Thursday, March 14, 2013

The Latest Thing

Two years ago, I was angry.

I was at the time just a few months post-transplant. Not long before I had been struggling to breathe, gasping for air, and praying for life every single time I dared to fall asleep at night (assuming, of course, that I could fall asleep with all the coughing). I had been scared -- terrified really -- and I had been losing hope, but I had clung tightly to the notion that post-surgery things would be different. They were.

Immediately after waking up from having my lungs removed from my body, I realized I was in a whole new world. The drugs were different, the doctors were different, the ICU was different, the food was different, my body felt different -- even the floor on the hospital was different, as transplant patients have our own special ward. And, most importantly, I was different. I mean, sure, I was still me, still Piper, but I had gone from knowing almost everything about life with CF to knowing almost nothing about life with new lungs. For the first time in memory I was a "rookie patient" to some degree, and it was not a fun feeling for someone used to being able to tell even her doctors what's what. There I was, the "new me" I had been promised with all the breathing and life that I had hoped for, but also with a lot of questions and worries and general uncertainty. And, as it turned out, the "new me" was also a diabetic.

So I was angry. I remember sitting in the waiting room of my diabetes center making a mental list of all my grievances to unleash on my doctor or diabetes educator as soon as they called my name. I remember staring down at the waiting room floor from above my surgical mask, unwilling to meet the eyes of the germy little kids a few seats down or their parents who no doubt thought I was some sort of leper who should immediately be shipped back to my colony. I remember that I had just come from clinic, where I had been told AGAIN how badly I needed to gain weight, and clutching furiously at the insulin pen in my purse because I was completely unprepared for how to make that happen in a world where I didn't even know what I could eat, or how to eat it. Most of all, I remember this thought:

"I've lived through all this bullshit, lived with CF for 28 years, had my lungs removed, and now they're going to tell me I can't even just sit down and eat a meal like a 'normal' person anymore? Why won't they just leave me alone?!"

Fast forward a couple of years and I'm proud to say that I've moved on from asking that question all of the time. I have also, through a strange combination of eating habits, insulin, and just plain luck, been able to get my diabetes under control and keep it there. And of course I've adjusted to the "new" meds, learned some very important things about transplant through experience, and moved on to the next level of challenges that I know will always be present in my health, but that I also know now that I can handle. This doesn't mean I've become the perfect patient, by any means, but it does mean I've had some time to work with my new body, to figure out my own priorities within it, and to live with the restrictions of transplant (everything from no grapefruit to masks in hospitals to new and scary medical issues). Not just exist with them, mind you, but really live with them.

And I'm proud of that. I'm proud of us.

Life with CF is a constant adjustment, and anyone who says that it's not a challenge to make those leaps is flat-out lying. When I burst into tears one day at my nurse after she told me I couldn't attend a large, indoor party not far out of transplant, she thought I was nuts. I'm sure she was wondering why I cared so darn much about one stupid thing when here I was, alive and breathing. Seems silly, right? But the simple answer was that I didn't care so much about one event. I cared about the total sum of the change, and I cared a whole heck of a lot that my disease was allowed to dictate what I could and could not do. That, for me, was and is and will always be a huge deal. If we don't acknowledge the loss inherent in imposing even seemingly small (but collectively HUGE) restrictions on those with chronic illnesses -- for whatever reason -- then we fail in recognizing the entirety of the experience.

Ultimately, I'm glad I got my sugars under control, as much as I wish I'd never had to. I'm glad I got new lungs, as hard as that was and in some ways continues to be. I'm glad I'm alive and grateful to the people who helped get me here, no matter how much loss was incurred along the way. But that doesn't mean I'll let my gratitude be the only thing I feel. It doesn't mean this stuff is (or even should be) easy to accept all the time, just because it might make sense medically. And it doesn't mean I won't work as hard as I can, with every breath of this "new" life I've been given, to make sure that I continue to (re)create myself and my experience within each new circumstance. Because as far as I know there's only the one thing CF can never control: us.

Love and light, beautiful people.

Friday, March 8, 2013

The Best of Times

"It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity, it was the season of Light, it was the season of Darkness, it was the spring of hope, it was the winter of despair, we had everything before us, we had nothing before us, we were all going direct to Heaven, we were all going direct the other way." -- A Tale of Two Cities

When I first read these lines in my high school English class, I remember being pretty ticked off. For starters, I was 100% sure that if I ever wrote a (run-on) sentence with that many commas my English teacher would promptly kick me out of the class. For another, I was also certain I was going to have to write an essay on the meaning of Charles Dickens' famous opening line, and I had absolutely no clue what that meaning might actually be. This line meant that I was immediately turned off by a book and an author that, as an English major and then a law student, I would find myself returning to over and over and over again. And yet, as many times as I read it, I never really understood that one long, annoying, contradictory, and admittedly brilliant first sentence. I pretty much decided Mr. Dickens must have suffered a slight case of multiple personality disorder and left it at that.

Until now, anyway.

Several hundred miles from where I sit right now, people are gathered together in a room at the CFF's annual Volunteer Leadership Conference. Sadly, infection-control rules and respect for my own health and that of my fellow CFers means that I can't be there with them in person. Instead, I spent yesterday having a bronchoscopy to determine the cause of a severe drop in my lung function over the past couple of months. I am now spending today with my puppy, watching the snow fall, hopped up on more steroids than a professional baseball player, and getting ready to start yet another course of hardcore antibiotic treatment to fight the ongoing pneumonia in my lungs. It is, I'm pretty certain, the kind of day I could spend feeling legitimately sorry for myself if that were my style, if for no other reason than I'm finding myself once again fighting an uphill battle against this obnoxious disease. If for no other reason than I wish with everything I've got to wish with that people with CF weren't limited by things like infection rules (necessary as they are) and bronchoscopies. If for no other reason than we haven't cured this damn disease yet, and quite frankly, it's been too long already. If for no other reason than it is winter, and according to Mr. Dickens that might just be reason enough.

But it's not.

This winter, the CFF is moving forward with a speed that, just years ago, would never have seemed possible. We have an end game in sight, and all we need to push us there is money -- and a little bit of magic. And magic, guys, well, the CF community has always had that in spades. More importantly, we have the people we need to lead us there -- and by that I hope you know I mean you. I mean all of us. Hearing from CFers participating in the conference safely via live stream makes me smile. Watching the internet fill with pictures of slides and real conversation about the future makes it even better.

Spring of hope, indeed.

I also just heard from my own doctor, who told me that although my current situation is frustrating, it is also super hopeful. Steroids, while obnoxious, stand a very good chance of knocking this thing out and returning to me the lung function I thought I had lost. This snow, which I thought was pretty much just useless bad weather, instead turned into a celebratory romp with my puppy as I watched him delight in turning himself into a wet, smelly, snow-covered mess that promptly curled up on my couch as soon as we got back inside. I don't mind one bit. I have meds to start, friends to visit, money to raise with the great folks from the Cystic Fibrosis Awareness Foundation, and a whole lot of life to live this weekend.

I'm a firm believer that patience is the hardest virtue out there. Being sick and waiting for the numbers to come back up, working hard and waiting for the science to be there, knowing the science and waiting for the drugs to help specific mutations, finding the drugs and then waiting for approval -- these are the most frustrating and the most hopeful situations I can imagine. They are the moments when we feel the most overwhelmed: with excitement, fear, happiness, urgency, and pretty much everything in between. They are the best of times, they are the worst of times. And we, beautiful people, are blessed enough to live in them, walk through them, and to write our own stories.

It is the season of Light. And we have everything before us.