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.

On May 23rd, at WBUR's CitySpace, Mike Romano and Genevieve Hammond shared their stories of navigating kidney transplant--Mike as the recipient and Genevieve as the donor. We shared the video with you on our blog last month, and will now share their written stories with you as a two-part series. Mike first.

By Michael Romano

I think sometimes we as humans like to think we have more control over our lives than we really do. We go about our days confidently making decisions as if we are in charge, but many of the situations we encounter are out of our control. Anyone here who has experienced significant health problems knows this all too well. My own experiences with polycystic kidney disease have often left me feeling powerless and wondering if there is much of anything we do have control over.

I thought I was healthy for much of my childhood and young adulthood. I grew up in the picturesque part of rural northern New Jersey, surrounded by mountains and cows...far from the smoggy Turnpike and the trashy but endearing-kind-of-trashy Jersey shore. I spent my childhood playing the saxophone, loving school and never pumping my own gas--that’s against the law in New Jersey. I moved to Boston in 2002--to this very street in fact--to attend Boston University where I studied biology and education. I went to grad school across the river at Harvard, and then started teaching. I’ve been teaching high school biology, marine biology and chemistry at the same suburban high school for the past twelve years, save last year when I took a sabbatical to work at NASA in Washington, DC. I came back from NASA to get a kidney.

I was diagnosed six years ago with polycystic kidney disease (PKD). It’s a genetic condition where as time goes on, cysts grow on the kidneys, limiting their ability to filter your blood and eventually leading to total kidney failure. I actually found out I had PKD as somewhat of a fluke...there was no family history of it, and patients don’t usually show many symptoms until your kidneys fail and it’s too late. One symptom is high blood pressure, which I did have in my early twenties, but my doctor chalked it up to “family history” and put me on an ACE inhibitor to keep it at bay. I went to the emergency room on the eve of my 28th birthday because something wasn’t right--I was having arm pain, chest pain, shortness of breath...I self-diagnosed this as a heart attack by reading WebMD, which is apparently a pretty common thing among millennials based on the number of memes I’ve seen about this. It definitely wasn’t a heart attack, but the symptoms were caused by abnormal blood chemistry that was kidney related. It’s funny thinking back to that day--the doctor wanted to keep me overnight for tests and observations, but I protested because the next day was my birthday and I had reservations at Oleana. Locals will agree--totally disappointing to have to miss that! But she insisted, especially considering that something serious might be wrong with my kidneys. One kidney ultrasound later, the characteristic kidney cysts of PKD were made visible and I was officially diagnosed with PKD. That high blood pressure I’d been treating? A classic symptom of PKD. (Luckily, the diagnosis and discharge came a few hours before dinner, which was delicious by the way.)

The next few years were marked by semi-annual nephrologist visits. They largely went the same each time...a slight decrease in my kidney filtration rate (bad), an ominous warning about the eventual renal failure I would experience and impending need for a transplant, and a rebooking for a follow-up in six months. Then every three months. I actually really liked my nephrologist--he was personable, compassionate, and talked to me like an educated person--he knew that I was reading up on my disease (and in primary literature--not on WebMD). These visits were emotionally-draining too though, because his recommendations and diagnoses sounded overly serious for how personally healthy I still felt. I didn’t *feel* like a sick person, you know? I’m not sure healthy people really have a concept of what it means to be a “sick person” anyway. We spend time with family members in the hospital. We see news stories about communities rallying around children in hospital beds hooked up to IVs, or pictures on Facebook of a woman wearing a bandana to cover her head that has gone bald from chemotherapy--that’s a sick person. That’s not me...I just had high blood pressure, right?

As time went on I did start to feel some physical symptoms though. As my kidneys became less able to filter out my blood, my blood filled with “junk” and this made me really tired. I also had a few flare-ups of gout—a really painful arthritis that can be caused by kidney disease. I was spending my summers teaching in Hong Kong, and the long flights became more arduous as my feet and legs swelled. My last trip to Hong Kong in 2017 was nothing short of a cluster...my feet were so swollen that I couldn’t wear shoes, ended up in a Hong Kong emergency room, and then had to teach on crutches for a few days. I knew a transplant was imminent...I was just hoping I could postpone it...well...indefinitely, you know? I was compartmentalizing my illness, which was easy to do because I still mostly felt fine, and no one could tell me when my kidneys would ultimately fail...it could be a year it could be a decade or more.

Part of this uncertainty came from my GFR, which stands for “glomerular filtration rate.” This is an indicator of how well your kidneys are filtering and working, which can be determined from a blood test. A normal, healthy GFR is 59 or greater. Mine had been hovering in the mid-20s for a few years. I knew that when I dropped below 20 I would qualify to be listed on the National Kidney Registry and real discussions of a kidney transplant could begin. This happened in January of 2017, and then it all finally seemed real. I didn’t realize my wait for a deceased kidney would be many years in Massachusetts. I have type O blood, which is highly desirable for blood and organ donations (if I were the donor), because it is a blood type that is highly compatible in many people, regardless of their blood type. The flip side of that, however, is that type O individuals can *only* receive blood and kidneys from other type O people, making the wait for type O kidneys exceedingly long--five or six years.

I started looking for a living donor, because if my kidneys totally failed before finding a donor, I would have to go on dialysis or I would die. Dialysis is crappy. It takes a huge physical toll on your body. It requires hours of treatment three days a week, severely limiting your ability to travel, or just live an independent life. It’s also not a permanent solution, because if you stop dialysis you will ultimately die. I didn’t want this, not in my early 30s. I started looking for a kidney among family members, but there were no healthy type O matches. This was frustrating because so many of my family members wanted to donate, knowing that you only need one healthy kidney to live a long, healthy life. After a year of looking and waiting and watching my GFR tick down, in January of 2018 I took to social media to ask for a kidney. The results were totally overwhelming. My Facebook post went viral, mostly being shared by friends, colleagues and former students. With all of those shares, I had over 60 type O people submit applications to be my donor! The hospital couldn’t tell me the names of those who submitted applications because of privacy laws, but people told me themselves: friends, colleagues, former students, parents of students, former classmates from when I went to high school, parishioners from my parents’ church...just so many generous and brave people.

I met Genevieve 12 years ago. She and I teach at the same high school, and while our classrooms were on opposite sides of the building when we met (she taught English and I taught biology at the time), over the years we’ve become good friends through co-advising the Student Council, chaperoning dances together, working as building reps for the teachers’ union and serving on committees together. I fondly remember working with Genevieve on a committee charged with re-writing our school’s mission statement several years ago. I had some pretty eloquent suggestions for our new mission statement, and Genevieve called me a “wordsmith.” That’s high praise coming from an English teacher! Ultimately all of my mission statement suggestions were ignored, but to this day, it’s one of the nicest compliments I’ve ever received.

It turns out this friend who called me a “wordsmith” a decade earlier saw my Facebook post, and after months of testing turned out to be a very close kidney match, and was willing--nay, excited--to donate one to me! I remember the conversation Genevieve and I had about the transplant timeline once the process was finalized--it was like we were scheduling a coffee date. “How about summer?” “Actually, I have a trip planned. Maybe early fall?” “Well, we should get the school year rolling at least...maybe October?” “I have a wedding the second week--could we shoot for the third week?” And like that, we scheduled this crucially-important medical procedure for October 25th, almost seven months ago today!

The transplant itself was certainly scary, and I remember the day pretty vividly. I showed up to the perioperative area at 8am, changed into my ugly blue transplant gown, and met a lot of faces I would see over and over throughout the day like the surgeon, the anesthesiology team, and the nurses. I had stopped eating the night before and stopped drinking at 7am, so I was hungry, thirsty, nervous and ornery. To add to my unease, I was hoping to see Genevieve that morning, but our paths didn’t cross. I was really frustrated by this, especially because I knew she was going under the knife first. By 9:30 I was being wheeled through the bowels of the hospital to the operating room. My anesthesiologist was wearing a Red Sox skull cap--a wicked Boston thing to witness. There were SO many scissors in the operating room, but I was reassured they were not all for me. In fact, this was one of the last things I remember--I was unconscious before they even put the oxygen mask on. I didn’t even get to the counting backwards, which to be honest was kind of disappointing. The next thing I know it was 7pm and I was waking up in my recovery room. I didn’t feel much pain at first (drugs) but I also didn’t feel great (also drugs), but I was told the kidney was working great and I was making beautiful urine, and honestly that’s the nicest thing anyone had said to me in a few days, so it was quite the compliment. Genevieve was recovering on the same floor, and I finally got to see her the next day. I remember feeling incredibly grateful walking over to see her. It was also incredibly hard to walk--huge incision, catheter in, hooked up to IVs, lots of pain--but I felt relieved it was over, and incredibly close to someone who had always been a good friend.

Genevieve’s recovery was so fast. It was such a positive light when I would go for a walk around the transplant floor and see her smiling face. Mine was a little bumpy. The kidney they removed from me was very large and inflamed. They had to take a lot more tissue out than expected, and as a result I developed an ileus, which essentially means my digestive system shut down. I started vomiting so they inserted a tube through my nose into my stomach that sucked out over a liter of grossness over a couple days. I don’t think I’d felt this physically miserable before. It hurt to sleep, to move and I couldn’t eat. I also ended up being allergic to one of my medicines, so I had some hives. Ironically, I also had one last painful post-transplant gout attack.

The victories were pretty sweet though. You forget what an accomplishment something like a catheter removal is! I was discharged a week after the transplant on Halloween. In remember getting a small cup of M&Ms with my lunch that day, and watching the Red Sox victory parade on TV while waiting to be discharged. I was relieved to finally be home and have my parents there to help me, though recovery would continue to be slow and difficult. Other small victories like taking a shower, going to the bathroom without pain, walking without pain, sleeping through the night, lifting groceries, being out in public, returning to work, and feeling like a normal, healthy person again really made me reflect on the entire process. The regimen of anti-rejection drugs is much more manageable than I imagined they would be, and the bloodwork and follow-up visits have significantly reduced in frequency. My immune system is compromised, of course, but even that has noticeably regained strength from right after the transplant. So I do notice a positive physical improvement, and my attitude has improved as well. I feel like I have a new lease on life--a chance to live a long, healthy, productive life that wouldn’t have been possible without Genevieve’s kidney. I feel like I have a responsibility to help other patients use resources like social media to find a donor. I recently spoke on a panel to a group of pre-transplant recipients, and continue to volunteer for National Kidney Foundation walks. Did you know that my transplant and associated costs were in excess of $300,000? Fortunately I have good health care, and paid less than $2,000. Unfortunately, many Americans don’t have this luxury. It shouldn’t be a luxury, though, it should be a right.

Genevieve and I have been using our platform as teachers to spread awareness about living organ donation as well. People have asked if it’s weird seeing my kidney donor now. Some friends had encouraged me to find a donor that I don’t know. What happens of something goes wrong? Will I forever feel indebted to her? In fact, it’s one of the greatest blessings to see her walking down the hall at school. Colleagues have shared how special it is to see us together, and how it gives them hope. We even have our photograph in the yearbook together, as our story has inspired students too. It’s a pretty special feeling knowing that she so selflessly saved my life, and I get to share this bond with her that most people will not ever get to experience. I do feel a greater sense of responsibility now--I have to do something good with this opportunity she gave me. I think that’s why opportunities like this to share our story are so important. I can share our story, so I must.

It’s hard to thank someone who donates an organ to you. It’s hard to find the right words to say, even for a wordsmith. My gratitude is there in many forms, however: the occasional text asking her to coffee, the soft smile on my face when I find her in the break room between classes, the messages of reassurance I share with other pre-transplant recipients, and the interactions with my family and friends that I can now spend many more healthy years with. I never would have known a decade ago at those Student Council dances or teacher meetings what future bond we would ultimately share, but that’s the essence of the human experience. We can’t control many aspects of our own health, or predict what the future holds. We can, however, cultivate friendships with those random people we meet at work. We can express gratitude to those who help us along when we’re struggling physically and emotionally. We can share our hardships and experiences with others, especially those going through similar health challenges to make them feel less anxious. We can also never really know what hardships our friends and colleagues might be facing in their personal lives, so we can practice patience and empathy in our interactions with others. We can be grateful for the things we can control and the challenges we don’t have to face. And most importantly we can share our stories--in doing so we are able to reshape our perspectives on life and the importance of the relationships we forge in it.

2018 was starting to become a difficult year.  I was 40 years old and preparing to be a single mother of four children.  I had been divorced for 5 years from the father of my oldest three children - Corbin, Grace, and Cohen - and my relationship with Steve, the father of my youngest child, Grayson, was ending.  The 4th of July had snuck up on me that year with everything going on and falling on a Wednesday in the middle of the week.  Normally I would have a party at home with friends and family but with the stress of paying bills on my own I agreed to a double shift instead.  Rather than everyone being together, the children all made plans with friends.  My oldest child, Corbin, wanted to float down the river on tubes with some friends.  Even though he was already 16, I was still a little hesitant about letting him go. Corbin was a good kid.  He worked as many hours as he could so he had a truck to drive, did well in school, was never in trouble and really had taken on the man of the house role helping me with everything he was asked. He was a mature and responsible child but teenage boys will be teenage boys regardless.  I feel like I’ve always been a little over protective and as a parent you struggle with the balance between not wanting to keep them in a bubble and not giving too much freedom.  Reluctantly, I agreed.

