At first, I feel free. The big C word, the yene machla, "that disease" in Yiddish, the one we won't grace with a name because a name is power, is said out loud right in our faces, and I feel free. I want to march up and down outside in front of our synagogue, the most public place, and say that word. Cancer cancer cancer cancer cancer. Open, clear, no more unknown, no more unseen enemy. I see you. I know where you are and what you're doing and where you're going and how we're going to get you. I know your NAME.
The nodes in Levi's neck pulsate like saber rattling. Oh, but it's two against one here, Mr. Cancer, and we know how to fight. You'll see, cancer, you'll see.
But this is a new enemy and it is all around, in the shadows. I have ignored you, Levi, our sole support for the nine of us, and what would I do if you die? I don't know this country or how to function in it, don't know how to work, what to work at, we'll be thrust out naked and alone. You provide our home, our food, you've even given me the luxury of imagining life without you because I felt safe enough to do that, but now that I may have to really make it alone, I'm terrified. I flinch at peripheral motion, crouch down, surround myself. We will pull this enemy out into the light, front and center. Gather weapons. Steady now, Levi. March.
This is cancer. I forget everything, except that I don't want Levi to die. I forget our silent sterile life together, the loneliness and anger I sleep with alone in my bed. I forget three dimensions, all of it. I forget God. Faith, no faith, nothing matters now, except that our lives are precious, and our lives have been intertwined for twenty six years, and this must be what love is. I didn't know.
Non-Hodgkins lymphoma, aggressive type, mixed cell, follicular. Stage Three. Levi has had pain in his throat and his eye for two months. Is it in his brain?
We gather the children who are at home, sit them around the dining room table, the sabbath place. What would this table be without him sitting at the head? And Levi tells them, Leibl, Avrami, Sarah, Itzik, and Yossi, that he has cancer. He doesn't make promises. He tells them that he doesn't know if he is going to live or die. He calls Libby and Mendel, both away at school, and talks them through with a wise and tender guidance. I watch that, and wonder where that wise and tender father has been for so long, but it doesn't matter now. They cling to him, hang on his words. But a child shouldn't have to hear this. I swallow, but I don't cover their eyes and ears, don't shoo Levi out of the room. I am Mother, and I can't protect my children. Your father could die.
We tell our family, and our friends. Every tongue-tied person grasps at numbers and waves them at us. "Oh," they say, "Lymphoma. Highly curable. Eighty percent!"
Are you my friends? You tell me your figures to soothe yourselves so that you can turn back to your lives. Only lymphoma!? Why, my Aunt Sophie had it twenty-three years ago! I want to clout them, waving such bleakly hopeful statistics at us, numbers that would horrify any actuary if applied to, say, car owners. What would that do to insurance rates? Oh, no, I could argue. Only twenty out of a hundred die? Good news! They bring casseroles that line the counter in my home. When I see the rows of dishes, I begin to shout. "This is not a shiva house! Levi is alive, damnit!" We are not in mourning.
Meanwhile, Levi tries not to scream when they shove a tube through his hip and into his bone to retrieve a chip, and then deeper still to suck out marrow. So sorry, Mr. Lax. The local anesthesia just won't do much that deep in. He lies on the table, blood staining his gown, and I stand close, careful against the forbidden touch in public, and look into his eyes, this man that I, I love, who is my husband, who I can't desire, who I need so very much.
"I imagine the pain... becomes relative," Levi says.
This is Levi; he endures. I see now that cancer will strengthen his faith. He prays.
At home, in place of a prayerbook, I pick up a book of poetry by Robert Lowell. "Hope," Lowell tells me, "lives in doubt. Faith is trying to do without faith."
But, I tell Lowell, I need to pray. Lowell grieved over hymns that "sing of peace but preach despair." I hear hymns that two-tone way now, too, I tell him. But I still need to pray.
"I was drawn back to the hymns in spite of myself," he says.
I ask him, "Was it..."
"...because of the way they gave darkness some control," he tells me.
"Oh, I know," I say. "They promise such comfort. You found a loophole for the soul, but..."
"Listen to the bells!" Lowell says.
"So," I say, "then...it's okay, maybe good, to listen to the bells, even when the hymns and the faith are eviscerated. I can't help but hear the bells".
