I was very broken by the time I left for college at seventeen, and I would continue to be broken for many years thereafter. I was so angry at the universe. Why me? Why did I have to be the one to be blind? Why did I have to be the one to wear ugly, thick glasses? Everywhere I turned, all I could see was what I couldn’t do. I couldn’t help but also believe that I was defective and deeply flawed. I hated my parents for bringing me into the world and letting me live. I even once hysterically screamed at my father and demanded to know why he had allowed that to happen. Little did I realize how close to home I had hit. Ironically, it was my grandmother who came to calm me. Most of all, I hated myself.
And so even though my romantic self dreamed of you, I never thought I would actually find you or that, if you did exist, you would want me. You’ve often asked me about the boyfriends I had before you, and I always found ways to evade your questions. The reason is there were no boyfriends before you. Sure, there were dalliances and holiday flings, but the guys never stuck around for more than a few weeks. Maybe they couldn’t handle the Williams and Harvard degrees. Maybe my grandmother and parents had been right that no man would want someone as defective as I; it certainly seemed like guys would become exceedingly uncomfortable when they learned of my vision problems. Maybe I believed I wasn’t deserving of love, and that my grandmother and parents had been right all along.
I didn’t engage in any of the “boyfriend-girlfriend nonsense.” No, instead, I put my energies into studying, just like my father wanted me to. But, unwittingly, I also put my energies into fixing what was broken inside me. I packed my bags and left for Williams College, three thousand miles away from home. My dad might have believed that there was no real value in educating a girl and letting me go so far away from home and risking my potential ruin, but he couldn’t resist the allure of the college ranked number 1 in the annual U.S. News & World Report ratings, and since I had earned a full scholarship, he really had no say in what I did. I studied Chinese, the language my mother thought I could never learn because of my vision. My junior year, I studied in China, traveling around the vast country during every break on as little money as possible. After I graduated college, I studied Spanish in Seville for five weeks and backpacked through Europe alone for another five weeks. The summer after my first year in law school, I did my internship in Bangladesh. After I sat for the bar exam, I traveled to Chile and Peru and then Thailand, and went back to Vietnam for the first time in twenty-three years with my parents. After I started working, I had a few more adventures, to South Africa and New Zealand. And right before I met you, I went to Antarctica, after which I could proudly say that I had been to the seven continents by the time I was thirty.
Somewhere in between having my cabin invaded by squawking chickens on the barge sailing down the Yangzi River, and having the door fly off the bus in some dusty western Chinese province, and praying for my life as we wound down the roads that hug the base of the Himalayas, and camping on the Antarctic ice, and sitting in wonder at the mystic beauty of Machu Picchu, I fixed what was broken inside of me. Nothing could have made me confront my limitations as much as traveling the world did. Nothing could have made me more frustrated or hate myself more than standing on the streets of Rome trying to find a place to sleep for the night while struggling with a map and a magnifying glass. And nothing could have made me more proud of myself and love myself and feel such profound gratitude for what I could do and what vision I did have than kayaking through the Antarctic waters. I learned that no one could tell me what I could or couldn’t do, that only I could set my limitations. I learned to appreciate everything that I could do, that indeed even some people with normal vision couldn’t have traveled the world alone as I had. I learned to accept myself as I am, to be patient with and love myself.
And then I met you, when I was ready to meet you, when I felt I was deserving of you. Being with you and falling in love with you was the easiest thing I’ve ever done. It felt so right. You were so smart—my intellectual equal, if not my intellectual superior. You taught me. You challenged me (admittedly sometimes in the most annoying ways). But you know what touched me the most? The way you would wordlessly reach for my hand when we went down a set of stairs, the way you without prompting would start reading a menu to me, the way you happily acted as my driver. You’ve never doubted my abilities. My sister told me that she warned you right before you were about to Skype with my parents to ask them for permission to marry me (she was going to act as the translator) that you had to accept and love me as I am, visual disability and all. That is exactly what you have always done, loved me and accepted me for who I am with all my imperfections.