Before I left for work I wanted to verify the plans with Corbin one last time.  Corbin was in the bathroom when I came downstairs.  He had just gotten out of the shower so he was speaking to me through the door. I wanted to see him, and of course I wanted to give him a hug goodbye, but he argued a little and told me he would call me with his plans. I was running late, so we said goodbye through the door.

That day at work, my first and only customer was a man I hadn't seen in years.  His son and Corbin used to go to school together.  We started talking about how scary it is when kids grow up, get their licenses, and go out on their own – celebrating holidays with friends rather than family.  He started telling me a story about how his son had just gotten into a car accident on the highway.  Luckily no one involved, including his son, was injured.  Before he could finish the story, I got a text message from Steve, Grayson’s father, “It’s an emergency!” it said. He was out of town with my two-year-old son that day and all I could think was that something must have happened with my child.  I interrupted my customer and excused myself to make a phone call. 

It wasn't my son, it was my nephew.  An emergency location-tracking app sent a notification to my sister-in-law that my nephew, Tanna, had been in an accident and was trapped in the vehicle.  My sister-in-law couldn't get a hold of me so they called Steve to find me.  They knew I was the closest person to the accident.  I immediately asked where and if he was okay before realizing that Corbin was supposed to be with him. But Corbin hadn't called me yet to tell me he was leaving so Corbin couldn't be with him, I tried to tell myself. 

The short drive down that road felt like it took an hour.  It was like watching a horror movie when you hear the terrifying music and you just know something awful is about to happen.  I didn't know what I was going to see.  I came around the corner to see several flashing lights. What was once a tar road was now covered in so much dirt it felt like a different road.  There were branches and large pieces of wood everywhere.  I drove as close as I could, then got out of my car and started sprinting towards the wreck until a police officer stopped me.  I was blank, - none of this felt real, like this isn't my life, this can't be happening.  I could barely speak while looking at a white convertible, with a dark interior, on its side up against a tree.  But I only saw one car and none of Corbin’s friends had a white convertible.  I was confused.  I looked at the officer and said, “I think my nephew was in this accident.”  He asked his name and verified that he was.  It took all I had in me to ask him if Corbin was also in the car.  Yes, he confirmed.

There had been 4 boys in the car and Corbin’s injuries were the most severe, he told me.    “What do you mean most severe, what kind of injuries?” I asked.  “He was alive when he left in the ambulance,” is all he told me. Not comforting words to a mother seeking answers.  I ran back to my car and raced to the hospital.  I think I made 100 frantic phone calls on the way. I called my daughter Grace to tell her Corbin was in the accident and ask who drove a white convertible with red stickers.  She said it was his friend, Tyler.  They weren’t driving a convertible – the roof had been removed to get the boys out.  The car had a light interior, not dark, but the seats were now covered in blood. 

When I arrived at the hospital my mom and sister in law were standing in the ER trying to get information, and more and more friends and family kept showing up. After what felt like an hour, a nurse walked in and asked which one of us was Corbin’s mother and I stood up.  She said, “Come with me.”  As we started to walk down the hallway she wrapped her arms around me and braced me like I was going to fall.  She said nothing. She just held me up. Then, all of a sudden, there he was.  Corbin was on a stretcher - naked and lifeless - with 20 people around him rushing in and out of the large room.  He was covered in blood and hooked up to all kind of machines.  The nurse pulled up a chair and told me to sit. My brother had come with us and was standing behind me rubbing my shoulders trying to reassure me that Corbin was going to be ok, he was going to pull through this.  It felt like standing still in the middle of a freeway while everything flies past you.  No one told me what was going on, no one explained his injuries or what they were doing to him.  I had no idea why they had brought me down to see this and before I knew it, the same nurse grabbed me and walked me back to the waiting room.  I had no information to report except the horror I had seen. I felt helpless.

Eventually a doctor rushed into the room and told us Corbin had suffered a severe head injury and that they might need to remove part of his skull to let his brain swell. He had internal bleeding and punctured lungs among many other injuries, and they were rushing him into surgery.  I signed the consent and asked what his chances were.  She wouldn't give a straight answer.  She just reiterated how severe his injuries were and ran out the door.

I just kept telling myself “not Corbin, not my child.” I felt like I was trying to will him out of this, and I wasn't going to stop.

A few hours had gone by at this point and about 30 friends and family had shown up, including Corbin’s cousin Paul.  Paul had worked in the medical field for years.  He had been a 911 operator as well as a member of a medical transport team in Boston for 9 years.  He asked me what I knew and if I felt like I had all of the information I needed.  Of course I didn't. I felt lost. He brought me back down to the ER and asked the doctor, who had worked on Corbin, if we could speak to him.  He agreed and the three of us sat down.  Paul asked all kinds of medical questions and I just remember being blank.  I just wanted to know if my son was going to live.  At the end of the conversation Paul asked “if Corbin survives surgery do you think he should be transported to a level one trauma center?”  The doctor said no, he believed their team could handle it.  We thanked him and went back upstairs.  Paul explained the difference in hospitals to me on the way upstairs and how a level one trauma center deals with these kinds of severe traumas every day.  Paul believed that’s where Corbin should go, should he make it through surgery.  I trusted him and agreed.

He survived the surgery—a huge victory but then the surgeon and a neurologist came to talk to us.  Corbin had no brain activity, the neurologist said, and he wasn't going to survive. We needed to prepare to say good bye.  “WAIT WHAT???!!!” Everyone started sobbing or screaming.  I was just thinking “NO! NO! He’s alive, I’ll take him anyway I can get him.”  I felt like they were giving up.  I refused to start grieving.  Two of my other children, Grace and Cohen, came over and were on my lap crying.  I was trying to console them by hugging them but I couldn't speak.  There were no words.  I felt very robotic.  My mother was loudly sobbing but growing increasingly more concerned with my lack of reaction.  I heard her tell the Doctor she needed to give me something because I was in shock. Corbin’s dad Jeff, who had just arrived, ran through the hall screaming “not my boy!”  Aunts, uncles, cousins, and friends were all in groups hugging each other and crying, but they all keep looking over at me. The surgeon came over and knelt beside me, she started rubbing my arm and explaining how bad his head injury was.  I just looked at her and said “but he’s alive?” She said “yes but….” I interrupted, “then I want him transferred to Boston Children’s Hospital and I want to see him.”  She said “well I don't know if they'll take him, he might not be stable enough.”  I insisted.  She agreed to try and walked away. I knew she took me seriously.  I have a laid-back personality for the most part until we’re dealing with my children - then a whole other protective, ‘don't stand in my way,’ side comes out.

They let Corbin’s dad and I in to see him.  Corbin was so broken, barely recognizable, but I felt comfort being by his side, feeling his warm hand and watching his chest slowly move up and down, even if a machine was making it happen.  He had multiple facial and spinal fractures, several skull fractures with one even pinching off a main artery to his brain, two punctured lungs, torn bowels, two broken shoulder blades, a collar bone broken in two different spots, internal bleeding, brain bleeds, and many more injuries. Within an hour, Corbin was on a helicopter to Boston.  Steve and I stood in the ER as we watched them take off with Corbin.  Another helpless feeling.  Protecting him felt out of my control when I couldn't be near him.  

Corbin went through a lot in that first 24 hours.  Concord Hospital had removed his spleen, repaired a torn bowel, placed a monitor in his skull and left an open incision in his abdomen from his pelvis to his ribs.  Once in Boston he was rushed into a second surgery and had a second monitor with a drain placed in his skull, internal bleeding repaired and more than half of his blood transfused. 

We spent the next 50 nights, with the majority of them in the ICU, at Boston Children’s Hospital.  At first our goal was for him to survive the next 24 hours… and then the next 48 hours… and then the next 72 hours… and even when they finally believed he would survive, they told me they didn't believe he would regain much brain function. “Not Corbin, Not my child,” I kept saying.  I was given so many negative predictions that eventually I just stopped listening.  I couldn't help but believe that Corbin was still in that body.  Corbin’s sister and I spent every night in that room with him.  We played his favorite music, we read him sports news, we told him stories, we brought familiar things from home like is pillowcase and favorite blanket so that he might recognize the smell.

The first day he opened his eye and looked at me, I finally saw Corbin.  I didn't see a blank stare. He was in there. Still, the doctors told me he would most likely need to spend the rest of his life in a long-term care facility, but I never gave up. I told the doctors I knew he was capable of more - he just needed more time.

Corbin was awake but not for long periods.  He had just started to respond yes and no through thumbs up or down, sometimes.  He had a tracheostomy tube for his airway and a feeding tube for his nutrition.  He was still on monitors and many medications, but slowly, he got better.

50 days after his accident Spaulding Rehab hospital finally agreed to take him. I felt like we had won the lottery. It had all paid off.  All the sleepless nights, all the persistence, all the never giving up even when you have the most intelligent doctors in the world giving you negative information.  I knew we were going to do this, I knew everything was going to be alright. 

When he first got to Spaulding, he wasn’t talking or walking. He had a feeding tube and a tracheostomy. But he spent 41 days pushing his body and his mind to do things we were told he would never do again. On November 1st, he walked out of Spaulding, talking and eating regular food.

91 days after I was told to say goodbye to Corbin, he was back home with his family and so close to his old self. He graduated from High School last month. But our lives are forever changed.  Our days are still filled with tutoring and therapy, but I wouldn't change any of it for a second.  We cherish the time we have now - the times we have nothing to do but sit around the kitchen counter and just talk and laugh - that we would have taken for granted before.  When you are faced with never seeing a loved one again, never being able to hug them or kiss them, you realize how much every moment counts.  I had a nurse at Spaulding tell me that the support Corbin had is why he made this kind of recovery.  She said she had been doing the job for years, and yes of course the medical part of it plays a huge role. But beyond just being alive, Corbin thrived.  Having his family by his side, showing him the love and support, is what gives people the will to fight and keep pushing. I believe in the power of love and positivity.

So many people have told me they wouldn't have been able to do the things I’ve done, but I don't believe that.  I believe we all have an inner strength we know nothing about until we’re put to this kind of test.  We have to keep positivity even when there seems to be nothing to be positive about.  Find the smallest thing and hold onto it.  For me, it was the fact Corbin was alive.  As long as he was still alive, I wasn't giving up. 

A kidney donor and recipient share their stories at a live storytelling event hosted by Health Story Collaborative at WBUR’s CitySpace.

 20 people die every day in the United States waiting for an organ transplant. If you were a match for someone who needed a living donor, would you save another’s life by giving part of your own? 

Genevieve did. When she learned her work colleague Mike needed a living donor to cure his kidney disease, she immediately felt called to help, and she was a match. The process not only entailed an onslaught of medical appointments and tests, the surgery and recovery period—but also shifts in her own sense of self and in her relationship to Mike. And for Mike, what did it mean to be receiving an organ—really a second chance at life—from another person, one whom he knew professionally and would continue to work with? How did this grand gesture of generosity connect and change them? 

 On May 23, at WBUR's CitySpace, Genevieve and Mike shared their version of this extraordinary journey. It was an amazing event, healing for storytellers and audience members alike. 

Watch the video here. 

Listening will give you faith in the capacity for compassion, connection and dignity in healthcare. 

Before it all began, we were just regular people, living our quiet life and growing into a marriage. I often shake my head in disbelief that something as dramatic as a brain tumor happened to such a boring couple. You see, we met in a hotbed of nerd-dom, MIT, in a graduate program for organic chemistry. I had come from a small college and felt behind academically, and most of my peers had come with serious relationships while I knew nobody. As I struggled to find my way, I noticed Chris. He exuded calm and kindness in a competitive, charged environment. After a helpful prod from a mutual friend, I summoned the nerve to ask Chris out for a visit to the Harvard Museum of Natural History on our day off from lab. He accepted and asked me to lunch the day before our date. He surprised me by being funny and talkative, and we hit it off. Our time at the museum was almost magical. As it was about to close, Chris and I entered the Earth and Planetary Science room full of minerals and rocks. It was dark outside and the display cases of gems seemed to shine brightly in contrast, and I was also shining with happiness. We extended our time together with dinner, then again with coffee. I felt lucky.

We bonded quickly over our shared interests in organic chemistry, teaching, and family. Unlike most of our peers, Chris had a rich life outside of school, full of family and friends. Rapidly our separate worlds became entwined. We were a team: best friends, partners, each the biggest supporter of the other. He did not ask me to marry him, we decided together. He did not surprise me with a ring, we chose one together. We turned to each other to debrief about work, to discuss our worries, to make plans. We didn’t need much outside of our private world.

In 2007, we were three years into our marriage and everything was just taking off. I landed my first “real” job, we bought our house, we had our first child, and we turned 30.  On the last day of 2007, everything turned upside down never to quite right itself again. We were in the Midwest visiting my family, headed to a New Year’s Eve gathering. Chris, luckily not driving, began acting strangely. It was the shock of my life to see my husband unresponsive and in uncontrolled motion, experiencing what I would later learn was a grand mal seizure. I fished Chris’s cell phone out of his pocket and called 911 in a panic. At the hospital, Chris was given anti-seizure medications and sent straight off for a CT scan. Soon after, a clearly experienced doctor broke the news - the seizure was caused by a mass in Chris’s brain. In my shock, the only thing I could ask was, “is it big?” The answer was not encouraging; it was “fairly good-sized.”

