The beloved expresses a possible world unknown to us…that must be deciphered.

Rivka Galchen, Atmospheric Disturbances

Today I found myself in a world unknown to me: Saturday afternoon poolside culture at the Riviera Resort & Spa in Palm Springs. I’m here to talk to MFA students about creative nonfiction. That’s tomorrow morning. This afternoon I’m sitting at the poolside cabana bar - people watching, typing, sending cell phone snapshots of palm trees and lounge chairs to my friends at home in Santa Fe, New Mexico, with captions like Hard at work in PS!

Every twenty seconds a cool, eucalyptus-scented mist drifts down to the table like cold smoke blown from an invisible vent. It is warm in the shade, although not uncomfortably so, with a breeze that alternates between moving gently over my over-dressed (read: dressed) shoulders, and blowing hard enough to sweep my notes under a neighboring table. “Uh, sorry,” I say, and grope around near sandaled feet to collect my papers off the ground. The woman perched on a stool in front of me has a giant black bow draped across the top of her butt. Her boyfriend (well, he’s got his hand on the bow, but one never knows) is wearing an LA Lakers jersey. Tattoos abound; tattoos are cool among the 18-35 set. I wouldn’t be out here, my artificial leg has endowed me with a deep phobia of public pools, but the peppy music is unavoidable and overwhelming, even from the desk in my room, so I figured I might as well get some vitamin D and drink an overpriced mojito if concentration is going to be this difficult no matter what. I have brought my computer to a beach party, a move that is nerdy enough (thankfully) to render me invisible. I have work to do but all I can think about is that I am a mother and my son is dying. My baby is dying. Ronan is dying. He is fourteen months old. Next June my son could be dead.  Next June I might be at his funeral. I know I’ll still be in therapy. Or maybe Ronan will still be alive, sitting in my lap. Maybe I will have abandoned an  endlessly discussed plan not to intervene and to let him “die naturally,” and outfitted him instead with a feeding tube, a chest vest, a catheter. What am I doing here? Making money, I remind myself. Making a living. Who am I? My baby is dying. I am absurd and out of place, but here, at the pool, distraction is everywhere. Frivolity: everywhere. I am mercifully lost in it for one moment.

To my embarrassment, I recognize every song blaring out over the pool from the unseen stereo: from Zumba, a spin class, an Irish nightclub in the 90s. When I hear I like to move it, move it, I’m back in pre-European Union Dublin, drinking a lukewarm vodka cocktail from a plastic cup, wearing fake leather pants and a tight black t-shirt, dancing under a disco ball. One bad bubble gum song floats into another.

Don’t stop keep it moving put your drinks up

Palm Springs appears to be the vacation destination for the following folks:

-Gen-exers who grew up watching MTV spring break dance parties and are re-living a life they never truly lived (pitchers of colorful booze; sun-soaked afternoons; giddy group photos under palm trees; poolside booty-shaking good enough for a B-grade music video).

-drag queens (a group? A gaggle? A herd?) in various states of inebriation and undress or overdress. I’m so fucked up! A man wearing a blond wig and a cheerleading costume confesses to me.

-Christian couples who pray loudly over egg white omelets and black coffee at the poolside breakfast buffet.

-Men wearing golf shorts and plastic visors who sit at the bar and look alternately confused and delighted as they lady-watch the nearly-bare bodies of girls young enough to be their daughters.

-Writers like me and the other 70-odd MFA students gathered at this resort to learn about writing!

-Women who seem to have inadvertently (or intentionally) purchased the same fedora hat (pale straw with a thick black ribbon) like the ones I once coveted at a Los Angeles farmer’s market three blocks from my old apartment where Ronan took the first naps of his life in his swing chair (aka “the throne”).

The logo of the Bikini Bar is, of course, a heart-shaped, lip-like bikini bottom. Bodies, bodies, bodies everywhere: dancing, swaying, drinking, eating, singing, looking, hugging, pulling swimsuits up or out or away from different cracks and attempting to remove unflattering angles. Bodies walking without thinking, brains thinking without worrying about it. All of these normal bodies, and others as well: a man using a wheelchair speeds across the hot asphalt walkway circling the pool. A stick-thin woman with sunglasses twice as big as her face swans through the shaded tables, heading for the bar, all male eyes on her. She executes a professional quality hair flip and asks for a strawberry mash martini.

Whoop! There it is! I watch the man take his wallet from his back pocket with one hand and extend his other hand to the woman in the sunglasses. His name is Bob.

Where am I? Why am I here?