It isn’t about figuring out how many months after my death would be appropriate. It’s about you. My death will break you. It will shatter you into a million little pieces. But I want you and you alone to fix yourself. I want you to use the opportunity to form an incredible bond with the girls that might not have been possible had I lived. I want you to figure out how to manage the kids and the apartment and your career on your own, as lonely as that may feel sometimes. Please don’t be with a woman because you need a wife or mother for your children. Know that no woman can make this easier. No woman can fix what is broken inside you. I want you to be whole again through your own doing. And only then do I believe you can find a real, healthy love, someone who is deserving and worthy of you and the girls. Who knows? She might even be someone I would have liked.
I love you, sweetheart. Be well. Until we meet again…
Julie
44
The Unwinding of the Miracle
Last year, in May, we were all flying back to New York from Austin. Josh and Mia were in another section and I was entertaining Isabelle, and as we were looking out the window I said, “Belle, wouldn’t it be fun if we could just go outside and sit on the clouds?”
And she said “Mommy, don’t be silly, you’d just fall right through—it’s just air.”
And I said, “Do you really think so, Belle? Because, I mean, don’t angels sit around on clouds?”
She said, “Do you think angels are real, Mommy?”
“I don’t know,” I said. “Maybe…”
And she said, “Do you think that’s what happens after we die, we become angels?” She paused, and thought to herself for a moment, and then quietly said, “I’d like to be an angel.”
“Why?” I asked.
“Because otherwise I’d just be dead,” she said.
I laughed, and said, “Wow, that’s a really good reason.”
Wearing a serious expression on her face, my five-year-old then said words that humbled and moved me, words that seem fitting to begin the last chapter of this book. She said, “But for you, mommy, for you, I want you to grow inside another woman’s tummy.”
Well, as you might imagine, for a time I couldn’t speak. Finally, I managed to whisper, “I think that’s a wonderful idea, Belle. I hope that happens.”
“But Mommy,” she said. “Come back well.”
* * *
—
My now six- and eight-year-old daughters love having me tell them the stories of how I and they were born. They never tire of hearing the same thing again and again. Of course, the stories couldn’t be more different. I used to ask my mother to tell me my story all the time, too.
I was born in the midwife’s two-room concrete house, nine months after the fall of Saigon, in a nondescript provincial capital in central Vietnam, which in actuality was nothing more than a little town. The midwife had successfully delivered my father and his four brothers a generation earlier, and had delivered my brother and sister before me (as well as nearly every other baby in the town). There was no prenatal care, no machines, no projected due dates, no epidural. My mother tells me she forgets how bad the pain was. Her stomach hurt the night of the sixth day of the twelfth lunar month of the Year of the Rabbit, and she rode a
moped driven by my sister’s nanny the few dusty blocks. My father was not home. He was off somewhere trying to sell and deliver the last of our hardware business’s inventory before the new regime came to confiscate it and more. My mother lay down, and I came quickly. Nobody recorded the exact time that I entered this world, and my mother doesn’t remember.
Both my girls were born at St. Luke’s–Roosevelt hospital on Manhattan’s Upper West Side. Mia, being the first, required an epidural, twelve hours of labor and an hour and a half of exhausting pushing that so concerned my obstetrician, she finally decided to use a vacuum to remove the baby. With the vacuum, Mia slipped effortlessly out, and within seconds, I was clutching her slippery, wiggling body at 5:56 P.M. Belle came quickly at the height of the summer heat; it was ninety-nine degrees that day, and I was burning up on the street. I was that pregnant lady who couldn’t get a cab—shift change or fear of having a pregnant woman deliver in the cab, I couldn’t say. So I desperately and impatiently took the subway uptown with my husband, breathing through the excruciating pains as everyone apprehensively looked on, and then walked across two long avenues to Tenth Avenue, where I was greeted by a wheelchair and a security guard who told me to think about ocean waves; I almost told him to shut the fuck up. I was already eight centimeters dilated, so I bypassed the usual admissions process and was rushed into a room where I got an epidural and the doctor broke my water. Belle came resoundingly into the world twenty minutes later at 6:23 P.M.