Time seemed to unfurl differently after that. Moments blended together in a haze of shock. We flew back to Boston, Chris slept on the plane with our son napping across our laps. My mind was buzzing with white noise, there was only one thought that stood out with clarity – what is going to happen? There would be no quick answer to that… 

January was a dark, confusing time as we chased all over the Boston area in search of the right medical team. Finally, we landed at MGH. Chris had an aggressive, awake craniotomy on one of the longest days of my life. The rest of the year was a dark blur of a difficult recovery from the surgery, daily radiation treatments, cognitive rehab appointments and a terrifying uncertainty. We also had a perplexing diagnosis for Chris – low grade glioma. The doctors were absolutely clear: there is no cure, the tumor would come back and be more aggressive, but the prognosis was that Chris would likely live for 10-20 years.

At first the disease surveillance scans were frequent. Gradually the time between them lengthened as they came back stable. As partners, our shock turned to coping with a long-term disease. We took things one day at a time, waking up, readying our son for daycare, working. When one of us had a particularly bad day, we learned to get through it by staying in motion. Vigorous house-cleaning, raking the yard, cooking on the grill – these things provided helpful distractions. Through it all we had each other. We talked about everything as we always had, but we became even closer. Slowly, our life did return to something resembling normal, but the undercurrent of wondering when the tumor would return was always there. After a couple of years, the tumor began to feel surreal and we discussed this endlessly. How could life feel this normal? Did anyone else understand that we were waiting for the other shoe to drop? There were no days that Chris did not think about dying and no days without the incurable tumor crossing my mind, but there was still work to do, our son to raise, dinner to fix, and bills to pay.

This long-term, terminal diagnosis threw a wrench in our family plans. If we hadn’t already had a child, perhaps we would not have chosen to bring children into the situation to avoid the future pain of loss. But, our son was already on this path with us and we had always wanted to have more than one child. We interrogated the doctors about genetics and felt assured that the kids’ risk would not be higher. We “just” had to reconcile the idea of a new baby with a terminal brain tumor… Over time, “no” gradually turned to “yes” for Chris, and neither of us looked back. Our second pregnancy brought a sweet joy. The brain tumor gave us a deep appreciation for this chance at new life. Our son was thrilled when he learned he would be a big brother! One day in the middle of a science seminar, I looked down and smiled at my black and white patterned shirt wiggling in time to the first palpable baby kicks. The day we found out the baby was a little girl, Chris and I were both overjoyed and marveled at our great luck to parent a girl along with our boy.  Just before she made her entrance to the world, Chris and I slowly walked the hallways of the hospital, pausing frequently for contractions, Chris supporting me as he always did. Despite the pain, I remember thinking how improbable this moment was in light of his illness, and trying to etch it in my memory. As she was born, Chris played his favorite song The One Who Knows and we both shed happy tears. We delighted in this little girl, knowing that nothing about life was guaranteed and still, here she was somehow.

As our family expanded to four, the richness of life also expanded. Chris reveled in being a dad – he was funny, always able to diffuse difficult moments with a joke. He was kind, quick to enfold his children in hugs. Chris grew professionally, becoming a leader at work. For several years life was a beautiful, normal dance of “do you need to leave early this morning, I’ll pick the kids up tonight, can you grab some milk on the way home, do we have plans this weekend, let’s go out for pizza.”

That is, until the tumor came back. It’s interesting, when I anticipated the recurrence, I always thought it would be instantly devastating. Instead, we found that recurrence was gradual but progressive. It happened like this: Chris experienced a slight uptick in focal seizures in the months leading up to his annual MRI.  Instead of the usual “looks good” post-appointment text, I received one that just read “appointment over.” Chris reported that there was an area of concern that could be tumor growth. A biopsy revealed Grade 3 tumor, more aggressive than before, but still, Chris was himself. We were lucky in that respect. He entered a clinical trial and chased all over Boston for special MRI scans and long hospital days, all the while keeping fastidious track of cycle days, medications, and symptoms. We were worried, but we were doing something about the tumor.

Things went smoothly, until the awful day Chris's clinical trial doctor popped her head in the exam room to exclaim that his tumor had shrunk by 30%, but soon came back to say no, sorry, there was a mistake in the software measurements. The tumor had actually grown so much Chris was ineligible for the clinical trial.

After four months of normal time on Temodar treatment and a stable MRI, Chris had a grand mal seizure once again. The dread of the next MRI scan was sickening, and it brought worse news than we imagined – not only was the tumor growing but it was also infiltrating a second area. Another biopsy revealed that the tumor had progressed to glioblastoma. But still, Chris was himself, working on his laptop not 48 hours past brain surgery.

But then, Chris declined suddenly. He began having lengthy focal seizures, his vision deteriorated, and reading was problematic. He went on emergency radiation treatments and last resort Avastin infusions. After a whirlwind of daily hospital trips, we had to wait and watch how the tumor responded.

We were on borrowed time. We did unpleasant things: estate planning, transitioning all of the bills to me. Chris showed me where the water shutoff to the house was and where to find manuals for the lawnmower and snowblower. Those discussions about how to carry on without him were excruciating. Chris’s main concern was that the family would be taken care of, and in light of the painful fact that he would soon die, he did everything he could to ensure it. Most importantly, we tried to be present for each other and the kids. We noted how difficult it was to “live in the moment” for an extended period of time, but we tried. We enjoyed simple moments, knowing that there would not be many left: walks together, date lunches, family outings, time at the park, beach trips. Chris did not feel the urge to check off an ambitious bucket list, but rather he treasured the kind of togetherness that can be so easily taken for granted.

All the while, we braced for the worst. For a few months, it didn’t come and we started to muse over the fact that it had not happened. Summer turned to fall before the tumor grew, but still Chris did relatively well even after we received this news. Our hearts were full and breaking as we fit in lots of lasts – last Halloween, Chris’s 41st birthday, trip to the Midwest to see family, Thanksgiving. As the holidays approached we knew that if Chris made it to them, they would be the last as a family of four.

As we were preparing to leave the house to pick out a Christmas tree, Chris had a grand mal seizure. Just as he came out of it, another started. I did my best to stay calm and administer medication, but then a third seizure started. He was taken by ambulance to the ER and almost died from respiratory depression. Somehow, Chris made it through. We were lucky. We had not been ready to say goodbye despite all of our preparation.

Chris came home by ambulance on hospice services. It was a terribly difficult December as his right side weakened, seizure activity increased, the number of medications was overwhelming, and the end was drawing close. We set small goals, trying to make it through Christmas and have a nice family time. Somehow we did, but afterwards Chris was less peaceful and I could no longer care for him well. In our past discussions about this end stage we had always prioritized Chris being at home but realized things could get out of hand and a hospice facility might be needed. Chris had wanted to shield his children from the worst of his decline. The moment arrived when he felt he should not be at home and I agreed.

On yet another difficult New Year’s Eve, we got word mid-morning that a bed opened at a hospice house, and Chris left our home by ambulance, just a couple of hours later. To say it was hard to watch him leave doesn’t begin to touch the emptiness of that moment. As he was loaded into the ambulance, Chris lay on a gurney facing the front of the house we bought together and raised our family in. I often wonder what was going through his mind. Was he desperately sad? The kids and I had to watch him leave, knowing he would never return to us, and we cried together for a few minutes after he left. My solitary journey to the hospice house was marked by shock that this was actually happening. Despite my wanting time to stop, Chris faded over the next eight days. He was mostly peaceful, always loving, and truly serene in the end. When he could no longer speak, he telegraphed his love by winking his good eye slowly several times. Chris died on January 8th.

Chris’s brain tumor changed the course of his life and ended it early. It shaped mine, too, and that of our children, in ways that we are only just discovering. Telling this journey is something that helps me process everything. But, Chris was so much more than this terrible cancer. Before the tumor was discovered Chris already embodied gentleness, loved a good laugh, was whip smart, always kind, and steadfast in his love for family and friends. These things did not change in the face of terminal illness. If anything, Chris doubled down on the way he lived knowing his life would not be a long one.

Now, Chris is gone and I’m no longer dreading his death but I’m desperately missing and loving him in his absence. I am left with a hundred thousand memories to carry as my life continues without my partner. I move forward reluctantly but still, I move forward. I am learning about myself and my capability as an individual. When things seem hard, I remember Chris’s unwavering opinion that I could do it, whatever “it” was, and I remember how he managed so admirably under his impossible circumstances. On my better days I focus on the feeling of being lucky. I was lucky to know Chris, to learn from him, to love and be loved by him, and to share a life with him. I told Chris before and I will say it again now, in a heartbeat I would do everything all over again with him.    

Listen to Chris and Betsy here, in an Audio Story recorded in August, 2018, six months before Chris died.

Listen to Jessica and Jon share their story.

Jessica Peters had a stroke in 2011, at the age of 26, when her left carotid artery spontaneously dissected, or tore, resulting in decreased blood flow to the left side of her brain and permanent damage. She was engaged to be married at the time, and her fiancé, Jon, discovered her upon awakening one morning with an asymmetric smile and an inability to speak. Because his mother had had a stroke a year prior, he pretty much knew immediately what was happening. He didn’t waste time before calling 911.

The stroke hit the left frontal and parietal lobes of the brain, including Broca’s area, a region responsible for language production. Now, Jessica lives with persistent weakness in her right arm and leg, as well as an expressive aphasia, meaning she can understand everything that is said to her but has a difficult time producing language, or expressing herself, both in speech and in writing. This can of course be frustrating but she works hard to make herself heard.  

Jessica and Jon met in 2006, when Jessica was just 22 and Jon was 29. They describe their pre-stroke lives as carefree and playful, full of adventure—amusement parks, rollercoasters, glider rides, concerts, dancing and a lot of laughter. Being physically able and indestructible felt like a given. In addition to her day job as a real estate broker, Jessica, once a roller derby participant herself, worked as a referee for the Boston Derby Dames managing the penalty box. This could get pretty rough, but she thrived on the intensity. The stroke changed things of course, and forced Jon and Jessica to slow down and have a more cautious approach to life, but fun is still a prominent theme in their relationship. Despite the trauma of an unexpected stroke, a grueling recovery and ongoing disability, they continue to laugh as much as possible. Their laughter is buoying.

To their credit, they kept their wedding date and were married within a year of the stroke. That was 7 years ago. “I knew you were still in there,” says Jon to Jessica. But it hasn’t all been easy, and they are honest about their struggles, Jessica more the “glass-half-full” type and Jon more of a realist.

“I don’t feel why me,” says Jessica. “But you did, in the beginning,” reminds Jon. “You definitely have an upbeat mentality, but I also observe when you don’t. We both have hard times.”

As a couple, they have navigated challenges that would have ended many if not most relationships. Communication has been the biggest struggle, for obvious reasons. According to Jon, it always been important to him to be understood, to process things by talking them through. He acknowledges the sense of loss he feels in this regard, post-stroke. Of course, Jessica wants to be there for Jon and to give him what he needs, but she has some difficulties processing as well as producing language. If she is given too much information all at once, she can’t keep track. “I lose the front words,” she says.

Both acknowledge that the communication challenges have made them more mindful of and sympathetic to what the other needs. Despite, or maybe because of, the struggles, in some ways they now understand each other better. “I speak Jessica’s variety of aphasia,” says Jon, and indeed, he is an expert at coaxing her along, asking “Do you want me to tee you up?” when she gets stuck. And sometimes she tees him up. Their playful banter is practically a dance, stutters and all.

Jon calls Jessica “tough as nails” and marvels at all she has accomplished. She has demonstrated incredible persistence and has learned to live a full and active life despite her disabilities. “I don’t need your help at all now,” she reminds Jon, firmly but with a smile. She now volunteers her time to talk with new stroke patients, helping them adjust to their post-stroke lives. She reminds them to hold on to hope, to keep moving forward. For Jessica, life is good. She’s married, has a job, owns a house, and plays adaptive sports—rock climbing, biking, kayaking.

Most importantly, she and Jon have a thriving and happy relationship. The stroke has required both of them to redefine themselves again and again. This is not the life they planned for, but they’re doing it, living fully, listening to one another, being honest and laughing whenever possible.

*Mixing and sound design by David Goodman

Music:

1. Joa Rajadel, “The Quiet Mind’s Essence” (2019 CC-by, nd, nc)

2. FMT (Marco Fabre), “Project 3612” (2019 CC-by, nd, nc)

3.  Guitario, “Temps Perdu” (2019 CC-by, nd, nc) 

4. Oto Yumeno, “Lover’s Ballad” (2019 CC-by, nd, nc)

5. Joystock, ”Majestic Earth” (2019 CC-by, nd, nc)
   

Listen to Sean share his story.

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

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

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

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

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

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

*Mixing and sound design by David Goodman

Music:

1. Guitar, “Le Conqerant”

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

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

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

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

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

An Interview with Marisa Renee Lee

By Val Walker

No matter how difficult her day might have been, Marisa’s best bet for beating the blues is to read stories of people helping others. She loves to learn how people turned empathy into action with kindness, thoughtfulness and resourcefulness. Following her passion, Marisa and her friend, Jackie Scharnick, launched a website in 2018 called Supportal which is dedicated to publishing first-hand accounts of friends helping friends who are experiencing life-changing challenges. Supportal is devoted to celebrating the infinitely possible ways that empathy calls us into action--as caregivers, as comforters and as wonderful friends. In short, as Supportal’s tagline says, “Being there starts here.”

