Deals With God

I didn’t grow up with any organized religion. The closest I came was following in 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 at age 10 and 20, I also imitated unthinkingly the chanting, bowing and kneeling motions 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 Judeo-Christian religion 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 demanded angrily answers to my questions which pretty much boiled down to why me? Why was I born with congenital cataracts? Why was I forced to live a life limited by legal blindness, forever cursed to never realize my full potential? After all, I could have been a great tennis player, a spy for the CIA or a legendary sea diver like Jacques Cousteau, but I would never know what might have been because those avenues were foreclosed to me against my will. 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.

I listened for God’s 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 will perhaps share what I learned in subsequent posts, but I just wanted to focus on one answer here. 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 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 my magnitude is pretty bad — there must be a good. So, I want to name my ‘good’, my compensation for all the shit that you have and are putting me through. I want to find the greatest love possible in this world. I want to find someone who will love me till 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 what he called in his broken English “I love you” books, so I covered all the books with the trashy covers in 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 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 and he brought tall, dark (kind of), handsome and brilliant Josh into my life. As unlikely as it was for this WASP-y 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 more than seven 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). Maybe one day with Josh’s permission, I will tell that story because it is an extraordinary one and one that our daughters deserve to know. I think he would be okay with me sharing that from the start I always thought Josh had the kindest and most generous heart and the purest soul that a human being (as inherently flawed as we are) could have, and I tried and still do try to fiercely protect his heart and soul 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 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’s 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. Whatever modicum of security I once felt is completely shattered. If cancer and bad shit struck once, it can and will strike again. I know it.

So I lay 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 formed 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. You know better than anybody else the strength that lives within my spirit. But you leave my husband, my children, my parents, my siblings, everyone I love alone. Dammit! Leave them alone! Do whatever the fuck you want with me but don’t you dare touch them!”

A woman in my 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, such is my fighting nature. 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 deal again this time around.


4 Comments (+add yours?)

  1. Tamara Malkin-Stuart
    Sep 18, 2013 @ 11:13:07

    Dear Julie,
    your writing is inspiring and compelling. Thank you for sharing your experience with others in a way that will surely enrich them. Thinking of you,
    Tamara (Sterling’s mom)


  2. Berta Bustamante
    Sep 18, 2013 @ 11:52:57

    I wish you strength and I wish you peace. Anything we can do to help, as a community at ISB, I know we will do it. Just say the word. Berta (Mares’ mom)


  3. paddleboardgirl
    Sep 18, 2013 @ 16:41:59

    I know exactly what you mean wanting your husband and kids to be spared – it is heartbreaking to see them hurting as a result of our diagnosis… I am with you..


  4. Mae-Ann
    Oct 01, 2013 @ 18:30:32

    I love the part about you and Josh. I hope you do get to tell that story one day. I would love to read about it. How romantic! Sigh….


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