Many may disagree, but I have always believed, always, even when I was a precocious little girl crying alone in my bed, that our purpose in this life is to experience everything we possibly can, to understand as much of the human condition as we can squeeze into one lifetime, however long or short that may be. We are here to feel the complex range of emotions that come with being human. And from those experiences, our souls expand and grow and learn and change, and we understand a little more about what it really means to be human. I call it the evolution of the soul. Know that your mother lived an incredible life that was filled with more than her “fair” share of pain and suffering, first with her blindness and then with cancer. And I allowed that pain and suffering to define me, to change me, but for the better.
In the years since my diagnosis, I have known love and compassion that I never knew possible; I have witnessed and experienced for myself the deepest levels of human caring, which humbled me to my core and compelled me to be a better person. I have known a mortal fear that was crushing, and yet I overcame that fear and found courage. The lessons that blindness and then cancer have taught me are too many for me to recount here, but I hope, when you read what follows, you will understand how it is possible to be changed in a positive way by tragedy and you will learn the true value of suffering. The worth of a person’s life lies not in the number of years lived; rather it rests on how well that person has absorbed the lessons of that life, how well that person has come to understand and distill the multiple, messy aspects of the human experience. While I would have chosen to stay with you for much longer had the choice been mine, if you can learn from my death, if you accepted my challenge to be better people because of my death, then that would bring my spirit inordinate joy and peace.
You will feel alone and lonely, and yet, understand that you are not alone. It is true that we walk this life alone, because we feel what we feel singularly and each of us makes our own choices. But it is possible to reach out and find those like you, and in so doing you will feel not so lonely. This is another one of life’s paradoxes that you will learn to navigate. First and foremost, you have each other to lean on. You are sisters, and that gives you a bond of blood and common experiences that is like no other. Find solace in one another. Always forgive and love one another. Then there’s Daddy. Then there are Titi and Uncle Mau and Aunt Nancy and Aunt Caroline and Aunt Sue and so many dear friends, all of whom knew and loved me so well—who think of you and pray for you and worry about you. All of these people’s loving energy surrounds you so that you will not feel so alone.
And last, wherever I may go, a part of me will always be with you. My blood flows within you. You have inherited the best parts of me. Even though I won’t physically be here, I will be watching over you.
Sometimes, when you practice your instruments, I close my eyes so I can hear better. And when I do, I am often overcome with this absolute knowing that whenever you play the violin or the piano, when you play it with passion and commitment, the music with its special power will beckon me and I will be there. I will be sitting right there, pushing you to do it again and again and again, to count, to adjust your elbow, to sit properly. And then I will hug you and tell you how you did a great job and how very proud I am of you. I promise. Even long after you have chosen to stop playing, I will still come to you in those extraordinary and ordinary moments in life when you live with a complete passion and commitment. It might be while you’re standing atop a mountain, marveling at exceptional beauty and filled with pride in your ability to reach the summit, or when you hold your baby in your arms for the first time or when you are crying because someone or something has broken your tender heart or maybe when you’re miserably pulling an all-nighter for school or work. Know that your mother once felt as you feel and that I am there hugging you and urging you on. I promise.
I have often dreamed that when I die, I will finally know what it would be like to see the world without visual impairment, to see far into the distance, to see the minute details of a bird, to drive a car. Oh, how I long to have perfect vision, even after all these years without. I long for death to make me whole, to give me what was denied me in this life. I believe this dream will come true. Similarly, when your time comes, I will be there waiting for you, so that you, too, will be given what was lost to you. I promise. But in the meantime, live, my darling babies. Live a life worth living. Live thoroughly and completely, thoughtfully, gratefully, courageously, and wisely. Live!
I love you both forever and ever, to infinity, through space and time. Never ever forget that.
