Writing Poetry: A Healing Practice
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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

 

The Gift of a Kidney, Part 2: Giving

By Genevieve Hammond

 

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

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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.

The Gift of a Kidney, Part 1: Receiving

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.

 

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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.

The Power of Love and Positivity: A Fourth of July Trauma, One Year Later
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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.