When I was in divinity school in Boston, a guy I’d known in college asked if he could stay with me while he interviewed at hospitals for his upcoming surgical residency. I had an open door policy in the third-floor walk up on Cherokee Street (pronounced Cher-OH-kee by the folks in the neighborhood). In the morning as he poured himself a bowl of cereal, he asked me, “Was that you crawling to the bathroom in the middle of the night?” Without waiting for a response, he continued, “you looked like a cockroach!” I felt my whole body go hot, and he was laughing, so I laughed, too, and we sat and crunched our cereal and watched the news in silence; but later, as I waited in front of Our Lady of Perpetual Help Cathedral in the mid-morning cold for the 66 bus that would take me to Harvard Square, I felt the beginning of a headache, and then tears threatening to edge their way out. Milk and All Bran roiled in my stomach. A cockroach? I climbed onto the bus, put my head against the cold window and closed my eyes. I didn’t want to look at a single human form. In the middle of the night I’d forgotten he was sleeping on the crappy futon in the living room; I’d forgotten to put on my leg before walking to the bathroom; I’d made a mistake, put myself on the outside of normal. How old is your baby? People ask me at the store. Is he walking yet?

This time, baby, I’ll be bullet proof

I worked at a bar in Boston while I was in divinity school, but it had nothing to do with bikinis. The bar was dark oak, the walls exposed brick. I poured pints of beer while scanning verbs for a French exam or paragraphs I needed to understand for a philosophy paper, my books and photocopied packets propped up under the bar. In the winter people sat by the fire as the latest Nor’easter raged outside, once burying the trolley completely, everyone watching, saying wow as something they stepped into every morning on the way to work, a thing that seemed so solid and certain and inevitable – this is my stop – gradually disappeared under a curtain of snow. In the summer customers tripped through the front door, sweating and panting and lifting their faces to the air-conditioning vents. The windows steamed in every season. I wore black turtlenecks, baggy jeans, black combat boots, about three hundred coats of mascara and the brightest red lipstick I could manage without looking like I should be standing on a street corner instead of behind a bar. In Palm Springs, the Bikini Bar waitresses tuck check folders into the backs of their bikinis and the only thing on their face is a pair of sunglasses. They are fit and tanned and make-up free. I envy them; their freedom, their bodies, their lives.

You must not know about me. I can have another you in a minute. In fact he’ll be here in a minute, baby

Where have I landed?

The world is at war. My child is dying. The world is at war. My baby is dying. And I want to be that woman at the bar in the three hundred dollar sunglasses. I want someone to buy me a sweet drink. I want to be twenty-three again, in Boston, studying for a Hegel final on my dinner break. I want everything to be theoretical. I want to sing along to the bad music in my tiny bikini, not thinking not thinking not thinking.

Somebody call 911, shiny fire burning on the dance floor whoa oh oh oh

Last night, in a dream, I wake up on a beach to find that both of my children have gone missing. I shake sand from my hair and blink into the sinking sun. The waves are gentle and sparkling in the gentle, fading light. I’m not worried, as I have not yet scanned the length of the beach, and the non-dream-me is surprised and happy that there are two kids – Ronan and a little girl, Rose. The dream-me panics when she realizes that the dream kids are truly gone. My friend’s child (a friend with no name, a child with no name) falls on the beach in front of me like a bird shot out of the sky and I lift him up, unharmed, when he holds his arms out to me and speaks to me in Ronan’s voice, a voice I’ll never hear, saying “up.” I walk along the beach with this strange child on my hip, looking for child-sized footprints and calling for Ronan and Rose. “What does she look like?” I ask the child that fell from the sky. “Bah bah bah,” he babbles.

This is just a love story, baby just say yes

Cut to a movie theater. A man with cold hands is sitting next to me and we are watching a film about disability that nobody understands because we are in Croatia and the movie is in French. He puts his hand on my bare leg. A woman walks into the theater wearing a scarlet colored bikini and she looks normal until she takes her leg off, throws it at the screen, and props her stump on the back of the chair in front of her, as if all along a different body had been waiting inside her regular body, watching and walking along just underneath the skin, suddenly bursting out when given an opportunity. Everyone is eating popcorn, jaws grinding, lips glittering with salt. All of the men suddenly disappear.

What world is this?

I hated public pools because they made me anxious. They still make me anxious. What to do with the leg? What about all the stares? There was that freakish body waiting to be revealed, another body inside the body that everybody assumed was mine. Fearing the reveal, the sense of exposure, the knowledge that you are set apart, the press of that void. And now Ronan, the way people look at him, whisper about him behind their hands, avert their eyes, wonder why he doesn’t walk or speak or see. In the grocery store I hope that nobody will ask me questions, that nobody will engage with this mom and her baby, that we can be, in somebody’s eyes if not our own, normal.

