Monday, February 26—exactly three weeks before Julie died—is a day that will always haunt me. As she became ever sicker, Julie was prescribed a dizzying array of pain medications, and during the weekend before that day it was clear to me for the first time that Julie had become somewhat incoherent. Seeing this shook me deeply, not just because I finally understood the horrifying truth that her life was almost over, but because no matter how much her body had betrayed her or how brutal a particular treatment might have been, the power of her mind had until then been entirely undiminished. Seeing Julie struggle to figure out what day it was, watching her fumble with names, hearing her speak in a whispery voice that was so profoundly unlike hers—those things were, in themselves, utterly devastating. I tried to squelch the panic rising in me, and by searching her phone I was able to figure out that Julie had an appointment scheduled with her palliative care team at Memorial Sloan Kettering for that very afternoon.
By the time we got to the hospital, Julie had rallied and was her normal self, and we sat together in the small room at MSK and waited to see Dr. R.S., the head of her pain management team. As a palliative oncologist, Dr. R.S. encounters an emergency in every room he enters. And yet he is a man who radiates goodness without fail. Taking me aside in the hall, he gently told me that it was “a matter of weeks, not months.” It turned out that he had just said the same thing to Julie, and when I walked back into the room where she was still quietly perched on the examination table, she and I locked eyes in a way that I will never forget. With that single look and without a word, we both knew that it was over.
Dr. R.S. and his team sent Julie directly to the hospital for what was to be the final time. I remember how she wept in the examination room, how she said she wanted to go home to be with the girls, Chipper, and me. Julie didn’t cry easily, God knows, and so I saw it as my main objective at that point just to get her home, no matter what it took. She had planned this part of her illness meticulously, and her plan did not include being hooked up to machines in a hospital. She wanted to die here, at home, in this room.
But first, her oncologist and palliative care team had to get her pain under control and assess her quickly changing condition, to determine how best to make sure that her last days were tolerable without the intravenous medications that only a hospital setting could afford her. With no time to waste, the doctor told us, very bluntly: Get the home hospice team in place, quickly. Make final preparations, now. It was time.
The morning after her hospitalization, Julie was foggy from the opioids, which meant that she was functioning merely at a normal adult level of cognition. And she was tearful, we both were, as it became clear to us that the end that we had been contemplating and fighting against and surrendering to for close to five agonizing years was now upon us. “How can I die?” she asked searchingly. “How can I be dying?” She repeated the questions over and over that morning, between sobs. The words in those questions took on every conceivable meaning—they were both procedural and philosophical. How can this be happening to me? she seemed to be asking. And, how does one go about dying, in the practical sense? How do I do this? They were, of course, thoroughly logical and reasonable questions, very Julie questions to ask, and at that moment the only questions left to consider. Because, of course, Julie had already seen to everything else.
She had taken care of every last detail for me and the girls, everything except: How were we supposed to go on living without her?
Well, from where I sit in this place where she lived so vividly, I can say that there is no good answer to that question. And I suspect that there never will be.
One of the things I most want you to know is that Julie died just as she wanted to die. She was surrounded by the people she loved most in the world—her parents; her sister, Lyna; brother, Mau; beloved cousins Nancy and Caroline; my parents and sisters. And, of course, Mia, Isabelle, and me. One week before the end, on the evening of March 12, we invited people from every stage of her life to our home and held a vigil, just as she’d asked. She lay on the couch in the living room as Mother Kate from our church led the room in prayers and moments of meditation, and one by one, the people who had gathered around her told stories of Julie’s life—of her life as a college student, or as an intrepid world traveler, or as a class mom, or as a fellow cancer patient, or as a writer—and we laughed and we cried and we ate and we drank. All except Julie, that is. She had stopped eating, and would never eat again.
During the vigil, the hospice team showed up with her bed, and they discreetly set it up in the room where I now sit. That was the first night Julie would spend in that bed, which marked the night before as the last night we would sleep in the same bed.
To say that I was terrified at what was to come does not convey the depth of my terror, but to say that I also wished fervently for an end to Julie’s suffering—in spite of myself—well, my words are truly inadequate to describe the size of that moment. But those opposite emotions that I felt give you an idea of the confusion that the imminent death of the most important person in your life brings on. When you are as sick as Julie was, deliverance becomes an act of mercy.
* * *
—
Nothing can prepare you for what happens after death.
Numbness initially protects you from the crushing power of forever, and so in the first weeks and even months after Julie left us, there was a jarring lightness to life. All the shoes had dropped, the ceaseless nightmare of terminal disease was over, and the horror of watching the person you most love in all the world suffer terribly abruptly stopped. Five years of frenzy and fear, suddenly gone. To say that it was unexpected and counterintuitive to feel happiness and even moments of real joy as notions of the future for me and Mia and Belle began to creep into my consciousness would be beyond understatement. I was shocked by these feelings, and found myself taking long walks in Fort Greene Park as spring came on, allowing myself to begin to process all of it, really for the first time. Living with the constant emergency of terminal illness doesn’t give you the chance to do that. Instead, you function moment to moment, day to day, maybe week to week. Beyond that, there is no future. And then, suddenly, there was a future, slowly spreading out before us.
