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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

By Genevieve Hammond

Kidney Donor - MGH, surgery date 10/25/18

This event is called a Healing Story Session, but technically, my story begins with health, not illness. As a prospective kidney donor, the whole point was for me to be as healthy as possible, and I was. But there was something wrong with me that day in January 2018, when I scrolled through Facebook to find my friend and colleague Mike Romano telling us that, having  been diagnosed with polycystic kidney disease, he now found himself asking the “difficult” question: was there anyone in his orbit who would be willing to consider donating a kidney to him? What felt difficult to him to ask felt immediately, unquestionably, and profoundly right to me to answer in the affirmative. Because despite having general good health, the right blood type, and two kidneys that had always seemed to function quite well, I did have an affliction that weighed upon me. I believe that my subconscious soul recognized in this kidney journey the possibility of beginning to heal my heart, which had broken just two months before, on November 5, 2017, when I found my mother dead on the floor of her house. In the shock and emptiness I had felt since that day, I nevertheless spied something in the possibility of organ donation that might fill me again with peace.

My mother, Yvonne, was diagnosed with cancer in her tonsils in late October of 2016, at age 79, just four months after the death of her husband of nearly 30 years, my stepfather Jim. The year between her diagnosis and her death featured the full array of treatments at the Dana-Farber Cancer Institute, including both chemotherapy and radiation. Because of the intensity of the course of treatment, she spent several weeks on the cancer floor at the Brigham and Women’s Hospital, as well as extended stays at three different rehab facilities. The the treatment period was seven weeks, but because of the severity of its effects, Yvonne was continuously hospitalized or in rehab for more than three months. My brother Henry and I, her only children, spent much of our time with her, at appointments and treatment sessions, in hospitals and nursing homes, so that she wouldn’t be alone. I was stunned when I joined her for a chemo session for the first time, as the nurse who was administering the drug arrived wrapped in double layers of gowns to protect herself from even touching the very substance that was about to be dripped into my mother’s veins. On another day at the Brigham, a nurse saved her life in  what seemed to me to be a major heart event that had nothing to do with the cancer but everything to do with the unendurable pain of her burned-out throat. Even in May, when the oncologist declared her cured of the cancer, she was still stripped her of her ability to eat and the feeding tube that had been installed months before had to remain in place, as she slowly retrained herself to consume food, even when it tasted wrong and metallic and miserable.

Growing up in Brookline, Mass., my mother having worked as an administrator at Harvard Medical School and the Brigham for years, it was an article of faith that we were so lucky to live in this part of the country. It was like a talisman, I now see - one of the charms of what I think I thought of as my charmed life. Not perfect, not without sadness or failure or misfortune - but happy underneath it all. The day in November 2016 when Henry and I joined our mother on the Head & Neck floor of the Farber, when Dr. Rabinowitz told her that they had found cancer on her tonsils and adjacent lymph nodes, it was bad. But we were in the place that people came to from everywhere in the world to be treated for these things; this was a place with an entire floor devoted to precisely the kind of cancer my mother had. In the way that the radiation team targeted her cancer within millimeters with their fierce rays, that’s how focused these people were on specific types of cancer. What I would learn, of course, is that no matter how targeted the radiation, the physical pain would spread just as malignantly as the disease that was being stopped. In fact, it was the very way that they were focused, each in their own way, that precluded them from being able to see Yvonne as she was, fragile and stoic and terrified and alone in a fundamental way for the first time in more than 30 years. The way different people kept asking the same questions about where she lived and with whom and whether she was married made it clear that no one saw her that way except for Henry and me, and our spouses. That seemed wrong, in a way I couldn’t exactly identify, but that I felt in my heart.

The events of February 3, 2017 captured this dissonance for me perfectly. It was the last day of eight weeks of 5 days/week of radiation, and at this point she was inpatient at the Brigham’s “Cancer Center for Excellence.” I had left work early to meet her there and spend some time with her afterwards, and when I arrived, I found her very confused about what was happening to her; not the first time I had encountered her in this state, either a result of the overwhelming pain she was in or as part of the side effects of a Fentanyl patch for that pain. She was in tears and wanted me to go into the treatment room with her - not permitted. Eventually, we were able to reassure her that it was OK and no one was going to hurt her (?!), and she proceeded to the lab. When she came out, one of the two nurses who had followed her case came to say goodbye and asked us to wait a minute before returning to the Brigham. She returned shortly with a bubble gun to fill the area with bubbles in a celebration of the end of the course of radiation. She couldn’t have been kinder or had better intentions, and I even took pictures of the three of us;  but all I see when I look at it now is a film of smiles over the ocean of my mother’s agony, and a kind of willful misunderstanding of that moment in a cancer patient’s course of treatment. It got so much worse after that point - they had told us that it would, as the effects of the chemicals and burning reverberated through my mother’s frail body - but that bubble gun “celebration” belied any real grasp of what that would mean for her and for us.

So all of this time in medical and medicine-adjacent places left me confused about what the words “treatment” and “cure” and “healing” meant. And even while I was grateful to have these purported world-class facilities available to her, I couldn’t help question, as the months went on, whether any of the dozens of people who interacted with her really cared about her in the way that would lead her back to authentic good health. Just like the nurse in radiation, everyone we met, individually, was kind and smart and knew their stuff, but each was only treating an aspect of her illness; and it was all so big and terrifying that I could never find the right way to ask the right question of the right person. I just wanted her to be OK, and when by July she was finally home, living on her own again, I felt like I could breathe and let those questions go. Then I arrived at her house on that November Sunday and found her dead, all those questions ballooned into shrieks of pain and confusion and heartbreak that haunt me still. We’ll never know what happened to her, though we suspect an internal bleed following the removal of the feeding tube. Maybe her heart gave out, maybe there were other sequelae to her treatment. All I know is that this was my malady: not just the personal, crushing loss of a mother who offered unconditional love for all of the 54 years we had together, but also the faltering of my belief in these medical practices and practitioners and institutions.