Sweet dreams are made of this, who am I to disagree

Before I came to Palm Springs Ronan and I drove from our home in Santa Fe to Wyoming to see my parents. On the way back to New Mexico, having just pulled out onto the interstate, heading south, I heard a buzzing sound. In the rearview mirror I saw a lean, yellow-and-black wasp bouncing around near the back window. Terrified, I pulled off at the next truck stop and tried to kill it: with Ronan’s favorite book (Fishy Tales), with a pen, with a shoe. I tried to coax him out by shouting, as if I might insult this insect out of my car. No luck. The wasp, tucked into the crease between the window and the car door, eyed me with his black pointed face, his slick body quivering, stinger pulsing and at the ready. My eye on the wasp, I carefully unstrapped Ronan from his car seat, my heart beating, hands shaking, strapped him into the front carrier, and marched across the parking lot to the diesel pumps. I’ve driven across country many times, most times with a dog or a parent, sometimes with a dog plus a parent, but much of the time on my own. I knew who could solve this problem, so I waited patiently (only about ten minutes) for a truck driver to arrive. “Hi,” I said brightly as this stranger, bleary-eyed and wearing wrinkled shorts, stepped out of his cab. Ronan let out an accompanying squawk. “Can you kill a wasp?” He could (with a napkin, in less than two seconds) and was happy to do so. “Got it,” he said, and proudly showed me the evidence, the wasp’s crushed face, his stinger lying limp and disarmed. The dead bug body thrown on the asphalt like a cheap jewel cast aside. I gushed appropriately, truly grateful. He didn’t ask me about Ronan – his age, why he looked so sleepy, if he was talking yet. He just helped us and moved on.

C’mon ride the train, and ride it. C’mon ride the train (it’s the choo choo train)

For part of that trip back to Santa Fe we were driving alongside a train, past abandoned buildings along the highway that looked as soft as construction paper, the doorways like wet and rotting mouths. I love driving alongside a moving train. It makes me feel as if I can outrun something – a feeling, a person, a situation, a mood. Ronan gurgled in the seat behind me. I thought forward months, years. I pictured myself standing in a grove of aspen trees, releasing his ashes into the air. I reached behind me and put my hand on his knee. In Palm Springs there is nothing to reach for except the bare bottoms jostling at the bar, stripes of sunburn visible beneath the swimsuit straps, words from a conversation that distract me momentarily from the blasting music.

“You know what? There’s another pool that’s less crowded.” “Is there drinks there, too?”

During the last hour of that drive to Santa Fe, Ronan started to scream – I watched the fat tears rolling down his face in the baby mirror. Four hours is his limit for amicability during car trips, and we were entering hour five. The wasp had us running late. “It’s okay, guy,” I said. I wanted him to see me, to listen and understand as I explained to him that I was sorry, and if he could just hold on a little bit longer we would be home very soon. If only that mirror reflected the baby that I sense is behind the other baby with movements and thoughts and a life story that is not dictated by Tay-Sachs, this one part of his genetics that trumps all others. In his body, behind the other baby, is this unaffected baby. I would make every kind of deal with the devil to have a glimpse of him.

I’d like to welcome everybody to the wild wild west

In Las Vegas, New Mexico, only an hour left on the journey, I sat in front of a mobile home/“antique” store (the stuff looked old and used-up rather than antique), and watched a few men drink beer in front of the gas station at 11 am. I fed Ronan in the driver’s seat, the sun combing through his eyelashes, fuzzing his blondish hair at the edges, warming the curls that are growing longer and bouncier at the back of his head. “The thing is,” I said to him, “I just don’t want you to die.” He slurped down his bottle and sat happily in my lap in a square of sunshine. “I love you,” I said. He looked at his hand and waved his fingers at himself, amused. The women at the Bikini Bar wave to one another, comb fingers through their hair, pull credit cards and cash from their swimming suit bands. The movement is effortless, easy.

You might as well face it you’re addicted to love

During that last hour in the car, I started crying, too. Who knows what we really see of the world? I have to believe we truly are “seeing through a glass, darkly” as St. Paul promised, that we will, one day, see things as they truly are. Which is what?

I like the way you work it (yo diggity)

Can you solve the problem of the body with the mind? Or is it this: having a body, being in the body, is like being roped to a sick cat. (Margaret Atwood, The Robber Bride) What is the body without the mind? What does Ronan know of his body, these hands feet arms legs neck and face?

