Friday, January 7, 2011

Take Your Time

Don't you just love those moments/minutes/hours/days when you know you have something you want (or need) to say, but you have no idea how to actually express it? I'm sure you all know what I mean; it's that desperate feeling of being without the right words (or actions, or images, or whatever floats your individual boat) to get across the emotion you want to convey. It's a sense of being unable to communicate with those around you and therefore setting yourself up for misunderstanding or isolation. In short, it's what I imagine drowning must feel like -- or pretty darn close anyway.

Lucky for me, I don't find myself rendered speechless very often. This in and of itself is probably both a blessing and a curse (depending on who you ask), but it at the very least saves me the discomfort that goes along with unexpressed emotion. And in a world as intense as that of chronic illness, hospitals, and shortened life expectancies, being able to lay it all out there even if it seems melodramatic or overly intense is, quite frankly, not the worst flaw I could have inherited. (And yes, Daddy, I'm looking at you.)

But, like all rules, there are exceptions. I am, for example, not good at any conversation I perceive as overly needy. I'm not great at letting people know when they're frustrating me BEFORE the proverbial shit hits the fan. And I'm not a huge fan of dealing with things that I find super scary or truly, deeply uncomfortable. In those situations, I tend to turn either to humor or to simple avoidance. It's easier for me to do a very brief or generalized acknowledgment of something harsh than for me to really go the distance and express how bad or overwhelming the situation really is. And, this, unfortunately, is NOT the best trait to have inherited in terms of illness and life. In fact, it's something I really need to work on, and I plan to give it a solid effort in the year to come.

So here goes nothing, right? Or rather, here goes everything...

According to the banner at the top of this blog, I write about "Life, Lung Transplant, and Cystic Fibrosis...and Everything In Between." Quite honestly, though, I consider this blog about Life, more than anything -- it's just that "My Life" in particular, happens to involve a whole lot of CF with a hefty dose of transplant thrown in for good measure. Or at least that's the situation right now, and that was the impetus for starting this blog in the first place.

But the simple fact is that any blog about CF and lung transplant (and indeed about life, for that matter) also needs to include something that's not quite as fun as miraculous near-misses, great doctors, an abundance of expensive drugs that I feel privileged to use despite their side effects, and stories about lives reclaimed. And I honestly feel strongly that I would be remiss to head into 2011 without acknowledging that, and without sending out -- if only from a distance -- my support to the many members of our community who are facing the harsh reality of CF that, sadly, brings to a close all those other crazy beautiful miracles.

This all came to a head a few days ago, as I struggled valiantly with my move (read: fell into an infection-induced stupor on the floor of my new room while my mom sorted boxes and furniture). As part of the joys of moving, I was somewhat distracted and less involved in any and all things CF-related for a few days, something I generally consider good for my sanity anyway. Unfortunately, I was also less likely to email people within the community who wrote me through FaceBook or the blog. And I know that sort of thing happens, but it's not my favorite thing to have happen -- especially when someone emails me about her fears with getting listed for transplant and I know that I have to leave it for a few days. That just kind of sucks, even if it is inevitable from time to time.

What sucks more, though, is that when such a thing happens in the CF community, the person isn't always around when you finally get your act together. And the truly heartbreaking reality is that you might find yourself remembering a young woman who was amazingly brave in the face of failing health and other challenges, who looked incredibly cute in the pictures she took to document her fight (all wearing the lung shirt that you and your sister designed), and who had always been nothing short of an inspiration in her several previous emails to you. You might just find yourself sitting baffled at the computer, wondering how just a few days could make such a huge difference -- and knowing that there but for the grace of God go all of us when it comes to this deadly disease.

So please excuse that this post isn't a particularly happy one. Those moments still exist in this world, and I think it's super important to share them. Actually, truth be told, I think CFers are pretty remarkable in our collective determination to look on the bright side. And Summer, you were a perfect example of that. But as a self-proclaimed hippie and a woman of faith, I know you'd also agree that there is, no doubt, "a time to dance, a time to mourn...and a time to every purpose under Heaven."

And beyond it, as well.


  1. Well Stated Pip, I too turn inward or use humor to divert the uncomfortable, but I'm sure you (much like me) eventually pull yourself up by your bootstraps and face it head on eventually. I understand you feel like you let people down when you don't get back to them right away, but know you have been a friend to so many of us when we needed it most. For me we had to stop work about the same time, went through the transplant process at the same time and are now recouping (in my mind) together. Hearing your trials and accomplishments means the world to so many of us and you have been there so much more than not. I guess what I'm saying is give yourself a break. We all wish we could help everyone I get so many PMs and emails now from CFers and Transplant people its amazing and I'm sure you probably get even more than I. We can only do what we can, and you continue to do so much. Love and Light....Jim

  2. Piper, this brought tears to my eyes as I got to the last paragraph and immediately knew you were writing about Summer. Summer was a great friend and amazing person. I feel privileged to have known her. Believe me, it came as a complete shock Thursday morning to get that phone call with the news when I had just been visiting with her Wednesday night. I haven't blogged in awhile now because the words haven't come to me, and I'm not sure I'm ready to write about Summer, so I thank you so much for putting into words the thoughts that have been circling in my head. Love and Light to you and yours!

  3. Oh no, no, NO! I hadn't heard about Summer until reading this. She and I were not necessarily close, but I truly enjoyed the interactions we had. I am just so upset right now. Thank you for sharing this, Piper.

  4. Piper, I follow your blog because it's nice to read about someone who is beating CF(as much as one can until a cure is found). But it's important for us all to remember that while some are winning the fight, a lot have lost that fight. It is ironic that you wrote this on the day that marks 2 years since a good friend of mine lost his fight with CF. I had just visited with him a few days before and then he was gone and I longed for more time to tell him how much he meant to me. Thanks for the reminder to not take life and friends for granite. Tomorrow is not a guarantee for any of us.

  5. Piper, I'm sorry you lost your friend. Please don't feel guilty for living life. {{{hugs}}}