This was my frame of mind when I saw Mike’s post about his need for a kidney. In the moment, I  only really registered two things: I had the correct blood type (O+), and I like to fill out forms. So I hopped on the MGH screening site and filled to my heart’s content.  I honestly never thought I’d be chosen as a kidney donor; I thought for sure my age would knock me out, or my somewhat overweightness, or a million other things - it seems deeply out-of-this-world to contemplate being an organ donor. Mike and I have known each other for more than ten years, since he joined me at Acton-Boxborough Regional High School - him teaching science, me English. Our fields are different - “opposites” in a lot of the ways that many schools operate. But we have had many students in common and I have learned from them of his gifts for inspiring a love of science, its processes and discoveries and possibilities. We have co-advised the school’s Student Council and chaperoned proms together. We have served together on union boards, where my urge to placate has balanced against his willingness to engage in the fight. Early in his career, we were two of the final three competitors in a student-run spelling bee and I was crushed when his deep knowledge of fancy Latinate science words took me out. I am in awe for his many gifts, of language and communication in addition to his enthusiasm and curiosity in his chosen field, and I can say now that I’ve always felt a kind of big-sister affection for him.

I will never forget getting the email, just before February vacation in 2018, saying I was a potential match. I was sitting at my desk in my classroom, and it actually did feel like being struck by lightning. I had a sense of being suddenly lifted above of my misery, deposited in a place where death and my grief could recede and the possibilities of life were manifest. After feeling frustrated and sidelined during my mother’s treatment and ultimately mystified by her death, it seemed suddenly possible that I could move to the center of a life-saving story. I called Mike right away in Washington, where he was spending a sabbatical year as an Einstein Fellow working at NASA. It never occurred to me not to tell him that I was a possible match, in case I might have wanted to change my mind, because I knew, without knowing why, that there was never a question of changing my mind. I was a little bit giddy when I called to let him know that I was a “green light” candidate, meaning that I would be scheduled for the proverbial battery of tests before learning whether I could actually donate or not. I think we were both stunned that after a literal worldwide response to his initial post, his potential donor could be just down the hall in the west wing of the high school. He assured me that his need for a new kidney was urgent in the “within 6-8 months” sense, and not the “next week during February vacation” sense, and I relaxed, for a while.

Every step of the testing held an odd kind of thrill for me. I can now see that the whole process was a mirror image of my experience with my mother, which certainly contributed to that feeling. Because the donor has their own team of professionals, separate from the recipient’s team, I was the focus of attention of a group of people dedicated to one goal: making sure I was fit for a major surgery and its aftermath. In a way, they had the same intensity of focus as the oncologists and radiologists who had treated my mother, but the expertise of each member of the team seemed to me to be integrated instead of exclusive. I met with my nurse, Kelly, and my social worker, Judy, and each of them took great pains and time to make sure I knew what to expect, and to learn about me and my story. Even parts of my life outside the Mass. General were folded into the process: when I met with the psychiatrist on the team, and I told him that I was talking with my own therapist about the possibility of transplant, he asked if I would allow him to speak with her. I agreed, and even felt buoyed by the idea that he was taking such care. I did a series of respiratory tests to determine my lung capacity because I smoked for 18 years - though I quit nearly 20 years ago. It felt as though I started the process feeling mildly good about my own health and by the time I got to surgery on October 25, I felt like a superwoman.

I should talk here about what passed between me and Mike in all this time. The testing began in March of 2018, and proceeded through the end of June. I checked in with Mike periodically, though we were both incredibly busy and several states apart at the time. And as I’ve said, we aren’t friends, as such - we don’t hang out, we don’t socialize. We’re close as colleagues, but if I eventually gave him my kidney, it would not be because of our deep personal bond. I think it was something that confused some people when I first started talking about the possibility of organ donation. When I said that the possible recipient wasn’t a relative or close friend, I felt mystification and even concern start to emanate. I couldn’t really explain it myself, this bubbling elation I felt whenever I imagined my nurse Kelly telling me that we were a “go” for donation. I just knew that I didn’t want to let it go.  

My social worker Judy raised this question, in reverse, during the testing period. We talked about how I would feel if I got a “no” from Kelly, and what I would do to manage that feeling; how I would even prepare for the call itself, when it came, regardless of the verdict. I told her I would be devastated if I couldn’t donate, though in truth, this felt like it was more about me than about Michael. I had seen the Facebook response, I knew how much he meant to so many people. I couldn’t imagine that another donor couldn’t be found. When I examined this potential “no,” I simply felt as if something would be taken from me - ironic, since that “no” would actually mean I would get to keep something, a kidney. I couldn’t explain it, and I just hoped I didn’t sound too zealous to be a good donor.  We also agreed that if I saw Kelly’s name on an incoming call, I should sit down to take it.

And then, there it was: Kelly called me in June, after the kidney team had met, just as she said she would. I took a seat, as I had promised Judy I would. And as you know, it was a “yes.” The relief, the elation, the surrealness, they all exploded in me. Kelly asked if I wanted to be the one to tell Mike, and to be able to do that felt like another gift. We agreed that Mike and I would start to think about potential surgery dates, after she said what felt like the weirdest thing: “We usually do these transplant surgeries on Tuesdays and Thursdays, so keep that in mind when picking dates.” The bigness of my feelings compared with the everydayness of that statement still makes me laugh. I texted Mike to see if he was free, and asked him to call me if he was. I don’t remember the exact words that passed between us, but it was a very good vibe on that line from Needham to Washington DC. We didn’t talk long, in the end, past deciding that we would start looking at dates (Tuesdays & Thursdays!) as he wrapped up at NASA and I proceeded into summer travels.

I knew that Mike would be busy wrapping up his year in DC and moving back to Cambridge in late July/early August. I also knew that this surgery, and its aftermath, were probably much heavier for him to contemplate than they were for me. I was desperate for my kidney to work for him, but even if it didn’t, I would come out of the surgery relatively unscathed. He had many more reasons to hesitate, while I felt nothing but full-steam-ahead. As August ticked along and we hadn’t picked a date yet, I started to worry that he might not want to go through with it, or that he might prefer a donation from a stranger rather than being tied to me in this way for the rest of his life. Finally, on August 27, I wrote Mike an email, which included the following: “The only other thing is to tell you how profoundly happy this process makes me - and how incredibly lucky I feel to be able to do this with you. I don't know if that sounds ridiculously saccharine and hard to believe, but I swear to you it's the whole, unmitigated truth. It makes me happy to think I'll have a connection to you in this way, but I don't want you to think that possession of one of my kidneys will lead to any possessive stalking on my part; once it's yours, it's all yours, and if you want to take it around the world on a binge when you turn 40, have at it!” I read this now, and the intensity of how much I wanted this to work suffuses me again. I literally could not wait to give something of myself, of my own body, and I felt lucky at the prospect of an entirely voluntary, deeply invasive surgical procedure. I couldn’t explain it then any better than I did - “take my kidney for a joyride!” - but as I’m writing this piece, it’s starting to come into greater focus. Mike didn’t reply to that email, and he didn’t have to; it was enough that I had made my intentions clear. Soon after, we texted some possibilities back and forth - as we like to say, “like you’d schedule a coffee date” - and eventually settled on Thursday, October 25.

