CF Friendships Are Worth the Cost

Brandon was my first close CF friend. We met decades ago during a hospital stay as teenagers, before the medical community understood the risks of cross-infection among CF patients.

Growing up with CF, together

Brandon and I didn’t have the internet or portable electronics to keep ourselves occupied, so we did whatever we could to pass the time during the weeks spent in “lock-up.” We drove the nurses crazy using unopened rolls of toilet paper as footballs, having wheelchair races up and down the halls, and just being teenagers in general.

When we wanted some quiet time, or if one of us was having a rough day, we would sit together and talk for hours about anything and everything, making these elaborate plans for ourselves and refusing to believe we would never live long enough to achieve them.

Out of touch, but not out of mind

Eventually we lost touch when we both aged out of the pediatric program and ended up at different care centers, but I thought about him often.

Several years had passed after our last hospitalization together when I found out Brandon had abruptly earned his wings. It’s been nearly 20 years since that day, but I’ll never forget where I was standing in my mother’s kitchen when she told me, “Honey, Brandon died. He caught pneumonia and just couldn’t shake it. I’m so sorry.”

To this day that memory still brings tears to my eyes because Brandon was my first – my first true friend and my first true loss. But as most of us in the CF community have come to learn, our first is never our last.

Making friends with cystic fibrosis

My fellow CFers are some of the most amazing individuals I’ve ever encountered, fighting their entire lives for just one more breath, one more experience, one more chance.

Prior to social media, our ability to forge friendships within our community was severely limited, but modern technology has enabled us to break down the social isolation barriers associated with the CF “6-foot rule,” and has provided us the opportunity to be involved in the daily lives of people facing similar battles.

We can cry with them, we can laugh with them, and we can celebrate milestones with them. We can do almost all the wonderful things “normal” people do with their friends, there just happens to be one big catch – with CF friends, we know there’s a high likelihood we may eventually watch them die.

Building a CF community

In the years since Brandon, I can’t even count the number of friends I’ve lost to this monster, and yet I still find myself searching for others like me. So why do I do it? Why do I purposely set myself up for a broken heart?

For me, the reason is simple. Having a CF friendship means relating to another human being in a way that no one else will ever understand. It means having a source of compassion, love, and motivation that can only come from someone who has walked that same rocky path you’ve found yourself on. Separated by 6 feet and sometimes thousands of miles, a CF friend is your family forever, and no amount of future heartbreak could ever deter me from seeking that out.

Tell us about your experience in the comments below, or share your story with the community.