March 15th, 2019

March 15th, 2019

Scrubbed and Waiting

by Cathy Warner

Clair ignored her cough when it first came on at Christmas, a gift from her niece’s toddler, Sam. After New Year’s everyone at the yarn shop where she worked part-time was sick, and cough drops were her constant companion. February came with early heat and trees blossomed, the wind kicked up, pollen coated car windshields, and Clair was sure her wheezing was allergies, her shortness of breath the consequence of a sedentary winter. When the winds died, Clair, hoping the fresh air would perk her up, set out to turn her compost and mulch the garden beds, and found herself leaning against her shovel, struggling for breath.

Back indoors, she spent her time knitting for Sam’s second birthday. It was her usually polite niece Amber who said, “You sound terrible,” when Clair greeted her and Sam at the car, clearly winded from walking down the driveway.

“It’s nothing, just allergies,” Clair answered, reaching to unbuckle Sam from his car seat.

But by the end of the afternoon, Clair, who at sixty had easily chased gleeful Sam around the house at Thanksgiving, sat sweating and red-faced on her garden bench, exhausted from pushing him in his Little Tikes car.

“This isn’t right,” Amber said over dinner. “You have to see a doctor.”

“It’s nothing,” Clair said as she passed a platter of chicken. “Besides, I don’t like doctors.”

She’d never had a major illness or broken bone, and after she married Larry and couldn’t get pregnant, she opted out of fertility tests, then pap smears, and later mammograms.

“It’s not nothing. You can’t breathe,” said Amber as she wiped Sam’s face. “Uncle Larry, talk some sense into her.”

Usually Larry, too, would’ve shrugged it off. Once, on a job, he fell off a ladder and broke his ribs. A storm was coming, and he had to finish stapling up the Tyvek to seal the house from weather, so he wrapped his torso in duct tape, cursed through the pain, and finished the task.

“Honey,” he said, “I think Amber’s right.”


 

“It’s nothing,” Clair repeated to her doctor a few weeks later.

But the doctor sent her for X-rays, the results of which warranted an appointment with a specialist, who ordered an MRI. The MRI resulted in a referral to a pulmonologist at Stanford University Hospital, who ordered a biopsy. After the biopsy the pulmonologist told Clair she had only twenty-five percent capacity in each lung. He wrote down his official diagnosis—idiopathic pulmonary fibrosis—and handed it to Clair. “Promise me,” he said, “that you will not look this up online.” She didn’t. But her sister Charlotte did, and called to tell her how rare and fatal the disease was.

Before her diagnosis, Clair had told herself it would be just a scare, something unusual but benign. Every time she began to worry, she reached for her knitting, needles clacking long into the night while she labored to breathe, knits and purls occupying her thoughts so they couldn’t slip down a rabbit hole.

But now the results were in and they were worse than she’d ever imagined. It was unusual, yes, but far from benign. Unless she got new lungs, her condition would kill her in a year or two. Clair wouldn’t let herself think about death. A psychologist might call it denial, but the one she was required to see in order to pursue a transplant found that among other criteria, it made her a good candidate for a transplant. Faced with a potentially fatal diagnosis, she was neither depressed nor suicidal. She had a “good social network to support her recovery”—her family and the charity knitting circle from the yarn shop—and despite her initial reluctance to seek medical care, would be “compliant with doctors’ orders.” Aside from failing lungs, Clair was healthy. Thanks to gardening, she’d gained only ten pounds since high school. She never drank because her father had been an alcoholic. She quit smoking her daily cigarette on her fortieth birthday. Twenty years later, her lungs should’ve been clear, pink, and expansive, not unyielding and shrunken. No one could say what caused them to harden or where she picked up the unidentifiable fungus growing inside them.

The pulmonologist put her on a transplant list and prescribed oxygen and steroids. He said the oxygen would help her breathe, and it did. But the tubing tangled mercilessly, and even the portable tank was so awkward when she tried to squeeze among the bins of yarn when she returned to work that she quit her job.

The steroids might slow the disease, but most likely, the pulmonologist said, they’d make Clair grouchy. He was right: her most disagreeable self emerged. She knew it’d be easier on everyone if she were sad and morose; then they could cheer her up, rather than weather her outbursts. She ought to weep, mourn the loss of her life as she knew it, feel tender emotions, but she couldn’t access them. Sometimes, at night, when she couldn’t sleep, Clair fought the urge to rip the oxygen tubes from her nose.


