Today I searched Ronan for changes (in his development? His de-volution? What should I call it?), not with excitement as I did weeks ago, but with dread. “He looks weaker,” I told Rick. “Floppy.” Ronan responded by kicking me, lifting his head, and letting out his version of a yell (a long coo that moves into a high-pitched sigh). We’ve been reading (cautiously, and in little bits at a time) about the progression of this disease, how our world will gradually, slowly, inevitably change, but not as we had expected or hoped.
In her achingly beautiful book, The Member of the Wedding (is it possible for a writer to be an image savant?) Carson McCullers, through the character of Frankie, exquisitely renders the feeling of separation from the world, and what it feels like to understand that there is an inevitable end to belonging:
It was the year when Frankie thought about the world. And she did not see it as a round school globe, with the countries neat and different-colored. She thought of the world as huge and cracked and turning a thousand miles an hour.
Frankie understands that the world is grinding away from her every day. Moments are turning over, appearing and disappearing without her involvement or permission or knowledge, and they’ll keep turning after she’s gone. She is nothing but she is also everything, and this is so disorienting that she vacillates between never wanting to leave the dirty little kitchen in her house and threatening to board a train and abandoning her hometown for good. She sulks under trees and yells at her beloved cousin as she contemplates her limited options. She is itching to be out of her own skin; she can’t live inside the feeling, the uncertainty. She wants to be a member of her brother’s wedding, but she knows (and now she will never not know and it’s maddening, maddening) that no relationship – with a sibling or a parent or a friend or a child, or with a body — lasts forever. As I read the book again (for the tenth time? The twentieth?), it’s the first time I’ve understood it as a stunning, quiet, perfect portrait of grief. Yesterday I tried to literally kick out of my grief, scratch my way out of it, rock away from it, scream it away, cry it out, and for the first time I understood why people cut themselves (don’t worry, friends; no intervention necessary), because none of those grieving strategies worked.
Grief. You’ve been shot into a cold orbit and released from the rocket ship without a tether or a helmet, and there’s no fancy radio (what do you call a radio in a rocket? Not a CB, certainly. A transmitter?), and nobody will answer if you call for help, anyway, and in the final humiliation your suit was swiped by a younger, better-looking astronaut and you are now naked and shivering. You’re the space-age version of the Biblical Job. Exhausted, gutted, embarrassed. All of the elements get to you. Your family is gone, your spouse has been unfaithful, your home has burned down and your children have been taken away. The other astronauts have floated off in their fancy disaster-proof suits to more glamorous moons and you were not invited. No space raft is coming along to save you. So you are alone, abandoned, weeping and gnashing your teeth (for the first time ever this phrase resonates with me); and while you’re bobbing around in your empty astro-hell, you feel, among other things, fragile, angry, helpless, terrified, and maybe, above all — unlucky. And this is the year when I’ll be thinking a lot about luck.
My parents both read When Bad Things Happen to Good People by Harold Kushner when it was a bestseller years ago (I remember seeing the book on their night stand and being intrigued by the title). Kushner, a rabbi, tells the story of his child’s death from a rare aging disease. Like Job, Kushner interrogates luck and God and he uses theology to try and understand why this situation has befallen him, why this happened to him. He’s a rabbi! He should have an in with God! He gets no answers of course, but his book struck a chord with millions of readers, if only because we are mystified by luck, even though we invoke the word frequently, and often use it thoughtlessly.
I remembered Kushner’s book in the summer of 2004, when I was living in New York. A literary agent (not mine, obviously) once read a section from my unpublished memoir and announced: “You are the unluckiest person I’ve ever met.” We were sitting in a café in Tribeca; I’d called in sick to my stupid temp job in order to meet with her (she’d called me), and had spent the subway ride feeling hopeful and nervous and fraudulent. Outside, the sidewalk was steaming, and the tangle of mid-day traffic was grating and loud. “And,” she continued, stirring a cube of sugar into her coffee, “I don’t think you’re telling the truth; I think it’s even worse than what’s written here. I can’t imagine having your life. You’ve had such bad luck.” I wish I’d skipped that meeting and used the money I would have made on a nice dinner or an overpriced pair of yoga pants. Back on the subway, I was vibrating with – among other emotions – confusion. The Kushner book came to mind; he can’t square his faith with this fact: healthy kids are running around his synagogue while his own child ages. He can’t around this bad thing that has happened to him.
