Laura Rothenberg Remembered
'My So-Called Lungs' Diarist Dies of Cystic Fibrosis
Laura Rothenberg Remembered
Listen to 'My So-Called Lungs,' first broadcast on Aug. 5, 2002, on NPR's All Things Considered
Award-winning public radio reporter and producer Joe Richman — creator of the Teenage Diaries series, co-producer of the Sonic Memorial Project and the New York Works series broadcast on NPR — first met Laura Rothenberg when he began recruiting young people to contribute to his Radio Diaries series. Rothenberg died this week. Here, Richman remembers her:
By Joe Richman
About Cystic FibrosisCystic fibrosis (CF) is a genetic disease that currently affects approximately 30,000 people in the United States. Victims of the disease lack a cellular protein, causing a buildup of abnormally thick, sticky mucus in the lungs and other organs. The disorder can lead to serious respiratory and digestive problems, and eventually death. There is no known cure.
Source: Cystic Fibrosis Foundation
Laura spent most of her life knowing that she was going to die young. When she was born, the life expectancy for people with cystic fibrosis was around 18 years. It's almost twice that now. Laura liked to say that she went through her mid-life crisis when she was a teenager.
When I first met Laura and asked if she would carry around a tape recorder to document her life, she was reluctant. But she gave it a try. Sometimes she wouldn't record anything for a few months. Then there were days when she hardly turned the tape recorder off. Over two years, Laura recorded more than 40 hours of tape.
She recorded dozens of visits to the hospital, conversations with her parents, private thoughts alone late at night, or — like this entry — hanging out with friends in her college dorm.
"So I'm back here at Brown. 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."
Halfway through the recording of her diary, Laura's lungs began to deteriorate and she decided to get a double lung transplant. The transplant was successful. That was a year and half ago.
But last month it became clear to the doctors, to her family and to Laura that the new lungs were failing and there was no more fixing to be done. She left the hospital to spend the time she had left at her new home, the apartment she was renting with her boyfriend, Brian. For someone who had spent so much of her life either in the hospital or under her parents care, Brian — and the apartment — had, for the last year, represented an independent life, the kind 22-year-olds are supposed to have.
Laura was always blunt and honest, funny, poetic and strong-willed.
The way Laura lived her life was also the way she prepared for her death. Over the last few weeks, Laura organized her own memorial service. She decided she would be cremated and her ashes would be scattered into the ocean where she had gone as a kid. She said goodbye to more than 100 friends and relatives. Laura did just about everything but write her own obituary. And in a way, she did that too.
About six months ago, on the very last tape that she recorded for her diary, Laura talked about all of this, what it would be like when she finally died.
And it seems right to give Laura the last word.
"I definitely think about after I'm gone. When I was younger, I used to try and plan my funeral, where I'd want it, how many people I'd want to be there, what it would be like. I've always been scared that people would forget about me. Eight years go by and, you know, someone who dies isn't the first person you think of when you wake up necessarily. But I'll find a way so that people won't forget about me. You know, I'll give friends things of mine that they'll always have."
Richman is also an adjunct professor at Columbia University's Graduate School of Journalism.