The Best Laid Plans

A little over a year ago, I did something I really wasn’t sure I would ever be possible for me. As a child with cystic fibrosis, my parents worked hard to give me “normal” life expectations – they encouraged me to talk about my career aspirations, to plan Continue reading The Best Laid Plans

To My CF Friends:

I want to tell you all about some amazing people.

Several years ago, in 2009, I was lucky enough to meet and connect with another woman near to my age in New York who was also going through the transplant evaluation process. She Continue reading To My CF Friends:

How to Grow

When I was growing up in the 1980s, it sometimes seemed tough to find adult role models who also shared my disease to show me what it looked like to be a “grown up” with cystic fibrosis. We didn’t have widespread access to the internet in those days, and even the Cystic Fibrosis Foundation’s Great Strides walk to cure CF wasn’t started until 1989, so the primary point of connection with other people with CF was the clinic waiting room, which didn’t exactly lend itself to deep conversations. Many people in my generation were lucky enough to attend one of several CF camps operating back then – bustling hives of campers and counselors where kids with CF could bond over shared illness and shared laughter, all while gleaning wisdom and support from older participants – but I was heavily into competitive horseback riding and never attended those summer getaways.

So, as you can imagine, I clung fiercely to those CF mentors who did find their way into my inner circle. There was the woman from my small(ish) hometown who had CF and a successful pregnancy after the doctors warned her not to, and from her I learned that sometimes pushing boundaries can have incredible results. She and her son are still thriving today – and I now kind of love seeing her smiling face pop up on my Facebook feed. There was another young woman in her 20s who attended the American Airlines Celebrity Ski event along with myself and two other girls my age with CF. She was far sicker than anyone I had ever known with CF, and yet she showed up every year (sometimes with a PICC line in place, her oxygen tubing snaking off her too-thin frame) – until one year she didn’t and I experienced one of my first lessons in the brutal reality of the CF monster. In her I recognized the importance of connection, of showing up, and of grace under fire. I also remember her snarky, somewhat irreverent sense of humor, and how I promised myself that I, too, would find laughter in the shadows. And there was a young man, pushing himself through college as I tried to adjust to high school with CF. He and I often shared a “suite” in the hospital (two single rooms connected by a shared bathroom – what passed for infection control in the 1990s) and I would watch him with his open textbooks sitting at the nurse’s station to use the ward’s sole patient computer. I was impressed by his dedication, especially as he continued to struggle with his health, though I sometimes wondered what he planned to do with his degree once his frail body earned it. He was the one who told me, shortly before his graduation, that having goals despite an uncertain future was an end unto itself. Through his example, I realized that taking a leap of faith is worth it, nowhere how you land.

As I grew older with CF, through college and law school and my career and transplant, I found other ways to connect with the CF community. I discovered Cystic Fibrosis Research, Inc, the CF Roundtable newsletter, the CFF’s Young Professionals Leadership Committee, Cystic-L, and, of course, the internet. I met more and more adults with CF who were (and are!) challenging norms, defying expectations, and pushing themselves in ways that inspired and delighted me. I’m proud to say that I can now place myself securely in the company of a thriving adult community, which is good, because I have many, many more lessons to learn.
But I still remain grateful for those early lessons, from mentors who probably didn’t even know important their guidance was to me at the time. I often wonder what the examples we set today will mean to those coming of age now, as this amazing adult community continues to grow – together.