Over time, the Pelicans and the Beattys would come to see the fortuitousness of their situation. Got a question? Ask the neighbor. Debi and Kathleen grew close. Both had yet another child, neither of whom had the ?disease. The girls, too, discovered they could talk to one another in ways they couldn’t with their parents. By the early 1990s, they’d gotten vests that shook mucus from their lungs. The new device gave them a modicum of independence. Over time, there had been good news: With improved treatments, CF patients were living longer. Now, according to the Cystic Fibrosis Foundation, the median age of survival is in the mid-30s.
When Sam went to college in 1999, she told Piper how she fit treatments into her packed schedule — how CF wasn’t an albatross; how her dorm roommate accepted the frequent treatments as part of the daily ?routine. Sam was happy, fulfilled. Piper could be too. The next year, Piper was off to Emory University, in Atlanta, and then to law school at Columbia University.
Piper had done everything she could to stay healthy and active. Sam and Libby got updates from their mother: Piper was off on a trip to Europe; she scored a volunteer internship with the American Civil Liberties Union of Georgia; she was working her way up the ladder of a Manhattan law firm.
And then more news: Piper had gone to her doctor. She needed new lungs.
Piper sat on the wooden floor of her Manhattan apartment — a 29-year-old working up the courage to lie flat on the ground. Her old lungs had robbed her of the simple luxury of a night’s sleep on her back. But her new lungs now gave her a chance for, well, she didn’t know.
Her back hurt from months spent recuperating from surgery, and she needed relief. It was the summer of 2010, and her doctor suggested that she lie on a hard surface. But Piper had forgotten what it was like to be on her back and not feel like she was drowning in mucus.
Piper lowered her back to the floor. Tears ran down her cheeks. Her shoulders touched the wood.
Piper used to sit awake at night and stare out her window onto Greenwich Street, wishing she’d fall asleep before the monster awoke in her chest — when the coughing fits would almost become too much. On those nights — and they were frequent — Piper had come to pray. She’d ask God to make sure she’d wake up the next morning. Just a bit of rest, she’d beg, then please let me fight again tomorrow.
She took a breath.
Piper had been writing a blog for two years by then, chronicling her life with cystic fibrosis. She started writing a few months after learning she’d eventually need new lungs. It was an easy way to update friends on her condition without rehashing events in multiple phone calls or emails. Piper felt frightened at times, confused at others. The words on her ?computer screen soon became what eased her — another form of medication. She called the blog “A Matter of Life and Breath.”
I’m [re-]learning to breathe, she wrote shortly after receiving her new lungs.
By which I mean I’m re-learning to be patient (rather than simply be a patient, which is a very different thing), to trust, to be grateful, to be scared without being paralyzed, and to rebuild the sometimes-tenuous connection between myself and this crazy, beautiful thing called living.
Was it a new life entirely? Not exactly. Even with new lungs, CF permeated ?Piper’s sinuses and her digestive system. It was wound into her genetic road map like an ?interstate system. And then there was this sobering fact: Of the roughly 120 cystic ?fibrosis patients who receive new lungs each year, roughly half live five years or less.
Piper’s life had been a productive one by anyone’s measuring stick: College at two prestigious schools, a great job as a litigation associate. Like her two friends in Colorado, she had given hundreds of hours to cystic fibrosis charities, speaking across the country — telling anyone who would listen that life could continue. “I wanted people to see that CF wasn’t how I defined myself,” she says now. “I didn’t want anyone using this disease as an excuse to not live life.”