Wednesday, October 21, 2009

Waiting to Inhale

Well, it's officially been a whole since I was first listed and I think I've come to a few very important conclusions:

1) Tom Petty is a genius (see lyrics to appropriately titled song, "The Waiting")

2) Daytime TV is definitely not all it's cracked up to be . . . newsflash, Murray: he IS the father. Every. Single. Time.

3) My puppy may or may not be sneaking my prednisone at night. Either way, 21 lbs for a shih-tzu/yorkie mix just doesn't seem normal. Ironically, he seems to use his adorable chubbiness as a frustratingly effective tool to get MORE food. I know this has nothing to do with transplant, but the cycle is vicious, and it needs to be broken. Soon.

and 4) I am not, in fact, the world's most patient patient.

Honestly, I know I haven't been waiting that long, and I feel comfortable saying that I'm actually grateful for the wait thus far, as it's given me time to get stronger, recover from some unexpected setbacks, and maybe get just a little closer to being emotionally prepared for this life-changing event that I know is coming. I feel confident that the right lungs for me are out there, they're just in use by someone else right now who needs to and is supposed to keep them for a while longer, and that's right and good and okay with me. I trust completely at this point, after a lot of hard work and soul-searching, that lungs will come for me at the right time, from the right donor, and that I'll be in the right place to accept them as the wonderful gift that they are.

All of the above is 100% true.

But what is also true is that I'm tired of feeling so sick, something that, despite nearly 28 years of serious lung disease, is honestly a very new sensation for me. I know that I've gone through a lot lately that was only indirectly CF-related (i.e., anyone can get blood infections and clots), but I still feel like this disease has been playing a near-overwhelming role in my life lately (after all, I would never have had the port or the PICC to get the infections or the clot if I didn't have CF). It bothers me to be on O2 most of the time, even though I know that worry is petty and ridiculous. After all, let's face the facts here: no matter how nice your makeup looks, that nasal cannula will really draw attention away from your perfect mascara. I'm dedicated to giving my body the help it needs and being compliant, but it's a new challenge to do those things when they're so VISIBLE to everyone around me. And, of course, it's tough to fight the feeling of being left behind . . . it's such an active, vibrant time in my friends' lives right now (marriages, births, dating, jobs, travel, etc), and try as I might I can't help but feel just a tad left out occasionally. It's not that I CAN'T do those things necessarily, but right now is a time to be focused on my health first and foremost, and that can sometimes be a tough pill to swallow. Pun intended.

So I've been thinking about this whole process of "waiting" a lot lately, in part because slowing down and trusting in outcomes that I can't control does not come naturally to me. A couple of nights ago, though, I was lucky enough to stumble across a beautifully written post by Sara over at Ocean Desert about life lessons learned from yoga practice. Her message -- that sometimes we have to stop pushing and just let things unfold, and that life is meant to be enjoyed to the utmost -- struck such a chord with me, and after reading her words, I couldn't help but apply them back to the notion of "waiting" for transplant.

Simply put, I sometimes feel as though I am waiting to live, or at least waiting to have my life "back." I remember when I was oxygen-free, starting out my new career with the same gusto as all my fellow junior associates, living alone, buying my first dog, etc., and I think "wow, wouldn't it be AWESOME to be able to live that way again?" And I look at my sister, or my friends, or even strangers on the street going about their daily lives, and I think "man, what I wouldn't give to be able to take a spur-of-the-moment trip or roll out of bed five minutes before I need to leave the house one morning." I see people stressed out about their jobs and am actually a tiny bit JEALOUS because I remember how much fun it could be to sit at the bar with a co-worker, throw your hands in the air, and just let loose about how much pressure you were under to get that latest assignment done before the totally unreasonable deadline. In other words, I have a slightly over-the-top case of the green-eyed monster -- and my monster apparently has some serious amnesia when it comes to remembering how much it sucks to be overworked and stressed out.

I think what Sara's post made me realize is that I need to change my focus here a little bit if I plan to survive the next 1 day/1 week/1 month/1 year of waiting. Because I honestly cannot spend that much time waiting to "get my life back" without simultaneously losing my mind. Instead, I need to remember what I'm really waiting for is LUNGS -- beautiful, perfect lungs that will hopefully enhance and extend my life, but not start it. Cliche as it sounds, my life is going on right now, all around me, and while it doesn't exactly look like what I'm used to, that doesn't make it any less worth enjoying to the fullest extent possible. And it definitely doesn't make it something I should be any less that totally grateful for, as any CFer or person with chronic illness will tell you.