When that day came, I felt not one instant of pain or fear, but instead a kind of stillness and peace. From my bed in the pre-op unit, I could see the electronic board listing various surgeries;  in the medical shows on TV, it’s a messy whiteboard, but this was a beautifully intelligent screen. I realized that all the surgeries were inching to the left along a timeline. Even without my distance glasses, I could just make out “kidney transplant” on the board, and I zeroed in on that entry until it met its destination time of 10 a.m. I also remember thinking, it’s a good thing I started taking anti-anxiety medication 20 years ago, in preparation for this very moment, which back then would have been suffused with dread, instead of the peaceful anticipation of today. If I leave you with anything today, let it be an endorsement for good mental health care. Our surgeries having crossed the timeline, it was time to go; I was wheeled to the very, very bright operating room, told that the mask would smell like a beach ball, start to count backwards, and I’m out.

But two seconds later, I’m back. If you’ve never had surgery - as I never had - you should be aware that it’s not like sleeping. There are no dreams, there’s no sense of any time passing at all. It seems quite inconceivable that anything could have happened in the few seconds you were out. But of course, it wasn’t seconds, it was hours, at least four hours, and someone is pushing their knuckles into my chest to wake me up, and all I remember saying as I opened my eyes was, “Did it work? Is it working?” I needed to know if my kidney was functioning inside Mike, and they told me right away that it was. Hallelujah! I had no more words, but I was happy to be rolled to a room on the same floor where Mike would eventually also arrive, though his surgery would take longer than mine.

People want to know about everything I had to “go through,” the restrictions I must have had, or still have, on what I eat or drink, on whether I feel different being down a kidney. But the truth is, from the very first hours of recovery, it’s just not that big a deal. This might have been influenced by the fact that my roommate for most of my two night stay at the Mass. General was a heart transplant recipient with multiple woes, so my situation truly paled in comparison. I was uncomfortable, to be sure - the particulars of expelling the gas used to inflate my belly so that Dr. Dageforde could reach in with her exquisitely small hands through the incision around my belly button to extract my left kidney - I’ll leave them to your imagination. I couldn’t roll onto either side, and lying on your back is a drag after a while. But nothing about my diet has changed, nothing about the way my body functions has changed, and there was never a moment from when I was awoken that I wasn’t in awe, in relief, in joy. My husband Dan, no fan of hospitals, stayed with me, and my brother Henry and sister-in-law Mimi arrived from the waiting area where it turned out that they had met and bonded with Karen and Angelo, Mike’s parents. It was, in the most elemental and profound way, all good.

And here we are now, almost exactly seven months to the day from that day. Whenever someone comments on what I did, the only thing I can ever say is how lucky I feel to have been able to do it. I’ve said it reflexively and for a long time I thought it was because I got to be the person who makes such a difference in the life of another person. But in telling this story, I’ve been pushed to unpack what I really meant by that, at first just to myself and now to all of you. And of course, you’ve probably guessed by now what it turns out I meant: the luckiest thing about this adventure was that it came at the exact moment when I needed to be rescued from the very worst reality by the very best possibility. I needed to be able to focus on my body and what it was capable of so that I could get out of my head and even my heart and the sadness by which both were bound. Being one of about 65 living donors in 2018 at the Mass. General was the opposite in every way of being one of thousands of patients at the Dana Farber, which was Yvonne’s plight. In a conversation with Annie Brewster, when I was wrestling with this story, she drew my attention to something that’s a little bit raw, but I can’t get the image out of my head: I have told you that we think that the removal of Yvonne’s feeding tube might have contributed to her death. It’s a common enough procedure, the tube being yanked out a little abruptly - as she described it to us that night - and almost never dangerous. And yet there she was, the next day, dead on the floor. I told this to Annie, and after a pause, she pointed out that I also had something removed from my body - but with care, and thought, and intention. And not only am I still here to tell the story, but much, much more importantly, so is Michael.

I am an artist based in the San Francisco Bay Area who specializes in the intersection of art and science. I focus on brain scans, particularly MRIs, because I consider them one of the primary symbols of Multiple Sclerosis. Since my diagnosis of MS, I have continually undergone brain scans to track the progression of my disease. Initially the sterile black and white images of the MRIs of my brain were terrifying, and I refused to look at them. I began using my art practice to reinterpret these frightening yet mesmerizing images. I seek to disrupt the unsightliness of these digital images, inviting the viewers to stare directly at the beauty and complexity of the imperfect brain.

My diagnosis has allowed me to integrate neurotechnology into my artwork. Through printmaking, mixed media, and textiles I transform my scan into vibrant landscapes in hopes of challenging how society views illness. I create with the intent of transforming how people view the imperfect body, allowing room for celebration, curiosity, and fascination.

My artwork has been displayed in permanent collection at various institutions, universities, and hospitals throughout the country. My heart remains rooted in the narrative of illness. I am now trying my hand at art and design in the clinical setting.

I have been inspired by the power artwork can have to broaden and deepen the narrative around chronic illness. This is the core of my mission, to create artwork that encourages social engagement and spurs conversations. My vision for several upcoming projects combines patient—centered design strategies, evocative artwork, and powerful narratives. I am currently exploring how art, storytelling and technology can be used to revolutionize the untapped potential of time spent in waiting rooms of clinics.

At some point in our lives, we all become patients and are challenged with accepting illness as a part of being human. Chronic disease is an ongoing natural disaster of the body, where the tsunami is a never-ending undulation of change. This disaster leaves in its wake a real sense of fear, isolation and heightened awareness of the fragility of one's body. Many illnesses that are depicted in the media have a narrative that has a beginning, middle and end—a flowing arc to the story. But most illnesses, especially those that are chronic, lack an arc or even a narrative that makes sense to the outsider. Sometimes it can feel overwhelming, lonely, or diminishing. I create with the intent to transform this experience and use a medium that fosters connections and conversation. In doing so I aim to open up people’s eyes to see the unique perspectives gained through living with disease.

