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

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

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

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

Waves of Life

Snow follows a day of sun;

Cold follows a day of warmth;

Pain follows a day of joy.

I have learned that I will never know

what the next day will hold,

but I am no longer afraid of this uncertainty.

Changes are the waves of life—

we will not know their strength,

or how hard the waves will hit the beach,

but they will flow in each day and night,

ever changing, ever free.

If we can learn one vital truth,

we will be set free:

Life constantly changes but we are never alone,

the earth is under us,

the waves break before us,

the moon shines upon us,

family and friends comfort us,

and the one who has left us,

encircles us with love.

© Facing Into the Wind by Faith Fuller Wilcox

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.

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.

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”

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.

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

By Val Walker

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

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

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

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

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

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

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

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

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

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

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

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

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

• People build new friendships.

• They advocate for change in their own towns.

• They work to change laws.

• They gather together in prevention activities.

• They support the newest members of the group.

• They find their voice again.

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

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

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

Recommended Resources

• Robyn’s Foundation, The Sun Will Rise

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

• GRASP: Grief Recovery After a Substance Passing

• Hand Delivered Hope, Boston 

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

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

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

Keep up with Val at www.HearteningResources.com

An Interview with Robyn Houston-Bean, Founder, The Sun Will Rise Foundation

By Val Walker

INTRODUCTION

Robyn Houston-Bean lives in Braintree, MA, and manages an insurance agency for four days a week. She is married to John Bean, a sheet metal worker, and has a daughter, Olivia, age 25, and a son, Jake, age 21. Amazingly, around her demanding business and the needs of her family, Robyn runs a dynamic, fast-growing organization, The Sun Will Rise, dedicated to serving families affected by the Opioid epidemic.

Three years ago, Robyn’s oldest son, Nick, died of an opioid overdose. Just one year after his death, finding a way to channel her grief, Robyn began building her foundation in honor of her son, and soon engaged hundreds of families with support groups, inspirational talks, and fundraising events.

I wanted to understand how Robyn was able to express her grief through community activism, and more deeply, to explore how she found comfort, understanding and support for her grief.

One grey morning in February, I enjoyed a rich, two-hour interview with Robyn. Her candid insights about how grief isolated her, and what it took to break through isolation and turn to others was a powerful story in itself. She didn’t hold back from “going there” to describe her first devasting weeks after Nick’s death. Her story is so compelling and important that I have written her interview in two parts. Part One is about how she broke out of the isolation of her grief. Part Two is about her healing adventure of developing her foundation, The Sun Will Rise.

Right at the beginning of my conversation, Robyn made one thing quite clear: We don’t ever “get over” nor completely recover from our child’s death, but hopefully, we learn to live with loss—and if possible, find a sense of purpose to guide our grief. For Robyn and many who support her work, community activism for facing the opioid epidemic has given devasted people a sense of meaning, purpose and belonging.

INTERVIEW

Part One: Breaking Through the Isolation of Grief

Robyn didn’t hold back from “going there” to describe her first devasting weeks after Nick’s death.

Val:  Can you describe the early stages of your grief—starting at the point you think it’s best to start?

Robyn: First, I should tell you about the night before he died.  I’ll never forget the night before Nick overdosed. Strangely, out of the blue, before Nick came home from work, my daughter, Olivia, said, “I have a bad feeling about him.” As soon as he got home, he walked straight to the fridge. When Nick put his face into the fridge I made him look at me because of my daughter’s feeling that something didn't seem right. I put both my hands on the sides of his face to make him look at me.

I asked, "Are you okay?" He told me, "I'm just tired-- I'm going to bed, why?" I answered, "Because I love you, and don't want anything to happen to you.”

He replied, "I love you too. I'm tired and going to bed. I have to be up for an early shift." It still haunts me that I didn't know something horrible was going to happen that night.

The next morning as I was headed out to the gym for my usual workout, I was surprised to see Nick’s car in the driveway, as he usually drove to work on the early shift. I wondered, why was Nick’s car still there? I called upstairs towards his room, “Hey Nick, are you up there?” It seemed so weird he was not answering as he was such an early morning kind of guy. I went to his room and found him lying motionless in his bed, cold and blue. I tried to revive him with Narcan but I could tell it was too late. I screamed a horrible, guttural sound—a sound I have never made in my life. Still, my daughter called 911. The EMT and police came and took him to the hospital, but he was gone.

