Community: Found

I remember the first time that I understood that cystic fibrosis made me different. 

| 6 min read
Piper-Beatty-Welsh
Piper Beatty Welsh, J.D., M.P.A.
Screenshot_Tara, Amy, Christy, Kristin, Piper, Talana, Emily

I was 9 years old and in the fourth grade, sitting cross-legged in a circle with my all my classmates. We had a speaker that day, a nurse from a local hospital, who was there to enhance our study of basic human anatomy -- complete with visual aids and little plastic organs. As she discussed the lungs, explaining that they expand like a balloon to help our bodies take in oxygen, she suddenly reached into her bag and pulled out two boxes of plastic drinking straws, one regular and one coffee-stirrer sized. She passed the boxes around the circle, instructing us each to take one of each size straw. Then she held up the regular straw and asked us to breathe through it for 30 seconds. "And that," she concluded dramatically, "is what it feels like to have asthma."

Breathing in the salty air with my big sister Erin, circa 1988.

I glanced down at the coffee straw still sitting in my lap. I wasn't sure why, but I didn't like where this was heading.

Sure enough, the kindly nurse then asked us to place the coffee straws in our mouths and breathe through them for an additional 30 seconds. As I lifted the tiny piece of plastic, I debated not following her instructions -- I knew it would make me cough and those tiny holes looked awfully small to breathe through for a whole half a minute. But I was nothing if not a rule-follower and, well, an adult had asked me to do it. I placed the straw in my mouth and I began to breathe.

It was a relief when she finally called time and asked us to stop, all of my classmates grinning and sputtering as they came off of what had been, for them, a fun and slightly dangerous-feeling experience. A few deep breaths and we were all of us more or less back to "normal," though I still felt shaken up by the entire ordeal and could feel my heart beating fast in my chest. "Breathing through that coffee straw," explained the nurse, "is how it feels for people with cystic fibrosis."

It's funny how a simple sentence, a single second in time, can change your whole perspective.

It was that instant, more than the treatments or the coughing or the enzymes or the clinic visits or even the extra attention I got at our local Great Strides walk every year, that finally made me realize that not everyone in the world could relate to having CF, or would ever truly understand what it meant for my family and me. And it was also in that moment, more so than any other, when I finally started to understand that I belonged to something special. Because as the nurse continued to talk about rare diseases and the need to keep our bodies healthy, I began to wonder what it might be like to know a lot of other people who breathed like me. Visions of a whole community of "straw breathers" and the people who love us danced in my head, and even back then, my 4th grade self made a connection between that community and the work that would need to be done to finally make CF stand for "cure found."

New Reasons to Connect

Fast forward almost 20 years to my 28th birthday, which I celebrated on the lung-transplant list. Once again, I found myself acutely aware of my own need to share this experience. I wanted to learn from others who had gone down this road before me, to connect with those who would stand with me,  to hear the stories of those like me, and most of all, I just wanted to know I wasn't alone.

And luckily for me, I wasn't. So I started a blog, I got connected, and I began a conscious effort to engage with all the other straw breathers and our families that I could find. I did it to share my story, of course, and to offer hope to others who were facing serious obstacles with their CF or struggling with lung transplant. But most of all, I reached out for me. To find my lifeline, my circle, and my community. 

A Wider Circle

They say the internet has made the world a smaller place. A student in China can now connect instantaneously to a peer her age in Wisconsin.

But for the CF community, our world is undeniably made larger. Because let's face it, guys, when you've got approximately 70,000 people worldwide who share your diagnosis, any opportunity to share, to listen, and to learn is something to cherish.

Screenshot_Tara, Amy, Christy, Kristin, Piper, Talana, Emily
Online get-together with some of my CF friends! From left to right: Tara (full-screen image), Amy, Christy, Kristin, me, Talana and Emily.

In this morning alone, I have managed to check in on a friend who is awaiting a lung transplant, share an article about new CF research with a Facebook group dedicated to keeping up with the latest medical developments, tweet and email my support for a national advocacy effort. 25 years, two transplants and a half a lifetime later, I find myself still sitting in a circle surrounded by friends. My dream of a community of people coming together, roaring loudly through our coffee-straw lungs and demanding acknowledgement of our disease and our experience, has finally become a reality. Only in this wonderful circle, the people sitting next to me might be thousands of miles away. And yet, in so many ways, we're closer than ever.

Happy sharing, beautiful people.

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Piper-Beatty-Welsh

Piper  was first diagnosed with CF at 6 weeks old in 1981, and has since been the survivor of two double-lung transplants. Piper attended Emory University, received her J.D. from Columbia University Law School and then went on to earn her master's in public administration from New York University's Wagner School of Public Service. She is the owner and author of the popular CF and transplant blog, A Matter of Life and Breath, and lives in Colo. with her husband and puppy.

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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.