Elizabeth Jameson is an artist and writer who explores what it means to live in an imperfect body as part of the universal human experience.  Before her diagnosis of multiple sclerosis, she served as a public interest lawyer representing incarcerated children; she later represented children living with chronic illnesses and disabilities in their attempts to receive medically necessary care.

As her disease progressed, she began using her MRI’s to create art as a way of reclaiming agency of her own medical data. She transformed the unsettling, clinical images into work that invites people to open up conversations about what it means to have an illness or disability. She now writes personal essays and speaks across the country sharing her experiences living with illness and disability. Her essays have been published by The New York Times, British Medical Journal, WIRED magazine, and MIT’s Leonardo Journal. Her essay, “Losing Touch, Finding Intimacy,” was included in the New York Times book, About Us, released in September 2019 by Norton Publishing.

You can learn more about Elizabeth by visiting her website.

Sick, not silent: A conversation about cancer through art

Sculptor

Dennis@DennisSvoronos.com

DennisSvoronos.com

In September of 2009—at 26 years of age—I was diagnosed with cancer, after experiencing the first of many seizures to come. Of all the trials I could imagine that lay ahead, I never thought most of them would be exercises in recollection.

Patient name? Dennis Svoronos (thankfully I can always get this one)

Date of birth? 3/8/83 (a palindrome, helps to keep it easy)

Occupation? Artist (maybe not my parents first choice)

Approximate date of last surgery? 11/09 (Who forgets their first brain surgery)

Existing medical conditions? Anaplastic Astrocytoma (a cancerous brain tumor)

Repeat daily, for years.

As time progressed; I remember those waiting rooms, questions and ID tags much more than the operating theatre and injections; trauma is kind like that.

However, they made me feel intrinsically linked to my disease. What was I, without these suffixes of sickness to identify with? Somehow, all my other unique and admirable qualities were set-aside for the identifier of ‘cancer patient’. It’s easy to resign to the belief that those forms and wristbands define your life, mere statistics, data—you and your cancer. Just as painless, is to ignore the process completely, pretending your exams and operations are the bad dreams of another person, your ‘real life’ goes on unaffected.

Either way, it seems you’re not to talk openly about cancer, and it is difficult for most; patients, family and doctors alike. My initial sense was, it would be easier for me—and more comfortable for others—to keep off the topic. Sickness is a surprisingly taboo subject in a very liberal culture.

The artist in me, however, couldn’t stop questioning why we hide from the discussion. Over the course of my treatment and the years to follow, the entirety of my work became a continuous, very uncomfortable, conversation about my disease with anyone that would listen.

In doing so, I freed myself from the fear and shame that I felt initially upon my diagnosis. It allowed me to speak honestly to an audience on an issue I was passionate about, to relate to others on a level beyond the initial stigma of sickness. I became a proud patient. My work wasn’t about the ‘battle’, ‘fight’ or being a ‘survivor’; the words of conflict I was trying to avoid. The art became focused on the subtle, sincere and even sarcastic aspects of the life-changing experience I was going through. I wasn’t interested in discussing my struggle with cancer; I wanted to embrace the insight it gave me.

In January of 2014, I exhibited a solo show of this work at the Boston Sculptors Gallery (486 Harrison Ave. Boston). In the month that followed, I was able to engage with patients and the public in ways I was never able to before. My show became a safe space for anyone to talk about this difficult subject. In doing so, stories were shared, wisdom was gained and many tears—of joy and woe—were shed. To all who came, I sought to impart a sense of community and empathy they didn’t enter with. I learned, as a patient I need to speak about my experience with the ‘healthy’ world, regardless of stigma or discrimination. My ultimate healing came through delightful conversations about a horrible problem.

Dennis Svoronos: Biography

Dennis Svoronos’ work exists between art and engineering; it is inspired by the modern world in motion. He uses his sculpture to reflect this environment charged with electricity, spectacle and information. He uses our common language of the 21st century: electronics, robotics and interactive kinetics, to build connections between the viewers and the work. In a society fractured by technology, Dennis Svoronos uses it to bring us together. At current, he is making work in response to his recent diagnosis of brain cancer, seeking to use his art as a platform to question sickness, wellness and recovery.

Dennis Svoronos is a Boston-based sculptor whose work has been shown nationally and internationally. He holds a diploma from the School of the Museum of Fine Arts, Boston, and a Bachelors of Fine Arts from Tufts University. His work has been exhibited at numerous institutions and galleries such as the MFA, Boston; the Norton Museum of Art, Palm Beach, FL; G.A.S.P Brookline, MA; and the Institute of Contemporary Art, Lake Worth, FL. Svoronos has also been the recipient of numerous awards and public work commissions. Currently, he is living and working in South Boston.

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

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

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

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

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

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

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

For me, this means…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

My younger brother, Simon, will always be my best friend. He was born with a mitochondrial disease and was never able to speak or walk, yet he exuded kindness through his unique and loving personality. Simon's gratitude radiated during each of his days, no matter how tough. He often needed nebulizer treatments and suctioning to aid his breathing, but he flashed us huge grins despite the discomfort of the mask and tube, as if we were all in on the same joke. He truly loved and appreciated the things that many of us take for granted, like taking long naps, getting off the bus after a day spent at his special education school, going to music class, and spending a sunny afternoon sitting outside. He especially loved spending his birthday with family, friends, and colorful balloons tied to his wheelchair. I will always remember the huge smile he had whenever he caught a glimpse of the Perry the Platypus balloon I gave him for his twelfth birthday, which somehow remained inflated for months.

Several months after his twelfth birthday, Simon’s respiratory problems became severe. We learned that he likely had less than six months to live. This news was difficult for me to handle as a sixteen-year-old, but my parents and friends offered immense support. My best friend often escorted me out of the classroom when I needed to cry, and my mom frequently picked me up early from school and took me to our favorite coffee shop. In November, Simon began a hospice program and continued to enjoy each day through massage therapy, music, his teachers and caregivers, and our family.

On March 26th, less than three weeks after Simon’s thirteenth birthday, I received the call from my parents that I had been dreading. They told me that they raced home after an urgent call from his caregiver. He was having more trouble breathing than they had ever seen, and they weren't sure how much time we had left with him. Since he had survived many rough days in the past, I clung to the hope that when I got home he would still be smiling at his orange thirteenth birthday balloons.

