Yesterday, for example, I got an email asking why I chose to get a transplant. Actually, what the email really said was closer to "why on earth would you willingly let them rip your lungs out of your body, replace them with a dead guy's, and then destroy your immune system to make the whole thing work? And then to top it all off you're now letting them inject you with rabbit guts? This sounds scary. Seriously, lady, you must be positively INSANE!!"
So I wrote back, and the gist of my answer was this: Good question, dude.
And then today I was called (via FB, at least) "intimidatingly positive," which I found particularly funny because most of my friends would probably consider that crazy talk. Because the fact of the matter is that I don't always have a super positive, go getter, CF warrior attitude when it comes to the stuff that is, as the email above correctly pointed out, kinda sorta definitely super scary. I wish I did because I think life in general is probably easier on optimists, but the real truth is that sometimes my own optimism falters, fails me, or just plain isn't around in the first place and I have to make do with the reality of the situation and a not-so-positive attitude. I tend to refer to these moments as "fear spirals" because that's what they feel like -- strong currents of scary circumstances that twist me around and force me into reactive mode, where I feel like I'm being flung in circles and don't really know how to break out of it and get back on track to something better. These moments are, thankfully, far fewer and further between now that I have my new lungs (initial scariness of receiving them notwithstanding, of course), but they still happen. And when they do, I've discovered that the best way to combat them is with what I call "retrospective forward thinking."
See, I told you I was crazy.
Retrospective forward thinking refers to the act of remembering all the goals I set for myself back when I was dying, and all the many reasons I came up with then for making the scary choice to let a doctors replace my vital organs. See, when you're fighting for every single breath and spending most of your time in a hospital bed or on the couch or hooked up to IVs/machines/oxygen, you have a lot of "free" time for stuff like personal reflection. And for me, most of that time was spent thinking about all the many awesome and wonderful things I would do once I got my new lungs. I passed hours and hours thinking, writing, praying, or dreaming about the goals I had for myself and the world I could create if I just kept pushing through all the bad crap, and believe it or not the list I came up with was actually a pretty good guide for what matters (to me, personally) in life. Looking back on it after my transplant I was surprised to see that it wasn't just sickly ramblings -- it actually makes a lot of sense. As a few examples:
- Give back to people who have given so much to me, both personally and on a larger scale. Find ways to make life meaningful that aren't just about spoiling myself.
- Spend time building relationships and seeking out connections. Look for people to learn from, to grow with, to laugh with, and to make each other better.
- WALK MY DOG!!!!
- Treat my lungs and my body as a gift to be cherished and as a vehicle to help me accomplish my goals. Seek out exercise that makes me happy, stick with it, and do whatever routines are necessary to keep me healthy, breathing, and able to be me.
Pretty simple, I know, but also really valuable. I find myself rereading these and my other goals over and over sometimes -- whether its because I'm in the hospital and receiving a scary new rejection treatment; whether its because my prograf level won't stay stable and I start to wonder if I'm REALLY doing all I can (Should I find a new drug? Am I eating wrong? Maybe I should try taking the drugs with water, at 11:11, while facing East and standing on one leg??); or whether I simply need a good kick in the butt to jump start my motivation and get back to it. To me these goals are like a contract I made between my mind, my body, and my amazing Donor Bob. I feel obligated to keep moving toward what I know is truly important (even if that changes down the road or from time to time) not just because I was given something wonderful, but because these are the things I chose to cling to when I needed it most.
Life. Purpose. Connection. Health. These are the real reasons I went through transplant, far more so than fear of dying or an abstract desire to stick around for a few more years (though those were part of it, not gonna lie). Those four core goals were and are what keeps me going, helps me through the scary stuff, and makes even the spirals seem like bad weather on an otherwise clear horizon. They are the main reasons I manage even the inadequate amount of positivity I can actually muster sometimes through all this crap that is CF.
And they are also, for better or for worse, what keeps me Piper -- and all the positively crazy stuff that goes along with it.