About Marisa

Marisa Renee Lee is a graduate of Harvard College and an avid Green Bay Packers fan. She resides in Falls Church, Virginia with her husband Matt and their dog Sadie.

In 2007, Marisa founded The Pink Agenda, a breast cancer non-profit, in honor of her mother Lisa. Almost a decade later, The Pink Agenda is now a national organization of young professionals committed to raising money for breast cancer research and direct care service programs in partnership with The Breast Cancer Research Foundation. 

Today Marisa is a cross-sector leader dedicated to engaging the private sector to help solve public problems. In addition to her work on Supportal, Marisa runs a social impact firm that allows her to support a variety of institutions on organizational design and development, public-private partnership strategies, change management, and stakeholder engagement. Until 2017 Marisa served as the Managing Director of the My Brother’s Keeper Alliance (MBK Alliance), a nonprofit born out of President Obama's call to action to address the barriers to success that boys and young men of color (BYMOC) disproportionately face along the life path. Through her work with MBK Alliance, Marisa leads a collaborative, cross-sectoral movement that unites business, philanthropy, nonprofit, and community leaders, to increase pathways of opportunity for BYMOC.

 Photo: Marisa with her mother

About Supportal 
 

Supportal’s mission is to show people how to turn empathy into action. Marisa learned much about the wisdom of empathy at a young age as her mother’s primary caregiver as she struggled with multiple sclerosis and eventually succumbed to breast cancer. She and her friend, Jackie Scharmick, a survivor of leukemia, founded Supportal to help others cope with demanding ordeals where we find ourselves strapped, isolated and overwhelmed. Marisa and Jackie are committed to ensuring that “no one will have to go it alone.

A Conversation with Marisa

Val: What brings you joy in your work with Supportal?

Marisa: Supportal’s mission gives me joy: Helping people help others. I love reading people's stories of kindness, thoughtfulness, and comfort. Supportal gathers stories of people helping others who are going through hard times. It brings me joy to know that good things are happening out there, and that people are really showing up, not just making vague promises. People need encouragement, but they also need to celebrate the action that has been taken—the difference it has made in their lives. We need to celebrate empathy in action.

Val: How do you see the internet and social media helping to bring people together around difficult issues such as illness, grief, loneliness, or other losses?

Marisa: One simple example: My friend from years ago shared his story on Facebook Messenger about losing his father. I hadn’t heard from him for so very long, and I didn’t know he’d lost his father, the only living parent he had in his life. It was great to hear from him that all of my sharing about grief and loss made him feel less alone in his own grief. It reminded me that the online spaces—Supportal, social media, etc., can be a great way for people to find connection with others going through similar experiences. No one needs to be alone.

Val: Do you think the internet and social media can cause social isolation?

Marisa: If young people, especially children and teens, are onscreen too much of the time, I think it can be damaging for their social development and limits their social skills—just being able to have conversations. Also, social media can set us up to believe in unrealistic expectations--standards that we can never live up to. It's isolating to feel that we aren't living the way we think we are "supposed" to be living. That’s why I think it’s important for us to share real stories online like the ones found on Supportal. So, yes, there can be a downside to social media, but at the same time it can play an important role in bringing people together. It really is all a balancing act.

Val: What is in store for Supportal?

Marisa: I'm developing Supportal to be a one-stop-shop for what to do when something bad happens to someone you care about. If someone we love suffers from a divorce, a miscarriage, a job loss, or a death, what can we say and do? How can we help? Supportal provides readers with first-hand accounts of people who have been through a life-changing challenge and share what helped them most. We provide ideas for gifts, goods, services, and practical tips for how to show up for those in need.

Val: It’s heartening that Supportal teaches us through stories that show us how to support people in distress. There’s nothing like real-life experience for how to comfort others!

Marisa: Right. Stories are wonderful for giving examples of empathy in action, how to respond to our friends and loved ones who are in difficult circumstances. Stories have a way of showing us what to do. Stories are about challenges and how we face them—but we don’t have to be alone facing those challenges-- let’s celebrate the ways we are supported by others! That’s why I co-created Supportal. We don’t have to do it all alone.

Val: Thanks for sharing your time with us! 

Marisa: Thank you--this was fun!

More about Marisa

Marisa’s background is remarkably extensive, and I would like to share more here

In 2010, Marisa joined the U.S. Small Business Administration (SBA) as an appointee in the Obama Administration. During that time, she was able to begin to combine her passion for service with her finance and small business background. At the SBA, Marisa focused on entrepreneurship and access to capital in underserved communities. Marisa supported the Agency’s program offices on outreach, restructuring and creating new lending programs, and the formulation and implementation of policies to promote entrepreneurship. Marisa also coordinated minority business engagement activities across the Obama Administration. Additionally, Marisa spearheaded a series of Urban Economic Forums co-hosted by the White House and the SBA. These forums connected thousands of urban entrepreneurs to public, non-profit, and private sector business development resources.

In 2013, Marisa accepted a position with the White House Domestic Policy Council as a Senior Policy Advisor for Urban Affairs and Economic Mobility. Marisa directed all engagement efforts for the President’s Ladders of Opportunity and Promise Zones initiatives. Marisa later served as Deputy Director of Private Sector Engagement at the White House where she oversaw public-private partnerships and relationships with the business community on behalf of President Obama.

In 2016, Marisa was recognized in the Chronicle of Philanthropy 40 Under 40 as a “Rabble Rouser for Obama.” In 2017 she was named a member of the Ebony Power 100 amongst other Community Crusaders she greatly admires. In 2018 she was a contributing author to the book Modern Loss, a series of candid stories and illustrations on grief. In addition, she has been a featured speaker at several forums including SXSW. Marisa has also written op-eds on race, opportunity, and economic mobility for CNN, Philanthropy News Digest, News One, and other outlets.

Resources

Supportal

My Brother’s Keeper Alli

The Pink Agenda

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

Keep up with Val at www.HearteningResources.com

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

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

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

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

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

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

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

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

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

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

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

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

If this isn’t healing, what is?

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

*Mixing and sound design by David Goodman

Music:

1. Catie Curtis, “Passing Through”

2. Dar Williams, “The One Who Knows”

3. Sugarland, “Shine the Light”

By Jennifer Pustz

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 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 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 2:00pm. 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 were 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 to 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.

The unit is separated from the outside world by two pairs of locked double doors. A blinking green light and a soft beep herald our passage through them into a no-man’s-land where a guard sits, patiently unlocking the doors as we come and go. When I enter the airlock the first morning, hang my coat and stow my backpack, it feels as though I’m in a sci-fi movie, an intergalactic explorer awaiting my first excursion into the uncharted expanses of space. The atmospheres equilibrate and, I will soon learn, norms are stripped away, decompressed. Not sure what to expect, the door chirps open and I step into my month-long rotation on the inpatient psych ward.

Each morning, residents, psychiatrists, nurses, social workers, and I pile into a tiny, windowless room with chairs pushed up against the walls in two rows facing each other. I am the only medical student among them, a wide-eyed interloper squeezing into a center chair. Patients are led in one by one to sit beneath a watercolor painting of goldfish in a pond while we ask them things like, “How is your mood today?” and “Did you need your Zyprexa to sleep last night?” A pleasantly psychotic woman, untroubled by her delusions of being a powerful real estate lawyer – she is homeless but insists that her office has faxed her discharge paperwork – doesn’t seem to notice that I’m there. With fifteen or twenty minutes per patient and our elbows and knees bumping up against each other, these encounters are concentrated in time, in space, in feeling, and they leave me jelly-legged and dazed when I finally stand up hours later. Every minute I’m cycling through the full range of human emotion, from proud to sad to irate to hopeful. I fidget in my chair as tremulous patients beg for benzos. I hold back tears as a suicidal businessman crumples wet tissues in his bandaged hands. Sometimes I just stare at the goldfish and wonder if this is what it’s like to be crazy.

One day a few months prior on a surgery rotation, I stood in the OR at the end of a long case, carefully running a subcuticlar skin closure.

“You’re a natural.” The surgeon, arms crossed, looks over my shoulder. “What specialty do you want to go into?”

“Neurology.” I watched the last stich pull the skin into a taught pink line the patient would remember me by.

“Neurology?” She sounded confused. “But don’t you want to fix people?” Her jaw was tight and face serious.

This was nothing new. From the beginning of medical school we are taught to diagnose and treat. We recite mnemonics for the acute management of myocardial infarctions, and can name first, second, and third line therapies for asthma. We titrate blood pressures to evidence-based levels, and feel weirdly satisfied when our heart failure patients pee after a dose of diuretics.

We are taught to grow from the first year student who can report that something is wrong to the doctor who can do something about it.

On the psych ward, my patients’ foggy insights clouds my own. I find myself in the thick of the confusion with them, trying desperately to “fix,” to “cure,” to achieve some venerated end I had been conditioned to strive for, and driving myself insane with an inexplicable rage when I can’t. A woman with a functional tic can’t accept that her problem is not the result of medical errors and refuses psychiatric intervention. A kind man with bipolar disorder and an addiction who got high and tried to crash his yacht tinkers with his medication doses and stares silently out the window at the sailboats dotting the river below. A deeply depressed attorney can’t allow himself to just feel sad. Seeing them every day is excruciating: each carefully articulated question I ask falls flat, and simple conversations quickly turn into circular back-and-forth’s that devolve to the absurd. Every day I feel like banging my head against the wall, and each night I drag home the weight that others can’t carry.

Shelly* is 30-something, wiry, all clavicle and bony knees– breakable, almost – with thick glasses that magnify her round eyes and give her a permanently forlorn look. She wears Victoria’s Secret sweatpants with a black sweatshirt and Ugg boots, her long brown hair pulled into two braids that fall down her back.

The night before her arrival, she had lined up her anxiety pills, her mutinous artillery of serotonin and GABA, in one last attempt to create order in her chaotic life, before swallowing them one by one. However, her final act of treason was interrupted, and she ended up with us. When we first meet, she is reticent, eyes downcast, giving up only a word or two in barely a whisper. But soon, she opens up.

Two young women in a foreign land, we hit it off: she shows me the drawings she makes in the journal she guards tightly against her chest with crossed arms as she walks around the unit, and talks about seeing her dog when she gets home. She is tougher than her small frame lets on, both physically and mentally. After a week of dutiful CBT practice, she is deemed ready to go conquer her automatic negative thoughts on her own, out in the real world. On the last day of my rotation the two of us sit under the goldfish, talking about going home, about passing through the airlocked doors back to the outside world. Suddenly, her face clouds and she begins to cry for the first time since she’s been here. I hand her tissues.

“What’s wrong?” I break the silence.

“I feel like a failure,” she says through tears. “I’ve worked so hard, what if I’m not actually better? What if I go home and it all starts again?”

I pause.

“Well, at least you’re trying, right? That’s pretty good.” I watch her think about this for a moment, brow furrowed, tiny fists balled in her lap.

“Yeah,” she smiles a little to herself, eyes looking thoughtfully at the floor. “I guess that’s something.”

Back between the doors, I wait for the green light one last time. Four weeks, ten discharged patients, dozens of prescriptions, and countless long silences later, I don’t think I fixed anyone. I sat with them, though, through all the tears and all the tic-ing, and heard what they had to say. Maybe this is how we help: we shelter, we stabilize, we listen, and we together we take steps, however small. We may not always be able to fix. We may not know what happens when our patients leave the quiet of the pond for the rough ocean waves. But we try. Well, I reassure myself, I guess that’s something.

* Name has been changed

Emma Meyers is a third year medical student at Harvard Medical School. She grew up in New Jersey and graduated from Columbia University with a degree in neurobiology. She plans to do a residency in neurology. Outside of medicine, Emma enjoys art, reading fiction, hiking, cycling, and traveling.

My mysterious symptoms began when I was 11 years old.  I liked to play soccer, create art projects, and ride bikes with friends to White Hen to buy candy.  I was the student council class president.  I was also as pale as a ghost, barely weighed 70 pounds, and continually missing school because I was sick.  High fevers, headaches, and chills—that was my deal. The pediatrician repeatedly told my parents, not me, that I had the flu.  After almost a year of recurring flu, my parents wondered if I was being misdiagnosed and sought a second opinion.   I remember being nervous as I overheard phone conversations my mom was having, asking friends for pediatrician recommendations, wondering what was wrong with me.

After one visit, this new pediatrician didn’t think I had the flu, admitted he didn’t know what was wrong, suspected migraines, and sent us to an allergist to do sinus testing.  And so my medical journey began.  From specialist to specialist, until an infectious disease physician referred us to a gastroenterologist for a colonoscopy and, there, my atypical presentation of Crohn’s Disease was discovered.  Crohn’s Disease causes inflammation in the lining of the digestive tract, it can be painful and debilitating, and while there are therapies to reduce symptoms, there is no known cure. 

 By the time my Crohn’s was diagnosed, I’d missed a ton of 6th grade and the one month session of overnight camp that I’d already packed my duffle to attend: T-shirts, shorts, sneakers, swimsuits, beach towels, extra long sheets for the bunk beds, tennis racket, cassette player walkman and headphones, berry flavored lip gloss, and carefully selected stationery to write friends and family at home.  I remember the morning of the camp send-off.  It was a warm, clear, sunny day.  I went to breakfast at McDonald’s with my mom, my younger brother, camp friends, and their parents. Then, we all went to the camp bus stop at the local high school.  While my brother and my camp friends loaded the greyhound buses, buzzing with excitement and nervous energy about spending a month away from home, I stayed back with the parents and waved goodbye as they drove away.  Since we were surely going to figure out “what’s wrong” soon, I planned to go to camp late.  I should have known when I started taking out “just one shirt” from the royal blue duffel bag on the hallway floor that I would soon be unpacking the entire bag.  That summer I watched the fun from the sidelines at home.  Through letters from friends, I heard about camp sneak-outs, gross cafeteria food, and which boys the girls liked.