My mom stopped me at the door on my way inside the house. She told me Simon had passed away a few minutes prior. My vision blurred and I dropped my backpack. I ran into my parents’ room where Simon lay, still believing that he would be okay. Once I physically reached his body and could no longer hope for another day with him, it felt like my whole life shattered. I hugged him, crying, and wondered how we would continue on without our favorite ray of sunshine.

While losing Simon was unbelievably traumatic and devastating, it motivated me to spend time with other children and adults with special needs. Two summers after Simon’s passing, I worked as an assistant teacher at his special education school and as a respite caregiver for people of all ages with disabilities. I am grateful to have had the ongoing opportunity to work with individuals with exceptional needs and to teach and learn from them. My experiences with Simon and other members of the special needs community with whom I connected have inspired me to work toward a career in medicine. I plan to dedicate my life to offering care and love to children with disabilities.

Isabel is a junior at Vanderbilt University majoring in Medicine, Health, and Society. She grew up in Michigan but currently lives in Boise, Idaho with her Great Dane, Arthur.

Picture this scene:

It was winter in 2011.

I was 35 years old.

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

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

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

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

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

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

I was worn out.

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

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

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

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

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

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

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

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

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

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

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

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

Day by day, I felt better.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Good Mornin’ Glory

By Michele Foley

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

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

When I walked up the road, the string sack

Heavy on my arms, I thought

That my legs could carry me anywhere,

Into any country, any life…

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

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

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

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

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

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

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

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

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

When will I learn?

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

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

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

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

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

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

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

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

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

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

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

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

Postscript

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

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

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.

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.

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.

This originally appeared in Modern Loss. Republished here with permission.

I gave my inaugural eulogy at fourteen. When my best friend Liz passed away from osteosarcoma after one year of unsuccessful treatment, her mother asked if I would share something at the service. I seized the opportunity, as it seemed like a potential antidote to the grief roiling inside me.

For days, I immersed myself in boxes of photographs and stacks of letters that told the story of our friendship. I spent hours feverishly recording my memories, depicting her mischievous smile, glittering eyes, and elegant voice. On the morning of her service, I rose to the pulpit with quivering hands but a strong heart, and delivered a eulogy that was humorous, commemorative, and authentic.

Little did I know at the time what an extraordinary journey this act had launched—into myself, into writing, and into healing.

To read more, click here.

Anna left her home in Burlington, Vermont to begin treatment at Monte Nido Vista on April 28, 2014. More than one year into recovery at the time of the interview, 25-year-old Anna is living in Denver, Colorado and pursuing a nursing degree.

Anna is admirably candid about the challenges of recovery. Six years into her eating disorder – which involved cycles of purging, binging, over-exercising, and restricting – it became clear that she needed more intensive support than just an outpatient team in order to break the patterns. The four months Anna spent in residential treatment and then a transitional living house in California were transformative, but life back in the real world proved surprisingly difficult.

Anna admits her eating disorder still tempts her and occasionally catches her off guard with unexpected triggers. In addition to support from her boyfriend Thomas, her parents, and the recovered therapist she works with, Anna possesses an impressive self-awareness and “Healthy Self” mentality that she honed in treatment. She discusses how she challenges cultural misnomers about what “healthy” means, and the benefits of life in recovery: deeper intimacy and presence in relationships, a burgeoning sense of spirituality, and growing motivation to heal in order to help others. Though it has been rocky at times, Anna is proud of and committed to her recovery.

Listen to more stories in the Eating Disorder Recovery series here.

In the two years since the Boston Marathon bombings of 2013, we have seen many amazing examples of human resiliency. We have seen the people of Boston rise up and bond together over this shared trauma, with Boston Strong our motto. And we have seen families and individuals move forward with courage in the face of loss. Powerful news media images of amputees learning to walk on their new prostheses are emblazoned in our minds.

Quieter, less visible personal transformations have also occurred in many who were not physically injured by the bombs. Jennifer, a 42 years old woman who has suffered from depression for years and who was volunteering at the Boston Marathon Finish Line in 2013, describes the events of that day as “a turning point” in her life.

In Jennifer’s words, “Since the marathon, everyday is a gift.” She realizes how lucky she is to have walked away that day without any injuries, alive. Moreover, the events of that day, which for Jennifer included helping a runner reunite with his family in the aftermath of the explosions, changed her life goals. She now feels it is her responsibility to do something to help others and is committed to finding concrete ways to do so.

In what Jennifer describes as “an amazing coincidence”, she was signed up to participate in a Relaxation Response program at the Henry-Benson Institute of Mind-Body Medicine at Massachusetts General Hospital the week following the marathon bombings. Primed by her marathon experience, she devoured what the course had to offer. The teachings not only deepened her sense of self-acceptance and gave her skills to manage her own depression, but also strengthened her resolve to help others, and she ultimately went on to become a peer counselor for subsequent groups.

The central message she came away with is that while we cannot necessarily control what happens to us in life, we can control the meaning we make out of our experiences. She is determined to make the events of April 15, 2013 mean something, and to translate this meaning into action. As far as her depression is concerned, she has come around to recognizing “some of the good things about depression”, namely her appreciation for the small things in life, and her increased sense of empathy for others. “It’s like any other illness”, she says. “It doesn’t have to limit you. It’s all about making it mean something.”

I have so much to be thankful for. I should NOT feel so horrible. But, I did feel horrible. Lost. Lonely. Exhausted. Often. I was a sophomore in college. 18 years old.

I had spent several nights crying, not knowing how to get rid of the dull ache I felt inside of me. Now I was on my way to an intake session at the University Counseling Center, at the suggestion of my best friend. I had tried my best to hide my sadness, but having struggled herself, she saw right through me. I skipped my history class to make this appointment, trading time in a class I enjoyed for an hour that was one of the scariest of my young life. I sat in the corner of a slightly dim room with a box of Kleenex in one hand, sobbing and spilling out my inner emotions to a woman I had never met. After 45 minutes of listening, she suggested regular counseling. An appointment was made for the next day.

I was so terrified that I almost called it off, but I knew I had to be brave, so I showed up the next day and weekly thereafter. It seemed to be helping, but then, after the third week of counseling, one of my closest friends seemed to turn on me without explaining why. He just shut me out. Suddenly. I was mad, confused, and hurt, not sure if I wanted to go on. I cried so much in therapy that afternoon—all I felt was despair. I could only imagine that he stopped being my friend because I was so messed up. Too much of a burden.