Val: What a horrible shock—to be the one to find him dead right at home. Before his death, had there been any signs that you sensed Nick was using again or hiding anything?

Robyn: Not really. It was such a shock, and there really are no words to describe this kind of shock. He was doing so well and so proud of his new job as an Emergency Services Technician. He had just finished his certification and was feeling a real sense of purpose and mission in his life. He told me almost every day how he loved his work, and loved being so helpful for others, saving lives. But…perhaps, he saw too many awful things during emergencies and rescues, and maybe some things had triggered him. I will never really know.

Val: What were those first weeks or months like for you?

Robyn: Everything just stopped. I just stopped. All I could do was sit on the couch. I had always been a super-energetic person who loved fitness competitions and worked hard to be the best at anything I wanted to do. I was once the unstoppable, super-achieving woman who never looked back.

But when Nick died, I didn’t know how to be me anymore.

Unfortunately, my husband and youngest son didn’t know how to relate to this person I had become—this woman who just stopped everything. And my friends tried to text me and chat to cheer me up. But I couldn’t do chit chat anymore. My daughter could understand somewhat, but she was my daughter and was grieving in her own way. For me to grieve, I needed to have some of Nick’s things around me on the counter by the kitchen—his little harmonica, his coin collection, little pins he wore, his pocket knives, but this bothered my husband to the degree that this caused arguments. He didn’t want to talk about the death of our son or look at Nick’s stuff because he just wanted to push the memories away to get through the day. I was the total opposite from him in how I grieved. There was an awful tension between us. I felt lonely with my grief because no one in my family could understand how I was grieving as a mother. And I was anxious that my friends were trying to fix me and get me to socialize or get back to the gym. No one seemed to accept that the person I was before Nick’s death—that once unstoppable Robyn-- no longer existed.

Val: It sounds so isolating for you. No one in your family is the right person to talk to, and your friends don’t seem to understand how to relate anymore, even though they are trying. What in the world did you do?

Robyn: I had a gut feeling that a grief counselor might help me. For a referral, I asked a pediatrician I liked for years (who had treated my kids when they were younger.) He gave me the name of an excellent therapist, and fortunately I felt comfortable with her.  I opened up and shared everything with her. I was especially concerned about how to cope with my husband and children who weren’t grieving in the ways I was.  A few weeks later, I asked my husband and kids to join for family therapy. They weren’t too thrilled about it, but they cared enough to go for a few sessions. I was relieved this therapy resulted in finding a solution about how I could have Nick’s things around me without this upsetting my husband. We decided to put Nick’s little things in a box on the counter, so when I wanted to connect with Nick I could just get his things out of the box and then put them away. Believe it or not, this simple solution made a huge difference for me and my husband!

Val: Wow. I love what you just said. And what a perfect solution to use the box for Nick’s things.

Robyn: Eventually my daughter, Olivia, started going into the box, getting out his harmonica and coin collection, and sharing memories about Nick with me. But still…I had a long way to go to get used to my new normal without Nick in my life.  Indeed, we all had new normals without Nick in our lives.

But one day a thoughtful friend connected me on Facebook with a friend of his named Carole who had recently lost her child to an overdose. Very soon we were talking on the phone. We could “go there” with the horrible things that no one else could talk about. For our first face-to-face meeting, Carole met me at the cemetery where both of our kids were buried. Can you believe it—both of our kids were in the same cemetery lying near each other! We sat on the grass and cried together. We made a pact with each other that we would “take care of our kids” every day by going to the cemetery every day. We agreed that no one could rob us of our grief and the time we needed to “take care of our kids.”

Soon another friend connected me to other grieving parents through Facebook.  In a few months we found out about an organization called Hand Delivered Hope, a group of concerned citizens affected by the opioid epidemic. This group provided street outreach to people who have been impacted, meeting their basic needs so that recovery was possible. Hand Delivered Hope had organized a benefit event where participants were bringing bags of comfort items. My sister and I attended this event, and to my surprise, I made friends easily with other parents and family members who had lost loved ones or had loved ones still struggling. I didn’t feel judged or that I had to censor myself from talking about messy and awful topics related to addiction. They busted through the stigma of addiction as I was accepted and welcomed. They asked about Nick, and how I was coping with my grief. They shared their own stories about broken relationships and how their kids were destitute, misguided, broken, or had died through an overdose. It was a safe place to talk honestly as a group, and I immediately realized how healing it was to have this open, warm environment where I could be a grieving mother—rather than trying to be that unstoppable, super-achiever person I used to be. This experience of feeling so welcome with my grief was a big turning point for me.

