monica, California, it was not without stumbles.

From these experiences, Jenks realized his passion for service. He describes how his recovery is based in giving back to others who are themselves recovering from alcohol and drug addiction and eating disorders. One of Jenks’s primary missions is to encourage men to engage in open conversations about their struggles with food, which he believes is the essential first step to healing.

Originally from Rock Hill, South Carolina, Jenks currently resides in Venice, California where he works as a House Manager in a sober living house for men.

I’m a photographer and multidisciplinary artist whose work centers around the idea that sharing stories and making art about potentially isolating experiences can help make those experiences less lonely. I map experiences that many of us share, but don’t always talk about.

I’m currently working on an evolving art project about bereavement called Grief Landscapes, in which I’m documenting the wide variety of ways that people respond to loss. First, I’m inviting people to answer a series of questions about how they grieved after someone’s death. I'm then photographing, in extreme close-up, something that evokes the memory of the person who died, transforming it into an abstract landscape inspired by the person’s grief story.

Grief is often described as a journey, but it’s an intensely individual and often isolating one: rarely do people speak openly about the range of ways of grieving, and there seem to be many misconceptions about the grief process. I’m using the project to examine a number of questions about grief and bereavement: What does it look like? How do people navigate it differently? How does grief change us? Grief Landscapes documents grief not as a prescribed set of steps or timelines but as a place where there are no right answers, just an exploration of new territory.

You can live anywhere in the world to participate in Grief Landscapes, and I’m looking for contributors of all ages and backgrounds, with different relationships to the deceased, and different lengths of time since the loss. To view the project so far and submit your story, go to grieflandscapes.com.

Grief Landscapes is supported by a grant from the Ontario Arts Council.

Mindy Stricke is a multidisciplinary artist creating photographs, interactive installations, conversations and collaborations. Her work has been awarded grants from the Toronto Arts Council, the Ontario Arts Council and the Canada Council for the Arts, exhibited throughout North America, and has appeared in international publications including The New York Times, Time Magazine, Newsweek, and the Smithsonian Institute Photography Initiative’s book and online exhibit, Click! Photography Changes Everything. Originally from New York, she now lives in Toronto with her husband and two children.

Each fall at Boston College, the Women’s Center hosts Love Your Body Week (LYBW), “a week of programming dedicated to promoting healthy body image on campus.” The Women’s Center, in collaboration with other organizations, aims to give students space to reflect on their relationships with their bodies. Inclusivity is a key feature of this week, as many of the events of consider how body image intersects with race, gender, sexuality, ability, and class. This year events ranged from lectures on body image and the media and panel discussions on colorism, to a performance of Eve Ensler’s Good Body andEmbodied Expression, a therapeutic painting session.

The week kicked off on Monday, November 9 with the opening reception for Embodied Stories, a photography exhibit by Ben Flythe, a student photographer. Flythe photographed students and their bodily identifiers—tattoos, scars, burns, skin color, and birthmarks, for example. Accompanying the portraits were quotations from interviews with the students, who discussed what their bodies mean to them. Although the portraits highlight the specificities of each body, the students never become just bodies: their identities shine through; the photographs celebrate the dynamic and complex ways identities align with body image. In his gallery talk, Flythe emphasized the diversity of the stories he captured. These individual stories, he noted, speak to our own stories of embodiment. We each have an embodied story, and putting our own stories into dialogue with the stories of others—those portraits, for instance—is to understand that we are all connected.

This year I was fortunate enough to have a small hand in LYBW, as I helped to bring two student speakers to the opening reception. Leading up to the event, Marwa Eltahir—a Women’s Center staffer and co-coordinator of LYBW—and I sat down with Erin Sutton and Justin Kresevic and heard their stories; we were struck by how their stories spoke to the goals of LYBW and the complexity of body image. My work with Health Story Collaborative prepared me well for this task, and I adapted the Healing Story Session guidelines and questions for the purposes of the event. What’s more important, however, is that Health Story Collaborative taught me how to listen, to be present as someone shares their story, to accompany them. What mattered most was letting them tell their stories that needed to be told.