I was still the nerdy bookworm I had been in high school, but being at the university had opened my mind to new ideas, people, music, art, and lifestyles. It was exciting but at times overwhelming. I was a perfectionist, not satisfied with any grade lower than an A. As an Honors Program student, I was constantly surrounded by overachievers like me. By the time I entered counseling, I had pushed myself harder academically and emotionally than ever, so hard that I bottomed out. Nothing I did felt good enough. Slowly, over months, my counselor helped me to see and appreciate who I was becoming. Things would be OK, I thought.

Things were OK, at least for the rest of my undergrad years, but anxiety and depression were never too far away. I went on to grad school, still never feeling good enough. As the first in my family to graduate from college and pursue an advanced degree, I constantly compared myself to fellow students who went to better schools and came from families with more wealth and status. I was afraid I would be “found out” as the fraud I assumed I was. Every night, as I tried to go to sleep, my mind would swirl with thoughts of all the things I could have done differently, better, often reliving mistakes made years earlier. I often wished that I would fall asleep and never wake up.

There was also a lot of good happening in my life during graduate school. I fell in love and got married. I had a job that I enjoyed. But still, even when things were going well, I knew that eventually, depression would find me. It felt inevitable.

I was in my late 20s when I first discussed my depression with my primary care physician, and she suggested I try an antidepressant. In my mind, this marked for me the moment of my “official” diagnosis of depression, even though the feelings had been longstanding. Now that I had been labeled with major depression, I had the comfort of a diagnosis and potential treatment, but also a fear that I was now associated with a condition that carried a great deal of stigma. How was this stuff going to change me? Could it really work? Would I need it for the rest of my life? Did needing antidepressants to function mean that I was too weak to deal with problems on my own?

The first two weeks on Wellbutrin were difficult. I felt like someone had turned up the volume in my brain. I had trouble sleeping. Every so often I involuntarily twitched. I was afraid to tell the doctor. What if she took me off of the meds and I lost this opportunity to maybe get better?

And then, about two weeks later, the buzzing in my head stopped. One morning I woke up and everything felt “even,” as I came to describe it. The internal criticism stopped. I could fall asleep and started sleeping a little more soundly. It felt like a miracle.

I finished my Ph.D. two weeks before my thirty-second birthday. Before I knew it, I had been offered what I long described as my dream job, and my husband and I moved to Boston. Everything about every day was new and exciting. I was happier than I thought I had any right to be. I was gliding.

But not for long. Depression continued to haunt me as I spent time in and out of therapy, on and off medications, feeling okay and not okay. My last serious relapse in 2011-2012 was the scariest. I would often cry riding the train to work, wiping the tears from my face, trying not to call attention to myself. When I couldn’t take the pain any longer, I started therapy again, got my meds changed, and again, began to work toward feeling more even-keeled, but it took much longer this time. Sometimes I just wanted to disappear from the earth. I came home one night, curled into a ball on the ceramic tile of my bathroom and behind that closed door shaking and sobbing as quietly as I could so that I would not scare my husband.

Although I was generally quite open about talking to my family members about my depression, more often I felt the need to hide my pain. They did their best to support me and I did not blame them if at times they felt helpless. At the same time, I felt guilty for causing them to worry, broken because I could not seem to get better, and exhausted from living in a world I felt was filled with more pain than I could bear.

In early 2013, I decided I needed to find a new approach to managing my recurring depression. Although my symptoms had subsided thanks to regular therapy and medication, I feared another relapse, and I didn’t want more or different medications. Before moving to New England, I had a regular tai chi practice and was experimenting with mindfulness and meditation, both of which had helped me deal with the stress that tended to trigger depressive episodes. My search for similar experiences and training led me to the Benson Henry Institute for Mind Body Medicine. I signed up for an eight-week session to learn the Relaxation Response that would begin on April 16, 2013.

The day before the program was scheduled to start was a sunny Patriot’s Day morning. I arrived in Boston at the time I would normally have arrived for work, but instead made my way to my volunteer assignment for the Boston Marathon. I had been volunteering at the race since my first year in Boston. As a recreational runner myself, it is a great way to support the running community, and something I am always honored to be part of. This year I would be working at the first water stop after the finish line.

I was ready for a long day on my feet, first turning the caps on the water bottles to make them easier for the runners to open, and then handing them out with a smile and congratulations as runners moved through the stretch along Boylston Street after finishing. I was surprised at how physically beat up many of them looked--some encrusted with sweat or bleeding in spots where they had been chaffed by clothing. Faces winced as legs hobbled slowly forward, a situation I could relate to only too clearly, having finished the Chicago Marathon about six months before. Some runners were in better shape and had the smiles I expected to see. Just being there to help these runners was a very emotional experience for me as I shared with them all the joy and pain of finishing 26.2 miles.

Hours passed. I watched the numbers on the runners’ bibs get higher, indicating that we were getting deeper into the field of over 25,000 participants. My feet and lower back started to hurt from prolonged standing. I remember looking at a clock on a Boylston Street building that read 2:00 pm. My anticipated check out time was still 4 hours away.

At 2:50 pm, as I was looking down Boylston Street toward the finish, I heard an explosion, followed by a plume of smoke, then another explosion. Fireworks, I wondered? The runners continued down the stretch and because I was so used to seeing battered bodies, I could not tell from their faces what had happened. And I was afraid to ask. Then I saw a female runner coming toward us with a look of horror on her face. Soon, the emergency vehicles began screaming down Boylston Street toward the finish, an area that was now a cloud of smoke and blinking lights from emergency vehicles.

In a world where news and information are available almost immediately, there was a void—no one knew what was going on. Speculations and rumors spread. Then, one of the first responders asked us to clear the area. They were looking for a third unexploded bomb. All I remember is a sense of unreality as the scene unfolded around me. I wanted to help but was afraid to help at the same time. No one knew where to go but someone told us to go to the Fairmount Copley Hotel, located on the other side of the Square.

I cut through Copley Square, running behind the big white medical tent to the corner across from Huntington Avenue. The hotel was in lock-down. Emergency personnel was pushing people on stretchers toward waiting ambulances. At 3:20, the first of many text messages started arriving from friends and family, those near and far. Where was I? Was I OK?