 

Almost forty years before, she and Larry had honeymooned in a tiny cabin on Clear Lake. Her first morning as a wife, Clair slipped out from rumpled sheets, pulled on Larry’s pajama top, and fried eggs in the kitchen. Awakened by sizzling sounds and homey smells, Larry stepped behind Clair and kissed her neck. Her breath caught as she remembered their lovemaking the night before. Later they donned bathing suits, walked to the end of the dock, and jumped into the bracing water. She gasped, gulped air, and dove under, letting her breath out in a slow bubbling stream until she touched Larry’s slippery skin and clung to him. They surfaced, sputtered, laughed.

Breath and love had been easy then.


 

These days, she was malicious with Larry, hissing despite her oxygen. “I hate you, you selfish pig,” she said more than once, knowing it wasn’t true. Larry, who owned a construction company, never went to the job site anymore. He handled the essentials by phone and left his crew to finish the house they were building so he could grocery shop, cook and clean, water and tend the garden, and ferry Clair to her appointments.

In answer to her epithets, Larry rubbed her shoulders and said, “You don’t really mean it. Remember the doctor said the steroids might have this effect.” He refused to return her anger with anything but a knowing sigh, and that in turn angered her.

“Fuck you,” she, who never swore, yelled. “I’m dying and all I wanted was a glass of iced tea. Is it really so much to ask, to die in peace with a cold glass of mint tea in my hand?”

She knew it sounded petty, but the kitchen was on the second floor, she was banished to the living room couch on the first, and Larry had been in the shower unable to hear her weak calls. “No stairs in your condition,” the pulmonologist had ordered. As if her condition were temporary, like pregnancy—something she hadn’t gotten right either.

After that, Larry made a pitcher of tea each morning and set it on a tray by the couch. He was a problem solver. He’d built their house. Four levels, each one situated to maximize the view, the light, and challenges of building on a hillside. Now he drew up remodel plans, debating between a cantilevered bedroom on the main floor or an elevator to reach their bedroom. No matter which he chose, Clair couldn’t be there during construction. Too much dust. After the transplant, he’d put his entire crew on the job while she was hospitalized recovering.

In late July, just two days after Clair moved to the top of the transplant list, the hospital called. They had lungs for her. Larry drove them through Silicon Valley in the midst of rush-hour traffic, the pace maddeningly slow. Clair couldn’t help picturing her donor’s pink lungs shriveling like burgers left on a barbeque too long. The nurses kept her all night, X-rayed and gowned, slathered in antiseptic cleanser, placid on Ativan. No one said it, but they were waiting for someone, somewhere, to die. And when that person—who matched Clair’s blood and tissue type and organ size—finally expired and the lungs were extracted, the airplane on standby had mechanical difficulties, and the lungs could not reach her in time to remain viable. Instead, they were donated to someone in geographic proximity to the dying donor, someone who, like Clair, was scrubbed and waiting.

Clair went home with her oxygen tank and fifty-foot tube. It snaked through the bottom floor of the house while she knitted and waited. She checked her oxygen saturation levels hourly and phoned them in to her doctor’s office at the end of the day. If her oxygen saturation kept dipping below ninety percent, she’d be hospitalized until the transplant, the medical assistant warned, as though Clair were being willfully disobedient. She’d rather die than live in the hospital indefinitely.

It felt like she was dying all the time. She was suffocating. Literally. Physically. Not metaphorically or cosmically. The closest she came to existential angst was tossing the detective novel she was reading at the radio in order to silence Live Like You Were Dying—the peppy country tune that spurred the terminally ill to ride mechanical bulls, mountain climb, and skydive—all which required fully functional lungs. A song written by someone who clearly wasn’t dying and hadn’t spent any time in a hospital, where the dying were threaded to machines pushing buttons to summon nurses, not pulling ripcords to free-fall.

Two months after the aborted transplant, Clair was summoned to the hospital again. The ten-hour surgery was deemed a success. Larry was at her side post-surgery in the ICU. “I love you and your Stanford certified pre-owned lungs,” he said, leaning close and kissing her.

Clair smiled, the first time in weeks.

