Thursday, August 13, 2009

Notice of Separation

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
August, 2009

Yours always (or at least until something better comes along),


  1. You are such an amazing writer! I have followed your blog for some time now. I have an 8 yr old who has CF. The way you have handled what CF has given you is inspiring. Thank you for sharing your story! It means so much to so many. I wish you all the best on your transplant journey. I'll be reading and praying!
    Here's to a life full of more adventures and happiness then you could have ever imagine!
    Julie Malchus

  2. This is hard to say, only because you've had so many great ones, but I'd say this is your best! What an amazing blog post!!! Is there any way to nominate that for a Pulitzer?


  3. Wow Piper. Fantabulous Blog Today. (Is that even a word?) :D It's a very moving entry, in a very entertaining yet "makes you think" Piperesque way...

    I truly appreciate you posting your CF journey and I'm grateful you give us glimpses of what must be an emotional and frightful process.

    I'm sending along some {{{Hugs}}} and thinking of you.

  4. What a great post Piper! Here's to hoping you don't wait long and your new journey can begin. :-)

  5. Great Post Piper! You have a natural talent. I hope your CF is not too upset it just was served.. but when it is time to hit the pavement.. ce'la Vie! Congrats on getting listed!


  6. Congratulations on getting listed!! And thanks for being such a great bloggy pal. Amazing text.


    Beth CG

  7. Wow! I have to say that was a great entry to read. Congrats on being listed! I bet you can't wait for all the fun you're going to have with your new lungs!

  8. WOHOOOOO to being listed! Congrats! This was a fantastic post! You need to write a book.

  9. No doubt, one of the best notices I've ever read! Well done!

  10. You are so fabulous.

    Here's to new lungs, a bright future, and more fabulous Piper-isms.

    Take care. We are all here, standing behind you :)

  11. This is a great post, you've got a great view of it being a seperation! I feel you girl!

  12. what an amazing post. so well written. sending out positive vibes and energy to you my fellow cystic!

  13. Congrats on getting listed! I love reading your blog. This is my new fave!

  14. LOL best post ever :)


    I can't wait to get THE text saying you got THE CALL!!!!!!!!!!!!!!!!


    And also tons of hugs as you await your new life!!

  15. Piper, you are such an eloquent entertaining writer. I wouldn't expect anything less from you! Seriously, ever thought of writing a book?

    Congratulations on being officially listed. It's been a long process thus far, and it's sure to be a long process from here on out, but me and all of your other Cysters will be here with you, supporting you and helping you through the listing and transplant process.

    I hope someday we get to meet in person!

  16. Good luck with what the future holds. Looks like you are ready to take it on full force!

  17. Awesome post! I love your writing and how you incorporate these types of things/issues into a poem, short story, letters, etc. =) Very professional writing!

    Anyways, congrats on officially being listed!!! It is definitely time for a separation! It's gonna be the best decision you've ever made! I'll be praying you don't have to wait soon, but when the time does come, you will pass with flying colors!!! This transplant journey will be awesome!

  18. What a great letter! i hope you sent it priority mail ;)

    I hope the wait isn't to long for you and that your new journey can begin with brand new twins! Imagine the possibilities...


  19. WOW! I love your writing! your doing great!!

    Don't feel bad for CF he/she deserves it!! lol

  20. Wonderfully well done. Witty, poignant, sassy. I agree with Ronnie -- somebody submit this for wider circulation and recognition.

  21. Totally enjoyed this post. Hope the wait isn't too long!

  22. Love this. Actually made me cry. Praying for all the best for you.

  23. This post is amazing, I could honestly read it over and over again!!

  24. So grateful Charity TD sent me to your blog. Sheer emotional, literary genius. Thank you for who you are,what you do and how you write about it. A gift to the world!