Luck. What is it? Who gets it and who doesn’t and why and is it contagious (like a rash)? Does bad luck beget bad luck like that weird “so-and-so begat so-and-so” list in the Bible, a portion of which I once memorized for an exam? Can you get slotted into the lucky track and just stay put? “You’re so lucky,” we say to someone when something terrific happens. “You’ve had a streak of bad luck,” we say to someone else who crashes their car three times in one month. Lucky. It’s the title of a searing memoir by Alice Sebold. It’s an overpriced clothing brand and a silly fashion magazine. It’s everywhere, and yet it’s meaningless. Apart from being rude, all of what that woman said to me at the café in Tribeca is categorically untrue. Luck is a word (just a word) that we use to describe an event that’s already happened. We only know how it did go, in retrospect, not how it might have gone.
When we met with the geneticist about Ronan’s diagnosis, he never said the words “luck” or “fluke” to describe our situation. If he had, I would have left the room or possibly committed a violent crime. (My own congenital birth defect is extremely rare, with no explanation.) When the geneticist explained that even if both Rick and I were carriers of the Tay-Sachs gene, we had a 75% chance of having a baby without the disease, and that those were good odds that he, himself, would have betted on, I could have kissed him (I didn’t). He asked Rick and me to lift our hands, palms facing him. “You’ve got two sets of genes here,” he explained, “and there are four possible combinations.” He closed Rick’s right hand into a fist and brought it to my open-palmed right hand, and then did this several times in various combinations of palms and fists. This or this or this or this.
When I was weeping into the phone with my friend M, asking her to do a Tarot reading or a psychic reading or something anything something to stop the world from spinning, to give me hope, as I wailed about being unlucky and that I had ALL the tests except this one that they said we didn’t need and that this was my worst nightmare come to life and I’ve had enough shit to deal with and what are the odds and how will I ever trust anything again and why why why and help me help me help me she gently reminded me that I’d had a lot of good luck as well.
After I was mugged in Jersey City, the cop who drove me home got a call on his radio. “Someone just got stabbed a few blocks from where you were,” he said. “She’s dead. You’re lucky, sister.” When I decided to hitchhike in order to save money (?) while traveling in Ireland, I got in two cars different cars with two different drunk drivers; rode in the back of a van driven by an older man who was very high and asked me if I wanted to elope in Scotland (I did not); and my final lift was with a shady-seeming twenty-something Australian who asked me, when it was just the two of us in the car on a dark road in the west of Ireland and I was (now, finally, stupidly) a bit scared: “Are you a gypsy wanderer from the land of Nar?” “Of course,” I stuttered, thinking Nar sounded kind of badass, and that maybe he’d be afraid of me. “That’s so fucking brilliant,” he drawled, and left me off in Galway, untouched. I could go on. Would I have been unlucky had I been raped or murdered or harmed in any of these situations? Is bad luck like a mist that falls on you or a blizzard you stumble into when the sky is otherwise clear?
The geneticist told us that if each of us had our DNA analyzed, we’d freak out; we’d be horrified by the many possibilities that may await us next year, in a decade, tomorrow, next week, a moment from now. “So, it’s about luck,” I said. “No,” he said. “It’s life. Any of us, at any moment, could manifest something we don’t expect.” And that’s just what’s hiding in our genes. I’ve had plenty of middle-of-the-night conversations with friends in medical school who are convinced that they have colon cancer, or possibly flesh-eating disease, and then they call back twenty minutes later worried that they are manifesting symptoms of paranoia, which could in turn point to any number of mental illnesses, but did I think they were just being…paranoid? The list of woes is long, endless even. And then there are the dangers and horrors lurking in this truly cracked and cracked-up world: shooters at political rallies, teenagers shooting their classmates, hate crimes and war crimes and war. Hurricanes and tsunamis. And yes, that proverbial bus that might hit you some morning when you step into the street. We don’t and cannot know what’s coming at us in this huge, loose world. All bets are, quite literally, off.