Mommy
3
The Odds
It was meant to be a family wedding. Midsummer 2013, everybody gathered in Los Angeles to celebrate my gorgeous young cousin’s happiest day. I didn’t make it. Josh and I had flown from New York with Mia and Belle, intending to stay about a week. For a month or so before that I had been having stomach discomfort—amorphous, other than that it just didn’t feel normal. Nausea, cramping, and constipation had sent me to a gastroenterologist, but nothing appeared to be seriously amiss. Then, in L.A., I started vomiting violently, and so I got to spend the nuptials in the ER.
A colonoscopy revealed a mass in my mid-transverse colon; the colon was almost entirely obstructed. In the lexicon of diagnoses, a “mass” is way down the list of things that you want a doctor to find inside of you. Even before there had been a biopsy, the doctors were pretty sure that it was cancerous. But they wouldn’t know for certain until they went in.
I will never forget the moment I woke up after my hemicolectomy in the recovery room. Josh was being consoled by Tim, the nurse, and my surgeon, Dr. D.C. He was being told that he had to take care of himself in order to take care of me. Tim asked him if he’d eaten dinner and, before Josh could answer, brought him a slice of pizza from his own dinner. Even in my anesthetized state, I knew something had to be really wrong if everybody was fussing over Josh and not me, the person who had just come out of surgery.
So when Dr. D.C.’s youthful face appeared before me, I croaked out, “Is it dire?” Based on the mood in the room, I fully expected the answer to be yes.
Instead, Dr. D.C. said, “No, it’s not dire. It’s very serious, but it’s not dire.” He went on to explain to me that he had successfully removed the tumor, but that he had found one “pea-size drop metastasis” to the peritoneum in the area above the bladder, literally a drop off the main tumor. I thought to myself, Okay that doesn’t sound that bad—a pea-size drop met that was also removed—so why was Josh so upset?
I lay there in my drugged state, letting their conversations wash over me as I worked myself to greater wakefulness. Dr. D.C. said that I wouldn’t remember anything that was being said that evening. Josh told him not to be so sure about that. I smiled to myself. Years of being with me had taught Josh that my mind is like a steel trap, and that, drugged or not, I don’t forget anything (especially when it’s something I can use against him).
I, in fact, remember a lot from that evening. In addition to the physical discomfort of having just come out of surgery, I remember thinking that the surgery must have taken way longer than the estimated two and a half hours, since it was dusk outside. I remember my brother and cousin coming to visit me in my hospital room. Most of all, though, I remember everyone throwing numbers about. One drop met. Stage IV. Six percent, 8 percent, 10 percent, 15 percent. Thirty-year-old numbers.
Because I had one metastatic spread of the main tumor to another part of my body, regardless of the size of that spread, I was thrown into the category of Stage IV. Stage IV colon cancer is associated with very low survival rates, ranging anywhere from 6 to 15 percent. Dr. D.C. repeatedly told Josh that evening that the statistics on survival rates are themselves based on thirty-year-old studies and therefore should not be relied upon.
Once I grasped that everyone was preoccupied with the numbers, I understood why Josh was so up
set. Josh loves numbers. He can do complicated calculations in his head. He’d asked me at various points during our courtship, “What do you think the odds are of us getting married?” He’s memorized every Super Bowl score since the beginning of the Super Bowl. He can remember that Roger Federer was down 5–3 in the second set of the third round of Wimbledon in 2009. For him, as for many people, numbers impose order in an otherwise chaotic world of randomness. And to be told that his wife had Stage IV colon cancer and therefore possibly a single-digit likelihood of living five years was understandably and especially devastating.
Josh sobbed that night and early the next morning, as he googled again and again survival rates for Stage IV colon cancer from the recliner that was doubling as his bed. The light from the iPad cast an eerie glow on his face in the darkness of my hospital room. He didn’t want to discuss the statistics for fear that they would upset me, but Josh can never hide anything from me—that’s one of the reasons I love him so much.
And then he was incredulous when the numbers didn’t actually upset me. “So what?” I said. “Don’t you get it?” he demanded, wanting me to understand the seriousness of the situation.
