"My So-Called Lungs",

August 5, 2002 4:09 PM

"My So-Called Lungs", is the affecting audio diary of Laura Rothenberg. Laura is a young, articulate woman confronting her mortality as she struggles with cystic fibrosis. Her audio diary aired on NPR tonight. Another excellent piece by the producer Joe Richman. Also written up in the NY Times (reg. req’d).
posted by found missing (13 comments total)

Ooooh, I wish I could have heard that! Do you know if we can listen to that via the NPR website?
posted by Modem Ovary at 6:59 PM on August 5, 2002

My bad...I found it. It's right at the top of the write-up.."Listen to Laura Rothenberg's audio diary. "
posted by Modem Ovary at 7:00 PM on August 5, 2002

This really was an excellent and touching piece. Thanks for posting the link. This was the best thing I'd heard on NPR for quite a while - it's well worth tracking down on the NPR website, assuming they've posted it.
posted by Tempus67 at 7:36 PM on August 5, 2002

Don't worry, Laura -- nobody's gonna forget you. (You have to listen to the audio diary to get the true context.)
posted by delfuego at 7:45 PM on August 5, 2002

Agreed--the best piece I've heard on NPR in a long while (and that's saying a lot). Thanks for posting it!
posted by Phatty Lumpkin at 8:47 PM on August 5, 2002

I don't quite know what to think about this.

I am 30 years old (next month.) I too have CF. I don't know if I should have listened to this. On the one hand, it's nice to know that there's someone else out there going through what I'm going through... for example:
-No one knows that every day I wake up and will myself to breathe and get through the day. And that sometimes I just get so tired of breathing. It gets exhausing.
-That I think about my health and sickness and insurance and future all the time. Not 5 mintues go by in a day that I don't think about it.
-No one knows the incredible need and desire to just be "normal." To not cough and to not think about it every single day.

On the other hand, it's horrifying to hear her cough and recognize it. To hear her scratchy voice and recognize mine. To hear that a lung transplant doesn't change the world-because I've had that in the back of my mind as the trump card when all else fails. To hear her on oxygen and disabled by CF and coughing. I don't know what the future will hold. In fact, I am in denial about it. I try not to think about it as much as possible, but something like this doesn't let me do that.

I don't know the future, and the future terrifies me. I've been so extraordinarily lucky so far. How long will my luck last? How long until I can't work anymore or go running or hiking? How long until I need oxygen? How long until....

The thing that struck me most was when she said that "How am I supposed to just sit there and watch it get worse?" I think that's the absolute most awful thing about CF. It just gets worse. No matter what you do. I can do 3 hours of physical therapy and exercise and breathing apparatus a day and thousands of dollars of medications every month. And it gets worse. I can dedicate my existence to doing everything right. And it just gets worse. Sometimes I just stop doing everything because it's all so futile and I just want to get up and go to work without having to do all that shit in the mornings. And there's nothing to do but watch it get worse. It's a very slow creeping death. It never stops. It never gets better.

On the one hand, hearing this makes me want to go upstairs and do my therapy. On the other hand, why bother?

I guess I bother for my husband. And my family. And for the ability to go hike half-dome in Yosemite like I will do next weekend. That's what it's all about, I guess.
posted by aacheson at 8:56 PM on August 5, 2002

Thank you for making me appreciate the (largely) pain-free life that I enjoy, aacheson. I wish you all the best.
posted by Optamystic at 10:30 PM on August 5, 2002

All the best aacheson, to you and your family. I heard this piece on the way home in my car, and had to stop and sit in my driveway to finish the whole thing. I was in tears when her father was recounting the talk they had when she was 11 - when he first let her know that the CF would kill her. It's got me even now thinking about it again.

Such bravery in just trying to live life as a normal person, in sharing this with the whole world.
posted by kokogiak at 10:50 PM on August 5, 2002

My NPR station starts ATC at 3, runs all 2 hours, then starts it over again at 5. The only thing different is the news headlines and the local segment. When this came on the second time, I couldn't bear to hear it again. Wow.
posted by dhartung at 12:00 AM on August 6, 2002

I heard this driving home. It shook me.
posted by yangwar at 6:30 AM on August 6, 2002

Great comments, honey, I know they will touch everyone who reads them as much as the program they listened to.

I love you! (please do your therapy)
posted by msacheson at 7:34 AM on August 6, 2002

Sorry everyone. We shouldn't have made this our own personal discussion.
As you were.....

I want to know what you all thought of the diary.....
posted by aacheson at 8:36 AM on August 6, 2002

You are a member of this community, and your comment was right on topic. You enriched the thread by recounting your experiences, and I thank you again.
posted by Optamystic at 4:51 PM on August 6, 2002