 Twenty-one years later, now 33 years old, I am just beginning to realize the impact living with Crohn’s has had on my life, the force it has been in shaping my identity.  Watching the fun from the sidelines, as I did on that summer day when the camp buses drove off without me, is a metaphor for how I spent a lot of my time growing up.  Beginning at age 12, I needed to take medication three times a day.  Staying healthy meant restrictions in my diet.  No carbonation, no fake sugar, no drinks from a straw, no chewing gum, no popcorn, no greasy food, no, no, no...  Living with Crohn’s meant no drinking, which meant when friends began experimenting with alcohol, guess who was always stone cold sober and, as soon as I turned 16, the perpetual designated driver?  Me.  Then in college, everyone drunk, having fun, enjoying life.  Not me.  All nighters?  I couldn’t do it.  I stayed up most of the night with my boyfriend who was in town during the fall of freshman year and I ended up in the hospital the next day with a high fever and chills. I was left behind when my parents and brothers vacationed in Mexico when I was in college.  They didn’t take me because they didn’t want me to get sick from the food or water. To be fair, my parents planned to travel alone, but my brothers wheedled their way in on the trip.  Even though I asked to join, I was told “no.”

 The thing is, the missed opportunities for fun, the regimented lifestyle, and the premature responsibility, none of that includes the actual medical interventions: The surgeries, hospital visits, blood tests, IVs, colonoscopies, physical exams, medications, allergic reactions to medications, blah, blah, blah…  While I have a difficult time remembering my medical experiences in their entirety, I do remember certain pieces vividly.  I remember being in the hospital, a male African nurse trying unsuccessfully to put an IV in the top of my skinny little left hand.  I was sitting in a chair next to my hospital bed.  He was standing over me in his scrubs.  I felt helpless, paralyzed with pain and terror.  That was probably close to 20 years ago. A million times since then, I’ve been poked, without flinching.   I worked in a Neonatal Intensive Care Unit; I’ve seen blood, guts, vomit, and babies who are no longer living.  Yet, if I’m in a medical setting and hear the voice of a man with an African accent, I stop dead in my tracks and feel like my heart has momentarily stopped beating. 

 In every medical experience since that fateful IV, I plowed ahead—strong, focused, determined, and without complaint.  I pushed my body to the limit, training as if for an athletic event, but really the event was life.  If my doctor said six weeks post surgery I could begin more intense physical activity, on the 6-week mark I incorporated jogging into my walks, turned jogging into running, and soon was back where I started or stronger.  I’d puke in the trashcan on the side of my high school’s track after running just one mile before evening tennis practice.  Even though I can run for miles in the morning on an empty stomach, I couldn’t run after having eaten breakfast and lunch.  My digestive system wouldn’t allow it.  I coordinated with college professors to have coursework sent to me while I recovered at home from surgery my junior year.  I went to the gym to walk on the treadmill during the polar vortex because I needed to get my legs working again.  I went to yoga when my hands were numb and did poses on my forearms rather than my palms because I needed to use my body in a positive way.  I needed to feel what it was like when my body was working for me, not against me.  I needed to be in charge of my body, make it do what I wanted it to. 

 My family fundraised for the Crohn’s and Colitis Foundation of America (CCFA) for 15 years and I volunteered for CCFA for over a decade.  I created the Pediatric Gastroenterology Family Assistance Fund at University of Chicago Hospital.  I’m proud that I didn’t allow Crohn’s to stop me from achieving, from leading an active, full life.  I’m proud of my philanthropic endeavors and the ways my family and I gave back to the GI community.  I wouldn’t change any of that.  I just wish I’d stopped for a minute to be more present in my own experience.  By never allowing the space to realize or fully understand that my experience was not typical, I think I did myself a disservice. 

 Several months ago, I started seeing a psychotherapist for the first time in my life, ironic, since I’m a clinical social worker.  I sought this support for a personal, important, yet non-Crohn’s-related reason.  My draw to therapy had to do with me needing to feel alive, to feel passion, excitement, connection, desire, and understanding… to feel whole.  I needed to grieve and I was overflowing with anger.  I felt panicked and sad about what I had missed and what I felt I was still missing.  I wanted to feel really alive, like heart-pounding-out-of-my-chest alive. 

 However, when I began to talk, so much of what I shared came back to living life with Crohn’s.  I couldn’t believe that I’d missed how Crohn’s influenced not only how I navigate my life, but who I am, and how I act.  Here I was, no longer operating in survival mode, no longer dissociating, finally aware of my own body, and my feelings, thoughts, and emotions were pouring out of me like a fire hydrant, burst open, flooding the street.  It was as if my Crohn’s flare during my recent pregnancy and the traumatic delivery that followed had opened the floodgates of awareness of 20 years of experiences of growing up with Crohn’s.

 I had serious health issues while pregnant with my second baby.  Reflecting back, I see that the ailments came on in a fashion akin to that of my initial Crohn’s symptoms 20 years prior.  The “we don’t know what’s wrong with you” experience was similar as well.  The chills, headaches, and fevers during pregnancy paled in comparison to the morning when I woke up with no ability to move any joints of my lower extremities.  None.  My symptoms were a mystery—a blood clot?  MS?  Just Crohn’s?  My world-renowned GI doctor was stumped. “You’re a bit of a black box,” he said.  I sat on the crinkly white paper on the medical exam table and asked, “So what’s the plan?”  My doctor’s response was “We’ll figure something out.”  In my mind, that loosely translated into “We have no freaking clue.”  I was terrified.  It was unclear if I’d: A) Need another bowel resection B) Need to try a new medication that “increases the risk of getting a rare brain infection that usually leads to death” or C) Wait for the doctors to figure something out.  I didn’t share it with anyone at the time, but during that pregnancy, I felt I might die, or that I’d potentially live with a severe disability, never able to go running, do yoga, or play at the park with my kids again. 

 With so many drugs pumping through my body and so much illness during pregnancy, I was also secretly scared that my baby wouldn’t be healthy.  There was nothing to do except hope for a good outcome and wait for delivery.  After 15 hours of un-medicated labor, a drastic drop in my blood pressure, and baby’s dangerously low heart rate, I was rushed to the operating room for an emergency c-section.  I felt the wind blowing against my face as a slew of doctors and nurses raced my bed down the corridor through the automatic doors and into the bright lights.  My heart began to pound, my breath became rapid, tears began to flow, and panic set in.  I was acutely aware of what was happening, yet, simultaneously feeling in an out-of-body-experience.   At the last second, a voice of one of the medical professionals from behind me on my left yelled, “Heart rate’s back up!  Cancel the Crash (emergency c-section)!  Cancel the Resus (neonatal resuscitation)!”  I had a brief moment of relief, but medical distress continued and a c-section followed just minutes later.  While in the recovery room holding my brand new baby, swaddled in the white fleece hospital blanket, wearing a little blue knit hat, I cried.  Not happy tears because my baby was healthy.  I cried because I failed.  My body had failed, again.

 Until now, I have not shared the intimate details of this all-consuming process of self-reflection and self-discovery that began for me many months ago.  I have been scared others wouldn’t understand, that they would judge.  I had, however, confided in Rebecca, a dear friend of mine.  Rebecca is soft-spoken, wicked smart, a talented mental health professional, and knows trauma.  She was also my roommate in graduate school, and has taken me to the ER, stayed with me overnight until my parents arrived, calmly rubbing my legs, my body shivering and shaking with chills, my fever dangerously high.  During one of our many phone conversations, I was teary, struggling, trying to make sense of my life as if I was working to solve a physics problem, yet didn’t have enough information and didn’t know the right equations.  She responded, “Al, this is your journey to find your authentic self.”  I laughed.  Leave it to Rebecca to name this humbling, painful, and often lonely process something so pretty, so succinct… so… accurate.  Rebecca’s description resonated with me. 

 I continue along my journey towards healing, wholeness, and authenticity.  I am starting to integrate the fragmented parts of myself, the decades of living in a regimented, need-to-stay-healthy way.  I’m beginning to acknowledge the medical trauma that my physical body endured as threats to its very being, but to which my conscious awareness was not connected.  I am peeling back layers of emotions I never recognized and feelings I never felt.  I am having revelations about decisions I made and paths I chose.  There is so much.  I can’t contain it in my body and mind anymore.  I need to share it so that I’m not carrying it alone.  As I bring to my full awareness this new, yet old, information, I continue to be stunned.  And each time I find a new piece of clarity along the way, the most interesting thing happens: my body gets warm, yet feels chilled, my lips feel tingly and chapped, and I feel feverish… just like I do almost every single time a Crohn’s flare is beginning.  

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

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

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

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

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

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

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

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

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

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

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

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

Out of the Darkness

Wounded outside in

I felt as though I have sinned

Wounded inside out

Oh how I wanted to shout

But there was no way out

Confused by the tormenting of my mind

It often told me to flee

And escape this life of mine

These intrusive thoughts

Powerful and fierce

Lead me into a world of

Self-affliction and fear

In the shadow and secret nights

You told me I was your Queen

Once you called me wife

Confused by your touch

Why did you love me so much?

Your hands strong and mighty

Forming a fist that would crush my body

So, still I stood, unaware of my own breathe

Somewhere in the corner of my mind

Wondering when will the night terror end

The story is out now and my song is strong

No longer will I hide in the corner of my mind

No longer confused and afraid of the midnight air

It stops here

Listen to my story loud and clear

I am free of the misery and constant fear

No longer vulnerable or invisible I am here

I will sing loud and strong for the courts to hear

What you have done to me over the years

It stops here.

The table has turned now

Hide in the shadow and behold your fate

As you will spend the rest of your years

Fearing those who have heard my song 

More about Denise Briales:

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

More about Annie Robinson:

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

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

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

I want to tell you a story.

It took place during the radiation phase of my breast cancer treatments.

My radiation sessions were scheduled at the same time, every day, for six weeks. Each day I saw the same patients and the same technicians. We were all on a first name basis.  I saw the same hot chocolate-cappuccino-coffee machine, the same cheap plastic bowl of fresh apples, oranges and bananas, the same stack of well-worn out-of-date magazines, the same relatives and friends accompanying their loved ones, and the same zapping of radiation. The one thing that didn’t stay the same was our changing bodies. We were all deteriorating. Not only was my body changing from the radiation but also the deep chemically-induced menopause I was in, was severely affecting my quality of life. If you can imagine how regular menopause affects women who lose their hormones gradually over a period of years, just think how it felt to lose mine in two weeks. I was having extreme hot flashes every ten minutes, twenty-four hours a day, seven days a week, some so harsh they left me faint. Menopause can also create a depressed feeling and I felt that creeping in as well. My doctor told me that losing my hormones so fast due to chemotherapy was doing such a job on my body, it was like driving my car into a brick wall at forty miles an hour. I found his analogy validating because that’s exactly how it felt. Smash! Bang! Boom!

Just to let you know, radiation in itself is actually quite painless. Unfortunately, what happens as time wears on is the skin that’s been radiated gets burned. Sometimes it looks like a fashionable tan, sometimes it looks like a sunburn, and sometimes the skin gets so badly burned, the doctors have no option but to stop the treatments completely. That’s exactly what happened to my friend Lily. Lily and I met in the radiation waiting room while she was being treated for breast cancer. She was of Asian decent, and even though she stumbled with her broken English, and I with my Chinese, we understood each other perfectly. Just like schoolgirls, we saved seats for each other every day. We connected on many levels and as the weeks moved along, we developed a deep love and respect for each other.  One day Lily confided in me that she would no longer be coming for treatment.  She opened up her shirt and I couldn’t believe my eyes. The severity of the burns on her chest was shocking. I didn’t know if Lily’s skin was more sensitive than mine or her level of radiation stronger. What I did know was that Lily’s chest couldn’t tolerate any more and her treatments were stopped permanently. I felt terrible for the hopelessness of her situation and, selfishly, I also felt terrible for myself — I would miss her.  I made several attempts to stay in touch, but sadly Lily and I never saw each other again.

That’s not the story I want to tell you.

Another patient I met while sitting in the waiting room, day after day, was Peter.  He had prostate cancer and we soon became buddies. Peter’s treatments were affecting his hormone levels, similar in ways to mine. He was going through a male menopause of sorts, complete with hot flashes, weight gain, frequent bouts of crying, periods of insomnia, low libido and an overall lack of well-being.  He often shared his emotional and physiological changes with me in great detail because he knew I would understand. Peter and I developed quite a bond, playing pranks on each other regularly. Each afternoon, while waiting for his name to be called, he ate a banana from the fruit bowl.  Peter just loved bananas.   One day, he was late for his treatment and I noticed that there was only one banana left in the bowl.  I didn’t want anyone to grab it, so being the thoughtful prankster that I am, I snatched up that Chiquita and hid it in my pocket.  When Peter finally arrived, he ran over to the fruit bowl but alas — no banana.  His disappointment was palpable.

“What’s wrong Peter?” I asked.  “You look so sad.”

