Saturday, February 21, 2009

Borderline Saturday

Do any of you remember when NPR's All Things Considered ran its segment on a young woman named Laura Rothenberg and her double-lung transplant story? The show was called "Breathing for a Living" and it ran while I was in college b/c I vaguely remember my parents calling me up and telling me that I needed to listen to it. Of course, I was in college and had better things to do than listen to NPR (or rather, I THOUGHT I had better things to do -- turns out frat parties aren't nearly as important as I probably thought they were at that point), and beyond that I frankly wasn't all that interested. What did this 22-year-old woman with a lung tx up at Brown have anything to do with my life as a college student in the south with 80% lung function? I kind of figured that it made about as much sense for me to listen to her story as it did for me to listen to stories about people with AIDs. Interesting maybe, sad definitely, but not my disease. Not in any realistic sense anyway.

Okay so I'll spare you all the flash forward and the dramatic retelling of how fast CF can creep up when you're not paying much attention. You know the story anyway. Suffice it just to say that I've had a little bit of a reality check in the past few years. And that reality check has definitely left me eager, in a way I would never have imagined, for the stories of other cystics. Seriously, I have a need bordering on compulsive just to hear or read more about what other people with my disease are going through, or what they have been through, or even what they might go through in the future. I can't really explain it, and honestly I don't question it much. I think it's normal to want to connect with others like you, even if your experiences are different, and really I'm just kind of sad that it took my 25 years or so to figure that out. Also, I love what this newfound interest has given me: it's what led me to the online CF communities, opened up a whole wealth of stories of people living successfully both with CF lungs and post-tx, and helped me connect with a bunch of other CFers who are all dealing with the same or similar issues that I am right now (um, job issues, anyone?). So yeah, basically now I'm a bottomless pit of all things CF-related, and I'm okay with that, as long as I remember to leave enough time in my life for other stuff too.

Luckily for me, cystics DOMINATE the world of lung-transplant memoirs. Seriously, go to Amazon and check it out. It's basically CF, CF, emphysema, CF, random other lung disease, CF, CF. I'm not sure why this is, maybe because we tend to be younger and have more urge to write after transplant? Maybe we have more interesting medical histories than the average transplant patient so our stories are more interesting? Who knows. The point is, we totally own this genre. And among the books that I've read lately in this category is Laura Rothenberg's own memoir, which is the backstory behind that old radio program I refused to listen to six years ago.

It isn't beautifully written, in many ways. It reads more like a diary than a real narrative and reading it felt a little voyeouristic to me, because it's as though she was writing for herself -- she references people and happenings without explaining them, which makes the whole book read like a personal recording of events not intended for a wider audience. But it is amazingly honest.

She writes about feeling left behind by her friends, about sitting alone in a hospital wondering why more people don't call, or thinking about how weird it is that life still goes on as normal outside her little room. And that's sort of how I've felt lately, even though I'm lucky enough to not be confined to a hospital bed, b/c even as I go through the motions of getting up and going to work and going out with friends, I still feel as though I'm existing somewhat in a "sick world" that other people just don't live in. Sure, life goes on as normal, and I understand that, but at the same time I sometimes marvel that there are little things happening (people are buying groceries, a guy is talking on his cell phone, secretaries at my firm are typing memos and lawyers are racing to the next meeting) and all the while I'm juggling that normalcy with a whole other side of my life that deals with transplants and FEV1s and oxygen tanks. I dunno, sometimes it's weird trying to reconcile the two.

I'm sure sometime in the future I'll cross more fully into the sick world. And hopefully at some point, maybe post-tx, I'll be able to re-enter to some degree the healthy world -- where people can make plans with friends for a week or two weeks or even a month out and not have to worry about being forced to cancel last minute or whether they'll have to lug their IV antibiotics along. But for now I'm living on the border between the two, still grateful for the time I get to spend doing all my favorite normal things, but always aware of the threats of illness. I guess we cystics are border people by nature, although at times the lines seem more blurred than others.

Which, to bring it all back full circle, is another reason I'm so glad that I've become such a CF junky: it's nice just to know that there are other people out there straddling these two worlds right there with me.


  1. I think I need to read that book. Sounds really good, and oddly familiar! Xx

  2. Yep I feel you. It is like an addiction needing to know and read and talk to other cystics.

    I haven't read any books by cystics, for some reason it doesn't interest me even considering my absolute LOVE of all things written.

    That world is very real. Sometimes I wish I could bring healthy people into the world, though sometimes they get a glimpse of it when they get retched colds and what not. But its not the same, though similar.


  3. Hi!! Thanks for commenting on my blog...this is the first time I have been to yours! I have read through a lot of your posts and its so unreal how many of my thoughts and emotions on life/work/transplant are the exact same ones you have. Its nice to read. Thanks

  4. I think I started that book years ago, but after moving, I have no clue where it is. It's all a blur now.. hmmm.

    Piper, you totally amaze me. You are the perfect example of what I was saying about being "healthy" in every way. ALL Cfers could learn a lot from you!!!

  5. yup, you know I'm right here standing with you!

  6. Hi,

    I hear you!

    It's hard for "normal" people to fully empathize with our disease.

    BTW, I'm sitting here reading CF blogs while quietly waiting out a moderate hemoptysis episode. (I bet you know what those are like.)

    I just had a dry run for transplant two days ago which I document pretty thoroughly on my blog.

    I too, am a working professional, part-time. I am a pathologist which is a great job because I can sit most of the time. But I think I picked up some nasty bugs in med school or residency.