Her sister, Charlotte, and brother-in-law, Kent, flew in from Phoenix. Kent worked in marketing; wanting to be useful, he set up a page on Caring Bridge to update Clair’s friends and the rest of their family on Clair’s progress without Clair and Larry exhausting themselves with dozens of phone calls. Over the next two weeks he and Charlotte wrote updates marveling over Clair’s progress, and when Clair felt ready they left the laptop so she could read the headlines of the daily entries of her two-week recovery, accompanied by photos with greasy hair plastered to her scalp, puffy fingers, pale skin still marked with ink where tubes had been inserted and then removed. At least the scar under her gown wasn’t visible.

Off the Ventilator! Ate Jell-O! Tubes Removed! Stood Up! Walked! The entries reminded Clair of the Christmas letters Charlotte wrote when her children were little, filled with similar minor accomplishments. Maybe they were feats for infants and toddlers, but a sixty-year-old woman?

What accomplishments were left for Clair?  Her Walked! wouldn’t lead her to her backyard bulbs and raised beds. Spores and fungi hid in the soil, waiting to attack her precious pre-owned lungs. It couldn’t be risked. She’d have to be vigilant. Stay out of wind, pollen, and smoke, away from chemicals. Wear a mask in public, on planes. Avoid crowds, colds, germs, cat scratches. Keep those lungs healthy.

The dangers weren’t only out in the world, but inside herself. To keep her body from rejecting the lungs, as if they were foreign invaders to be eradicated, Clair would take immunosuppressant drugs for the rest of her life, putting her at increased risk for infections. She suspected she wouldn’t live past sixty-five. Her doctors hadn’t said that, but Charlotte, before the transplant, had told Clair what Wikipedia had to say about long-term success. Only twenty percent of recipients survived five years.

On Clair’s last night in the hospital, Kent held the laptop in front of her, said it had a camera and he could record a message to post on Caring Bridge. What did Clair want to say to everyone?

“Nothing,” she answered.

“Aw, come on, don’t be shy,” Kent and Charlotte and Larry all responded in unison. So, Clair smoothed her unwashed hair with the palm of her hand, pulled the sleeves of the hospital gown firmly over her shoulders, stared into the computer screen and spoke.

“Hello everyone. Thank you for your kind thoughts and prayers. I appreciate them. And thank you to the woman—at least I think you’re a woman—who gave me her lungs. I hope that I will see you on the other side someday to thank you in person.” Then she slashed a finger in front of her neck and said, “Cut.”

Larry and Charlotte and Kent applauded. All three kissed her cheek and left for the evening. Later, after the night nurse checked her vitals and administered her medications, Clair closed her eyes and thought about the donor. Her donor. She placed a hand on her tender scarred chest, and felt its rise and fall. She drew a breath, a deep breath, because after nearly a year, she could breathe as deeply as she wanted to. The tubes in her nose were gone, and she had new lungs inside her body, glistening and healthy, to call her own.

And for that second chance at life, someone had died. Someone Clair would never know, but imagined to be young, beautiful, and kind. A vibrant woman, life cut tragically short. Clair wouldn’t know if the donor’s death had been illness or accident, but she did know that unlike her family, who attended her with flowers, balloons, jokes, and smiles, the people who had kept hospital vigil with the donor were somber and quiet. Now they were grieving. While Clair had been recovering, the donor’s family would’ve held a funeral, sharing memories and sympathy casseroles, writing obituaries instead of triumphs, feeling their loss in every small thing, while to Clair every small thing felt monumental. She hoped that the people who loved her lung donor might feel comforted, just a little, thinking about how generous and brave their departed one was to give herself away.

She wanted to be appropriately grateful, to live a life that would make the donor proud, to show her bequest hadn’t been wasted, even though her doctors were preparing her for a cloistered future designed to keep all threats and adventures at bay. But Clair was just an ordinary woman who hadn’t lived dramatically or selflessly. She’d been content with her small life, until her condition earned her new lungs, whether she was worthy of them or not.

How could she honor the donor? For now, the most heroic thing she could think to do was breathe.

Cathy Warner is a writer, teacher, editor, home renovator, real estate broker, and amateur photographer in the Puget Sound region. She’s written two books of poetry, Burnt Offerings and the forthcoming Home By Another Road. Her fiction, short memoir, and essays have appeared in dozens of print and online journals and several anthologies, most recently in West of the Divide. Recipient of the Steinbeck and SuRaa fiction awards, Cathy’s been nominated for the Pushcart Prize and Best American Essays. Find her at cathywarner.com, Facebook/Instagram: cathywarnerwriter and Twitter: @cathyjwarner