“I wanted a banana but there’s none left,” he answered.

“Awww…that’s too bad.  Well, look down here. Oh my goodness. Is this a banana in my pocket or am I just happy to see ya?”  Quickly I whipped out that banana and Peter’s face lit up. What a sight. To most people, this may have seemed like such a small thing, but those kinds of exchanges amused us to no end and it helped get us through the day.

That’s not the story I want to tell you.

We all had our own routines when it came to our radiation appointments. This was mine: I’d sign in, walk into one of five closet-like changing rooms located within arms reach of the patient’s waiting room, put on one of those terribly revealing hospital gowns and leave my clothes on the hook, praying that no one would steal them.  Of course, I really didn’t have to worry too much about that. Being 5 feet tall, my pants would look like knickers on anyone else. After that, I’d sit in the waiting room, have a cappuccino, chat with a friend, read a gossip magazine to get up-to-date with the really important issues in life, and wait for my name to be called. When I’d hear ‘Marla Lukofsky’ over the speaker, I’d be escorted into a cold room with a large radiation machine and would hoist myself up onto an even colder metal table. Then I’d slide the hospital gown down to my waist, lie there and watch the huge high-tech contraption move across the ceiling until its projected grid pattern aligned itself with the tattoos on my chest. The machine would then zoom in close, and the technician-of-the-day would run out of the room as fast as he or she could, and hide behind a five-inch-thick Plexiglas-sealed container. That got me to thinking, ‘Hey, if it’s that dangerous for them, then what am I still doing in here?’

“Are you ready, Marla?” the voice on the intercom would ask.

“Yes, I am.”

 “Okay, then. You can keep breathing, but DON’T MOVE.”

Talk about a contradiction. Then the radiation machine would let out a disturbing sound that alternated between a high-pitched squealing noise and a machine gun popping. In a minute or two it would be all over, only to be repeated several more times on other areas of my chest. Sounds pretty simple doesn’t it. They’d do their job by zapping me and I’d do mine by lying still and taking in the rays.

Each day was becoming harder than the next. I started to feel like I had nothing important to do.  In order to bring in some money and keep myself somewhat active and stimulated, I got myself a part-time job at the only place that would hire me, Tusquellas’ Fresh Fish Market. Can you imagine feeling nauseous and choosing to work in a FRESH FISH MARKET?  What was I thinking?  Talk about upsetting aromas!!! On the plus side, when I went into a huge hot flash, I’d just leave the customer in the middle of their order and jump into the walk-in freezer at the back to cool off.  Sometimes I’d come out with icicles hanging off my hair. I’m not kidding.

Every day like clockwork, while my spirits were plummeting, I’d leave work and go to my radiation sessions. The technicians would always ask me, “How are ya doing, Marla,” before we’d get started and no matter what I’d answer, they’d never say much back except for the expected platitudes.  I hate platitudes. On a regular basis I would challenge them.  “Don’t be so guarded with me or any of the other patients. We’re not going to hurt you, you know!”  I guess I made an impact because when I received my Certificate of Completion from the Comprehensive Cancer Center, there was a hand-written inscription on it saying, ‘Don’t be so guarded! All the best! Andrew and Judy.’

That’s not the story I want to tell you either.

One day, while sitting on the cold slab in the radiation chamber, Andrew, my technician-du-jour, asked me how I was doing. Maybe he was expecting me to say the usual ‘I’m fine thanks and you?’ but I didn’t — not that day.

“To be quite honest Andrew, I’m awful. I work in a fish market, I smell like Tilapia, and I feel like I don’t have a purpose in my life anymore.” Then I started to cry and cry and kept crying as if I was making up for all the days that I hadn’t let myself cry. Andrew handed me a Kleenex and gently said,

“Marla, I think you do have a purpose. Maybe you just can’t see it right now.”

“What are you talking about Andrew? All I do is come in here every day stinking of fish, get zapped, glow in the dark and go home. Nothing more than that.”

"Well, I’ll tell you what I see, Marla. The other day we had a new patient. Remember? She came in with her husband, the one with the blue scarf on her head.  Well, as you know, we have to take a Polaroid picture of each new patient for our records, so that we can make sure we’re giving the right radiation to the right person.  Anyway, you and Peter were sitting together, chatting away as per usual.  Then we came into the waiting room to take that woman’s picture, but she refused to let us and started to cry.

‘No, you can’t take my picture. I’m ugly. I look terrible and I feel terrible, and I don’t want anyone to see me like this. No! You can’t take my picture.’

We explained to her that we couldn’t start her treatments until we had the Polaroid, regulations, you know.  Her husband tried to change her mind and another technician tried too, but she wouldn’t budge.  So, we left the room to re-think our strategy while she sat there still crying.  Then I saw you, Marla. You walked over to her, knelt down right in front of her, put your hands on her knees and said, ‘Hi, my name’s Marla. I couldn’t help but hear what you said about the picture, and the way you look.  I really understand some of what you feel — not all of it, because I’m not you, but I have to tell you something. Underneath my scarf, I look just like you.’

And Marla, you took off your red bandana and exposed your bald head to that woman, a total stranger.  Then you said, ‘You see?  I look just like you. And you know what else? I think you’re beautiful, and trust me, I know a beautiful woman when I see one and you…are beautiful.  I wish I had your looks. I let them take my picture and I’m nowhere near as beautiful as you. Now, if you don’t let them take your picture, then you won’t be able to start your radiation and the sooner you start it, the sooner it’ll be all over and you’ll start feeling better again.’ Well, Marla, the woman sat there for a minute, thought about what you said and blurted out, ‘OK… I’ll let you take my picture.’  As soon as she said that, we scrambled back in, snapped the shot, and got her into the radiation room.  Her husband was grateful and so were we. And now you come in here and tell me that you don’t have a purpose?  Well, all I can say is that what you did for that woman was a wonderful thing. You helped her get through a difficult time. What’s more important than that? I saw you take that banana for Peter and make him laugh. I saw you get that hot chocolate for Cheryl and get her to open up to you. Even though you feel terrible right now, you have to remind yourself that you help people…in more ways than you realize and, in my books, that’s having a purpose — a very important purpose.”

I was shocked by what Andrew had told me. I was more shocked by his total recall.

“How the hell did you know about that Andrew?” I asked. “Do you have hidden cameras everywhere?”

“Actually, yes, we do, in every room, with intercom systems. We watch and listen to everything that goes on around here.”

“Geez…if I knew that, I would’ve put on some lipstick.”

After Andrew left the room, I sat there absorbing all that he had said. He made me feel better.  He gave me a new perspective on things. You see…he took the time for me, to point out that I took the time for someone else.  It was only one moment out of our lives, one moment in time, but it gave so much and sometimes that’s all it takes to help each other get through to the next day and the day after that. Sometimes, it’s just that simple.

That’s the story I want to tell you.

Previously published in the International Journal of User-Driven Healthcare and Cell2Soul.

Marla Lukofsky is a Canadian/American veteran stand-up comedian, writer, breast cancer survivor and keynote speaker. Her voice can be heard as Good Luck Bear on The Carebear Cartoon TV series. Her writings have been published in various medical journals in North America including Cell2Soul: The Journal of Humane Medicine and the Medical Humanities, The International Journal of User-Driven Healthcare (IJUDH) as well as The Online Journal of Community and Person-Centered Dermatology (OJCPCD). Ms. Lukofsky shares her unique journey with cancer and life in the highly acclaimed show ‘I’m Still Here…and so is my Hair!’ to audiences across the Globe. She has also written her memoir by the same title.  Marla’s belief is that if she can touch even one person and have them feel they are not alone, then she has succeeded.

www.marlalukofsky.com

mmlukofsky7@aol.com

http://en.wikipedia.org/wiki/Marla_Lukofsky

I have taken approximately 2,604 birth control pills in my life. Every night for almost seven years, the incessant alarm on my phone sounds at 10pm reminding me to grab my water bottle and swallow my pill. They are a consistent aspect of my life, which being on a first-name-basis friendship with the pharmacist at my local Walgreens epitomizes. They feel like a core part of me, determining when, where, and how I start to bleed.

I began taking them in the seventh grade to regulate my hormones in order to control acne. Contrary to popular belief, I am not alone in this, as many women use birth control to regulate their periods, lessen their cramps, and curtail the debilitating symptoms of PMS.

My experience with these pills has been tumultuous, to say the least. At first, I could not say enough about their strength and success. My skin was clear, I knew exactly when my periods were starting, and I felt so grown-up taking a pill from an aluminum case every day. But that honeymoon period (pun intended) did not last long. About six months after taking my first pill, I returned to the doctor that had initially prescribed them. The pills were changing who I was as a person. My entire family had noticed that the week before my period, I became withdrawn and extremely moody, crying multiple times a day. At first, this was attributed to a combination of cliché teenage mood swings and PMS. However, it wasn’t long until the characteristics that had defined my personality– a quick sense of humor, a happy-go-lucky attitude, and a passion for pulling pranks– had all but disappeared. To my shock, my doctor explained that this was not unusual or uncommon for women taking oral contraceptives. She told me we could experiment with different formulas of pills, but some bodies simply could not handle the pills. I was devastated.

I have tried eight different kinds of birth control pills with varying levels of success. Although an inconvenience in my life, I came to terms over the years with the pill being a core aspect of my womanhood. But after spending a semester enrolled in Women, Gender and Sexuality Studies exploring why women deserve more than what society often expects them to accept, I have come to believe that we deserve more from our birth control products.

 My experience is not unique. Women have learned to expect serious side-effects with any form of birth control. These side-effects include, but are not limited to: nausea, weight fluctuations, headaches, anxiety, depression, and suicidal thoughts.

Strangely, there is no outrage about this extreme failure in medication efficacy. In the US, 62% of women are currently on some form of birth control, yet any action being taken to improve it is underfunded and under-appreciated. Women accept less effective medications with more side effects because we, as a society, have learned to be comfortable with a lower standard of care for women.

Widespread apathy towards women’s health is extremely evident when one looks at a recent study experimenting with men’s birth control. In this study, 320 men were given birth control shots every night for eight weeks, in an effort to share out the responsibility of avoiding unwanted pregnancies. The sample considered men of varying backgrounds and levels of sexual activity. Despite potentially optimistic results, we will never see this study brought to fruition. It was halted due to the men experiencing “severe” side effects, such as mood swings and acne. Prior to the termination of the study, many women were hopeful that men’s birth control was finally a solution to their own undesirable experiences. However, the scientists would not allow men to endure these negative side effects for even eight weeks, when millions of women experience them for the entirety of their reproductive years.

This begs the question of why society is untroubled by the less than ideal standard of care given to women yet does not believe it is acceptable for men to tolerate comparable experiences. The lack of women in STEM careers, a reluctance to believe women’s symptom descriptions, and a greed-driven pharmaceutical industry are all connected to this double standard. The compounding of these three elements creates structural inequalities in healthcare that put women in physical danger and must be addressed sooner rather than later.

Women are underrepresented and undervalued in STEM careers. I am a two-year member of WashU’s Women in STEM Club, which aims to increase support and mentoring for women in STEM fields so that they can be better prepared to endure the journey ahead of them. As a college student aspiring to have a future career in the field of medicine, this cause directly affects the trajectory of my life. A 2013 study called “What's So Special about STEM? A Comparison of Women's Retention in STEM and Professional Occupations” explored the environment faced by women in different careers. The results found that women in STEM have a statistically significant increased tendency to remove themselves from their fields. Due to careful consideration of any confounding variables, the study uncovered that the main cause for the mass exodus from upper STEM fields by women is not due to children, as many people tend to believe, but rather because of a “hostile work environment.”

This unsustainable work environment is evident at a well-known and iconic leader in the technology field, Google headquarters. In August of 2017, an executive engineer penned an internal memo to the entirety of Google named, “Google’s Ideological Echo Chamber.” In this memo, the employee explains that women are biologically more predisposed to neuroticism, have less drive for higher status, and are more agreeable than assertive. He claims, “This may contribute to the higher levels of anxiety women report on Googlegeist and to the lower number of women in high stress jobs.” He later explains that accommodations should never be made for any employees on the basis of gender or race, as the only reason women and minority groups are underrepresented in tech is because of “biological disadvantages.” This memo went unaddressed by Google leadership for many days. Eventually, an apologetic email that contained plans for improvement was sent out to the company staff, but the damage was already done.

Women’s perspectives are integral to the creation of a successful product for women, yet the vast majority of scientists creating, testing, and marketing birth control products are men. I believe men cannot possibly comprehend the debilitating side effects of birth control pills, and therefore will not fight as hard as women would to find a solution. Because of this, it is essential that we encourage and support young women considering careers in science–which must occur early in a girl’s life. A 2004 research study done by Patricia VanLeuvan uncovered that there is a massive dip in interest in science careers of young girls between the seventh grade and the first year of high school. Careers that have better representation of women, such as medicine and biological sciences, experienced a lesser decrease in interest than less represented fields, such as engineering. This research shows that when one generation of women are inspired to pursue fields in STEM, a domino effect will result in the coming generations.

