Sunday, December 16, 2012

On Swimming Through Fires

It's been kind of a rough week in CF land. And in the interest of full disclosure, please read this blog in its entirety before sharing with any young CFers or other children. It's not obscene or inappropriate, but it does deal with the harsher parts of cystic fibrosis.

One of the most painful realities of CF is that the more involved you are with the community -- the more you take the time to share with, learn from, and work alongside of other people who share your disease -- the more likely you are to come face to face with the super hard fact of how rotten this little monster really is. Or, to put it bluntly, the more likely you are to know people who will die. Of your disease. Of your complications. Of parts of your illness that you may or may not experience yourself, and may or may not survive if you do.

And let me tell you guys right now: it sucks. All of it.

Whether it's watching desperately from Facebook as a friend dies awaiting lung transplant and knowing that you were lucky enough to be given that gift, or watching from across the hallway as one of your friends struggles with severe complications FROM lung transplant and knowing you haven't necessarily escaped unscathed after all (and you certainly can't let your guard down NOW, if ever) -- well, it's all pretty much equally sucky, and it's all very much part of day-to-day reality of cystic fibrosis. And just because it's a side of CF that most of us don't like to talk about all that much, that doesn't make it any less true. For any of us.

I sometimes think about the lines from Mary Oliver's beautiful poem Dogfish:

And nobody gets out of it, having to
swim through the fires to stay in
this world.

And I know that there is truth in what she writes here, that nobody gets out of it.  I know that CFers aren't alone or unique in facing struggles -- even when it seems like we are, or maybe like we should be. I know that even a disease where surgeries become "no big deal" and the only hope for realistic, long-term survival is either to replace your vital organs or somehow find a way to modify your very genetic makeup, the things that make you what you are, is still not the be-all-end-all of human suffering. I know that when we start to think like that about CF it becomes isolating, paralyzing, and even self-desrtuctive. I know all that, and I know that every single one of us, everyone and everywhere, will have a moment when we are "swimming through the fires", and that mine are no more or less important than anyone else's. And nobody gets out of it, after all.

I know all that. Of course I do. But I just wish I didn't have to know it so damn well.

My heart goes out this holiday season to all of us who are swimming through fire, and especially to those who swim in my particular river. To my friend who celebrates the life of his sister taken far too soon, my beautiful girl who lies fighting on life support for her 1-year-old lungs so she can marry her fiancé next summer, my super smart friend whose heart is now too weak (barring a miracle) for new lungs to come, and all the rest of our wonderful underground who need help, love, positivity, or just a simple breath of air. You all are so much my current, my river, and my healing water that this fire, hot as it is, will never stand a chance.

And I will swim with you for as long as it takes.


  1. Sorry that you are feeling the sadness of this dark time, and hoping you feel some joy over the holidays. Love, Beth

  2. Thanks for posting this, I was just FB stalking a friend who died this summer 2 months after his TX. I've been having some anxiety the past few days thinking about my lungs. They are fair, but know that shit can do down fast..... I need to see that I'm doing everything I can to take care of myself and have a great support system, still fuck CF. Thanks, have a good day. Rest up.

  3. I love the positivity and realism, Piper. Warms my heart as a CF dad to see a young woman like you take center stage against this disease...breaks it in 1,000,000 pieces to know what CF really is. I hope your friends pull through.