The truth is, the God I defy is the same God I still think has control far beyond our silliness. How hypocritical, how farcical, how typical I am, the Jew who shakes her fist at God and never doubts that Presence, who ascribes God control so great that nothing is left to confront but how small our efforts and how mad our superstitions.
I have lived too long in Lowell's sanity of self-deception, within those too-clean lines of religion shaved of doubt and the inexplicable. I can't mouth rote words of prayer like Levi, can't imagine any more that just saying words can change terrible facts, yet I'm drawn to the bells that call me back. One bell is Levi. He is part of what has kept me holding on to ritual, unable to relinquish.
I have to go back and look at my religion again. And I have to go back and look at Levi again.
"If you do, it will bring no true tenderness, only restlessness," Lowell warns me.
But the cancer makes me reconsider my religion, and my marriage, before I leave them. I need to pray because I don't know how to sit in such a terrible moment and do nothing. I haven't the pluck to let my hopes just be, to sit with my fears. I can't give up the possibility that if I hope hard enough, it will be so.
So I cry over the prayerbook. But it doesn't help me. I stand apart. The need stays until I go to the mikvah, the monthly ritual bath, and find myself naked and defenseless in the warm, womblike water. There is nothing left here but the blue tiled walls and the echoed drip, the blurred image of my watery hands in front of me. There will be no sex after this, no hope of it, either. There's no desire left in me, in either of us, but here I am.
I can't argue any more. It doesn't matter any more that my need for confrontation and connection with the forces buffeting my life is no proof of a God or of the efficacy of prayer. My need only proves me a miserable, wet, naked human being, but it doesn't matter, because I am no more than human, and that means that I need to talk to an unfathomable Will and confront my exhaustion before the inescapable. I need words that make the immeasurable finite and chip the overwhelming down to size. I need words that will save me from anguish. Prayer is writing in its deepest, most raw and personal form. Because I am weak. Because I am alive. I immerse and succumb.
I will keep everyone safe. I will keep everything same. Same is safe. That is my job. I am Safety. I am Mother. I get to the grocery store at seven in the morning and charge through the aisles until I fill three carts. We will be at the hospital and away from home a great deal, and I must make sure everyone will be okay. I wave the shopping list as I go, the one that Leibl and Avrami made last night along with a menu plan. The two boys also divided the cooking between them. We will do this together. The bill is over four hundred dollars. "Next time," the manager tells me," just call and we'll deliver. No charge."
I have to get back home in time to get the children off to school. I'm hoping they have readied themselves. I want them to see Mommy before they leave. I race home, and Avrami meets me outside, unloads and starts putting things away. We will do this together. Sarah is ready for school, but the two younger boys haven't gotten ready, no shoes, no breakfast, so I set out breakfast, make lunches, and get them moving. Three different calls from doctors and Levi leaves for the hospital without me. Before he leaves, I hand Levi a sack lunch, there's no kosher food at the hospital. I have to run carpool and Itzik won't get his shoes on and I am late for Levi's catheterization at M.D. Anderson Hospital and a class about catheter care that I'm obligated to attend twice if I'm to care for him. I care for him. If I wind up and whirl fast enough the pain will fly away.
I arrive to find a technician struggling to thread a line into a spot below Levi's clavicle, into a vein that leads a straight short path to the heart. He has to bypass an artery without puncturing it, no leaking or kinking, and he's having trouble. He wiggles and pulls, and Levi goes white.
Afterwards, Levi heads off to another clinic and I settle into a soft chair in a lounge to wait with him. I have my tote bag. The cushion reminds me of how tired I am, I lean into that, close my eyes, but then I pull out a copy of a play called "W;t" that I just bought, about an English professor dying of cancer, a play that just won a Pulitzer that I've seen touted in the news. It's also in a display window here in the hospital. The English professor has spent her life engaged in convoluted analyses of the sonnets of John Donne, in Donne's confrontations with death and an afterlife, and she never had love, never really lived. Only now in her own confrontation with cancer does she realize that simplicity is real living, the mundane that she had always disdained, that gives life and experience, not the wall of complex ideas she erected, and she missed out. It is too late for her.
My throat tightens for the life I lead with Levi and the children. What would the daily details be without all my philosophical flights away from reality and escapes into Hassidic philosophy and prayer. It seems, right now, that the words I weave in my head, and the religious ideas to which I cling, are barriers to living.