At the reception to Embodied Stories, Erin told her story of living with bulimia and her difficult, continuing journey to recovery. She spoke to the difficulty of coming to love her body at Boston College, where body image and appearance issues so often go unnoticed, unsaid. She expressed her gratitude to the people who have supported her, and spoke to the daily challenges she faces in coming to love her own body. Justin spoke to the difficulty of being short, when masculinity is associated with being tall and muscular. This dissonance has affected his personal relationships, and he works everyday to accept his own body. Justin emphasized the need to work against the problematic ideals of men’s body images: masculinity is as individual as each of our bodies.

Erin and Justin challenged all of us in attendance to understand truly what Love Your Body Week means. Loving one’s body isn’t something to be taken for granted, to be considered easy. When so many images and ideals of bodily perfection and worth hold up problematic and impossible standards, coming to love one’s body is a challenging and harrowing experience. By sharing their own stories of embodiment and acknowledging their continuing journey towards loving their bodies, Erin and Justin asked us all to consider our own stories.

I am so grateful to have been a small part of LYBW and to have heard these stories. Erin’s and Justin’s stories, along with the stories of students photographed by Ben, speak to how important it is to talk about these issues and how valuable it is to enter into meaningful conversation with others. These stories have stayed with me, in my own process of coming to terms with my own body. Sharing stories, at the end of the day, is about building community, starting conversations, and realizing that none of us are alone, that our stories all matter. I look forward to hearing more stories, perhaps telling my own, and continuing the worthwhile conversations around body image happening both at Boston College and beyond campus.

Erin ended her talk with a powerful statement about our selves, our bodies, and our stories: We are all worth it.

Change is inevitable, but it’s how we choose to deal with that change that determines who we are as people.

Health is something that we take for granted. Because we never fully understand its value until it’s gone, it often isn’t until we suffer some form of physical or mental breakdown that we realize just how valuable it is. But, sometimes, when we lose something so treasured, something much better is found. For me, when I lost my health, what I gained was a journey into discovering who I really am. I transformed into a person that I didn’t know existed, and this made me redefine myself.

In my youth, I was an avid snowboarder, skateboarder, weightlifter, paint-baller, and rock climber. But, of all the sports I loved, volleyball was my muse. I thought that I would play it forever. I racked up numerous medals in the high school, regional, and varsity circuits. I attended nationals in club volleyball, and snagged a silver and bronze medal in provincial beach volleyball tournaments. I loved it.

With plans of becoming a police officer, I found myself finishing university with dreams of my next steps. A partner, a big house, a fancy car, and then maybe some cute babies---all those picture perfect things we all aim for. I thought that life was in the palm of my hand. Little did I know, sometimes things don’t last forever.

It started with annoying muscle cramps, and then progressed to debilitating gastrointestinal, immunological, neurological, and psychiatric symptoms. I plead my case to over 15 specialists and had over 100 vials of blood drawn. No answers. After years of searching, I started to wonder if the doctors were right that nothing was wrong, that perhaps it was all in my head. But then, a neurologist from Hamilton’s Neuromuscular Clinic in Canada decided to take a closer look. My intuitions were validated as I was finally diagnosed with a rare disorder called Isaac’s syndrome, or immune-mediated neuromytonia.

Everything that I had previously envisioned about my life was gone. The volleyball. The fancy car. The policing career. All of it. Because of my health problems, I was pushed to the limit and forced to adapt to new limitations and reinvent the story of my life. Now, I’ve grown into someone who is completely different than the person I used to be. Before, I was a jock who was insecure no matter how low my percentage of body fat was or how dark my tan was. I was desperate for attention, I was impatient, and I was a know-it-all. Looking back, I knew nothing.

