• Farthest Planet from the Sun

    Taryn Bowe

    Summer 2021

    Jenna met the father of the daughter with dust for bones at a rare disease conference in Milwaukee.

    “Oh God, me too,” she said to him in the hotel lobby. She’d found the father folded over his phone, researching nearby restaurants where he could score barbeque and a good, stiff drink. “I need a break from swapping hospital horror stories,” he had said.

    All day long, her nametag’s pin had pricked her beneath her blouse. Her face hurt from over-smiling in response to so many sad stories. Every parent at the conference had a child in the PICU or awaiting surgery or in the midst of discovering a new, lethal aversion to an unavoidable substance, like rubber or sweat. At lunch, Jenna had sat beside a mother who’d gone back to school to earn a PhD in biochemistry so she might cure her kid herself. Another ran ultramarathons to raise money for medical research. Everyone was a goddamn motherfucking warrior twenty-four seven, and at the end of the day, Jenna wanted to hide from these women rather than seek out their support and counsel.

    And so, during cocktail hour, she and the father—his name was Nathan—slipped away from the conference and ventured into the blustery streets. The father was tall and a little goofy. The breeze whipped his hair into scattered spikes. He stopped at a blackberry bush, plucked off several berries, ate the smushed ones, and offered Jenna an intact pair. “I never turn down free food,” he said. She plucked the fruit from his hand.

    The restaurant was called Bubba’s. The first thing they talked about was how much they missed their spouses—not at the conference but in the context of their lives. Jenna missed Mark’s appetite for outdoor adventures, the gentle way he listened, how he used to stop everything he was doing to simply look her way. The father missed his wife’s vivacious energy, being the focus of her attention, his Sleep Number mattress. He slept in his daughter’s room, surrounded by puppy posters, on purple pegasus sheets. His daughter slept in their bed beside his wife.

    “I don’t mind,” he said. “Someday, I’ll miss getting kicked out of my room, peeking in on the two of them, holding each other in the dark.”

    Moments later, their food arrived: pink platters of smoked meat.

    “When Evan first got diagnosed,” Jenna said, “we decided to divide and conquer. I quit my job and became head of medical management and everything household, and Mark got a bigger job with better insurance. He travels a lot.”

    The father loaded a pallet of french fries into his mouth. “At home, we’re all on a special diet. Helena’s not supposed to eat sugar or carbs or goddamn anything. But man, I’ve fucking missed starch.”

    “People,” Jenna said. “I’ve missed people.”

    When the waitress came, Jenna ordered a second Dark and Stormy. The father stole a cheese-smothered fry off her plate.

    “I think we made it seventeen seconds without talking about them,” he said.

    “Call the Guinness Book,” she said.

    He forked a small clump of brisket beside her collard greens and said, “Try this.”

    She chewed and he watched, his gaze unbroken. For the first time in years, she felt attractive, maybe even aglow.

    The conference didn’t end for another three days. He asked if she wanted to go out again the following night. He’d read about a sushi bar on Tripadvisor.

    She wasn’t even a seafood lover, and yet later, in bed, all she could think about was sinking her teeth into a sliver of glistening salmon while he watched with voracious attention. Back home in Albuquerque, she would have been awake and outside, pulling Evan from playground to playground in his red Radio Flyer. Because of his condition, he couldn’t leave home without protective gear until after dusk, and Jenna preferred to wait longer in case any weak UV rays lingered after the searing sunset. During the longest, brightest days of summer, they didn’t arrive at a playground until after ten, and like any seven-year-old child, once Evan got sliding, swinging, and pretending, he didn’t want to stop. Jenna spotlighted him with her flashlight and watched his twiggy body dangle from the monkey bars, his small hands scoop tunnels through the sand. She scanned the playground’s periphery for mountain lions and vagrants. But despite these vague threats, she was less deeply frightened, less deeply lonely, during these naturally dark hours than she was during the day when she home-schooled Evan within the shadows of their light-sealed home.

