|I Might Not Be There|
|I Might Not Be There|
Early in the morning of November 27, 2001, before anyone knew she was awake, twenty-year-old Laura Rothenberg lay in bed listening to an ominous wheeze in her chest. "I am sick," she wrote. "The future is more uncertain than ever."
Almost a year before, having spent her entire life fighting cystic fibrosis (CF), she’d decided on a last drastic attempt to beat the disease: a double lung transplant. She’d put herself on a waiting list for lungs and had temporarily withdrawn from Brown; then she and her parents had set up housekeeping in an apartment in Brookline, Massachusetts, near Children’s Hospital Boston, where the transplant would take place.
And there she’d waited. Winter gave way to spring and spring to summer. To mark the passing days, Laura had folded origami cranes; she’d knitted hats and scarves and cheered runners in the Boston Marathon. When loneliness got to her, she’d sent mass e-mails and left teary messages on friends’ answering machines. In July she’d finally received the call from the transplant coordinator. Her family and friends had raced to Boston, packing the waiting room as they sent her off to her new life.
Laura’s recovery proved both painful and frustrating; she’d traded in the old familiar disease for a host of new ones. The transplant left her fully diabetic, requiring her to count carbohydrates and give herself insulin. To prevent her body from rejecting her new lungs, her doctor prescribed the immunosuppressant Neoral—inch-long pills that smell like skunk; she had to take twelve of them, twice a day. (To make sure her doctor understood just what he was asking her to swallow, she gift-wrapped one in a Tiffany box for him.) The drug nauseated her and raised her blood pressure. "Trembling hands so it’s hard to give myself insulin," she wrote, August 11, in what would become her memoir. "At one point my arm starts to shake. Overnight I’d had diarrhea again. We buy Depends for overnight. Great. Now I’m wearing diapers." Plus, the steroids she took puffed up her face; she’d anticipated that, worrying as well that they’d cause extra hair growth and that no guy would fall in love with "a hairy coconut head." That complication, at least, she was spared.
But there were others: the night after Laura was permitted to register for courses back at Brown, she began suffering intense abdominal pain. Her doctors discovered a small bowel obstruction, which meant hours of surgery—and more recovery time. "If you ever have to choose between thoracic and abdominal surgery," she advised her friend Kat Fourcier ’03, "always go for thoracic."
The news got worse. Biopsies of nodules on Laura’s lungs revealed PTLD, post-transplant lymphoproliferative disease, a form of lymphoma caused by immunosuppression. Still, she managed to take a class at Brown, shuttling all semester between the University and the hospital, where she was anaesthetized weekly for bronchoscopies to open her airways, which were narrowing with fibrous tissue. Her pulmonary function test results (pfts—the measure of her lung capacity) dropped. In October, her doctors began to suspect chronic rejection. "Not what we were hoping for," Laura wrote in a mass e-mail to her friends. If the doctors were right, and her body really did reject her new lungs, all she could hope for was time.
AS SHE LAY in the early morning quiet in November, Laura wrote: "I guess the question now is, How do I accept where I am and make do and not feel like my life is inadequate? … I tried the transplant to get back there, back to school. It didn’t do that for me. But it has extended my life. And the trick now is to find a purpose for myself."
To open her airways, her doctors tried stents, and her pfts improved markedly, which indicated that chronic rejection was not the problem. So Laura threw herself back into school. She took English and political science. She lectured about living with chronic illness. In writing classes, she worked on a memoir of her transplant, Breathing For a Living, which was published shortly after her death, and from which most of her quotes in this article are taken. Joe Richman, a radio producer, lent her a tape recorder and over two years Laura recorded more than forty hours of tape. The result, "My So-Called Lungs," was broadcast on National Public Radio in August 2002. Her unsparing and un–self-pitying voice left listeners parked in their driveways, holding back tears.
But none of these achievements came easy. That spring Laura began to suffer panic attacks so violent she’d hyperventilate, which caused her blood-oxygen level to plummet. Alarmed, emergency room staff would put her in intensive care. It took months to determine which of her many medications was causing the attacks. At one point, Laura wrote in her memoir, "The jackass neurologist told me it was stress and that I really should see a psychiatrist.… He will not be getting a Team Laura T-shirt!!!!" That semester her roommate, Abby Logan ’03, wound up driving her to the emergency room repeatedly—including one 3:30 a.m. trip to Boston with another bowel obstruction.