Scientists are searching for particles, according to the physicist who sat next to me on the shuttle to the airport on the way to Palm Springs two days ago, but they are named by people who don’t believe they’ll be discovered – names that are meant to sound like jokes, jeers. Up, Down. Truth and Beauty. These monikers are so catchy that when the particles are actually located, the scientists who’ve been diligently searching and believing in their existence are stuck with names created by nonbelievers. Says the physicist to the Russian translator sitting in the front seat: “Eventually mass, if it lives long enough, decides what kind of mass it wants to be.”

Dance the night away

If I wanted to, perhaps I could brazenly don a bikini and throw my leg to an inebriated middle-aged man with a paunch, a sunburn and a surgically enhanced wife, dive into the pool, and just trust that he would guard my 50,000 dollar piece of “durable medical equipment” with his life. I could touch the scar across my belly without wanting to go underwater and never come up. I could take Ronan with me. We could dive deeper and deeper and deeper and never come up.

Girl, your booty is so round

I have been practicing yoga with my hands down, pressed to the mat or the floor. We’re supposed to put our hands up in supplication, ready to accept what the universe has to offer. Frankly, I don’t want to know. Stay in the moment, we’re told. I wrangle with it – it’s all that Ronan knows, so I must stay there with him, but all I want to do is escape. I wish someone would sit next to me and buy me a drink. I’d change my name, my story, pretend to be somebody else.

Boom boom boom let me hear you say hey-oh, hey-oh

The first thing everyone notices when visiting Santa Fe is that everything is beige – the buildings, the ground, the land. The shuttle driver tells us that when he grew up on Fiesta Street – “on the wrong side of the arroyo” – the center of town was painted in bright colors – red and blue and yellow – and when the ordinance was put into place, everything “went brown.” He pauses, chuckles. “They thought it was a marketing tool, the uniformity. They painted over the colors.”  Everyone is quiet. The road hums merrily beneath us. “Tay-Sachs is like a slow fade,” other parents have told me, as if a baby suddenly went from a mosaic of vibrant colors to a uniform brown. What does it mean? Palm Springs is full of fluffy green palm trees, imported from another country, a different land; beige land blooming with flamboyant flowers; hot sunsets fizzing at the horizon.

Hey now hey now hear what I say now happiness is just around the corner

“It will get better,” people say about the grief, about the loss of a child, but that doesn’t mean it will. It seems a uniquely American notion to believe that things can get better with hard work and a good attitude. The boot-strap myth for bodies. In Geneva I worked with a man from Liberia. The minute he arrived he was quarantined for six weeks with tuberculosis, and after a few short months working for us he returned home and was murdered. Things don’t always work out. Is it ridiculous and unfounded optimism to assume that they will (most babies are fine; most mothers don’t die in childbirth; most children live past the age of three)? Is it shortsighted and self-indulgent doom-and-gloom to think that they won’t? 

You have my heart and soul oh oh oh 

Weather floats like water, memory is like weather, all these ripple effects, all these atmospheric changes bumping into one another, creating disturbances, disconnect, serendipity, so then, finally – connection?

I want to be a victim; I’m ready for abduction.

I watch a man with gray hair and skin creased in delicate patterns fall asleep by the pool. The way his hair curls tightly at the nape of his neck reminds me of Ronan’s when we take him to the therapy pool. How many boys and teenagers and old men will I meet that remind me of my son? I want there to be another universe where he lives to be one of those boys who grows into one of those men who falls asleep and lets the New York Times fall over his hands gently, as if he were folding the paper like a blanket before setting it aside. His head nods over an advertisement of a woman wearing a great, square sparkling rock on her ring finger. Protests squelched in Iraq. The economy in Yemen on the verge of collapse. Soldiers killed in Pakistan. He’s tired out by all the bad news.

Can’t read my can’t read my oh you can’t read-a my poker face

“He won’t suffer.” This is what we’re told about Ronan’s condition. But there will be blindness, seizures, paralysis, deafness, death. He won’t be able to see or move. At some point he will not be able to swallow. All around me, all of these people drinking drinking drinking gin and cucumber tonics, strawberry vodka drinks, sweet mojitos, “signature” strawberry margaritas, pitchers of beer. His body will be in a state of insurrection. “Vegetative states” sounds like suffering to me. It feels like a betrayal.

Everybody throw your hands in the air

I don’t need three wishes, just one. I would watch my son grow up.

Don’t you want me, baby? Don’t you want me, ohhhhh

I’m always five minutes, maybe just five seconds behind that other baby, that boy, that man, that other body behind my own body that made Ronan’s body. Palm fronds sway soundlessly above my head.