As much as Josh loves me, he cannot comprehend a fundamental truth about me simply because he hasn’t lived my life. He doesn’t understand that my very existence on this planet is evidence of how little numbers matter to me. Numbers mean squat. I asked him that night to go back to 1976, into the desolation and hopelessness of Communist Vietnam, and set the odds of a blind girl making it out of that unimaginable poverty, of her escaping the stigma of having a physical deformity that would make her undesirable to any man and unworthy of being any child’s mother, and of her withstanding the shame of knowing that she would forever be the burden borne by a proud family that would have to care for her like an invalid for all her life.
I demanded that Josh set the odds of that little girl surviving at sea when so many grown men perished, of her gaining some sight despite years of optic nerve damage, of her achieving academic success in spite of the low family expectations stemming from immigrant ignorance, of her graduating from Harvard Law School, of her establishing a legal career at one of the most prominent international law firms in the world, and finally, of her marrying a handsome, brilliant man from the American South and then having two beautiful daughters with him. Of course, Josh couldn’t set those odds.
Josh has spent many hours reading medical studies, trying to increase the likelihood of my survival. A single metastatic spread as opposed to multiple metastatic spreads yields some additional percentage points, as do my age and level of fitness, as does the fact that I have access to the best medical care in the world, as does the fact that I have a wonderful support system. According to Josh, these raise my odds of living five years to somewhere in the vicinity of 60 percent, which is to him a hell of a lot better than 6 percent.
To be honest, 60 percent doesn’t sound that great to me, either. In truth, anything short of 100 percent is insufficient. But as we all know, nothing in life is 100 percent. The chance of a woman under forty having colon cancer is 0.08 percent according to a Mayo Clinic publication—Josh tells me this sort of thing because I personally don’t google anything to do with statistics. That number takes into account women being afflicted with the disease for both genetic and nongenetic reasons. My tumor showed no genetic markers, which means that the likelihood of me having colon cancer is even less than 0.08 percent. My phenomenal internist told me that in his thirty-seven years of practice he has never come across a case where someone as young as I developed colon cancer for nongenetic reasons. Don’t I feel so special? I had at least a 99.92 percent chance of not developing colon cancer at this point in my life, and I got it.
So numbers mean nothing. They neither provide assurance nor serve as a source of aggravation. Sure, it would have been better if my cancer were Stage I and there had been zero metastatic spread, but even when the odds are in your favor, you can still lose. For all of Josh’s obsessiveness with statistical odds, he always tells me when the underdog wins the football or basketball game and defies the odds, “That’s why we have to play the games.”
Well, I’m here to play the game, and I choose not to live and die by what the oddsmakers say. I choose not to put faith in percentages that were assembled by some anonymous researcher looking at a bunch of impersonal data points. Instead, I choose to put faith in me, in my body, mind, and spirit, in those parts of me that are already so practiced in the art of defying the odds. Coach Taylor always told his ragtag Dillon High School Panther football team on Friday Night Lights, “Clear eyes, full hearts, can’t lose!”
I have clear eyes and a full heart.
4
Seeing Ghosts
In the first twenty-four hours after my diagnosis, every time I thought about my children, my body would be racked with sobs unrelenting. I had often speculated about the types of women my girls would become one day. The thought of not being there to see whether Mia would indeed grow into a bright, sensitive, aloof beauty and Belle into a gregarious, charismatic spitfire made my already pained stomach hurt even more and my heart ache as nothing else I had ever experienced. The image of them crying inconsolably and in futility for me, for me to lie with them at night and kiss their boo-boos away, for someone—anyone—to love them as much and as well as I, tore my insides into a million ragged pieces.
So, for my own self-preservation, I stopped thinking about them. I told Josh to not bring them to the hospital, and when he did anyway, I kept those few visits very short. Invariably, they were unpleasant events, with Mia rushing to leave minutes after arriving because she was no doubt frightened by the tubes coming out of Mommy and with Belle being forcibly removed from my room as we were all subjected to her heart-wrenching screams. My babies became someone else’s children. I knew that they were being well cared for by my parents and sister and entertained by an army of relatives. That was enough for me. I had nothing to give them during those days I spent in the hospital, as I continued to reel from the shock of the diagnosis and worked to get myself ready for and then recover from surgery.