“Patience is bitter, but its fruit is sweet.” – Aristotle

Before my diagnosis, things came easily for me. Sports, school and relationships all came effortlessly in my life. Because of this, I naively thought that getting answers to my medical questions would be the same. I thought that they would come quickly. If not, obviously, the first doctor I consulted would set his entire life aside in order to figure them out; that didn’t happen.

It took me a long time to adapt to my situation. I learned that when your back is up against the wall, and there is nowhere to run, you learn to work with what you have, even if all you have is patience. Some goals and dreams will come quickly and others may require a tremendous amount of persistence. And, that’s ok. There is no race to the finish line. Life’s most triumphant moments may take a while to manifest.

Patience became the foundation of my journey. It was the lesson that came first, and gave me the strength and courage to accept the lessons that came next. It allowed me to endure a decade of emotional and physical struggles---rejection, failure, loneliness, and most importantly, symptomatic struggles. I learned that I could become someone that others could rely on. Instead of always receiving help from others, I was finally able to give back. I had the ability to give the greatest gift of all to people around me: my time and energy.

“It does not matter how slowly you go as long as you do not stop.” – Confucius

I believe that the learning curve in life is the same as the learning curve in sports. You start slowly, get a little bit of movement, but then fall down, and have to get back up again. At times, it was hard to keep going when everyone told me that I was fine. But, I remained patient and remembered that sometimes the biggest breakthrough will come when we’re on the verge of giving up. It’s not fair to quit based on what we think will happen. We have to keep searching for answers.

Looking back, I remember the devastation I felt after each negative blood test and each consultation that left questions unanswered. But, now I know that there was always forward movement. One doctor led to the next. One negative test set up another. Even if years went by without tangible improvements, I was still always moving forward. Every step, whether positive or negative, is the result of all your previous steps. Maybe it won’t come in a week, a month, or a year, but sooner or later, you will eventually find what you’re looking for.

“Be kind, for everyone you meet is fighting a harder battle.” – Plato

The more I moved away from the person that I used to be, the farther I ventured into the unknown. I realized that I was becoming more aware of those around me. The more I felt my own darkness and pain, the stronger my compassion for others became. I felt for people in similar situations and understood what it was to be chronically ill without answers. I realized that life wasn’t just about me. Everyone has problems. Everyone has battles you know nothing about. Feeling this new sense of compassion, I understood that even the doctors that dismissed me were doing the best that they could. Just like in volleyball, these people became part of my team.

"Healing is a matter of time, but it is sometimes also a matter of opportunity." – Hippocrates

Early in my illness, I was very attached to the reality I had constructed. I was like a child who clutched his toys and cried when they were taken away. When I lost my health, I lost my identity. Letting go is a part of life, and the sooner you’re able to, the sooner another part of your journey will begin. The day I realized that I would never be able to play volleyball again was the first time I fully understood the true scale of my loss. I had lost the love of my life.

The changes in my life were involuntary, and made me understand the power of surrender. Being forced into submission, but also still consumed with the need to push for answers, I was no longer under the influence of my egotistical desires. I became more peaceful with my thoughts---more loving and more understanding. Our struggles are really here to guide us somewhere else.

Each step of my journey was full of challenges, but I realize that I was unknowingly on an expedition of self-awareness and improvement. Although I lost many things along the way---a stable income, athletic talents and the freedom to do what I want---I gained something much more valuable: peace of mind. I became conscious of myself and I feel extremely blessed that I was able to go through something so transformative while having the ability to become someone I truly admire. Regardless of what you’re going through, I can confidently say that life has a way of getting us to where we need to be---both spiritually and physically. We just need to believe that it’s never the ending; it’s always the beginning.

This piece appeared on “The Good Men Project” website in September, 2015.

About Derek Carbone:

Hailing from Ontario, Canada, I was diagnosed with autoimmune Neuromytonia, or Isaac's Syndrome, after graduating from the University of Guelph. In my spare time, I enjoy reading, writing and researching various health topics. Follow along as I write for my blog: HealthVerdict.com.

