Thursday, September 25, 2008

"It's Hard, It's Messy, and It's Beautiful"

Tonight is one of those nights that feels just kind of surreal. Maybe it's because the weather is changing and fall is definitely moving into the city. Maybe it's because of all the stuff that happened this week. Maybe it's because of some of the amazing blogs I've read from other cystics (or partners of cystics) lately and all the truths they've passed along to me through their writing. Or maybe it's just because I don't feel so great again and that's always discouraging.

Whatever the reason, tonight for me is all about thinking: about myself, my life, my disease, my family, the beauty of the nightfall, etc. I guess to really put this into perspective I have to share something I haven't mentioned yet on this blog, or really anywhere. So here goes...

I was never hospitalized for anything, CF or non-CF, until I hit 16. In fact, I had only ever had one tune-up before that age. After I turned 16 I started in on a once or twice a year rotation, but my PFTs stayed really high. By really high I mean that four years ago, when I graduated college, I had a baseline FEV1 of around 85%, definitely mild for a CFer. I got "sick" about every six months or so and went on IVs for 2 weeks. After that, I would be totally fine for a long time. Compliance was definitely not my first priority (frankly, it wasn't my 2nd priority either). I rarely felt like I had CF, although it was on the backburner in my mind of course. I just didn't see any of the statistics (and I know them all from speaking at CFF events, which I've done since I was little) as applicable to my own life. I had friends with CF and considered almost all of them to be "sicker" than I was.

In 2006, I got seriously ill. I mean, out-of-control infection, can-barely-walk type of ill. By then I was older, I was in law school, and compliance/staying healthy had taken on a much more important role in my life. But I still didn't want to be sick, so I just refused. I don't honestly know what happened, to this day, except that I stopped contacting my doctor and didn't go to clinic. I did all the meds because I had standing prescriptions, but I wasn't going to stop my life to actually deal with the problem. Honestly, I think I was terrified of going in and seeing my numbers and I really wanted to enjoy my 3L year, so I just chose to ignore the whole thing.

New Years 2007 I spent in Sydney, Australia with my family. Yes, I convinced my parents (who were justifiably skeptical of the whole idea) that it was okay for us to go even despite my obvious failing health. That trip was unbelievably terrifying: I couldn't breathe and I was trying to do things like snorkel in the ocean on the Great Barrier Reef, I could barely walk, and my weight was so low that I still can't look at the pictures. Gross. Worst of all, my hands and feet were literally going numb - they had lost circulation to the point where they always felt on the verge of falling asleep. To say I was in bad shape would probably be the understatement of the century. On the way home from Australia I broke down to my parents, told them about my recent stint of avoiding the doctor, and basically swore up and down that I would try to make things right as soon as I got home. And I did. I called my doctor the minute I got in, scheduled an emergency appointment, and haven't gone more than 6 weeks without seeing her since. I also became 100% compliant with every treatment she prescribed, I started exercising - basically I bit the bullet, admitted to myself that I had squandered my safety net, and did what I needed to do.

The title of this post is taken from a comment that a wonderful fellow CFer left on my blog after the last post. I can't think of a better way to sum up my thoughts and feelings tonight. "It's hard, it's messy, and it's beautiful...all at the same time." This disease has taken a lot from me, and I've made a ton of mistakes on my path to learning how to deal with it. I am going to make a ton more, that's the one thing I can predict. But at the same time, there's a beauty in the whole thing. Not in having this disease (I won't go that far), but in surviving with it. In accepting the fact that it sucks, in overcoming all that frustration and f-ing hopelessness that hits sometimes, and in understanding that despite all the madness, it might not end perfectly, but you still keep breathing.


  1. It's amazing how one event can turn our lives around. I'm glad you bucked up and became compliant. I think at a certain point compliance becomes a neccessity rather than an option...if that makes sense. I know for me right now, being compliant is the ONLY thing that allows me to walk and talk, literally. I know if I didn't I could not get out of bed or make sentences because breathing would not happen. And I think we all go through that phase of non-compliance at some point :) It's like the initiation into CF-hood haha!!!!!

    See you tomorrow my friend!!!!!


  2. Hey Piper,

    I'm not sure if you'll see this now that it isn't your top entry, but I just wanted to say that I think your blog is awesome...honest, insightful, well-written. I really enjoy it!

    I've also realized in reading that there are a lot of similarities between us. Like you, I was doing really well and then got sick and declined fast...and now I'm thinking about being evaluated for tx.

    Anyway, I think you're really amazing and I look forward to continuing to get to know you and hear more about where your CF journey has taken you.