I think I have misunderstood the concept of luck by believing it exists. I didn’t need to fumble around for an answer in that Tribeca café years ago; I don’t need to feel like I’m cursed because Ronan has a terminal disease; I’m long past caring what people think about my own disability and what may have caused it. We talk about luck, I think, because it makes us feel blessed (another troublesome, annoyingly “folksy” word that is spoken by a character, at some point, in every episode of Little House on the Prairie). Saying “I’m so lucky” might feel to some like a priestly incantation, some kind of protective spell that makes people feel like they’re standing on solid ground while the unlucky folks within shouting distance squirm around in the quicksand with their cancer and diseases and dying babies, but life – not luck – will find you anyway. “I’m lucky,” feels, to me, almost mean-spirited. It is not thankfulness, but congratulatory, as if bad luck were a mischievous old gossipy lady with bad breath and kleptomania who you, super smartypants you, were wise enough to kick out of your house before she slipped the family jewels into her big ugly purse while everyone else was stupid enough to let her in and feed her expensive chocolates (like poor old Miriam in Truman Capote’s masterful story) and get completely fleeced. Lucky vs. unlucky. The division isn’t as simple as it seems.
My friend C makes art that looks fragile (each feather of a bird’s paper wing cut by hand; a transparent cone that spins images around you when you stand inside it), but is fierce (all of those feathers accumulate to a deep thickness; the drawings moving past you are delicately drawn and exquisitely detailed, but when you see them twice and then again and one more time, you notice that the arms of the little girls are muscled and sinewy; you see a woman hanging upside-down from the bars of a jungle gym in a moment of play, but her legs are strong and swinging). This juxtaposition in C’s work has always elicited in me a feeling of great wonder that borders on disbelief. How do these opposing elements and emotions coexist in the same physical space? And why does it feel so achingly true? A few winters ago she showed me a slideshow of her work. I’d experienced individual prints and sculptures and pieces while we were both residents at the Fine Arts Work Center in Provincetown (and, impossibly, the only two “members” of the snow shoveling crew in a winter when 50 – yes, 50 – inches of snow got dumped on the Cape), but I’d never seen the story of its evolution.
Amazement is a rare experience, but sitting on that couch in a Jersey City apartment on a cold March afternoon, I was truly amazed by what my friend had been up to for the past decade. I remember one piece in particular. A full wall of yellow bricks made of the thinnest, most easily breakable paper, hung so that natural light fell through them, lit them up. They looked solid, like bricks of gold, non-negotiable. But when the viewer moved – just that slight disturbance of the air, just that, a smell step forward, a shrug of one shoulder – the bricks would shimmy and shift and shake and then be still again. The viewer was left to stand in that moment, trying to work out how to move, what to believe, when everything, always, can shift. The wonder this evokes – delicate and dangerous – is, I believe, at the heart of human experience. It makes luck look ridiculous.
I’ve been haunted this week by a scene from the film The Curious Case of Benjamin Button. Unlike Kushner’s child, Button was born an old man, but he, too, is aging back to death. That’s some pretty crappy luck, if you’re going to understand it that way, and his lover, too, was jilted out of a lifetime with him – as she grew old and gray and tired, he grew young and strong and super hot (he turned into Brad Pitt). I am not a huge fan of the film – it feels a bit Forrest Gump-ish in parts — but I’ve bee unable to forget the scene when the exquisite Cate Blanchett is rocking her former lover, now a baby, to sleep. The suggestion is that she’ll rock him until he fades completely, until he’s gone. The light is soft and natural, and she rocks and rocks. She can’t go anywhere, she can’t escape that moment or the next one, or the final one; she can only rock and wait and be. She’s not angry, like Frankie. She’s gone beyond that feeling and her face is calm but anguished. It’s not easy for her to sit there. In fact it’s the hardest thing she’ll ever do. Her beloved is no longer hers, and she is no longer his. They are slipping apart. The world is loose and turning and jagged and awful and she can feel it, it won’t stop, nobody can stop it and it’s happening so quickly and her touch is gentle, yes, and her words are soft, of course, and she looks broken and she is, her heart is beating fire, but she still smiles at the baby as she rocks him. In this smallest of moments she is beyond luck or its lies. She sings, and her voice doesn’t break. Because this is not the time to be fragile. This is the time to be fierce.