You can reach Derek by email at derek_carbone@hotmail.com.

“Kate, I just got a call from Jane. She wanted to know whether we wanted to go…wanted to go to…”

My mother closes her eyes and scrunches her brows together as she says this, trying to find the word in her brain.

I ask, “Whether we wanted to go to church with her?”

As my mother then thanks me, I try to hide my unease.

Such exchanges – in which my mother forgot a word or an entire idea, and I completed her sentence – began when my mother was only 51 years old and I was a sophomore in high school. By the end of my senior year, my mother's condition had worsened to the point where she could not comprehend my daily notes, which only said when I would return home from school.

My mother emotionally changed during this time as well. She often became angry, especially when she attempted to deny her memory issues. Sometimes, though, her denial gave way to sadness, as she accepted her new truth: she had the memory struggles of a much older woman.

Both of these emotions – anger and sadness – underline how difficult my mother's memory problems were and still are, for her and for my whole family. We all struggle. We watched her undergo a staggering change – from an exceedingly intelligent woman who graduated magna cum laude from college to one struggling to read.

Despite these clear symptoms, help was difficult to find. At first, my mother attempted to empower herself and take action. She reached out to a local health case management organization that accepted her state insurance. This facility provided her with samples of trial medication to hinder the progression of her memory loss. Struggling just to pay rent, we could have never afforded these medications on our own.

My mother regularly took her medication. She did crossword puzzles. She felt hope – until the organization’s medication samples ran out. She came home from her appointment that day and declared that she would never go back.

Ultimately, my mother would need to visit a geriatric health center specializing in care for the elderly in order to get a formal memory examination and brain imaging. With state insurance, we waited for months to get an appointment. It took a full three years to get a diagnosis, though we were grateful to have the costs covered.

In the end, my mother was diagnosed with Frontotemporal Dementia (FTD), an illness I had never heard of before. This disease has no clear causes or risk factors, except for possible genetic inheritance, and no known treatments. It causes shrinkage in the frontal and temporal areas of the brain, often at a young age (between 40 and 70 years old), resulting in emotional liability as well as memory problems. As in my mother’s case, it is often initially misdiagnosed as mental illness. This is not necessarily the physicians' fault, however; FTD and certain psychiatric disorders manifest themselves in remarkably similar ways. This is a small reminder of how health challenges connect us all.

Once my family and I learned that my mother's true illness was FTD, we were overwhelmed. We were shocked by the devastating emotional changes that would come with FTD. We also had to learn how to navigate the modern health and legal systems. As my mother became increasingly dependent, and we focused on issues such as paying her bills and finding her a safe place to live, we had to simultaneously “prove” her disability in court. Now, my father has acquired the title “Conservator of Person” so that he, with input from me and my siblings, can make decisions on my mother’s behalf. This isn’t easy.

My mother does not recognize that she has memory issues. Without realizing it, she often acts like a child. She cannot participate in society, or even in our family community, like she used to; she cannot read the newspaper or even a simple word, and she lacks the emotional stability to maintain relationships. She craves attention from others, though, and will even have temper tantrums when she feels ignored. I have watched my mother stomp off to her room, sulking, many times.

One of these temper tantrums actually caused her first adult daycare center to dismiss her. The employees at the center felt that my mother agitated other clients against the caregivers. Perhaps she did, unintentionally; my mother does quickly become anxious and upset when she is not actively engaged in an activity or when her day deviates from routine.

She dislikes boredom and harbors a longing to be helpful – an impulse which often goes unrecognized by society. My mother is actually quite eager to perform simple tasks, like setting a table. She loves to feel usefully engaged and be an active participant in chores or activities.

I am grateful that my mother can actively participate in this way at her current daycare center. Here, she feels safe and full of purpose. My mother loves to attempt to help other clients. She often talks with them when they feel sad or upset, and this truly helps other clients to manage their emotions. My mother also participates in art therapy, pet therapy, and simple sport games, along with other clients. She really enjoys the social, recreational atmosphere that the center offers her.