I had a huge revelation, and it all came down to this: My child was not here anymore, but I could help someone else’s child. And I could help someone else who was grieving to feel warmth and acceptance. Braintree needed more support groups, fundraising events, educational events, and resource development. Soon after my revelation, one thing led to another. I met another wonderful friend named Rhonda who was involved with a grief support group at GRASP in Brighton. She told me there was no grief support group on the south shore of Massachusetts. And things started moving from there—it was my calling. I believed I was the one to do this.

Val: Thankfully, you found a group where you didn’t have to hide your grief, and that inspired you to start your own support groups. What about your older friends? Did they fade away? Or were you able to maintain those friendships alongside the new friends you were making?

Robyn:  Yes, I have been able to keep most of my old friends. I finally managed to figure out how I can fit my old and new friends in my life. First of all, these two groups of friends are two separate groups. I call my old friends my “before” friends (before Nick’s death) and my new friends my “after” friends. The “after” friends definitely “get me” more easily and I can talk about the good, the bad and ugly stuff with them. However, I truly love my old friends and I tend to do more fun and lively stuff with them—which is just fine for short periods. I don’t want to be a “downer” with my “before” friends. My “before” friends still want to see me laugh and socialize, and I’m able to do that on some occasions. I must admit they can still make me laugh. I am glad to have both groups in my life. But I couldn’t live without my “after” friends.

Val:   Robyn, what a creative way to make room for all your friends in your life. That also sounds like a beautiful way to embrace your “before” self with your “after” self.

Robyn: Thank you for saying that. It’s all taken a long time.

This concludes Part One of my conversation with Robyn. In my next post on the Health Story Collaborative, Robyn will share her healing journey with developing The Sun Will Rise Foundation. 

• Recommended Resources

• Robyn’s Foundation, The Sun Will Rise

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

• GRASP: Grief Recovery After a Substance Passing

• Hand Delivered Hope, Boston 

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

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

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

Keep up with Val at www.HearteningResources.com

In 2010, Kate, a single mom from New Hampshire, gave birth to Brook, a healthy baby girl.

Brook seemed to be developing normally and reaching all of her milestones — learning how to sit up and roll over, grasping at toys–until she was 6 months of age, at which point she started to regress. She lost skills she had already learned, and gradually, Kate noticed other things. Brook didn’t seem to respond to her name, she would fixate on lights and just stare and stare, she started dropping toys, unable to hold onto them. Eventually, after a long medical work up, Brook was diagnosed with Tay Sachs disease in 2012, and Kate was told that her daughter would most likely not live past her fourth birthday.

Today, Brook, is three years old and requires constant care. She is blind. She cannot swallow and is fed through a feeding tube. She is having near constant seizures. And she continues to deteriorate. Brook’s older brother Jake, born to a different father and now 9 years old does not suffer from the disorder.

Listen above to Kate’s story of living with and caring for her terminally ill daughter.

Tay Sachs is a fatal genetic disorder. A child is born with Tay Sachs when he or she inherits two damaged copies of the HEXA gene on chromosome 15 (one from each parent), which results in a deficiency of the Hexosaminidase A enzyme and the subsequent build up of a damaging fatty substance in brain cells. The result is a relentess, progressive loss of physical and mental functioning and eventually, death.  A person with one damaged gene and one normal gene will become a carrier with no clinical symptoms of the disease. If two carriers have children together, there is a 25% chance of giving birth to an affected child with each pregnancy.

Tay Sachs, a rare disease with an incidence of approximately 1 in 320,000 in the general population, occurs with increased frequency in certain populations, including Ashkenazi Jews, French Canadians, and Cajuns (from Louisiana). In these groups, approximately 1 in 30 individuals is a carrier, and 1 in 3,500 children will be born with the disease.

Kate, who is of French Canadian descent, had no idea she was a carrier before Brook’s diagnosis. She knew nothing about Tay Sachs, and was unaware that French Canadians are at increased risk. Though pre-conception counseling is available, Kate didn’t know this at the time, and if she had, she might have assumed that it wasn’t relevant to her.

