In the Face of Cancer, My One-Sided Deal With God
Julie Yip-Williams on Illness, Faith and Family
In the first 24 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, Mommy 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?”
“Yes,” she always says.
Belle is too young to understand that Mommy is sick, yet I believe that some part of her ageless spirit understands what’s going on. When Belle hugs me now, I feel as if she’s giving of herself to me—her hope, her joy, her life force.
When Belle started seeing ghosts, I remembered a poem I had read in high school, “Ode on Intimations of Immortality,” by the Romantic poet William Wordsworth, in which he expressed the idea that children are born “trailing clouds of glory,” with the innocence, purity, and knowledge from having just come from God. It is the process of growing up, and the corrupting influence of society and life, that strips them of all their innate angelic goodness, what Wordsworth called their “hour of splendor in the grass, of glory in the flower.”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.
And what about us adults, who are long past our moments of trailing clouds of glory and our hours of splendor in the grass, of glory in the flower? What of those of us who have been indelibly (and suddenly) scarred by our broken dreams and who might be swallowed by our own bitterness in the face of illness and impending loss? What are we to do? Wordsworth is not without advice for us:
What though the radiance which was once so bright
Be now for ever taken from my sight,
Though nothing can bring back the hour
Of splendor in the grass, of glory in the flower;
We will grieve not, rather find
Strength in what remains behind;
In the primal sympathy
Which having been must ever be;
In the soothing thoughts that spring
Out of human suffering;
In the faith that looks through death,
In years that bring the philosophic mind.
Indeed, we will grieve not for what is lost but find strength in what remains behind, through the bonds of human sympathy born of common suffering, and in our faith in something greater than we can conceive of. And no doubt, finding strength in what remains behind includes rediscovering the magic and wonder of our powerful children and letting them help us walk through our darkest hours.
An irony in all this is that before this lousy diagnosis, I was in the best shape of my life, working out five days a week. Exactly three weeks after the surgery, I was running again on the treadmill for 20 minutes. As I ran, I grew angry at the cancer. I started yelling at the cancer cells. “How dare you betray my body! How dare you threaten to take me away from my husband, babies, and all who love and need me! I will seek you out and I will destroy you!” I shrank to the size of the cancer cells and I began strangling them with my bare hands, reaching into their very DNA. Then I envisioned the chemo empowering me with a sword, with which I slashed them to a billion pieces, and then a gun. But nothing was as satisfying as crushing them with my bare hands.
Chemotherapy will start quickly, as there is reason to believe that the sooner the chemo starts the more effective it will be. I will be on a regimen called FOLFOX, which consists of three drugs, one of which—oxaliplatin—is very powerful. Common side effects: neuropathy (numbness and tingling, including extreme sensitivity to cold in the hands and feet), nausea, diarrhea, fatigue, weakened immune system, mouth sores, hair loss. Yes, hair loss. Ugh! So I will be shopping for a wig.
I will go in every two weeks. Oxaliplatin will be infused into me through a port (which will be implanted in my upper chest) during a two-hour period. I will then go home with a pump, through which the other two drugs will be infused into my body during the next two days.
The doctor also highly recommends switching to a plant-based diet and banning refined sugars. He says there isn’t any good science to support the proposition that such a diet will reduce the risk of cancer or recurrence, but I figure it can’t hurt. The most important thing the doctor told us is that there is every reason to be hopeful. My age, physical shape, the fact that all visible signs of cancer have been surgically removed, and advances in chemo are all factors working in my favor. To believe, to have faith in the face of self-doubt and uncertainty, is definitely the most difficult part of dealing with cancer. But tricks of the mind are not my forte. The life I have lived has taught me to be a somewhat ruthless realist.
I didn’t grow up with any organized religion. The closest I came was going through the motions of my mother’s ritualistic offerings to the Buddhist gods favored for generations in our ancestral Chinese villages, and to the spirits of my ancestors on the first and fifteenth of every lunar month. I stood before the fruit—and, on special occasions like Chinese New Year, the poached chicken, fried fish, and rice—holding the burning incense, and asked the gods and my ancestors for things like straight A’s and getting into the college of my choice and, of course, health and wealth for my family.
During my great-grandmother’s and grandmother’s funerals, when I was ages 10 and 20, I also unthinkingly imitated the chanting, bowing, and kneeling of my parents, uncles, aunts, great-uncles, and great-aunts, all garbed in their white robes and headdresses. I didn’t understand the philosophical underpinnings of the rituals, and my mother couldn’t explain them to me the few times I bothered to ask. No one in our family went to temple other than maybe on Chinese New Year, and no one read any religious texts.
Our quasi-religious practices were very much rooted in popular cultural and mythic traditions of village life dating back hundreds of years, and not in the esoteric teachings of Buddha and his disciples, which would have been more akin to the Judeo-Christian practices of the West. At school I couldn’t help but absorb some of the teachings of those religions, since biblical allusions permeated nearly every poem, play, short story, and novel we studied in English class, and as I learned in history class, Judaism and Christianity shaped the course of Western civilization.
So I grew to believe in a little bit of everything, developing my own spiritual and philosophical approaches to life. I believe in my ancestors and that their spirits watch over me. And I believe in God, not perhaps in the image of God depicted in the Bible, but an omniscient and omnipotent being nonetheless. I think God is beyond what my little, limited human brain can fathom, but perhaps something my limitless soul can just begin to grasp in my moments of utmost clarity, moments that the Buddha would describe as the outer edges of enlightenment. For simplicity, I called all these unseen forces God.