At first, this was surprising, and quite a relief. “This isn’t so horrible,” I thought to myself on more than one occasion. And then, just as suddenly, the anesthetic effect of trauma begins to wear off, and the deep pain of permanent loss begins to set in. That point, a couple of months after Julie died, I now recognize as when real grief well and truly began. For a time, I was incapacitated with grief, and a flood of unprocessed emotions, haunted by regret, self-doubt, and an unhealthy dose of demon guilt.
One of the real blessings of my life is that almost every Sunday, I talk to my father for an hour on the phone. I feel very lucky to have his wise counsel. As the full weight of what had happened hit me, I called my dad.
I was being torn apart by the guilt and feelings that I had not done enough for Julie, consumed by a flood of thoughts, not all of them very rational. I found myself relentlessly going back to 2013 in my mind, and looking at pictures of Julie from the spring of that year, just before her diagnosis, marveling at her beauty and youth and vitality, and her unfettered joy and limitless possibility, even as I now knew that inside of her a killer was loose.
I told my dad, “Look I’m really hurting. I think I fucked it up. I think I didn’t do enough to save my wife. I should have been able to see this back in 2010 or 2011, or certainly in 2012. But I didn’t. I failed Julie.”
And my father said, essentially, You think you have that kind of power, do you? The truth is, there was nothing you could have done. You might not ever be able to reconcile that Julie was at the same time young and vital and also doomed—that it was too late, from the start. But for your own sake and the sake of the girls—for Julie’s sake—you’ve got to try.
The die had b
een cast. Julie’s death had been inexorable. Control, an illusion. All else—all the scrambling, the working of the odds, the second, third, and fourth opinions, the clinical trials, the alternative therapies, and on and on—all were just the rituals strewn along the path to the inevitable.
But that—cancer kills—is hardly a revelation. The revelation would come in how Julie responded to her fate. For the little girl born blind, she saw more clearly than any of us. In facing the hard truth of her terminal illness, and never averting her gaze or seeking refuge in fantasy, she turned her life into a lesson for us all in how to live fully, vividly, honestly.
For all my fidelity to the numbers that ended up being so brutally accurate—sitting in Julie’s darkened recovery room after her first surgery in the summer of 2013, poring over the available studies on Stage IV survival rates by the glow of my iPad—I still did not want to believe or concede to those numbers. And for all her belief in the power of the intangibles that had made her whole life possible, Julie’s fidelity was always to the truth, whatever that might be and wherever that might lead. She might have believed a bit in magic, but she never indulged in magical thinking.
And so my father’s advice was a welcome salve at a very hard moment. There was, in the end, nothing that could have been done. Moreover, in the end, the recognition of the inevitable had been an article of faith for Julie, too, and apart from leaving Mia and Isabelle, she harbored absolutely no regrets. In the course of this experience, we resolved together to deal in reality—especially in the face of the cottage industry of denial that exists among some in the “cancer community”—but Julie was the exemplar of reality. In our life together I learned so many lessons from her, but none more so than this: It is in the acceptance of truth that real wisdom and peace come. It is in the acceptance of truth that real living begins. Conversely, avoidance of truth is the denial of life.
Julie had faced more hard truths than anyone I will ever know. More hard truths than in any three lifetimes. So she was very wise indeed, well before her grandmother’s colon cancer came stalking her at the age of thirty-seven. And through her writing, she came to process her own life of struggle and in so doing became empathy itself, providing a vocabulary to an ever-widening community of people living their lives and struggling to face their own hard truths.
Once, in thinking about what it was she most wanted this book to be, she wrote:
To the degree that my book speaks truth about not just the cancer experience but the human experience in general, I want people to be able to find themselves in the writing. And in so doing, I want them to realize that they have never been and will never be alone in their suffering….I want them to find within the rich, twisted, and convoluted details of my life truth and wisdom that will bolster and comfort them through their joys and sorrow, laughter and tears.
And so now I face my own hard truth. That is to a great degree where committing Julie’s legacy to the page, and creating a record of her extraordinary life, comes in. Turning my attention to memorializing her story so that it will live on feels very purposeful, and is a way to engage the grief, conjure the memories, and come to terms with the fact that although she is gone, she will always live on, here, in the eternal present, taking me and her daughters, and you, too, by the hand, and telling you the most remarkable story. This becomes all the more important as the days and years and decades inevitably accumulate, life sweeps us all further down the river, and memory erodes. When I think about that happening, I am even more grateful for Julie’s writing.