How does a mother manage life when her child is dying? She mothers. Kate spends most of every day in her living room with Brook, an oxygen machine hissing in the background, surrounded by pill bottles, suctioning her daughter’s secretions, moistening her lips, and giving her medication to temper her seizures. Kate’s primary goal is to keep Brook as comfortable as possible in her last days, and she works very hard to achieve this. “So many people for so long would say, ‘You’re so amazing, I don’t know how you do this; This is incredible, how do you manage this,’” Kate says “I would look at them and think, ‘This is my daughter, how can I not do this?’” And every day she tries to spend as much time as possible with her older son, Jake, and to support him through the loss of his sister the best she can.

Story first appeared on WBUR’s CommonHealth blog on November 8, 2013: http://commonhealth.wbur.org/2013/11/extreme-mothering-child-tay-sachs

Photograph: Mary White photography

Resources:

http://www.mayoclinic.org/tay-sachs-disease/treatment.html

http://www.ntsad.org/

Today I attended the funeral of my friend and neighbor of 35 years, Ms. Enid.

No one knew her exact age except for her best friend Ruby, another neighbor here at the Roycroft, our six-storey art deco apartment building that we all lived in.

Enid was distinguished and healthy, but dementia grabbed her sensibilities in her last year. Because she was single and had no family, she was sent to a nursing home far away from the Roycroft and her friends, a good forty-minutes drive on the highway.

Her death has had a huge impact on me. I miss her tremendously, of course, and her passing has made me reflect upon my own situation. You see, I’m single too. Even though I have my will in place and am relatively healthy (despite the Canadian health system), financially stable, and of sound mind and soul, I’m not sure that my end-of-life wishes will be carried out. Who will be my advocate?

I’ve selected two executors, but in reality, in the absence of caring family or friends, I worry that no one monitors the executor. What happens if there’s no one left alive to watch over you and your belongings? Can the executor do anything he/she pleases with their client’s estate, body, burial, and belongings? It seems the courts only step in if someone blows the whistle.

Enid’s funeral service seemed designed more to please the needs of her estate lawyer than to please her. When I asked him where Enid wanted to be buried, he admitted that he had never asked her. Her ashes were to be shipped two hours away to a cemetery where he believed her parents are buried. I asked him if Enid wanted to be buried with her parents. He said he hadn’t asked her. How could that happen, I thought?

Interestingly, Enid did have the wherewithal to state that her obituary NOT print her age. Good for you, Enid. Age should be irrelevant, and besides, it’s no one’s business.

These days when we hear a person’s age, assumptions form. An older person is rarely thought of as being or having ever been vital, skilled or talented, and yet, many were and are. While other cultures honor and respect their elderly population, North America seems to dismiss the thought that a senior can be captivating, attractive and interesting. Adding insult to injury, seniors are often referred to as ‘cute’. A puppy is cute. A baby is cute (sometimes).

Unfortunately, after a certain age, people become a member of the invisible race. (I should keep that in mind the next time I want to steal something.)

Enid's memorial service was different than those I’ve been to, particularly because she had no living relatives, no one to eulogize her life from personal experience, and no one to shed tears the way primary mourners do. I cried plenty when I received the news of her death, but somehow that's not the same thing. Or is it? Enid’s friends didn’t want to speak at her service, so I was asked to say something.

I spoke about being Enid’s neighbor for over three decades and what she meant to me. I spoke about the night we spent together one New Year’s Eve, sharing stories while she polished her late mother's silverware, an annual ritual. I spoke about the answer she gave me when asked how she maintained such a close friendship with Ruby for over 60 years.

“Two things, Marla…boundaries and privacy.”

And I spoke about the best advice she ever gave me: “Take a walk every day, and have a goal for your destination. It could be to buy an apple, or the newspaper. Most importantly Marla, get out and move.”

As I looked out into the faces of Enid’s few mourners--just eleven neighbors from The Roycroft, her cleaning lady, and our superintendent--I thought about the sense of community we had created, complete with love, hate, and disparity.

When Enid’s memorial concluded and we crowded around her boxed ashes, and fragile-framed portrait, her lawyer asked a painful question:

“Does anyone want Enid’s photographs?”

Enid's photographs were respectfully scattered about the memorial room as if it was a staged set. We didn’t know who the people in the photos were or their importance to Enid. But there they sat, and what to do with them now was our dilemma. These photos may have been of her parents, or treasured aunts and cousins. We shall never know, now. What we did know was that no one wanted them, not even Ruby (who is also single with no family and 95 years young). Perhaps for Ruby it is just too painful a reminder of what she will miss. I wonder how long she will last without Enid, her best friend, to walk with and talk with and share meals with, especially on Christmas Eve and New Year’s Day.

