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.