In those early days, I could see my children only as casualties of the war I had begun fighting, a war I hadn’t chosen. We were all victims of cancer, with them being the most undeserving.
Then my sweet, crazy, naughty Isabelle—this child who had grown inside my body at the same time the cancer was growing—began making me see things in a different light.
After I was discharged from the hospital, we stayed for an extra two weeks in a furnished, rented townhouse near Beverly Hills, rather than returning to New York immediately. I wanted more time in Los Angeles to follow up with doctors, recuperate, and be with family and friends I normally didn’t have much opportunity to see. My parents’ house was too inconveniently located on the east side. The rental was cheap and served its purpose, but it was old, dirty, and badly in need of renovations. And for better or worse, it was haunted.
Two nights after we moved in, while making our way through the usual traffic on Olympic Boulevard back to the rental, Belle declared suddenly in her babylike voice, “Mommy, I’m afraid of the dark.” It was the first time my unusually articulate, not-quite two-year-old had ever talked about being afraid of the dark. But to tell the truth, I’ve stopped being shocked by the things that come out of her mouth, having concluded that many of her precocious statements were the results of being the younger sibling of a three-and-a-half-year-old who is pretty perceptive herself. “Belle, there are lots of lights. So you don’t need to be scared of the dark,” I reassured her.
Then, that night, the girls insisted that I lie down with them, especially Belle. So I lay down on the edge of the bed, with Belle next to me and Mia next to her. After a few minutes of silence, Belle sat bolt upright and said again, “Mommy, I’m afraid of the dark.” Indeed, the room was dark, but it was lit by the faint glow of streetlights. “Belle, Momm
y is right here. I’ll keep you safe. There’s nothing to be scared of. Now lie down and go to sleep!” She obediently lay down and then seconds later sat bolt upright again, looking around the room with those dark, piercing eyes of hers. “But, Mommy, I see ghosts.” Now, that was definitely a first. Mia said she hadn’t been talking to her sister about ghosts, and I believed her. In the past, months ago, they’d played games that involved throwing blankets over their heads and going around in broad daylight, moaning “Boo!” But for Belle to talk about ghosts and associate them with fear of the dark was a bit more than I could expect of even her. Chills ran up and down my arms.
Having just had surgery a week earlier and being keenly aware of how much closer death now seemed, I wondered if the Angel of Death was in that room, and if somehow my clairvoyant child could see him.
The next ten days passed with Belle occasionally stopping whatever she was doing in that house to stare at a spot with the look in her eyes that told us she was seeing something we couldn’t see. Once, she asked whatever it was she saw, “Why did you come back?”
Another time, when our longtime babysitter put the phone to Belle’s ear for her to say hi to the babysitter’s sister, as she had done a dozen times before, before the sister could even speak, Belle told her, “I see a ghost in this room.” After we left that house, Belle didn’t fix her stare on a spot, nor did she speak of ghosts again. But I have no doubt that my child saw something in that rented house. Whether it was the Angel of Death, a guardian angel, or some other random spirit, I don’t know. I do know that my Belle is special, that she has magic within her.
And after I left the hospital, Belle’s behavior toward me changed. She became unusually clingy for a while. I chalked that up to the long separation of my hospital stay. The intensity of her need to be near me eventually eased. Now she will suddenly come up from behind and put her arms around my neck and hug me for a good ten seconds, which is indeed a lot of time for a two-year-old. Sometimes, she’ll come up to me and plant a big wet kiss on my mouth and then throw her arms around my neck and hug me fiercely. Then I’ll look into her eyes in that single second before she wants to run off, and I’ll ask her, “Is Mommy going to be okay, Belle?”
The Unwinding of the Miracle Page 2
