Laura Rothenberg
March 27, 2003 7:22 AM   Subscribe

Last August, Metafilter readers learned of the story of Laura Rothenberg, a student at Brown University who chronicled her battle with cystic fibrosis on NPR's Radio Diaries. Sadly, Laura died last week at age 22. NPR remembers her here and a moving tribute aired earlier this week on All Things Considered.
posted by PrinceValium (13 comments total)
I heard a part of the NPR show where this young woman chronicled her before/after experience with a lung transplant. It was amazing and heartening to hear it. I did, and do, admire her immensely. Stories like this make you remember just how much courage regular people display living their normal lives.
posted by gkostolny at 8:42 AM on March 27, 2003

Is it possible that Laura Rothenberg did not exist? This is a really delicate thing here. Please be really thoughtful about this. I promise I am not trying to stir the shit without cause. There are some people who are wondering whether Laura was a real 22-year-old CF patient, and whether things actually occurred the way they've been reported online.
posted by johnnydark at 9:42 AM on March 27, 2003

There are some people who are convinced that she did exist, including--according to the Times obit--her (apparently gullible) family. To what kind of coordinated media conspiracy have we fallen victim? You *are* just stirring shit by suggesting something so disrespectful without any substantiation. To be most thoughtful about this, I have to ask: what is your opinion about the so-called moon landing?
posted by found missing at 10:14 AM on March 27, 2003

found missing, johnnydark's comment is not meant to be taken literally, but was a badly executed in-joke referencing the Kaycee Nicole ordeal. Your accusation of disrespect, however, is duly seconded.
posted by PrinceValium at 10:22 AM on March 27, 2003

That was really moving. (It reminds me again not to get too worked up about whatever non-fatal things I have to deal with.) The part where the father recalled telling his 11 year old daughter that she was going to die especially got to me.
posted by mdn at 10:31 AM on March 27, 2003

As I said in the last thread about this, I have always thought of a lung transplant as my trump card with this awful fucking hideous disease. It makes me very sad to hear that it didn't work out for her. I've always hoped that a transplant would be a last solution, allowing me to get much better.

Why am I alive and pretty healthy at 30 while the vast majority die before they are 20? Life is unfair (that I have CF) but also very fair (that I am not as sick as I could be.) It's a bizarre thing to think about.

Everyone always says to me when I get sad, "Amanda, but you don't know how you are going to die." Well, the difference between me and others without terminal diseases is that, if nothing else happens, I know how I will die. I will die like Laura. A long, slow, horrible spiral down into a suffocating death. (It's suffocating because eventually all your lung tissue turns to scar tissue and you can't breathe anymore and you die of suffocation.)

It's a lot to live with. And this kind of thing makes me think about it. I live in denial, and that's the only way I can deal with it. *sigh*
posted by aacheson at 10:39 AM on March 27, 2003

What, did I scare everyone off?
posted by aacheson at 1:11 PM on March 27, 2003

So, I'm curious, aacheson - do you feel like you live your life differently from other people, because you have already faced your own mortality? People without terminal diseases always talk about "living life to its fullest"... do you do that? Or do you just try to stay happy as long as possible? And are the two mutually exclusive?
posted by starvingartist at 1:25 PM on March 27, 2003

How much can lung transplants help? I mean, is it conceivable that a person with CF could live another decade with a new set of lungs, or is it more like another year?

aacheson, have you ever written anything about your experience? I went through a health scare a couple years ago, and for the time I was in the hospital or going in for treatments, nothing really seemed important beyond health.
I completely understand why people turn to medicine after going through or witnessing potentially fatal diseases; I have never been the doctor type but it crossed my mind pretty regularly, and my sister has turned from CS to biology since (don't know if that has anything directly to do with my sickness, though). I've learned cpr & first aid since, certainly as a result of greater awareness of the reality of death.

It's strange too, because I wasn't really scared about dying - not just that I had pretty good odds, but that I was okay with it. But I felt so sad for my family and friends. That's the part that really sucks.

When you say you live in denial, do you mean you take it day to day and don't think about your death? Are we depressing you :)? Sorry - I admire your courage and strength, and I hope some researcher out there is on the brink of something big for you... And should it not work out that way, I hope the time you have is magnified and enhanced appropriately.
posted by mdn at 2:19 PM on March 27, 2003

Let me see,

starvingartist, I have to say that I am more in touch with my mortality. I don't have the "it can't happen to me" feelings that others seem to have. I think about death a lot, I get really bummed frequently that all the physical therapy I do and drugs I take seem to do very little and that there is no way to be cured and that no matter what I do, I feel the slow spiral of getting worse all the time. I've always thought of myself as a realist, not as a pessimist. But perhaps I'm a little of that, too.

I feel like I live life like everyone else does. I have a 40 hr a week job, a career, I am trying to start a family, I have plans for the future, but oddly enough, I don't save for retirement in a 401K because I don't think I'll live long enough to use the money without being "punished" for early withdrawl. Otherwise, I live life like I'm going to live a normal lifespan. I don't go travel everywhere or not have a job or responsiblity (which I think of as "living life to the fullest.") I wish I would travel more (although people would argue that we travel a lot!) I get down about responsiblity and everyday life the way everyone does.

I have never felt the call to medicine. I hate hospitals and doctors and the whole system. I avoid hospitals like the plague and do home IV treatments every year instead of going into the hospital. I don't write about it publically because then I would have to think about it all. I avoid all people with CF, CF support groups, CF websites, CF newsletters, and don't have any friends with CF anymore. (I used to go to CF camp when I was young but stopped when all my friends started dying.) That is the way I deal with it, I guess. I know it's out there, I get depressed about it, but I don't let it rule my life.

But I'm very very very very lucky. I can run and hike half dome and swim and sail and exercise and I just get winded and cough a lot. I'm sure I will change my tune when I get as sick as Laura was.

I don't hold my breath for the research. I've been hearing that genetic therapy is right around the corner for about 10 years. We aren't even close. I just work and work to slow the progression of the disease.

I don't know how my husband handles it.
posted by aacheson at 3:42 PM on March 27, 2003

Sorry, forgot to answer mdn.

I don't know about transplants. I have heard of people who get transplants that work and they get much much better for a long time. But if you reject it, even a little, like Laura, you're basically screwed.

Thanks to all for the kind feelings. I always feel weird about talking about it because everyone seems to then think that I'm so strong, when I'm just doing what I have to do to live the best way I can. And I'm just so lucky to have a mild case.

By the way, my doctor said the other day that they are finding that if you live with CF pretty healthy until you're 30, you will probably live until you're 70! I find that *very* hard to believe. Granted, that's probably just being alive, and not really "living." I've gotten so much worse in just 10 years, I can't imagine how bad I'd be at 70!
posted by aacheson at 3:50 PM on March 27, 2003

Wow, aacheson. Thank you for sharing that with us. I was mortally ill only once in my life, and it was curable; I never really had a lot of time to think about it before it was all over. Having to deal with it every day, for the rest of your life, well, I guess I don't give my longevity much thought, but today was a good exception.
posted by Civil_Disobedient at 8:22 AM on March 28, 2003

they are finding that if you live with CF pretty healthy until you're 30, you will probably live until you're 70!

wow! that's really exciting. Here's hoping that's how it goes for you.
posted by mdn at 9:03 PM on March 28, 2003

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