As ordinary and mundane as new human life is, even my young children, as shown by their insistence on hearing the stories, instinctively recognize that each new human life is anything but ordinary or mundane; they appreciate the uniqueness of each of their birth stories and, by extension, the awesomeness of their existence. Even at their tender ages, they wonder about where they were before they were here and how they came to be. We call it, in all of its triteness, the miracle of life.
A miracle is defined as that which cannot be explained by the laws of science or otherwise defies all known rules of the natural world. The miracle of life in some sense is not a miracle at all. The laws of science can explain how human life comes about—I received those weekly emails from babycenter.com describing what was happening within my womb while I was pregnant—egg meeting sperm, cells rapidly dividing, so many organs forming, so many systems developing. There is no mystery at all. And yet, it is the very creation of life, that undefinable spark that begins the process, that is the miracle. And then from there, a million and one things have to go just right, and fortunately for me and as far as we can tell—knock on wood—they did with respect to my little girls. The proper occurrence of those million and one things in the right time sequence is a miracle. As one who was born blind, I was particularly sensitive to the delicacy of that process that seems so ordinary, how easily something small with far-reaching consequences could go wrong. I suspect I fretted more than the average expectant mother.
These birth stories were what I wanted to write down when I learned that I had Stage IV colon cancer, in 2013; there were so many things, but these most of all. Who else could tell my daughters how I counted their fingers and toes to make sure they were all there? Who else could describe the magic and wonder of seeing them for the first time, their alien-like faces and still-damp, soft skin that strangely smelled of me and them, their nearly bald heads that begged for warmth and nurturing in their utter fragility? The scientific and factual mundaneness of their existence didn’t register with me; I could only see them as my little miracles, just as most any mother would. I marveled at the physical aspect of the miracle of life, the feel of skin on skin, the moving limbs, the beating heart of a new life in the world that hadn’t been there seconds before.
But there was more that my children needed to understand, which only I could explain to them—the nonphysical aspects, the miraculous parts of their birth stories that involved their very existence, their life stories. Who else could make them understand the truly miraculous nature of their lives and my life, of our lives, inextricably intertwined and shaped by historic and familial forces far beyond our control? Who else could tell them how their births were especially miraculous for me, how insofar as they came from me, their lives could easily have never been, just as mine could easily have never been?
My parents, my grandparents, especially my grandmother, did not see me as a miracle in the physical or nonphysical sense of the word. Quite the contrary. My existence was seen as deeply flawed, a gross failure of whatever miracle of life there was in that forsaken time and place, an abomination, a curse, a problem that had to be addressed in a most drastic manner.
On the bus to Da Nang to have the herbalist give me something that would make me sleep forever, my mother cradled me and quietly wept. She stroked my face. She’s so beautiful, she thought. Why must I destroy her? She searched the passing faces, all oblivious to the crime that was about to happen, all smiling and laughing and blithely living life. None of it made any sense to her. Her tears fell like rain onto me.
But between the herbalist, who turned out to be a man of good conscience, and my great-grandmother, who commanded that I be left alone—“How she was born is how she will be!”—my life was saved by a woman I barely remember and a man I never knew. And because my great-grandmother was the ultimate matriarch (the mother of five sons and four daughters, and grandmother and great-grandmother to countless descendants), her decree was the ultimate law in our family. No further attempts were made to end my life. Somehow, despite all, I survived, and I grew.