At this center, my mother's caregivers provided her with a community and a purpose. They support her and treat her with compassion. To them, my mother is an adult woman – which seems to be a simple thought yet is actually a profound affirmation of a dementia patient, who is often stereotyped for immature behavior and simplicity. Dementia patients are adults, although they might act like children, and they deserve to be treated as such. Surrounded by such positive treatment and respectful attitudes at her daycare center, my mother has been happy in the past few years.

But with the passage of time, she now needs more intensive care. She struggles more, internally and externally. Her emotions have become quite explosive and unpredictable. Daily activities, such as bathing or brushing her teeth, have become lengthy and complicated exertions. My mother's daily hygiene routine is a particularly potent source of frustration and stress for her, and this exemplifies how her internal and external conflicts are quite connected. Dementia has affected my mother's physical abilities and personality, as well as her memory. With dementia, and perhaps with illness in general, the physical and the internal are often intimately connected.

This connection between the physical and the emotional can make care-giving a complicated endeavor. My father is currently struggling to completely care for my mother, when she is not in adult daycare. My mother definitely needs full-time health services, but they are difficult to secure. Because of the high demand for a spot in a specialty care facility, immediate placement is rare unless it occurs in in the aftermath of a hospitalization. My mother has been on wait-lists at multiple long-term care facilities for more than two and a half years. For now, I am incredibly grateful that my father and her adult daycare center are able to meet most of her changing needs and desires.

My family’s experience with FTD has changed me. Now, I am committed to advocating for greater health resources for all, especially the most marginalized. While my mother's illness is rare, I hope that my family’s story encourages others to work for broader change. I hope others contact legislators about extending health care access for patients and caregivers.

More generally, I hope my mother's story can also increase awareness that different kinds of dementia exist. Some dementia patients, such as my mother, can remain quite active participants in particular communities. Though individuals struggling with dementia have gone through much personal loss, they may retain their desire to be involved and help others. They can help others, and have much more to offer than one may initially think – if their community will accept them.

As a student in college, I imagine the possibility of experiencing dementia myself in the future. I know what it is like to worry about the shortness of life in the face of medical difficulties. In this way, I feel I am connected to many others – to other students and to other individuals in general – who experience and observe a myriad of health challenges every day. Despite the fragility of health, we can be conscious of all that we have and try our best to always value and make the most of our time.

Katherine Divasto is a member of the Harvard College Class of 2016 and is a Psychology major.

My name is Nancy Marks. I have been a Boston-based printmaker and painter for more than twenty-five years. In addition to solo exhibitions, my work has been displayed in galleries, restaurants, and corporate settings. I am also a public health advocate and art teacher who is committed to helping others use art to engage in personal healing and community dialogue.

In 2014, I created The Intimacy of Memory, a body of mixed media paintings based on grief, love and remembrance. The work examined why people chose particular objects or keepsakes after someone close to them died. I was interested in the ways in which an object represents the person who died and the shared relationship with the survivor. How do objects celebrate a life? How do objects prompt memory and how does this memory change over time?

This body of work seeded itself fifteen years ago when the biological mother of my adopted daughter, Taylor, died of AIDS. Taylor was six at the time. As I cleaned out her mother’s apartment, I had to decide what to keep. Which items would hold memories of her mother and offer Taylor comfort both in the moment and throughout her life? As I selected a few dishes, her mother’s favorite shirt, a locket, a mirror, I knew it wasn’t just what I kept but also what I didn’t keep that would play a role in Taylor’s recollections.

As part of this exploration, I interviewed participants and meditated on what I had heard. When I began to paint, the layers of color seemed to mirror the layers of their recollections: feelings of loss, love and longing. While many details faded into the background, what I felt most acutely was the sense of connection that stretched from the present to the past. I began to see how relationships and roles become fixed in time and space at the moment of death. How we forever remain mother/father/grandfather, husband/partner, sister/daughter/granddaughter.