I talked to (and yelled at) God a lot growing up, especially on sleepless nights, during which I angrily demanded answers to my questions, which pretty much boiled down to Why me? I of course have this question in common with every human who has ever lived. But we all make it our own, don’t we? In my case, Why was I born with congenital cataracts? Why was I forced to live a life limited by legal blindness, forever cursed to not realize my full potential? After all, I could have been a great tennis player, a spy for the CIA, or a legendary diver like Jacques Cousteau. Why could all my cousins and friends drive and I could not? Why were all those pretty but brainless girls always surrounded by the cutest boys while I was shunned because of my thick glasses? Yes, all the things that hurt so much growing up with a visual disability became fodder for the angry tirades at God. God had a lot to answer for.
I listened closely for his response. I searched with my head and heart for the answers to my questions. I found them eventually, over the course of many years. I grew to embrace a belief in universal balance, something the Chinese very much believe in, as evidenced by the idea of yin and yang (e.g., man and woman, earth and sky, sun and moon, good and evil). In the karmic order of the universe, all things will return to equilibrium, and there will—indeed, there must—be balance.
So I made a deal with God on many of those sleepless nights. “Fine, God. If you’re going to throw this crap at me, I demand to be compensated. I want the balance of my life to be restored. For everything that is bad—and you would have to agree that a visual disability of this magnitude is pretty bad—there must be a good. So, I want to name my ‘good,’ my compensation for all the shit that you are putting me through. I want to find the greatest love possible in this world. I want to find someone who will love me until the end of my days with an uncompromising and unparalleled love.” That was the one-sided deal I struck with God again and again.
I suppose I was like most other teenage girls, my head filled with romantic notions as I read Barbara Cartland novels and Harlequin romances. My father forbade me from reading any of what he called in his broken English “I love you” books, so I hid their trashy covers behind white Chinese calendar paper, and he left me alone to dream about my Mr. Right—there are certain benefits to your parents not being able to read English. Of all the things I could have demanded as part of my bargain with God, I chose love because love was unattainable. Finding love seemed out of my control, totally dependent on timing and fate. It wasn’t like scoring the perfect report card, which could be achieved through individual will and hard work. Mostly, though, I thought love to be unattainable because I believed I was unlovable. I mean, who would ever want me, as physically defective as I was? Who would ever willingly agree to be hampered by my limitations? What desirable guy would want to be forced to drive me around, read menus for me, help me down stairs, be precluded from couples sports like tennis, have his family and friends stare at the geeky girl with the thick glasses? No one, I thought.
But God accepted my deal!
He brought tall, (kind of) dark, handsome, and brilliant Josh into my life. As unlikely as it was for this Waspy good ol’ boy from the South to walk unsuspectingly into the office of this immigrant girl from Vietnam with her screwed-up vision on the 43rd floor of a posh skyscraper in lower Manhattan all those years ago, the forces of the universe (a.k.a. God) made it happen. I know that many people never find the kind of love Josh and I share, a love that was tested and strengthened from the very beginning by terrifying challenges (not unlike the life-threatening challenges that face us now). From the start, I always thought Josh had the kindest and most generous heart that a human being could have (as flawed as we both are), and I tried and still do try to fiercely protect his heart from anybody and anything that threatens him. It is the least I can do for this man who loves me so abidingly, this man who makes sure my water bottle is always filled and makes me go to bed when I’ve fallen asleep on the couch, this man who has always read menus to me like it was the most natural thing in the world to do, this man who loves me just as I am.
But I can’t protect him from cancer and all the bad stuff that is beyond my control. I can’t shield him from his now constant fear of life without me. I can’t take away his sense of total helplessness. I can’t promise him that I will win this war. I absolutely hate what this cancer is doing to him. I hate how it makes him cry and rage and despair. I hate cancer more for what it is doing to Josh than for what it is doing to me.
Ever since the diagnosis, fear for Josh and my loved ones seems to live in every molecule of my body. Why did he sleep so much over the weekend? Could he have cancer? What about the wrist pain and indigestion he’s complaining about? I look at my children with the same fears. Does Belle have brain cancer because she lost her balance that one time? Does Mia have cancer because her poop looked unusual the other day? Cancer is so insidious that it attacks your every waking thought. It’s not a disease so much as it is the enemy of existence, come to turn our bodies against us. Whatever modicum of security I once felt is completely shattered. If cancer and bad shit struck once, they can and will strike again. I know it.
So I lie awake at night now with the voices in my head screaming these questions, wondering what horrible thing will happen to me and my family next. And I find myself making another deal with God, going back to my long-ago ideas about the balance between good and bad. In a world where I have no control, what choice do I have but to talk, scream, rant to, and beg of God? I tell him, “If you’re going to do this shit to me again, if you’re going to give me more shit to deal with in my life, fine. I can handle it. You know I can. But my husband, my children, my parents, my siblings, everyone I love—leave them alone. Dammit! Leave them alone! Do whatever the fuck you want with me, but don’t you dare touch them!”
A woman in a support group told me that my deals with God are my form of prayer. I never thought of them that way, since I’ve always been so adversarial with God. But prayer or deal, he’s answered and kept his end of the bargain once before. I obviously can’t tell God to do anything, and there are obviously certain inevitabilities in life, like illness and death at a ripe old age, but God knows what I’m talking about, and I hope he holds up his part of the bargain this time around, too.
Excerpted from The Unwinding of the Miracle by Julie Yip-Williams. Copyright © 2019 by Julie Yip-Williams. Excerpted by permission of Random House, an imprint and division of Penguin Random House LLC, New York. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.