And then that which seemed impossible in the early days of my life came to pass—I gained vision, imperfect as it is. My mother got me to UCLA, where a young pediatric ophthalmologist, originally from Missouri, who had never seen a case like mine and who warned my mother he didn’t know how much vision I would ever have, operated to remove the cataracts. Had I been born in the United States, it would have been an easy matter. But I hadn’t been, so it wasn’t easy at all. Too many years of cataracts shuttering me from the world had caused my brain to forget the optic nerve pathways that linked brain to eyes, and now my brain didn’t know how to use them. Four years old, and my brain was flooded with visual information it could make no sense of. It was too late to teach my brain, even with the best corrective lenses.
But it was more than I had ever had. I could see color and shapes and I could walk on my own and I could read with visual aids and I could watch TV. In time, I would learn to work with the vision I had been given and even thrive despite the severe limitations it imposed. A relatively normal childhood in this new land, family, friendship, academic success, scholarships, elite institutions of higher learning, high-powered career, lots of money, world travels, handsome husband, two beautiful children. All of it came to be despite what my grandmother saw as my future in those early days.
Some might call what happened to me and my life itself a miracle—that is, minus the cancer.
I think a lot about miracles, but not in the context that everyone in the “cancer community” throws about the word, as in hoping for a miraculous cure. I had somehow achieved the impossible in my life. So when I was diagnosed with metastatic colon cancer, many would have argued that if anyone could find a miraculous cure, it would be me. That thought never occurred to me. Rather, when I learned that I had life-threatening cancer, I thought that somehow my grandmother, who had died seventeen years earlier, was trying from the grave to kill me again. I’ve always felt, even long before I found out about the herbalist, that I have been living on borrowed time, that my life had been saved once already—twice if you count the restoration of residual vision as constructive salvation—that no one gets to have her life saved a third time. Intuitively, I just know that that is how the universe works. No, I haven’t been hoping for a miracle. I’ve already had my miracle and then some. Rather, I’ve been thinking about the notion of a miracle in the context of life itself—its beginning and ending, my b
eginning and ending, everyone’s beginning and ending, everyone’s miracle of life.
When I see myself as having lived on borrowed time all these years, when I take the view that my life was never meant to be, I appreciate anew how my very existence (and therefore my children’s existence) is, was, and has always been a miracle. And the cancer, although it is shortening my life, destroying what could have been another forty years of living, in no way diminishes that miracle. Everything that lives must die. Even my small children understand this fundamental rule of nature. Some things just happen to die sooner than expected.
And so, the miracle of life must end for each of us. I happen to know how my miracle will end and am painfully conscious of the fact. And that ending—the how of it, what it will look and feel like, the process of dying, the complete antithesis of birth, the unraveling, the unwinding of the miracle of life, how much of that unwinding is within our orderly control, possessed of a certain beauty, and how much of it is a chaotic undoing of the threads of our lives, ugly and dark—these are the questions that have preoccupied me these past five years, especially now, as the end draws ever closer. But all of it is, in itself, also a miracle.
We live in a culture that fears the unwinding of the miracle. It is dark; it is frightening; it is tragic, especially when the death is deemed premature. When I was diagnosed, I went looking for others like me with whom I could explore the darkness, fear, and tragedy. Processing hard truths and vigorously embracing reality have after all been the salvation of my life. But mostly, I found and continue to find delusion, false optimism, and forced cheer in the face of a devastating diagnosis, where death and all the fears that come with it must be avoided at all cost. Clichés born of that need to avoid the truth—from well-meaning family and friends, but most confoundingly from the sickest and caregivers of the sickest—are unthinkingly offered to me constantly. “There’s always hope. You have to stay positive. You have to keep fighting. There is no other option.” I grit my teeth as I think, Actually, there is a point where there is no more hope for continued life. That’s just a factual matter. Really? Why do I have to stay positive? Is there something wrong with being negative? And no, there is always an option, the option of choosing to die. Horror of horrors! In the orthodoxy of dying, this is heresy.
The Unwinding of the Miracle Page 29