I put the play down and launch myself out of the chair in the hospital lounge, back to the Infusion lab to get the results of Levi's chest x-ray before meeting him at our appointment with the doctor, carrying the sadness in my throat from the play, from my life. At the desk, an older man steps right in front of me, but he just wants to say hello to the clerk. She jumps up and comes out from behind the desk and wraps her arms around him. Her eyes are shut, forehead creased. Such gratitude. I can't bear this. And then she takes her leave of him, sits back down, looks up at me.
I almost can't choke out my request: "Levi Lax's x-rays, please," I say, and then, with quivering lips, eyes filled, fighting it, I add, "That man, he... must've survived something... big." I have never wanted Levi more, loved him more, than at this moment.
She is a tall, black woman, with a very large bust. "Oh, honey," she says, in her particular Louisiana black accent. "The doctors gave him a coupla weeks and it's been nine years," and that finishes me. Then she is up again, and I am pulled into that motherly bust. "God is good," she tells me. "God is sooo good. He is all love. You'll see."
I soak in her kindness. I reject her words.
There is so much to remember now. All the steps in catheter care. Flush the line. Clear the air out of the pump before administering the heparin. Hold onto the rubber tip. After chemo, remember to flush the line with saline. Don't forget to unclamp. Did you swab the cap? Don't touch the end of the open catheter. A single germ, or a single air bubble, can go straight into his heart and kill him. Change the dressing. Don't clamp it this time! Alcohol before betadine. A separate set of gloves for cleaning and then discard. Then commence redressing it. And if you stayed up until three o'clock in the morning pouring yourself into the keyboard you can make mistakes. Crucial mistakes.
Weekly blood tests. Watch his white blood cells disappear until he is like a bubble boy left out of his tent with no defense, and it will be the germs of the world that kill him before the cancer.
Now we know, now they tell us that this is no typical lymphoma. So what is typical? Why won't the cancer go away? Why is the catheter itching so? Is it getting infected? Better get it checked out. Fever? Straight to the hospital, and another day in the emergency room. And another. Watch the chemo pump. If the line is orange, the medicine is moving. Keep a spare battery nearby. Live, damnit!
Why isn't the cancer responding?
Foods he can handle: oatmeal, with protein powder. Smoothies with fruit and milk. Berries are best. Why is the weight dropping off so fast? Twenty pounds already gone. Eggs! Eggs taste almost normal to him. Nothing with tomato paste, or he'll taste bitter metal for days. He's so thin!
But he's a cancer patient; they shrink before they fade. The last step is transparency. I grab Levi's image in the air and my hand passes through it. Must hold on. Try two hands. "Eat!" I say. To keep you opaque.
And the kids. "No, if your friend is sick, you can't go over there." "You can hug your father, but no kisses." "Get up! Go to school! No dawdling."
What to do about well wishers? Friends at the synagogue with unwashed hands who hug him, touch him, bless him with long life. Dishes sent to our home from dozens of different hands. Whose snot-nosed children were standing nearby while you made this? Any fever, and Levi has to go straight to the hospital. Levi eats the food they send over and gets sick.
Watch his skin go yellow as the dead blood cells pile up. There's an open line to his heart hanging out in the air, and behind it, thinned blood with defenses down. Can I stop a single rogue microbe?
Demand wellness. Demand that he live. Keep him vertical, moving, out there. Keep a bucket nearby for his retching. Listen, at night, to him breathing. Follow him to the synagogue, scowl at people who offer their germy hands. Why does he shake their hands? Stay away!
Can Levi possibly remain the same person after this? A new hope wells up, that he will change. He must. Oh, I hope, I hope, this will change him, soften him, bring him to me, so that maybe I can stay. My poor children, it will take this, to keep me. He has to change, because I can't, can't be any more what I'm not, can't play along, can't shape myself to him, so he will have to come to me. The cancer has to change him.
I am Mother. I am fierce. I am afraid. If he dies, will I? I am determined to keep him safe, but a tiny, budding part of me, deep inside, is preparing for him to die. It whispers to me, he can die, you must know this, he can die, you may want this, he can die, and then, and then... you can do this.
Then I know. I can.
I can manage alone. When it's all done, when he's well again, I can leave and find my life. I can leave him. I will live.
Leah Lax holds an MFA in Creative Writing from the University of Houston. "Hassidic Love Story" is an excerpt from her as-yet-unfinished memoir about her thirty years among the Lubavitcher hassidim as a hidden lesbian.