A recent episode of Grey’s Anatomy, one of my personal favorite shows, explored society’s shortcomings at recognizing and treating women’s self-reported symptoms . Dr. Miranda Bailey, a world-renowned and extremely respected Chief of Surgery, goes to a rival hospital’s ER and calmly explains that she believes she is having a heart attack. The ER doctors and cardiologists, all her friends and all white males, immediately begin questioning her history of OCD and anxiety, blaming these disorders as the reason for her symptoms. Chief Bailey responds with authority and confidence, relaying that heart attacks often manifest themselves differently in women, with symptoms such as shortness of breath without pain, anxiety attacks, and jaw and neck pain. Even with her expertise and obvious medical savviness, the other doctors refuse to believe her until her heart literally stops beating for two minutes. It is no wonder that doctors regularly disregard women’s self-reported symptoms, when Dr. Miranda Bailey, one of the most beloved doctors in the TV world, was not believed when she described her condition.

A study aptly named, “The Girl Who Cried Pain,” exposed the unfortunate truth that female patients are “more likely to be treated less aggressively in their initial encounters with the health-care system until they ‘prove that they are as sick as male patients.” This statement translates more tangibly to a nationwide average 49-minute wait time for men compared to a 65-minute wait time for women after reporting the same acute abdominal pain in an ER.

The lower standard of care given to women who choose to take birth control is ignored by those who have the power to improve it, specifically a greed-driven pharmaceutical industry. “Big pharma” makes billions of dollars every year off of birth control products, including pills, IUDs, vaginal rings, patches, and shots. These profit margins are only increased by women trying multiple versions of each product, as they are forced to do when side effects are too debilitating for them to function. These profits serve as positive reinforcement for big pharma to continue making imperfect products.

For many years, big pharma companies have gotten away with imperfect pills, knowing that they are the preferred choice of birth control for sexually active women. A recent study in the UK shows that these tides are turning. Bayer Healthcare, a leader in the market of contraception products, conducted a research study investigating women’s attitude towards varying forms of birth control. This research was confirmed by the Office of National Statistics, and found that 31% of women chose, at some point in their lives, to switch from the pill to Long Acting Reversible Contraception, or LARC’s. These women were totally unsatisfied with the side effects and overall effectiveness of the pill and decided that their bodies and minds deserved better.

Society has taught women to expect a lower standard of care from all healthcare providers, ranging from doctors to CEO’s of pharmaceutical companies. This custom is dangerous for the physical and mental well-being of women, which further effects all aspects of society. Therefore, it is time that we, as women, demand more for ourselves. We deserve birth control that does its job with no side effects. We deserve to be heard when we go to the Emergency Room asking for help. We deserve to be represented in fields that make decisions about our health. We deserve (birth) control.

Works Cited:

“(Don’t Fear) The Reaper.” Grey’s Anatomy, season 14, episode 11, ABC, 1 Feb. 2018. https://www.hulu.com/watch/1215330.

Fassler, Joe. “How Doctors Take Women's Pain Less Seriously.” The Atlantic, Atlantic Media Company, 15 Oct. 2015, www.theatlantic.com/health/archive/2015/10/emergency-room-wait-times-sexism/410515/.

Glass, Jennifer L., et al. “What's So Special about STEM? A Comparison of Women's  Retention in STEM and Professional Occupations.” Social Forces, vol. 92, no. 2,  2013,  pp. 723–756. JSTOR, JSTOR, www.jstor.org/stable/43287810.

Haelle, Tara. “Does Some Birth Control Raise Depression Risk? That's Complicated.” NPR, NPR, 9 Oct. 2016, www.npr.org/sections/health-shots/2016/10/09/497087838/does-some-birth-control-raise-depression-risk-thats-complicated.

JV. “Side Effects Are OK for Women's Birth Control - but Not for Men's?” USA Today, Gannett Satellite Information Network, 1 Nov. 2016, college.usatoday.com/2016/11/01/male-birth-control-side-effects-come-on/.

Planned Parenthood. “Birth Control Methods & Options | Types of Birth Control.” Planned Parenthood, National - PPFA, www.plannedparenthood.org/learn/birth-control.

VanLeuvan, Patricia. “Young Women's Science/Mathematics Career Goals from Seventh Grade  to High School Graduation.” The Journal of Educational Research, vol. 97, no. 5, 2004,  pp. 248–267. JSTOR, JSTOR, www.jstor.org/stable/27548037.

Sarah is currently a junior at Washington University in St. Louis, studying Psychological and Brain Sciences. She strives to one day incorporate her passion for women's health into a career in the medical field.

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.

When people look at my poster, their most frequent response is, “Wow! How can I get my own records? I have always wanted to have mine!” I tell them, “Just do it! And be persistent. Even if the contents turn out to be upsetting, I doubt you will ever be sorry.”

This is the story behind how I finally received mine and what I did with them.

I had been wishing to get my hospital records for a very long time. I felt deeply that they belonged to me as they were words written about me during a hellish three-year period in my adolescence. I was certain that they would be filled with outrageous statements, and I desperately wanted to read and respond to them someday.

I was finally released from the last hospital in 1963, and it wasn't until 1978 that I began my search in earnest. During the intervening years, I had been finishing college, marrying, and raising four young children. Although I managed to keep all of those hospital experiences safely compartmentalized away so I could raise my children with warmth and kindness, believe me, the retrieval of my records was never far from the surface.

In early 1978, shortly after meeting my fantastic fellow comrades (Judi Chamberlin, Dan Fisher and David Oaks), I was inspired to start by politely writing to the directors of each of the four different hospitals where I had been locked up: Baldpate Hospital in MA, The Menninger Clinic in KS, Massachusetts Mental Health Center in MA, and Westborough State Hospital in MA. Weeks went by, and I heard nothing. I wrote again. I waited. Again, I got no response. I even considered flying to Topeka, Kansas, to storm that psychiatric barricade and demand my records in person.

Since I was then a single parent with four young children and dwindling finances, I calmed myself and talked it all over with my trusted and dear therapist, Lee. He had saved my life back in 1963 when, by chance, I first met him the night before I was sent to Westborough. He was a young resident and the only person during those three years who had looked me in the eye and smiled and was genuinely kind. He gave me hope. He told me there was nothing the matter with me that had not been caused by the abuses in the hospitals: combined insulin/ECT without anesthesia, seclusion, restraints, molestation, masses of Thorazine, etc.

After meeting with Lee from time to time over the years, in 1978, after my failed letter-writing campaign, we planned a new record-seeking strategy. He wrote to all four hospital directors. It was difficult for me to give the power over to him, but he seemed to be my last, best hope. In 1975, he had become the Commissioner of Mental Health in MA so he clearly had the power, which I was sadly lacking, and he generously used it to help me. Because of his status and powerful stationery, he heard back from everyone except Baldpate. Some of them were only a few pages of summaries, which was annoying, but when he received them he gave them to me.

Finally, during the spring of 1978, since Baldpate had ignored him, Lee made an appointment for us to drive out there.  He told them he wanted us to read the records together, and, since he had been the commissioner, I am sure they felt forced to let us come. I had been talking for months about wanting to steal my records so, on the drive out, I showed Lee that I had brought a briefcase and explained that I had every intention of stealing the pages. I wasn't sure how I would manage it, but I knew I could figure it out once there.

I still remember the day as if it were yesterday. It was a bright blue, sunny day, the trees and flowers were in full bloom, and I was feeling full of hope and confidence. When we arrived at this desolate location in the country an hour outside of Boston, it was a time-travel experience for me. I had not been there since 1961, and the big red "farmhouse" still remained, looming over the grounds. We were ushered into a small office, far from the desolate cinder-block unit where I had been subjected to the combined insulin/ECT. There were two chairs and a little table between us where the thick folder with my records sat—my huge and seemingly glowing hidden treasure! We were at first left alone together to read them, and we decided that I should start reading and then pass each page to Lee. Soon, however, every few minutes an official would nervously interrupt us by opening the door and asking if we wanted more coffee. The records were filled with atrocious, labeling and demeaning words about me, even more disgusting than I had ever anticipated. And, with growing intensity, I wanted to steal every single page from that house of horrors and report the atrocities all over the world.

Finally, after more than two hours of reading, Lee and I had a conversation about how hard they were making it for me to actually commit my theft. He said he wanted to go to the bathroom and told me to feel completely free to do whatever I wished with the papers while he was out of the room. What an advocate he was! But, at that moment I was overcome by his genuine generosity and kindness and fully aware that he might get into serious trouble if I were to steal the entire record. I simply didn't feel I could put him at risk, so when he returned from the bathroom I explained that I had slipped every other page into my briefcase. I paid special attention to picking the most egregious ones, making sure to leave enough bulk so they would not notice, and they didn’t.  We drove back to Boston. I was elated, and Lee was the good sport and true advocate that he had been for so long.

I spent many hours and weeks and months reading the pages over and over, trying to make sense of every notation, every diagnosis. Finally, I bought a box, decorated it with flowered paper, arranged the pages neatly inside, and tied it up with a pale blue satin ribbon.  I kept it on the top shelf of my bedroom closet, where it stayed for years—until October 11, 1991!

That was the date that Anita Hill was called to testify before the Senate Judiciary Committee in reference to the appointment of Clarence Thomas to the Supreme Court. She claimed he had made unwelcome sexually provocative comments to her when they worked together at the Department of Education and the EEOC.  I believed her! Anita was treated dismissively and poorly by the senators, and her treatment put me into high action. I went to my closet, took down my hospital records and proceeded to go through every single page with a fine-tooth comb. The next day, I took the pages and copied them all several times. I then cut out the pertinent, disgusting and demeaning comments and assembled them all on a huge poster board, which I had laid out on my bed.  I designed it using the typed comments, photos from my childhood, and several small sections from op-ed stories I had written which had been published in newspapers.  It took several days of moving the pieces around until I felt completely satisfied. I then shopped around and found a great radical union press, which was willing to print 1,000 copies, way back before digital. The folks at Red Sun Press in Jamaica Plain, MA, were wonderful! I felt respected, they took my poster seriously, and I was thrilled!

I then began showing, selling and giving it away at conferences.  A dear and close fellow comrade bought the first twenty copies in a true gesture of solidarity and generosity.  It was finally registered with the U.S. Copyright Office on April 25, 2007.  I mailed one to The Museum of Modern Art in New York City as someone had once told me that they keep all art which is given to them. I sent a letter of explanation, asking them to consider having a show of art by people who had been locked up in mental institutions, and they acknowledged receiving it.  A framed copy hangs in the history exhibit at SAMHSA.  I gave one to my internal medicine doctor who just recently told me that it hangs on the back of her office door. She is now a dean at Harvard Medical School so perhaps it is having a positive influence on future doctors there. Two years ago, I had three large fabric, plastic-laminated copies made for using at marches and demonstrations. One of them now hangs in the office of Digital Eyes Film.

In the end, this poster has given me a great deal of satisfaction. I feel it is my personal megaphone from the top of the Empire State Building, shouting out to the world: THIS IS WHAT HAPPENED TO ME and THIS MUST STOP!!!

Dorothy Dundas was institutionalized for three years as an adolescent in the 1960s and was labeled a “schizophrenic” and forced to undergo 40 combined insulin coma/electroshock “treatments.” She experienced and witnessed many atrocities. She believes that luck, determination, her own anger and one compassionate advocate were her best friends on the road to her ultimate survival and freedom. Through a number of op-ed pieces in The Boston Globe, Miami Herald and Detroit Free Press, she has voiced her opposition to abusive psychiatric practices. This poster, Behind Locked Doors, which she created from her hospital records, has been  used in training programs. Dorothy lives in the Boston area where she has raised four wonderful children. She has recently retired from The Crystal Lake Express - her own safe, friendly and reliable car service in which she was the sole driver for 30 years. Dorothy is also a blogger on Mad in America: Finding Resilience and Hope in the Face of Despair.

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.

Dear Andy,

Wow, it’s been a while since we last spoke. I’m about to start my junior year—can you believe that? It still seems like yesterday that you and I met through South Boston Afterschool. On the T-ride to South Boston, we talked in Chinese (I had just started; you helped me with my tones). We talked about girls (we talked a lot about girls). And sometimes we talked about more serious things. About how we were so afraid to fail, about how we constantly felt pulled in all directions. About how hopeless we felt.

When you quit South Boston Afterschool, I just figured it was a sophomore slump. Maybe your economics tutorial was taking up too much of your time, or maybe you were working on a new start-up, trying to be the next Mark Zuckerberg. You were stressed out the last time I saw you. I wasn’t too worried, though. I thought what everyone else here thinks: Junior year will be better than sophomore year. Senior year might be a bit tougher because of job searching, but you’ll be set after that. You’ll be a Harvard grad the rest of your life.

But then you jumped off a tower in downtown Boston. I thought wrong.

Andy, I spent a long time trying to figure out how to write this letter. It’s been on my mind every single day now for months. I almost gave up, because the words just wouldn’t come to me. It was too painful to express.

Then, in May, my best friend since we were babies ended his own life. He had just gotten into Georgia Tech. He had so much talent. He had such an incredible life ahead of him. His mom found his body. They couldn’t show it at the service.

His death inspired me to write this to you. Because it’s not just him, and it’s not just you. Writing this next part terrifies me, Andy. I’m scared because we live in a world where I can’t even write this letter without knowing in my heart that no matter what people will say, they will look at me differently. I want to make a big impact after I graduate, but I know that publicly discussing my complicated history with mental health—a conversation that should not be any more damning than talking about asthma or a heart condition—might prevent me from doing this. But that is exactly why I have to write this letter. It is time for us to reconcile with the reality of the world that we live in. It is time for me to say now what I should have told you before: You are not alone.

