One evening in early February, PW sat at the bedside of Laura Rothenberg in the apartment she shared with her boyfriend, Bryan Doerries, in downtown Manhattan. Rothenberg was close to death from complications resulting from a double lung transplant she had undergone in 2001, hoping to turn the tide on her cystic fibrosis. Toward the end of our hour-long conversation, Rothenberg removed her oxygen mask and spoke to us in a clear, confident voice. Laura Rothenberg died on March 20, 2003, at the age of 22.
PW: You decided to write Breathing for a Living around the time you decided to have a double lung transplant in 2001. What was the intention? Who were you hoping to reach?
Laura Rothenberg: The intention was never to write a sad book, but to bring hope to people, because I believe that every person in the world has his or her own difficulties. This book tries to show how one person dealt with her difficulties. Also, I really wanted people to learn about CF. I think it's a good book for anyone dealing with CF patients, especially for medical students who will one day be treating people with CF, because it helps them understand what it's like to live with the disease.
PW: Your book is very specific and very real. It reads like war dispatches. You have to fight battle after battle, each one worse than the last. You really convey the relentlessness of the disease. Reading it, I was aware that I had the expectation that you would finally win, that you would get well. But that's not the reality with CF, is it?
LR: It is true what you say, about expectations about sickness and wellness. I've watched people go from being completely healthy to very sick, and then they become healthy again and it's amazing to me. With a degenerative disease like CF, you start out relatively healthy and get sicker and sicker over time. I remember that in seventh grade I could run the mile and was on the soccer team and that in eighth grade I couldn't—I just couldn't do it anymore.
PW: Do you think that living a good life, a complete life, depends on being healthy—or depends on living a long time?
LR: No, I don't think that having a subjectively good life depends on having health. I know seven-, six-, even two-year-old children who had transplants that did not go well. I've seen that a two-year-old will cry a lot when he gets stuck [with a needle], but really all he wants to do is play with his puzzles and live his life. He really doesn't know any other way than having lots of cords and lines connected to him and being in the hospital.
PW: The two-year-old doesn't pile mental anguish on top of the physical pain. He doesn't add anything to what is. Your book is going to do a great deal of good by telling the truth without hiding anything or adding sentiments that you don't really feel. You're offering a greater gift by being so vulnerable, by laying yourself bare as you do, because you're giving people permission to be authentic about their lives, their own struggles.
LR: I really do believe that everyone has their own struggles, and even if their particular problems aren't medical, they are related to what I've faced.
PW: It's clear from the poems you include that you have pangs of regret about things that you didn't get a chance to do—to see Venice or Australia, for instance. But as an older person, I can tell you that telling the truth and sharing your life is really living. People you will never meet will read your words, including in PW. Some of them may be lying in a hospital bed just as you were when you wrote it. But sick or well, people are going to have feelings of friendship for you. I don't think that life gets any better than that.
LR: There's something else that I do want to say. There is a section in the book where other people, my parents and friends, write about how they felt about my transplant. I wanted to get across how many people are affected by CF. I also want to remind people of the need to donate organs.
PW: Your book will remind many of the need for information about CF and for money for ongoing CF research.
LR: Yes. That is very important.