BY ALL ACCOUNTS, Laura was a connoisseur of the art of friendship. From her first week of life, when she was diagnosed with cystic fibrosis, she began making fans, and deep friends, of the doctors and nurses who cared for her. As she grew up, she met their families, went to dinner with them, attended their weddings, and sent their children presents. When her parents gave her a high school graduation party, her father, Jon Rothenberg, a doctor himself, was surprised to find that fifty of the seventy guests were medical personnel.
Over the years, she befriended other patients—toddlers, school-age kids, teenagers, and young adults whose losing battles with CF foreshadowed her own. At an age when most young people have yet to lose a friend, she had lost far too many. Undaunted, each time she moved into a new room she’d decorate it with flocks of origami cranes. She welcomed incoming medical students like new neighbors, and indignantly chastised rude ones—so acutely that her etiquette lessons became legendary.
When Laura headed off to Brown, her doctor recommended that she live alone, fearing her constant coughing would awaken and alienate a roommate. The solitude was hard on Laura; she was a people person. But by second semester, her father says, "She had arrived." To celebrate her birthday, February 3, more than sixty people gathered at a local pizzeria, and she wore her trademark princess tiara.
Alex MacCallum ’03 grew up in Laura’s neighborhood in Manhattan, where they’d been friends since kindergarten. At Brown, she says, she envied the friends Laura attracted. Needing people who would deliver, Laura seemed to choose them accordingly. Laura didn’t travel in any particular circle; she just singled people out and drew them to her. "She was like the sun, and we were the planets," says Kat Fourcier, who lived with her sophomore year.
It was Laura’s openness and directness that first struck Ben Petrosky ’03 when he met Laura one day on George Street. Later he ran into her, carrying a box from the post office. She explained that it contained a device that would eliminate the need for her pulmonary physical therapy, an exercise that required someone to whack her on the back repeatedly with cupped hands to break up the mucus with which CF unceasingly filled her lungs. Her eyes welled up as she told him of her fear that an electric vest would replace the touch of her friends’ hands. Later, during Laura’s last semester at school, when she had trouble falling asleep, she asked Petrosky to tell her bedtime stories. Wary that she’d edit him, he read her Winnie the Pooh instead. He would read until she lost consciousness and then stumble in the dark as he made his way out the door.
Louella Hill ’04 met Laura at the start of their freshman year, when they crossed paths in an echoey stairwell in Keeney Quad. As they passed each other Hill admired the kerchief in Laura’s hair, and Laura called back that her grandmother had given it to her. They reconnected later, knitting and cooking and talking about craft projects.
"To survive in this place," Hill says, college students have to maintain belief in a lie: that tomorrow’s exam or paper is critically important. "If you didn’t believe that, you’d never get them done." But knowing Laura made believing the lie impossible, which was both a gift and a challenge to her friends. Friendship trumped all in her world. When Hill took time off junior year and learned to make pecorino cheese on a farm in Tuscany beyond the reach of e-mail or telephone, Laura was bereft.
"She wouldn’t take no for an answer," Petrosky says. "If you said you had an exam or a paper due, she wouldn’t hear of it. ‘You have to come,’ she’d say. ‘I might not be here next year.’ "
Laura was a constant communicator, "a graphomaniac," says one friend. As a child she wrote endless letters from camp and postcards from vacations. As a young woman she sent mass e-mails from her various hospital rooms, detailing her prognosis. "I never understood the e-mails," says MacCallum. "I’d read them and have to call her right back and say, ‘Okay, Laura, How are you really? Are you sad? Are you scared?’ "
"People have said Brown won’t be the same without me," Laura wrote at one low point as she anticipated her transplant. "Is it really true? I mean the bell will still ring, classes will continue, people will be busy." Friends had stopped over to say goodbye before their housing meeting, and she’d felt like an afterthought, an obligation squeezed in among others. "I’m afraid to be alone," she wrote, "that I’ll be up there [in Boston] and not know what to do with myself.
"Laura’s biggest fear," says Fourcier, was "that she would be forgotten. She hated to be alone." And all too frequently Laura was alone, stranded in the hospital while her friends tromped from the Ratty to the library or just hung out together, leading the life she yearned for. Laura had high expectations of her friends, and when they failed her, she told them so. "There wasn’t a passive- aggressive bone in her body," one recalls. "If she was disappointed in you, you knew it."
