Archive for November, 2007


November 5, 2007

Today is my 35th birthday. And it’s my birthday that brings me here to my desk to write, while my husband watches the Simpson’s in the other room. But don’t stop reading yet. I’m not going to rant about getting older or wrinkles or the youth with their overly short skirts and baggy butt pants. I’ve started this blog to fulfill a promise I made to myself to write about living as an adult with cystic fibrosis. And I started it today because today I have officially lived beyond my life expectancy.

The idea to write about what it’s like to live with CF has been with me for a long time, but I never wanted to delve into it, preferring to use my mental and emotional energies in graduate school. Then, it became one of those, once I finish my dissertation… once I get a job…; once I wash the dog… kind of things. Then, one afternoon I had a conversation with a young woman with CF that finally gave me the courage to begin writing. We were sitting in the waiting room at our doctor’s office, periodically we watched each other from across the room. I suspected she might playing the “I wonder if s/he’s got CF” game I often amuse myself with in the waiting room, trying to pick out the patient from his or her family member. For her, it wasn’t an idle guessing game; from across the room, she just flat out asked if I had CF and when I said yes, she said, “Do you mind if I ask, how old you are?” When I replied, “32, almost 33,” the first thing out of her mouth was, “you’re a miracle.” She was 18, with long brown hair and thin, struggling to put weight back on after a “flare” that put her in the hospital, and a little afraid. I was caught off guard. Then she shared that she had never met anyone with CF as old as me. She was in disbelief and, I think, a little hopeful. She added, I can’t wait to tell my friends, they’ll be amazed. I was a bit saddened by her surprise; it was as if she had never considered the possibility. At that moment, I knew I had to begin writing.

Even still, it has taken me two years to come to this point. But, here we are.

When I was diagnosed with CF in 1973, the doctor cautiously informed my parents that I might live to be seven. A huge blow to new parents that, thankfully, they took with conscientious hope and a determination that they passed on to me. In this context, being thirty-five seems very dramatic; but in fact, today, about forty percent of people with CF are living into adulthood – some well into their thirties, forties, and even their fifties. Not everyone, of course. Many in my CF cohort – the would be thirty-somethings – left this world more than a decade ago. It was hard to watch them go and I miss them still. I’ve been left with a touch of survivors’ guilt, which, I suppose, is why I am so uncomfortable with people referring to my life as amazing or a miracle (the “m” word). It’s just too much pressure. Every celebratory milestone event seems too weighed down with mortality, that this might be the last big thing. And at the other end of the spectrum, every rough spot comes with the anxiety that it won’t be possible to bounce back. Sure, I allow myself to wallow in self-pity from time to time, but only for brief moments and then I remember – I’ve got dreams to follow, things to do, places to go, people to see. I look up and go forward. To me, there is no better way to honor and remember my friends.

So, for the next year (and maybe beyond) I have committed myself to keeping a weekly reflective journal on what it’s like to live with CF.

Happy Birthday.