The body, the body, the body. Why is it such a riddle? Why such a trap?

A sort of fairytale with you

I order another cosmopolitan and press my lips to the cool, sweet glass. I avoid looking at the old man snoozing by the pool, out of place with all these drunk and braying young people. I can’t want to cry into my lap each time I see someone who looks like someone Ronan might have become. Neon green towels are draped over the pool chairs. I finger my locket with a strand of my son’s hair literally locked inside. A silver box full of holy dirt hangs from the silk string around my neck. Somebody drags a little girl with a sagging ponytail past the Bikini Bar, she looks swollen and sunburned and miserable. Skinny or fat, paunchy or six-packed, round butt or no butt, enhancements or not, everyone by this pool at the base of these mountains will, someday, die. What a simple world that revolves around how you look in your bikini (hopefully hot) and whether or not the dude at the end of the bar is going to buy you a shot! Or is it? We are all complicated people moving through a complicated world – most of the time the world gives us easy solutions, simple answers, and other times it makes things more complicated, and the answers become more nuanced, harder to unravel.

Pretty pretty please, don’t you ever ever feel like you’re nothing less than perfect

Who knows what kind of matter we might become? Who can tell what shapes we might make with our bodies, our minds, our hearts? I hold my son’s body, the warm, solid weight of him. He opens his mouth and makes a sound like a dinosaur; sometimes he growls. Sometimes he squeals. He still smiles. He still laughs. I can happily claim him and he was given to me although he is not mine. Ronan, where are you going? Where will I go when you are gone? I would like to choose my afterlife. You would be the only person in it, the only living thing, the room bare-walled and stripped of all other post-life life.

Tonight through the thin walls between rooms I can hear girls discussing what to wear to the bar. They shout to one another over the howl of a hairdryer. I hear shoes hitting the floor – no, no, not those. Someone keeps knocking on their door and I keep calling out “Hello?” as if I’m expecting someone. A clatter of hangers in a closet. Squeals. These sounds of female intimacy are comforting to me, known to me, girls talking and putting on eyeliner and smoothing down skirts and trying to decide what to wear; girls talking to one another over shoulders, reaching over arms and laps for brushes and lotion, asking to borrow a purse, a jacket, a favorite pair of jeans, a particular tube of lipstick. Standing around, trying on a variety of looks, experimenting with the idea of having a different body through the clothes of a friend, asking do you think I should do this with my hair? before demonstrating the style, and the other girl might cock her head as she sits, perched on the edge of the bed or a chair, watching her friend in the body she knows and recognizes, that is unique to her, that is her in some way, or a part of her, trying to help her feel good in her skin, to feel good in the world, even if the world is as small as the poolside area around the Bikini Bar. Girls stepping into cool closets full of recognizable items (that’s her favorite $5 shirt from the thrift store; I’ve worn those skinny jeans; I gave her that blue scarf), rooting through suitcases, sorting through jewelry boxes and offering advice. Wear what makes you feel like you. That muted wonder of peering into a friend’s closet and helping them select clothes, an act almost as tender as dressing a child, and just as intimate. And then, out of nowhere, I don’t feel betrayed anymore, but unaccountably grateful. YOWZA, that looks good, one girl says to another. You look so good in that! Finally dressed, they slam the hotel door and parade by my room on their way to the Bikini Bar, the problems of their particular bodies, at least for tonight, solved. 

Who knows what will happen to those girls? You are so cuuuute! What betrayals, bodily or otherwise, will these girls meet now, in the future, at another’s hands or maybe at their own? But as I open my door to watch them go, tripping down the hallway in their heels and short halter dresses and glossy, gleaming hair, I see one of them brush the hand of the other. The world of the beloved is always a small one, and it is often object-oriented – a lock of hair, a favorite shoe, a ring that was a gift – and sometimes it can be deciphered, decoded. The girl turns to the friend who touched her and smiles. Frank Sinatra croons from the speakers now: come fly with me.

And then, at the end of the hallway, under a faux-glass chandelier, her answering gesture reflected in the mirrors lining all of the resort corridors, this moment of magic, so clearly understood by any witness, so easy to decipher: the girl slings her bare arm around her friend’s gleaming shoulders and pulls her close.

I step back into my room to find a picture message from Ronan’s father. Ronan stands upright in his bouncer. There is spittle on his lip. I can see his rubber band wrist on the hand reaching out for his father’s face, his voice. His skin looks doughy and sweaty and familiar. The body: always a riddle to solve. Always, in some ways, a problem. And sometimes, to the person who loves that body so much more than her own, a gift.