Dear Cystic Fibrosis:
It's hard to believe that it was just a little over 28 years ago when you and I took our vows together. Of course, I'd be lying if I said I remember any part of the ceremony, but I imagine I looked small and beautiful (if a little sick and underweight) in my infant hospital gown. You, I'm sure, looked much the same as ever, hidden as you were in my tiny little genes -- 28 years and you haven't changed a bit, though I wonder if that's much of a compliment for a couple of fixed mutations. Either way: you were there and I was there, and at 6 weeks old I took a vow to live with you as best as I could, through all your wild mood swings and reckless flare-ups, despite your unpredictable nature and frankly very bad temper (you could totally use some anger management classes, just fyi); for better or for worse, in sickness and in health.
I guess I didn't know at that time that you'd been courting me in secret for quite some time -- 9 months and 6 weeks to be exact about it all. We were young then, and even the experienced adults around us couldn't recognize the signs of our burgeoning relationship. Isn't that always how it goes though? You don't know how deep you're in it until your hands and feet are stuck in the tar and no amount of prying or tearing or punching will tear you loose -- you're just stuck with that tar baby and that's the end of it. And then I guess we're all just left to do the only thing we ever know HOW to do, which is to make a life out of it all.
And live we did! Hey, CF, we had some good times, right? More good than bad, actually, when you care to tally it all up. I mean sure, you tend to get all worked up for no apparent reason sometimes, and you do have a way of trying to make our lives all about you (like that little attention-hogging infection back in 2007? Um, yeah, SO uncalled for!), but by and large you and I have made a life together that far exceeded anyone's expectations. We've traveled, gone to school, pursued random dreams, had relationships, lost relationships, fought battles, and done pretty much everything we've set out to do over the years, to be perfectly honest. I wouldn't say you were always my favorite companion on that road, but I have to give credit where credit is due: you definitely don't have any problem with commitment.
Nope, CF, I don't hate you, honestly. I need to say that, and I'm willing to put it in writing. Granted, you might have trouble believing me, and probably for good reason. I admit I wouldn't be too hot to trust someone who spent hours plotting ways to raise money for a foundation working to wipe me off the face of the earth. It probably doesn't leave you with the best taste in your mouth, but then again, you're directly responsible for all that goo I coughed up this morning, and that didn't taste too good either. And anyway it's all true: I don't hate you, because you've pushed me to be more than I probably could have been without you, because you've brought my family closer together and forced us to realize what we mean to each other, because you've given me SUCH cool slang language (cystic, cyster, fibro), because you gave me countless funny hospital stories (no, I do not have fibrocystic disease of the breasts, thanks very much) and taught me more medical words than most residents know, because you've made me part of a fabulous community of people, and because you are, for all your flaws, a part of me now. You are literally all I know, and for that I find it difficult to let go.
Let go. Um yeah, kind of. See, the point is, CF, that while you haven't changed too much over these past 28 years, I have. I've lived and I've laughed and I've coughed and I've read some really good novels (and, let's face it, a whole lot of NOT so good novels) and, well, I've come to a kind of startling conclusion: I would be better off without you.
No, wait, before you freak out, I don't mean ALL of you (although if I could have that option I have to say I think I'd take it), but I do mean the biggest part of you. The part that has taken up residence in my lungs and insists on throwing raucous parties every few weeks or so, despite the fact that I keep telling you it's just not compatible with my lifestyle. Yep, that part. I'm sorry, but it, and you, has just got to go.
So I'm making plans to get a separation, and I hope it doesn't come as too much of a shock that I'm pretty far along in the process. I'd offer to find you good representation, but to be honest the judgment has already come down. You're out, I'm in, and hopefully some new lungs will help me move on with my life in a way I never could when you were with me. I'm sorry (sort of), but this is just the way things have to be.
If it makes you feel any better, I know I'll always bear with me the scars of our relationship: of all the times we fought and struggled and everything you taught me about myself. Physical scars, sure, but more than that also. And of course I know I won't be rid of you completely (though you can be sure I'm not going to give up trying to knock you out altogether -- no hard feelings, surely), but I'm hopeful that the part of you that remains will be less cumbersome and attention-hungry, and frankly just less annoying.
I know things might not be perfect when you're (sort of) gone. I accept that, and I'm okay with it. Right now, all I know is it's time for you and me to (kind of) part ways. So here's my official notice -- consider yourself served:
Listed for Transplant
NY Columbia Presbyterian Medical Center
Yours always (or at least until something better comes along),
- I am a 33-year-old wife, sister, daughter, friend, law school graduate, CFer, lifelong student of public service, blog writer, patient, Sagittarius, reader, Top chef fan, double-lung transplant recipient (twice!), and dog owner living in Colorado's beautiful Mile High City. I love all things colorful, funny, inspiring, or needlessly sarcastic. I share my city with about 2,500,000 other remarkable people, share my disease with 70,000 other beautiful souls, share my life with some unbelievable family and friends, and share my apartment with one very handsome guy and one really fat mutt with a kick-butt personality. We make it work.
About This Blog:
This blog is about me, my life, my sometimes craziness, my disease, and my current journey as a double-lung transplant recipient. It's also a celebration of everyone out there with CF (and other chronic illnesses). It's for you, inspired by you, and dedicated to you -- the community that keeps me writing, living, and breathing.
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