In the spirit of that writing, and so that others who are going through ordeals similar to ours might not feel so alone in their suffering, before I finish here I feel that I must mention the toll that disease takes on even the best relationships. As deeply connected and profoundly committed as Julie and I were for the entirety of our time together, as death approached our paths diverged sharply. As she contemplated death and what comes next, I contemplated our daughters and the devastating prospect of life without and beyond Julie. The growing distance had the effect of making us seem alien to each other, like strangers flailing in the face of eternity. We became the focus of each other’s despair. It was often unbearable, and like many couples similarly trapped, we fought terribly and repeatedly. It got so bad that each of us threatened to leave at various times. Divorce was mentioned, brutal things were said. Such is the hurricane of terminal disease—it destroys not only the afflicted, but everyone and everything in its path as well.
But we didn’t leave. We didn’t divorce. Pulling back from such a brink when it feels that all in your life is spinning out of control requires an effort that can seem beyond you. But that is what Julie and I did. We faced that hard truth together, reaffirmed the reasons that had brought us together in the first place, and said all the things to each other that needed to be said.
The last months of her life and of our life together were lived in tender, loving appreciation. We held hands, we watched our favorite television shows, we fell asleep on the couch together. We did the thing that I most enjoyed in this world, which was simply spending time with her, however I could.
As I mentioned at the outset, I am Julie’s opposite in that I am not a public person. My reticence in that regard extends to Mia and Isabelle, too. They are such lovely young women, curious and kind, each possessed of Julie’s intellect and empathy. I will always try my best to live up to Julie’s standards for them, and to impart Julie’s love to them. They are coping with her absence in understandable and different ways. And on May 5, at our church in Brooklyn, each bravely got up before a roomful of people who had assembled for Julie’s memorial service and performed music for their mother—Mia on violin and Belle on piano.
And somewhere, Julie was listening, her eyes closed tightly, all the better to hear.
I love you to eternity, sweetheart. Until I see you again.
June 2018
This book is dedicated to Josh, Mia, and Isabelle—the loves of my life
to Lyna, Nancy, and Caroline—my beloved sisterhood
to my parents, 葉世福 and 林桂英, who did their best for me
and to my brother Mau, who walked me safely down the street
Acknowledgments
We will forever be grateful to many people, both for taking such loving care of Julie’s story and for taking such loving care of Julie and our family during the most trying times imaginable.
Thank you to Mark Warren of Random House, who was Julie’s editor but more important was Julie’s friend. Mark saw the distinctive power in Julie’s writing, and their long conversations gave this book its final shape. Thanks also to Julie’s fierce advocate, her literary agent, David Granger, who believed in this book before we knew a book was possible, and had the grace to remove his shoes as he entered our apartment (Julie couldn’t get over that). And, very importantly, sincere thanks to everyone at Random House, Julie’s literary home—in particular Andy Ward and the extraordinary marketing and publicity team, to whom Julie was very close—Leigh Marchant, Maria Braeckel, Michelle Jasmine, and Andrea DeWerd—and to production editor Evan Camfield, who took such wonderful care with Julie’s writing.
There are too many individuals to name, and so we do hope that the extraordinarily talented and dedicated medical professionals who treated and cared for Julie—from her first surgery at UCLA to NYU and Memorial Sloan Kettering—know just how grateful we are and will always be to them. We simply could not have asked for kinder or more patient or more intelligent attention, not just to Julie but to our whole family.
We would like to thank Mother Kate and the entire community at St. Ann & the Holy Trinity Church for taking us in when we most needed it.
Julie felt and Josh feels such deep gratitude for the law firm where Julie worked—Cleary Gottlieb Steen & Hamilton—and to Josh’s firm as well—Akin Gump Strauss Hauer & Feld. After Julie’s diagnosis in 2013, she didn�
��t work another day, but still Cleary kept her office for her, and her assistant remained dedicated to her for the rest of her life. Additionally, early on, Cleary held a fundraiser in Julie’s name, the proceeds of which went to colorectal cancer research. Julie’s diagnosis came just as Josh had made partner, which in and of itself can be a pretty stressful time. But Akin Gump made it clear to our family that what mattered most was Julie’s health, Mia and Isabelle’s well-being, and our collective peace of mind. We cannot say enough to thank these two firms for their kindness and support.
We cannot adequately express our thanks to the small town that lives in our Brooklyn apartment building—from perfectly timed covered dishes that kept us fed to perfectly timed offers of babysitting to just the wonderful companionship of the best neighbors a family could ask for, we are beyond grateful. Mia, Isabelle, and Josh will do their best to reciprocate the neighborliness.
We would like to thank Josh’s mom and Julie’s mother-in-law, Beck Williams, for her selfless and tireless service to Julie and the girls during the hardest moments. She would leave home for weeks at a stretch to come stay in Brooklyn to take Julie to chemotherapy, or just to keep her company. For that, we will be forever grateful.
We would be remiss if we did not thank perhaps the most important people to this enterprise: Julie’s readers. This book represents a dream come true for Julie, and the dream would have been impossible without you. Whether you read Julie’s blog or heard of her story elsewhere and have come to her writing here for the first time: Thank you for being here. You have our deepest gratitude. May her memory live on through all of us.
The Unwinding of the Miracle Page 31