For me, personally, what I have right now, in this moment, is time. Time I definitely never had in law school or as a junior associate. Time to explore new ideas and parts of the city (hey, if I can't travel to distant lands then I can at least go spend some time in the East Village, right?). Time to read whatever books and novels I want, not just the ones assigned by my professors or necessary to find the latest case law. Time to spend an hour practicing gyrotonics and still time left over to talk with the instructor about her philosophy of mind/body connection. Time to dive in to some new theories of alternative medicine and ways of viewing the world. Time to sit with my mother in a cozy coffee shop and enjoy conversation, or to nap in the afternoons and give my body some much-needed rest.

Yep, even time to write lengthy blogs detailing my half-formed understandings about life and this never-ending process we call "waiting."

I'm not saying that this is the easiest time in my life, and I'm definitely not saying that I'm always able to stay positive in the face of what is, quite frankly, a frustrating situation more often than not. As with my puppy's ever-expanding waistline, I sometimes feel like I'm caught in a cycle that I would really just prefer to skip over, not deal with, and get on to whatever comes next. That impatience is itself just a part of my personality, for better or for worse, and I don't think it's going anywhere anytime soon. But in the meantime I've decided to start focusing a little less on the life I'm waiting to live, and a little more on the life I'm already living.

And I can't wait.


  1. Atleast S is not eating inhalers!! :)

    I hope you have a good week!!

  2. Great blog post. For the first 3 months of my "waiting" I did what I felt was nothing. I told the doctor at the transplant clinic this and she reminded me "we only have one life so live it."

    For the past 2 years, I have been trying to find the right balance in my life between sitting at home resting, trying to stay healthy for the transplant, and living life. If you find that balance let me know! (wink, wink)

  3. Girl you really are an inspiration! Definitely try and "live" now while you can. Yeah it sucks to be sick, but I am sure your friends just want you with them -even if you can be step for step. (I hope that made sense).

    Try and "enjoy" the wait honey!

  4. I'm totally feeling you with the green eyed monster thing. This is such a tough period for you, we do need to try to make the most of it, O2, wheelchair, and all.

  5. Piper with every blog I read I am more impressed by what a sensible, intellingent, and interesting person you are.

    I think you make an excellent point about the waiting. I truly believe there is a hidden blessing in everything and I am such a 'planner' that waiting on anything is such a challenge (and I have never had to endure this sort of waiting...yet). Anyway I try to remind myself that its God's timing/planning not my own, sometimes I literally ahve to repeat this over and over in my head.

    Anyway I think its a very cool point you made about having time right now. I am sure there are some REALLY cool things going on in the city during the day you might never be able to take a part of when working and I am eager to hear what you find...a cooking class...amateur photography...story writing class (you are a talented writer).

    best of luck in waiting


  6. Piper, I was thinking of you as they delivered Oxy to me today (first time). I've been trying to come up with something important to say, but I'm at a loss because as always your writing really has me pushing out of my usual box, in terms of considering these issues. That's a good thing... Your post really got me thinking about the whole live now thing vs. waiting for the next event. Ohh I can so relate to that. ~Juliet

  7. I just read Sick Girl Speaks! and I can't help but notice its relevance everywhere...including in your post. It is all about acceptance and it has helped me so much. I HIGHLY recommend you read the book. In fact, I think it should be required reading for all cystics.

  8. Ohmygosh Piper! Thanks for the shout out! I'm just catching up on blogs.. I'm in the joint cuz I was feeling funky... but feeling better already. My wait was 2yrs and 1 month..but I only had 1 course of ivs in that whole time! I credit it to just getting out there and loving the life that I had created.. which was a great one.. just as I know yours is! I so hear ya on the waiting.. there were days I thought my life was a shadow of a life compared to everyone around me. My friends were having babies and getting promotions and I was at HOME! ugh! But let me tell you.. when that call comes, you will be amazed.. You will have SO much of life's simple pleasures at your fingertips and with your career... oh my gosh.. I am just so excited for you! YOU WILL jump up out of bed and go eat breakfast with your friends sans a treatment and it IS the best.. You and I seem much alike in that we are fiercely independent and you will get each ounce of that back and MORE!!!

    hugs cyster!