    When they discovered that the sushi bar was closed for renovation, Jenna and the father hit a cheap hole-in-the-wall called Fatties. Hubcaps lined the ceiling; the butcher-block tables were scratched and aged. They ordered carne asada burritos and twin cans of PBR.

    The father said, “I Googled the distance between Albuquerque and Seattle. It’s one thousand four hundred and thirty-five miles. Too bad. It would have been nice to hang out in real life. We could have had you all over for grilled veggie patties on gluten-free bread. Stayed up all night playing flashlight tag with the kiddos.”

    She imagined shining a flashlight in his face, letting the beam slip down his body. “That would have been nice,” she said.

    Afterward, they walked the sparkling streets. Lake Michigan lay at the end of East Mason, vast and boundless. Their shoulders bumped, and she inched away but then inched back.

    “Let’s dip our fingers in the water,” Jenna said, but they never got there.

    Outside a Walgreens, he grabbed hold of a shopping cart and told her to hop in.

    She crossed her arms over her chest, said, “I’m never going to do that.”

    He tilted his head to one side. He wouldn’t stop looking at her eyes, her mouth, her frown lines, her laugh lines.

    She gripped one edge of the cart, stepped up, swung over one leg, and then somehow the other. Thank God she was wearing loose pants. Soon he was jogging. He was pivoting and spinning, he was full-on sprinting, and she white-knuckled the sides, laugh-screaming, barely able to breathe. She snorted, and her hair stuck to the tears streaking her cheeks, obliterating her makeup. “Go faster,” she yelled.

    A woman unloading her purchases stopped and stared. Jenna worried about the father’s heart, his rate of panting.

    “Where do you want me to take you?” he asked when he stopped to catch his breath. They were near the parking lot’s edge.

    “The wheels lock up if you push past a certain point.”

    “Spoken like a seasoned shopping cart thief!” He began to push.

    This time, she focused on the night rushing at her, the wind inside her mouth. He ran in the direction of the parking lot’s perimeter, where the lamps threw a wash of light before a wall of dark, and when he reached the edge, he pushed past it, as if over the edge of a cliff, and the cart kept rattling forward. For several magical seconds, she no longer felt each bounce, each bump. She no longer felt the jolt of wheels clamoring over uneven earth or the clenching worry she carried every moment in her neck and teeth and shoulders. He steered the cart toward the sidewalk, his pace slowing, his breath quickening, the cart’s ragged rumbling reentering her bones.

    When he stopped, she asked if he wanted a ride.

    “Look at me,” he said.

    She turned, and he was frowning, his hand on his gut, sweat circles seeping through his shirt.

    “Come on.” She gestured to the basket where she still sat.

    “Not tonight.” He walked around to the side and held out his hand and helped her out.

    They walked back to the conference, the hotel.

    Outside the revolving door, she said, “I felt like I was fifteen again.”

    He said, “Fatties’ burritos for life.”

    She studied his face for a moment. “Thank you,” she said.

    She thought he might kiss her. The stubble he would shave tomorrow was filling in across his cheeks; some of it was brown, like the hair on his head, but other patches were white, like a message from the future. He extended a fist, and they bumped knuckles. Then he bent over and swallowed her in a rib-crushing hug, and for those long, powerful seconds, he did not say a word.

    “Same time tomorrow?” he said into her hair. “For our last supper?”

    “Where?” she asked.

    “Whatever you want.”

    She stepped back and said, “Pasta.”

    In the morning, she called Mark to hear his voice.

    “Nothing to report,” she answered when he asked about the conference.

    He was glad she was getting a break. She deserved it, he said, and it was good for him to get a taste of what it was like to be homebound. It was claustrophobic. When she asked about Evan, Mark said, “Don’t freak out. We’re doing fine. It’s only two more days. We can manage.” And, knowing something was wrong, she said, “Tell me what happened.”