As I exhibited this work throughout Massachusetts, I started to feel that I wanted to more closely connect my art life with the power of personal narrative. Since this initial body of work, I have begun to host Intimacy of Memory workshops.

The Intimacy of Memory workshops are designed to allow participants to make art based on the objects they kept after a meaningful loss in their life. It approaches the complexities of grief and love using art as a central connector. Because so many don’t have language for loss, art can play a pivotal role in communicating emotion and promoting healing.

Whether the loss is fresh or long past, this workshop gives artistic space and voice to the grief and love you may have been nursing privately. While the subject is heavy for many, there is often laughter and joy as people share memories.

But the work doesn’t stop there. After a workshop, participants are encouraged to hang their art in public space. The goal of the public exhibition is to promote a community conversation about death, grief and love, three subjects that are often privatized in the broader culture. I know how deeply painful loss can be, but we make the healing process that much harder by not giving our losses adequate  "time.” After all, grief is really just remembering how much we love and miss those we have lost.

We all have a story to offer the world. Through our stories, I believe healing can be found. In high school, I started to really understanding this more. When I was a junior in high school, I began sharing bits and pieces of my story and my perception of the world around me in the form of hip-hop songs. I wrote about my identity as an African-American. I wrote about life growing up in the Bronx, NY. I even wrote about my future plans of one day becoming a doctor. This hobby continued as I transitioned to college and I truly began to realize the power behind music and the sharing of words in general. Words are definitely powerful.

Scholar Aaron Corn states, “Songs are indeed powerful. They have the power to soothe, the power to persuade, the power to provoke, the power to educate and the power to lament.” I experience this first-hand every time I tune into my music.

Last semester, as a junior at Brandeis University, I studied abroad in Durban, South Africa, with a program focused on community health and social policy. As part of the program, I had the opportunity to explore any topic of interest and complete an independent study project. For a long time I had no clue what I wanted to study. Throughout the semester I felt a strong calling, however, to pursue the connection between music and healing.

During the semester, I had the chance to live with host families both in urban and rural communities. While living in one of the rural communities, called Sandanezwe, my host-brother, Mduduzi, introduced me and the other students in my program to a project that he created in the community. Mdu was in his early thirties and he walked with a limp. Through conversations with him, I learned that he suffered from Polio as a child. The project he created, the Disability Special Project, seeks to create a safe space for the disabled community within Sandanezwe. It is a project established and solely maintained by the disabled community. I saw how Mdu’s experiences growing up in this community shaped his vision for this project. In South African society, and many other parts of the world, many people who are considered disabled face exclusion from society and other forms of discrimination. Although I had no prior experiences working with disabled people, meeting Mdu and hearing his story inspired me to learn more.

After much thought, I decided to go back and live in the Sandanezwe community for three weeks to conduct my independent study project. I titled my project “A Mirror to Society: An autoethnography reflecting perspectives of disability through personal narrative in a rural community in South Africa,” and through this project I sought to hear the stories of members of the Disability Special Project, with a focus on their self-perceptions. I also interviewed members of the greater Sandanezwe community to learn how they viewed people with disabilities.

In the middle of my project, I remember waking up one morning very frustrated. Throughout the process, there were many times when I had to throw my plan away. For example, there were many days when the weather was too cold or rainy, and no garden members would show up to work, which meant I wouldn’t be able to speak to anyone. This morning, instead of sitting around in misery, I decided to go for a walk and climb to the top of a mountain. I found a nice spot overlooking the beautiful scenery of Sandanezwe. I looked out to my left and saw an endless array of green mountains weaving off into the distance. I interrupted my gaze to select a song to play on my iPhone. Unlocks. Scrolls. Music. Genres. Scrolls. Instrumental. Scrolls. J. Cole. Scrolls. Love Yourz (instrumental). Click. My ears were then greeted with the soothing sound of piano chords. The instrumental was from a song by J. Cole entitled “Love Yourz”. While listening, I looked up at the mountain range, and the words “you can, you can, you can” rang through my mind. I started to think of the interviews I had done so far, and the responses that I had received, especially those of the garden members. “I can do things, but they won’t let me do it!” echoed the voice of one member in the garden. “I’m strong! I am a human being,” rang another garden member’s voice. I pulled out my phone and started to note my thoughts. My thumbs moved swiftly. “Don’t let nobody ever tell you, you can’t do,” I wrote, “Can’t walk, can’t shoot, can’t love, can’t live…” I was writing to those voices of oppression. I was writing to the oppressor. I was writing to myself.