A volunteer wearing one of the white jackets designating her as medical staff approached me with a man in a wheelchair, a thin but very fit middle-aged man, with sandy brown hair and a beard. Michael. He was shivering in his thin runner’s singlet and shorts and was desperate to get his gear bag back, which contained warm clothes. The medical staff had been treating him for stress fractures after he crossed the finish line. He did not have a phone – could one of us text his wife to let her know where he was and that he was OK? Then Michael and I were alone. I sent the text “I am with Michael – he is OK – are you OK?” I still don’t know if that message ever made it to her.

I’m not sure how long we waited at that corner across from the medical tent but at some point, I decided I needed to do something, to take action and make sure that Michael reconnected with his family. I decided to wheel him to the family meeting area and try to find his gear bag so he would have some warm clothes and his cell phone.

For such a lean runner, he was much harder to push than I expected. As we came to the end of the block, there was a rough spot in the curb cut. I hit it with a thud, knocking Michael forward and practically out of the chair. He reacted with an expression of pain. Until then I had managed to keep my emotions in check, for the most part, but now I started to cry and my hands began to shake. “I am so sorry,” I told him, and I was. All of a sudden, I realized where I was, what had happened, and what I was doing ...

Now Michael comforted me. I needed to take my mind off of what was immediately happening, so I asked Michael to describe his wife to me. “She has brown hair. She’s beautiful, and she should be wearing a brown coat,” he said. We got to the family meeting area but she was not there. My heart sank. I told Michael I would not leave him until he was back with his family.

In the meantime, I would retrieve his gear bag. Amazingly, not only did I find the school bus that had brought his bag back to Boston but the volunteers actually gave it to me to take to him. I returned to the meeting area and was overjoyed to find Michael’s wife standing next to him. When he saw me carrying his bag, Michael exclaimed, “My angel!” His wife and I needed no words of greeting as we reached out to one another to hug, sobbing with relief, for what seemed like a long time.

When I was certain that there was no more I could do to help Michael and his wife, we said goodbye.

I wandered from Back Bay to my office on Cambridge Street in a state of shock, stopping regularly to respond to a steady flow of text messages coming from friends, family, and coworkers. As I opened the door at my workplace and saw one of my coworkers at reception, I let out a series of sobs that shook me to the core. Everyone who was in the building at the time came down to the lobby to see me, hug me. I called my husband. My supervisor drove me home. All I could do was crawl into bed.

Not surprisingly, the Benson Henry program did not start the next day as scheduled. There was too much uncertainty about travel in the city. The people responsible for the bombing were still at large. By the time the program started, one week later, I had spent seven days feeling completely numb, going through the motions of life. I can hardly remember it. But I still remember the first guided meditation in the program clearly, a body scan, and how good it felt to finally find some brief moments of peace in my own body. The next seven weeks brought more meditation experiences, opportunities to share the impact of these practices with the group and to listen to the stories of others who had sought this program for a whole variety of reasons. The most valuable part of the program for me was learning to recognize cognitive distortion and negative automatic thoughts and to reframe them in positive and constructive ways. The many years of “should,” statements, all-or-nothing thinking, perfectionism, and other unproductive ways of thinking, slowly dissipated.

I was extremely sad when the program ended, so I was thrilled when the group leader asked if I would consider helping the next group as a peer counselor. Participating in the program again, in a different role, was perhaps even more enlightening for me. Now that I wasn’t focusing as much on myself, I was able to see how profoundly these practices impacted others. In addition to learning how to meditate, I was also motivated to restart my tai chi practice, and eventually, pursue a teacher training program at a local studio.

My relationship with depression began to change. As part of the Benson Henry program, we talked often about gratitude and making meaning. I had always been careful not to take things for granted, but after the Marathon Bombing, every day felt like a gift. I had walked away from the scene with my life and my limbs when others were not so fortunate. I was determined to find some way to bring some good out of this tragic event. If that day was going to change my life, it was going to change it in the very best way possible.

For the first time in my life, depression was not a hurdle to overcome, but part of me that I needed to accept, for better or worse. By acknowledging it and realizing how much the associated pain contributed to my capacity for kindness and empathy, I have been able to better cope with the occasional “funks,” none of which have escalated into the relapses I previously experienced. Feeling gratitude is key to helping me understand and accept depression as part of what makes me the unique person that I am.

I began longing for new and meaningful challenges, opportunities to further explore and understand my own health and wellbeing, and the chance to improve the lives of others.

I had a nearly 20-year career as a historian behind me and was our household’s primary wage earner. The decision to go back to school to study nutrition and public health was both the easiest and most difficult decision I have ever made. But I had to do something.

I often thought about Michael. At first, I had been so afraid to take charge of the situation, but I did. I met that fear and it changed me. I made a difference. I could do it again.

In May I will graduate from Tufts University with a dual degree in nutrition communication and public health. I have been befriended and supported by a community of scholars and researchers who have given me extraordinary opportunities to learn and grow. I am excited to see what comes next. I am truly blessed.

I have SO much to be thankful for. And I feel wonderful.

Originally published on WBUR CommonHealth Blog, April 20, 2015

Resources:

http://www.nimh.nih.gov/health/topics/depression/index.shtml

http://www.mayoclinic.org/diseases-conditions/depression/basics/definition/con-20032977

http://www.aacap.org/AACAP/Families_and_Youth/Resource_Centers/Depression_Resource_Center/Home.aspx

All of our Healing Story Sessions are videotaped, and some of our participants have courageously agreed to have their videos shared on our website. Here, you can watch Marie share her story of living with Stage 4 Colorectal Cancer. Marie participated in our first Healing Story Session in March, 2014. Her story is humbling, moving, and funny. She has amazing perspective, wisdom and a terrific sense of humor. It is worth a watch!

Essay by Marie Pechet:

As mother to two young boys who love to watch movies, certain lyrics tend to run through my head, like Chitty Chitty Bang Bang we love you! or You’ve got a friend in me…. from Toy Story.

Since my most recent cancer diagnosis, the lyrics that stick in my mind are from Frosty the Snowman:

Frosty the Snowman
Knew the sun was hot that day
But he said let’s run and we’ll have some fun
Now, before I melt away….

I was initially diagnosed with colorectal cancer when my sons were 1 and 4 years old. At that time, we put our lives on hold for an entire school year while I had surgery to remove part of my colon followed by chemotherapy to kill any remaining cancer cells. Our lives revolved around my healing, and any treatment that might make me well again — like acupuncture or sleep — took priority. While I missed doing many activities with the kids, my husband and I decided that the trade-off would be worth it in the long run.