One lonely Saturday night before her transplant, Laura listened to the fan in her hospital room and left phone messages for friends back at school. "Spoke to a bunch who said they were too busy," she wrote in her memoir, anticipating weeks of hospitalization followed by months of recuperation. "My friends won’t come to me to stay out late and party," she wrote. "I won’t be any fun. I don’t want to be the chore on the list of things to do. I don’t like being alone. I wish that someone would call and offer to come up.… I wish that someone would fall in love with me. Some handsome man."
Some of Laura’s most cherished dreams seemed unattainable—to play soccer, for instance, and to fall in love. Although Louella Hill describes her as a "boy magnet" ("all the nicest guys at Brown were Laura’s friends"), Laura longed for romance. She had boyfriends, to be sure, but never the connection she craved. "It’s the postponement principle," says Ben Petrosky, explaining that boys in college are busy putting off the kind of serious relationship Laura would have required.
Laura begged Kat Fourcier to hurry up and marry her high school boyfriend so she could at least be a bridesmaid. "Look, sweetie, I can’t get married just so you can be a bridesmaid," Fourcier told her, "but whatever happens, when I do get married, you will be there." When Laura persisted, saying she might not live that long, Fourcier assured her, "You’ll be there, sweetie. If you’re not able to be there physically, one of the ushers will walk down the aisle alone and everyone will know it’s you on his arm."
"She was nine years old; she was ninety years old," says Bryan Doerries. Laura met Doerries at the University of Virginia, where she spent her sixteenth summer at a workshop for young writers and where he was a twenty-two-year-old counselor. He also drove the workshop’s van, and when the walk across campus proved too much for her lungs, he became her de facto chauffeur. After the course ended, they continued their conversations by mail.
Doerries moved to New York City in the winter of 2002, reconnecting with Laura. In March they spent an idyllic day together walking around Brooklyn and talking late into the night. He came up to Providence and stayed the week. They went to the beach together and holed up in her apartment. She skipped her classes. They fell in love. It was, Doerries learned later, the only week post-transplant that she would enjoy free of sickness. Their romance continued through the summer, while she worked for Legal Aid, and in the fall she returned to school.
Last November, though, it became clear that chronic rejection was killing Laura. She dropped out of Brown and moved home to New York City, and in December she and Doerries moved into an apartment, which she decorated feverishly until she became too weak, and they crammed the emotional journey of a marriage into just a few months. "I arrived in Laura’s life at a time when everyone was eviscerated," Doerries says. "I got to carry her over the finish line."
IN THE LAST WEEKS of her life more than 100 friends visited their apartment, Doerries says. There were friends from the hospitals, friends from childhood, friends from Brown, family friends, and journalist friends who’d come to hear Laura’s story and been captured by her zeal and humor. Having so often been disappointed by her friends’ inability to understand the depths of both her illness and her loneliness, at the end, says Doerries, "Laura became more and more forgiving. She died March 20, at 8 p.m.—the exact moment of the vernal equinox."
Laura scripted her memorial service, a huge affair in New York City with an abundance of eulogies and a final shower of origami cranes, which her friends sent flying from the balcony—as Laura had dictated from her deathbed.
Two months later, on a cold, misty day in the middle of Senior Week, about thirty of her friends gathered again, this time in Manning Chapel alongside her parents and a few faculty members for a Quaker service. One friend broke the silence to tell of finding a Scrabble scorecard from their last game together and seeing Laura again in her handwriting. Lucy Boyle ’03, a classmate since kindergarten, described the way Laura stole the show in a school play by playing an old man. Ed Beiser, Laura’s political science professor, rose slowly and addressed her parents gravely: it is wrong, he said, for parents to bury their children. Then the group walked slowly across the Green to shovel soil on the roots of a new redbud tree planted that week in Laura’s memory.
"So I’m back here at Brown," Laura had narrated in one of her radio diaries. "Classes started on Wednesday: I think that people who know me, who really know me, don’t see me as someone who is sick. They see me as Laura, you know, who is a sophomore at Brown. It’s hard for them to imagine, you know, "Oh, she might not be here in a few years." They know I have CF. They know that it means that you get very sick and you die, but they see me and it’s hard for them to make it real—because they don’t want to, because no one wants to, because they want me to live forever, because I’m their friend.
Charlotte Bruce Harvey is the BAM’s managing editor. This is an abridged version of an article that ran in the print version of the BAM; for the complete text, see the July/August, 2003, issue. Most of Laura Rothenberg’s quotations in this article come from Breathing For a Living, by Laura Rothenberg, published in May by Hyperion, © Laura Rothenberg.