One of the last questions I asked the garden members in my interviews was, “If you were to write a song to the community to help them to understand you better, what would you say?”As they answered I took note of the responses. “I can write that God is the beginning and the end, so all our challenges if you can take our problems and put them in God I think all our challenges will disappear,” one member replied in his soft-spoken voice. “I can tell people that I’m proud of myself in a way that whatever I contribute in the project it can also benefit the community,” another determined member responded. “I will write a song and say that if they see me as a disabled person they mustn’t think that I’m useless because they are so many things that I can do for them. They must respect me and have hope in me because I can do of the things that can help them,” said another. A group of three said, “We can introduce the song to teach the community that a disabled person can do anything that a person with no disability can do.”

It wasn’t my plan to write a song for my project but sometimes the best plan is to just live in the moment. I realized that this was what I wanted in my project all along. I wanted the greater community to hear the voices of these members of the garden. I wanted the garden members to know that their perspective matters. After another day and a half of reflecting on these responses, listening to the instrumental on repeat, and writing, the song was complete! The song is especially powerful because it was created using the words of the garden members. On my final day in the garden, a celebration took place. The Department of Agriculture and Environmental Affairs from a neighboring town came to meet the garden members and planted onion seeds with them, and I performed the song I created for them. Everyone crowded around me with big smiles as I began, and at the end of my rendition, the garden members all clapped and cheered. New life was deposited into the space. Seeds were planted both literally and figuratively in the garden that day.

You can watch the Mirror To Society video here.

Some of the most impactful people encountered in our recovery journeys are our treatment providers. They provide invaluable education, compassion, faith in our capacity to heal, accountability, and the best of them help us relearn how to trust.

I met Kim Wyman, the dietician at Monte Nido Vista, my first night of residential treatment. It was a Monday, the day every week when those furthest along in recovery prepare dinner for the whole house. To bless the beautiful meal they prepared and to cultivate a positive mindset before eating what for some of us was quite a challenge, Kim sang “Amazing Grace.” Her heavenly voice, glowing presence, and palpable joy for sharing this food in community brought me to tears.

Though we only worked together for ten weeks, Kim’s wisdom resounds in my head to this day, guiding me to stick to recovery’s course and reminding me of the healthy ways to meet my needs. In this podcast, she shares some of her perspectives on the process of healing from an eating disorder.

How we feed ourselves is an expression of how we feel about ourselves. Sometimes the most effective way to change how we feel about ourselves is to change how we feed ourselves. Kim considers Recovery to be a process of Recovering Self. She elucidates the different parts of Self that need to be actively, compassionately cared for, and explains how one must separate physical needs from emotional needs (to be seen, heard, witnessed, and acknowledged) in order to meet them all appropriately.

Activating sensory experience is one of Kim’s hallmark methods for recovery. She encourages people to get out of their heads and into their bodies by seeking pleasure, enjoying nature, and cultivating a loving relationship with food through the creative act of cooking, truly tasting food, and eating with others.

Kim explains the 3 tenets of recovery – never weigh yourself, journal, and reach out to others – and also offers advice about how to find the best dietician for you.

In addition to being a Registered Dietician, Kim holds a Master’s in Public Health. She has been working primarily with men and women who struggle with eating disorders since 1997.