After nine months, I completed chemotherapy. There was no sign of cancer, and I returned to living my life.

Like many people, being diagnosed with cancer shifted my view on what was important, and I swore that I would never again take life for granted. But one of the beautiful things about living life as a healthy person is that you do get to take it for granted. So, as I returned to health, I also returned to doing all the things that I swore I would never do again. I became easily annoyed with other drivers, got impatient with the kids, juggled too many commitments, and spent time doing things out of obligation rather than joy. Still, this made life feel comfortable and normal, and there seemed to be security in that.

Of course, security is an illusion, and almost a year later, we saw the first signs that the cancer had returned.

Like a lot of bad news, it was delivered over the phone. Though the doctor primarily called to have me repeat a blood test, the request gave me an ominous feel in the pit of my stomach.

I hung up the phone and sat in the kitchen, looking out the window at my boys, now almost three and six years old, playing in the backyard. It was a warm spring day in late May, they were running and laughing, and I realized that, more than anything, I wanted their life to continue that way.

I also realized that I wanted a planter on our back deck, and now seemed like as good a time as any to get it.

I called the boys– we were going on an adventure! They were excited and we drove to the best plant store I knew. I wandered around the enormous planters while the boys amused themselves playing in the water fountains. At first, I tried to keep them out of the fountains, but the sales folks didn’t seem to mind, so I let it go.

By the time I made my purchases, the laughter was bubbling out of their bodies and water was dripping from their clothes. As we got everything into the car, the boys stripped down for a naked ride home and the saleswoman commented that I was the calmest mother she’s ever met. We had a truly beautiful day in spite of the news, and I remember that triumph every time I look at that planter.

The rest of our summer and fall days were filled with ultrasounds, blood tests and surgeries. I had one 2½ hour surgery to remove and rebuild my entire rectal area, followed a few months later by a 7½ hour surgery to remove it all again. This surgery included a full hysterectomy to remove a large tumor growing on an ovary and touching every other abdominal body part, and the surgeon removed parts of the fat in my abdomen where there was evidence of more tumor growth.

Doctors at MGH and at Sloan Kettering told me that both the surgery and the chemotherapy regimen would need go 100% to have a chance of long-term survival. In the last surgery, there was tumor left behind, and we learned that cancer cells were in my abdominal fluid. So we had more work to do.

Only three weeks after that surgery, I started a regimen of chemotherapy every other week. This requires a full day at the hospital having an infusion. Then I go home carrying a continuous infusion pump attached to my chest for two days. The pump comes in a black bag containing chemotherapy; an IV line runs from the bag to a port-a-cath in my chest. Not only does the chemotherapy taste awful and remind me that I am a cancer patient, but it affects how I sleep as I try to keep the line from tangling, and how I shower, because I can’t get the apparatus wet. The kids know that they need to be careful around my body, and I worry that they are less spontaneous with their affection as a result.

I wish I could count down to the end of the treatments, but the doctors soberly recommended no end date.

Though I am trying every complementary treatment I can to get off chemo, it sounded like this would be our way of life for the foreseeable future. I knew that I couldn’t put my life on hold to heal; this IS my life.

It took a few weeks for me to accept this hated reality and the scariness of an uncertain future. I wanted to put the whole package back on the shelf and select a different path for myself and my family.

Slowly, the reality settled in and, while I still resisted it, I gradually tried to view it as a gift. I had time, I was able to be home and not in the hospital, and, other than cancer, I was in good shape physically and had a life I mostly loved. I started to look outside myself. I couldn’t imagine what this experience would be like for my sons. What could I do to help them navigate terrain that few adults are equipped to manage?

Determined to provide my boys with joy and laughter and – if my health took a bad turn, with happy memories of us all together — I started my mission to “have some fun.”

This is easier said than done, of course, particularly when the feeling of illness can permeate your life and be part of your household and psyche.

One night, I vomited every few minutes for six hours (even though I had taken the anti-nausea drugs that day). My husband was out of town, and my mother was staying with us. I couldn’t stop long enough to get her help, and she couldn’t hear me call her. Eventually, my three-year-old son woke up and found me in the bathroom. It makes me both proud and sad that he calmly walked to find his grandmother to help with the situation.

It’s hard to think about “fun” when I must unexpectedly miss a school assembly I hoped to attend or a movie that we all planned to see together. It is now a way of life that the kids accept, but saddens me as I watch them go off without me. As I see them walk away, I wonder if this is what their future will look like, and whether I will get to be part of it.

So, how could we have fun in the midst of all this? How could we have a household that is not permeated by illness, but is instead light and joyful?

Between all the cancer treatments, I was lucky enough to have a series of good days and we ran with them. In a one-month period we took the Polar Express Ride in New Hampshire, celebrated Christmas with extended family in Pittsburgh, went skiing for a week in Stowe, VT, and took a long weekend trip to Disney World. My husband and I traveled to New York (to see doctors at Sloan Kettering) and managed to make that into a mini-vacation with a shopping trip to Bloomingdale’s and a delicious Indian dinner.

In my quest to make the most of my time with the boys, I can push us all too far. In my son’s first-grade classroom, they tapped trees for maple syrup and processed it. Given his excitement about this, I decided that we would go maple sugaring one weekend. I packed the kids into the car and drove 40 minutes to take an hour-long tour, followed by hot dogs. At the end of the adventure, my six-year-old told me, “That wasn’t worth the long drive, Mom. We learned all that at school already, and the hot dogs weren’t very good.”

So I am learning to balance these trips with doing simple, everyday things, like riding bikes, playing restaurant and hunting for rabbits in our back yard. It is hard to know what would be memorable, and how to make the most of every day. I still have moments, even days, when I am not up to activity or even conversation. At those times, I try to remind myself that tomorrow might be worse, and that will make today look like a good day. So I’d better get up and repeat my mantra, the simple lyrics from Frosty the Snowman: We’ll have some fun now…

Originally published on WBUR Commonhealth Blog April 13, 2010

Resources:

To learn more about colorectal cancer, visit

http://www.mayoclinic.com/health/colon-cancer/DS00035

To find information and support resources for patients and families, visit

http://www.ccalliance.org/patients/index.html

http://www.cancer.org/cancer/colonandrectumcancer/