An 8x10” portrait of a younger Enid now sits in our lobby, with a battery-operated votive candle beside it. Soon it will be removed, tossed into the trash and driven to the city dump where it too, will become ashes.

Questions swirl around in my mind.

Is this how the single population in our society end up? Our once cherished photographs recording our life, loves and lineage all to be tossed into the garbage?

What becomes of their worth, their knowledge, and their very existence?

Deep in my heart, I know that my photos, articles, and recordings of my careers will also end up in the city dump along with the other single people’s tangible memories. They are nobody’s keepsakes but mine.

For now, I’m going to dust off my framed articles of me as standup comic, inspirational speaker, and jazz singer, as well as my photo collection of family members and dogs. I’ll try not to think about what will become of them when I am gone.

A common epitaph is: “You Will Live in Our Hearts Forever.” Another popular one is “Gone, but not forgotten.” I’m starting a new one: “Ashes to Ash, Tossed in the Trash.”

I’ve learned a lot from Enid’s death. We must all legally prepare for our inevitable passing, and get our specific needs, desires and end-of-life arrangements down on paper, while we are mentally able to do so. And we should have someone outside of the executor’s circle making sure our wishes are respected. Some find it morbid to discuss such matters. The truth is, it’s imperative. I’m feeling a bit low today and I know what Enid would tell me. She’d say “Marla, go for a walk. Pick a goal for your destination. Buy an apple, a newspaper, it really doesn’t matter what. Just get moving. It will make you feel better.”

I think she’s right.

Marla Lukofsky is an Inspirational Speaker, Comedian, Singer, Cancer Survivor and Writer. Her stories have been published in various medical journals including Cell2Soul. With two TEDx Talks to her credit, Marla continues to share her experiences in the hopes of helping others.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

To read more, click here.

Sara and Kerry met as students at Bates College in 2001. They were together for eight years, and planned to get married in August 2010. Last June, just two months before the wedding, Kerry committed suicide using a gun he purchased legally that same day. He was 27 years old. This was a complete surprise to everyone who knew him, and obviously devastating.

At the time, both Sara and Kerry were in graduate school in the Northwest: Sara was in Seattle, Washington, getting a Ph.D. in Molecular Biology, and Kerry was in Eugene, Oregon attending law school and pursuing a concurrent masters degree in conflict and dispute resolution. They completed their studies late last spring, full of energy, ambition and promise, and were planning to move back east before the wedding, for their careers and to be closer to Sara’s family in Maine. For Kerry, the move never happened.

Kerry had been plagued by chronic pain in his arms, back, and legs for over a year. As a student, he did not have cohesive medical care, which meant he saw multiple providers and had to tell his story over and over again. The cause of Kerry’s pain was never determined. None of his physicians had followed him over time, and none knew him well as a result. Kerry was not one to complain about pain, and indeed, until he developed these debilitating conditions, he had been an athlete in excellent physical health. At times, given the lack of a clear diagnosis, he felt that the legitimacy of his pain was called into question. Ultimately, he was left with a sense of desperation and hopelessness.

Suicide is a major public health problem. According to 2007 data, it is the 11th leading cause of death overall and 4th leading cause of death for adults 18 to 65 in the United States. Everyday, approximately 90 Americans commit suicide.

What can be done to prevent suicides like Kerry’s? Recently, Sara and Kerry’s father, Dr. Mike Lewiecki, addressed this issue in an article, “Time to Reconsider,” published last month in The Journal of the American Medical Association.

Here, Sara (who is now a post-doctoral fellow in molecular biology at Massachusetts General Hospital) speaks openly about her experience of Kerry’s suicide, and about trying to move forward in the face of such a tragic loss.

Originally published on WBUR Commonhealth Blog, April 28, 2011

Resources:

For information about suicide, visit

http://www.mayoclinic.com/health/suicide/DS01062

http://www.cdc.gov/ViolencePrevention/suicide/

To learn more about suicide prevention and treatments after suicide attempts, visit

http://www.afsp.org/preventing-suicide/treatment

For support after someone you know died by suicide, visit

http://www.supportaftersuicide.org.au/what-to-do/information-for-friends-and-family

1-800-273- 8255 is the 24-hour National Suicide Prevention Lifeline in the United States that is ready to answer calls from anyone in a suicidal or emotional crisis and provide counseling and referrals. For this service in Spanish, call 1-888-628-9454.

http://www.suicidepreventionlifeline.org/