I should have told you about fifth grade, when I would stay up every single night thinking terrible thoughts. I had to make sure once, twice, three, four, five times that our doors and windows were locked, because I had to be sure. I had to know that no one would come in and slit my parents’ throats, and then beat my head in with a baseball bat.

I should have told you about sixth grade, when I touched flowers, and leaves, and people’s hair. My classmates did not understand, so they signed a petition asking me to stop. They gave it to the teacher, who presented it to me. Even today I remember the hurt and shame I felt when I saw the names of so many friends written on that piece of paper. They didn’t know that I could not help it; they did not know that it was outside of my control.

I should have told you about seventh grade, when germs consumed me. Bacteria crawled all over my body and inside my mouth. I would go to the bathroom repeatedly in the middle of class to frantically rinse my mouth and scrub my hands. When my best friend sneezed on me to see my reaction, and another spat in my juice and forced me to drink it, and another threw meat at me because she knew I was a vegetarian. I wondered if I had any friends at all. Maybe they were just pretending to like me because I was so funny to watch. I felt worthless; I felt hopeless; I felt powerless. I felt like I didn’t deserve to live.

But more important than any of that, Andy, I should have told you about how finally enough was enough. My mom got me help. She got me help, even when my teacher asked, “Why does he need therapy? He makes all A’s—he’ll be fine.” My mom replied, “I will be sure to write on his tombstone that he had all A’s after he kills himself because he hates his brain.” She knew what too few understand, that objective achievement means very little when life is nothing but shame and darkness.

Because of her intervention, I acquired tools to deal with my compulsions, to say “It Don’t Matter” until it really did not matter. Overcoming my compulsions was the hardest thing I’ve ever done, but it was worth it. I’m here today Andy, writing this letter to you, because my mom got me help.

Andy, I am sorry that I never told you about my middle school self. And I am sorry that I never told you how therapy empowered me to reclaim the beauty in life.

But I hope this letter to you will help change things for others. I hope it will convince someone who is like me all those years ago to find the support that they need. I hope it will encourage someone like me now—too busy with their midterms, their finals, and their papers—to check in on a friend. I hope it will encourage us as a community to fight against the stigma surrounding mental health issues both in our college and in our nation. And most of all, I am sorry that we live in a society where we could not talk openly to each other.

I miss you more than you can know, Andy. By relating this story—of what I did wrong with you, and what my mom did right with me—I want us to make a difference in the world. Then I will know that I am doing your memory proud.

Will

Originally published in the Harvard Crimson, September 2, 2015

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

In Reflection: Will’s thoughts on the process of writing and publishing this letter

At first, writing Dear Andy was pure catharsis. It was also extremely difficult. For years I had not been able to even talk about my history with mental health and the tragedies of my friends' suicides. To put my feelings into words for thousands of people to see would have been unthinkable to me. But after receiving support from my friends and my fraternity brothers, I found the voice to write my article. As a result of the attention that my article received, I am now working with a number of organizations on and off campus as well as Harvard administrators to improve mental health services. The feedback I have received since writing Dear Andy has inspired me to fight for mental health reform, both on campus and beyond. This has become my passion, and I am not going to give up until I have done everything in my power to change things.

William F. Morris IV is a member of the Harvard College Class of 2017 and is a joint concentrator in history and East Asian Studies.

An Interview with Dr. Anne Hallward

By Val Walker

ABOUT DR. ANNE HALLWARD

Dr. Anne Hallward is the host and founder of Safe Space Radio and a board-certified psychiatrist in Portland, Maine. Anne’s interest in difficult subjects began in her teens, when she noticed how few adults around her seemed to be talking about intimate or difficult subjects. Formerly on the faculty at Harvard Medical School and Cambridge Hospital, she designed and taught courses on death and dying, cultural competence, sexuality, and psychiatric interviewing, and has published on death and dying, cultural bias in medicine, sexuality, and hunger in the Philippines and Bangladesh. Anne is the recipient of the Ulrich B. Jacobsohn Lifetime Achievement Award from the Maine Association of Psychiatric Physicians, the Jeanne Spurlock Social Justice Award from the Association of Women Psychiatrists, and the Exemplary Psychiatrist Award from the National Alliance on Mental Illness (NAMI). She has also been recognized for her work in radio with a Gracie Award for Best Host of a Local Radio Show. Anne speaks internationally on stigma and shame, traumatic silence, and voluntary vulnerability as a form of leadership.

INTRODUCTION: WHY I WANTED TO TALK WITH ANNE

Could there be anything lonelier than not being able to talk about something terribly difficult—something that no one feels safe talking about? One of the greatest causes of social isolation is carrying the burden of stigma, shame or silence. We need safe spaces, or safe people, for sharing what is keeping us isolated and ashamed. Safe spaces are essential to breaking through the walls of isolation. I’d heard of Safe Space Radio in the years I’d lived in Maine yet had never listened to it until I moved to Boston a few years ago. Anne Hallward, a psychiatrist, was the host, so I’d wrongly assumed it was for issues about mental illness until I recently discovered it’s for talking about anything that’s hard to talk about.

The first thing I saw on Anne’s website for Safe Space Radio says it all: The show about the subjects we'd struggle with less if we could talk about them more. Heartened after reading her engagingly informative website and listening to a podcast, I reached out to her, first with an email, and then with a phone call. She graciously answered, and we spoke right away.

I was grateful that Anne could take time for an in-depth conversation about what it takes to create a safe space, and how safe spaces help us break through isolation. Our conversation alone was powerful enough to give me a boost to be more courageous in “going there” with the topics we usually shy away from. After speaking with Anne, I have a new motto: Courage is contagious.

INTERVIEW WITH DR. ANNE HALLWARD

Val: Since launching Safe Space Radio in 2008, you've interviewed hundreds of guests. Though you’ve covered a wide range of compelling topics, has there been a common, prevailing message from all your guests through the years?

Anne: Yes, there is a common message. People have a wish to turn their struggles into a gift for others. They give voice to hidden and silenced stories in order to help others. We started out with a focus on reducing the stigma of mental illness, so I talked with many people who had struggled with depression,  anxiety, or addiction.  Each guest wanted to share their story because they didn’t want others to feel as alone as they had.  They wanted to help to reduce shame and stigma.  Soon we began to include a much wider range of topics including homophobia, racism, sexuality and death and dying, and each guest brought the hope that the story of their struggle could be freeing to others.

Val: Because we all have a sense of what a safe space means, I would love to know what safety means to you.

Anne: I used to think that safety referred to the absence of physical threat. But now I think of it more internally, as the feeling of being able to be fully oneself. A common threat to a sense of safety is shame, and the forces, both internal and external, that tell us that we are not good enough.

So, safety begins inside ourselves and then extends to our personal relationships, our communities, our culture, and our nation.

Safety means being able to reveal our whole selves to each other and that entails two important things: feeling able to share our vulnerability as well as our strengths. The invisibility of either side is painful, so being safe means we are free to express both parts of ourselves. For example, when thinking of refugees, we often only see their suffering and don’t see their gifts. They had to flee their country, arriving here as people of color, needing help. The lens of a stereotype can blind us to their extraordinary gifts. For women, and people of color, and those with disabilities and other marginalized identities, safety is not only about honoring difference and vulnerability, it is about seeing and respecting strength.

Sharing our vulnerabilities as well as our gifts also applies to the topic of asking for help. I’ve learned from my guests that we avoid asking for help because we are afraid that our needs will define us. We fear that people will only know us through our needs or vulnerabilities. Indeed, if either our gifts or our vulnerabilities are invisible, it’s very painful. If I trust that you can hold both sides of me in your mind, and we can fully know each other—then that’s what safety means.

Val: I’ve never thought of safety in that way—to be able to show our vulnerabilities as well as our gifts. So, when you have a guest on your show sharing a painful ordeal in her life that was stigmatized and shamed, her strengths still shine through.

But, speaking of stigma, can we ever get rid of it?

Anne: Erving Goffman (a well-known sociologist) says, “Stigma is a sense of spoiled identity that you cannot wash off.” That’s why we need to share our strengths at the same time we share our vulnerabilities, so the needs don’t end up defining us in a stigmatized way. We need to see each person as whole. Safe Space Radio is one public health approach to fostering greater empathy and understanding in order to reduce stigma. As the famous gay activist, Harvey Milk, once said, “This is how the revolution will happen, one lonely teenager at a time.” Each time someone dares to come forward publicly with a silenced story, the culture shifts incrementally.

Val: Your message is powerful. But what if we are socially isolated and don’t have a safe person to turn to? To confide in?

Anne: Therapy has a tremendous value here. Many of us have had painful experiences of trying to share our vulnerability with someone, and feeling judged or rejected, so we might be understandably afraid to make ourselves vulnerable again and could benefit from a therapist with whom we can practice being vulnerable. Support groups are also spaces to practice being vulnerable. If there are no support groups that you feel you can belong to, then you could start your own. For example, Alyson Thompson, a biracial woman in St. Louis was struggling with feeling left out, isolated and feeling like there was nowhere she belonged.  She created a monthly meet up group through Facebook, called “Mixed Feelings” which has attracted a large group of other biracial folks in her area.

Val: That’s a great name for her group. Facebook was an ideal way for Alyson to launch her group. But looking at social media overall, do you think it decreases social isolation or increases it?

Anne: Social media can go both ways. It can bring people together (as it did for Alyson), but it also can be isolating because comparing ourselves to others can be a source of great loneliness. Research on social media is not my area of expertise, but social media seems to perpetuate “in your face” comparing of ourselves with others which can make us feel inadequate and alone.

Val: What inspired you to start Safe Space Radio?

Anne: From a young age, I’ve always been hungry to talk about the things that weren’t named--topics that were avoided and kept secret. When I was in medical school doing my pediatric rotation, I watched children being held down while tubes were being put in them, and watching their distress really troubled me. Of course, these procedures were necessary and life-saving, and were done with the best intentions, but it still troubled me, and I wanted to find out more. I began doing research on this topic, as well as research with my own medical records from my childhood.

I made a discovery. I found out that I was hospitalized for a serious infection as a toddler of 18 months and isolated for 10 days on an infectious disease unit. My mother had just given birth to my younger sister and was not allowed to visit me for those 10 days. This was a traumatic experience for me, and I had many nightmares throughout my childhood. Yet no one ever spoke about this. Childhood medical traumas like these are often unrecognized, because the intention of the doctor is to help the child. But from the perspective of the child, the experience may feel akin to assault.

But thank goodness for my medical records, and for medical school that uncovered what had happened to me! I felt a great sense of relief that my early experiences could be named. And I felt a deep passion to humanize our patient experiences by sharing our stories. I now ask new patients about medical trauma whenever I take a trauma history, and this has brought up so many stories of suffering that the person hadn’t fully understood or recognized as being legitimate trauma. I began a research project by interviewing women with a history of childhood medical procedures, measuring the long-term psychological consequences. The surprise to me was how grateful they each were to have their struggles validated, and how eager they were to let me use their stories to try to change and humanize medical practice. The experience of living with the shame of a silenced story, then discovering the power of telling it for my own healing and the healing of others inspired me to begin Safe Space Radio.

Val: That is an amazing story, Anne. It must have been so frightening at 18 months old to be isolated in a hospital room, separated from your mother among strange people in white coats doing painful procedures. It’s so important to tell this story.

Anne: I would like to share something I learned from guests on my show about what it takes to tell our stories. I used to think my role as the host was to create a really safe space so my guests could tell their most courageous story. But over the years, I’ve learned that I had it backwards; it was their courage that creates that safety for others and for our listeners. Where there is safety, there is someone who has had the generosity to make it so through their own courage.

When I was interviewing Ebrahim Rasool of the Truth and Reconciliation Commission of South Africa, he told me a story about the role that psychiatrists can play in fostering courage. He said people who had been tortured were offered an opportunity to see a psychiatrist before they gave their testimony to the commission. The role of the psychiatrist was to foster their courage, to help them tell their story and give voice to their silenced trauma.  He called this the work of “en-couragement.”  He told me that we should always think of the word en-courage as having a hyphen. He taught me that hearing the stories of others and being taken seriously when we dare to speak foster our courage. Courage is contagious. Learning about the meaning of en-couragement transformed my work as a clinician. An important part of my role as a psychiatrist is to foster courage.

Val: It rings so true when you say courage is contagious. We can foster courage in each other by telling our stories. That’s why Safe Space Radio is so powerful. I’m wondering what topics you will be covering this fall? Any new initiatives?

Anne: We are now in conversations with WBUR to be our distribution partner to NPR stations nationwide. We are creating a 4-part series that covers topics that are hard to talk about. The first show is called Apologies. What do we need to make our apologies truly healing? The second show is Asking for Help. We often underestimate people’s willingness to help and miss opportunities to be supported by others. Our third show is called Loneliness. How can we reduce the stigma and shame about loneliness? And finally, the fourth topic is Talking to Kids about Race and Racism. White people tend to feel awkward about this topic. How can we find useful ways to help kids understand and begin to address the disparities they see around them without reinforcing stereotypes?

Val: We could learn so much from courageous conversations about these topics. Anne, you’ve opened my eyes about what a safe space really means and about how our stories foster courage in ourselves and one another. People like you encourage us to be brave and to speak about the unspeakable things.

Thanks so much for your time today.

Anne: Thank you. I enjoyed our time.

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

Keep up with Val at www.HearteningResources.com