I used to lie awake at night sometimes just staring out the windows in my bedroom at the streetlights twinkling down on Greenwich St. and the steady stream of cars flowing up the West Side Highway. Minutes would tick by slowly as I waited for my mind to come down off its prednisone mania, or for the cough syrup I had taken (once again) in desperation to finally kick in enough for me to close my eyes. I would lie as still as I could, careful not to move lest I awake the monster in my chest, and pray for the lullaby of my oxygen concentrator to finally work its magic on my exhausted body. And then I would add an extra postscript, asking God to make sure that I would awake again in the morning. It was an afterthought that seemed to grow increasingly urgent with every passing night. Just please God, I begged, please let me rest -- and then let me try again tomorrow.
It seems like a lifetime ago that I lay awake attempting to bargain with my life. A lifetime since I stacked my pillows into a carefully crafted tower designed to allow me some degree of comfort while still keeping me more or less completely upright. (It never really worked, by the way -- I would awake more often than not curled over myself and sitting up cross-legged in an attempt to keep from gagging on the thick sludge blocking my air.) A lifetime since I grudgingly pried myself off the mattress and retrieved yet another paper cup from the kitchen as I powered up my Vest or the Frequencer, knowing that without yet another treatment there was no way I would get any rest at all. And a lifetime since I gasped oxygen in short breaths in between long coughing fits (I referred to it as "spasmatic" coughing -- it seemed the only term able capture the intensity and uncontrollable nature of those moments).
Or, you know, two months. Which is more or less the same thing when you're just trying to survive.
In these past two months my life has completely changed . . . sort of. And I guess it's a little hard to explain what I even mean by that, so I'm afraid you'll have to forgive me if this seems a little strange. One thing is for certain though: it's been a very strange journey. So at least this post is honest, if nothing else.
In some ways I feel like a totally new person. Or rather, I guess, I feel like I suddenly have the freedom to be(come) the person I was always meant to be in the first place. I have energy that isn't used up by inhaling, exhaling, and coughing. I have time that isn't devoted to treatments. Mental space that is no longer filled up with concern over when the other shoe will drop. There are about 500,000 little changes in my life that add up to a huge difference. Yesterday, when my wonderful transplant doctor looked at me seriously and asked whether I was handling the time consuming new drug routine okay, my honest reaction was to think he was joking.
Because this isn't time consuming; time consuming is 4-6 hours a day plus whatever exercise and eating you can cram into the remainder plus that nap you have to take plus the IVs and the sterilizing and the pills and the emails with your doctor and whatever other issues you have going on that particular day.
And this isn't frustrating because this is healing; frustrating is doing everything right every single day without a single break and still watching your numbers slide downward in a slow race to the bottom while you desperately try and avoid the next infection and constantly beat yourself up for not doing more, not being healthier, not staying above water. That, beautiful friends, is frustrating.
This is, well...this is life.
But at the same time, he had a point, and he wasn't joking, obviously. There are things about this transition that are hard. There are new drugs to learn and new side effects to manage. There are changes to my body both inside and out that can be waaay more difficult to wrap my head around than I thought some of them would be. There is a new identity of sorts to be reconciled -- am I a sick person with healthy lungs, or a healthy person with some sinus/digestive/immune system issues, or both, or neither, or does it even really matter in the long run what we label ourselves? Why did I get this transplant anyway? What are my goals and how willing am I to compromise them if it means a few more years in this amazing life with these incredible people? How much do I owe the many, many indescribable souls who helped me along this journey? How much do I owe myself?
I don't have any answers, but I sure have a lot of really mind-blowing questions. And who knows, maybe some of the answers will come with time, or experience, or just by the grace of God.
In the meantime, though, I'm (re-)learning to breathe. By which I mean I'm re-learning to be patient (rather than simply be a patient, which is a very different thing), to trust, to be grateful, to be scared without being paralyzed, and to re-build the sometimes tenuous connection between myself and this crazy beautiful thing called living. And with every breath in -- with every deep inhalation that now floods my body -- I am reminded that my quest to discover this semi-new self that I have become and always was will never really be over.
So please, God, let me rest tonight -- and let me try again tomorrow.
- 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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