    He’d found a sore on Evan’s ear. It looked like the cancers in the pamphlets, the ones they’d been warned about. He’d made an appointment with the dermatologist for later that day. Silently, Jenna began to cry. “I’m coming home now,” she said. She’d taken down the father’s number. After she got off the phone, she sent him a text. Leaving early. Family emergency. He wrote back, Travel safe. She put her phone away and packed her bag, showered. No makeup, wet hair. She felt relieved and utterly devastated. What if she’d kissed the father? What if she’d slept with him? It would have been wonderful. Then the treachery would have eaten her up. She took the airport shuttle and fought with the attendant at the ticket counter until they booked her on the next flight to Albuquerque. Let my son be okay, she prayed during the entire trip, and I’ll never desire another thing.

    Six hours later, she stepped into the dermatologist’s office and found Mark and Evan playing tic-tac-toe in seats pressed against the waiting room’s wall-length windows. Evan looked like a tiny member of a hazmat crew. A hood covered his face, and every inch of his arms and hands were encased in fabric or gloves. Sunglasses shielded his eyes. All the other patients were older, their short-sleeved shirts baring skin speckled with brown spots, their heads topped with wisps and curls of graying hair. When Jenna hugged her boy, she smelled the layers of fabric more than she smelled his sandstone scent.

    “I ate radon for breakfast,” he said from beneath his gear.

    Jenna glanced at Mark, who nodded his head to confirm this was the new alter-ego their son was adopting in public so he wouldn’t have to play the role of the weird, hooded boy allergic to light.

    “How’d it taste?” Jenna asked.

    He said, “I’m growing a third arm.”

    She pretended to search for it so she could feel his squirmy body.

    His complications had started when he was six months old. Just over an hour into a road trip to Scottsdale, Mark had pulled over for gas in San Fidel, and Jenna had gone around back to check on Evan, harnessed into his rear-facing seat. His swollen lips had split apart. Blisters had erupted across his cheeks. A pouch of dead skin hung off his forehead, exposing a slash of scarlet tissue below. His body appeared skinless, oozy. Jenna was afraid to touch him, her only child, lest she hurt him, afraid that something volcanic inside him might roar up and hurt her. She stared into his pupils and screamed her husband’s name.

    In the San Mateo ER, Evan was treated for second and third-degree burns. His neck was disinfected and dressed with gauze. Skin grafts were applied to his cheeks and forehead. A steady stream of intravenous fluids was fed into his veins. Jenna sang him every lullaby she’d ever learned, “Edelweiss” and “Sweet Baby James,” her voice cracking. She wished he could talk. She wanted to know how scared he’d been, how much it had hurt, why he hadn’t hollered or wailed for her. Countless scans and tests followed. The blood draws and spit swabs. The inconclusive results. When the burns showed signs of healing, the doctors discharged him.

    Months later, after a short walk for ice cream triggered burns across Evan’s scalp, Jenna took him to UNM Children’s where a skin specialist diagnosed him with a rare genetic disorder. Xeroderma pigmentosum, it was called. XP for short. Minutes of UV exposure could cause life-threatening burns. Even sunlight through tinted windows could permanently dismantle his DNA. Evan had a 50 percent chance of developing skin cancer before he turned ten. Also likely were eye cancer, lip cancer, and cancer of the tip of the tongue. There was no cure, only management— avoidance of sunlight, protective gear at all times of day.

    Now the cancers had started to come. They hadn’t even waited until Evan reached double digits. This one was a squamous cell. Riding home from the dermatologist’s office, Jenna sat in the back beside her son and counted the folds of the hood he wore to shield his face from the daylight seeping in through the tinted windows. It was a way of focusing her attention on the present moment. The point, she repeated in her mind, was to catch the cancers before they sank in their teeth. Skin checks every day. This one was shallow, would be scraped off tomorrow. But, in a matter of time, the dermatologist had warned, more would appear. “Like mold on bread.”

    They went through the drive-thru at McDonalds. For a treat, Evan got a Happy Meal. The cheap prize broke in half.

    Taryn Bowe’s recent work has appeared in Bellevue Literary Review and Joyland. She lives in Maine where she is the associate director at Maine Writers & Publishers Alliance.

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