What if you couldn't be around those people? What if you put their life in jeopardy by being near them, or that they were harmful to your health? You have experienced similar pains and joys of life, but you can never share yourself wholeheartedly with that person. You cannot show that person empathy or compassion through a hug, a quick visit over coffee, or just the touch on the arm. You can't even be in the same room, or building.
This is CF.
Because the bacteria fostered in the lungs of people with CF is so life threatening, we are a great danger to each other. I may be growing a bacteria that someone else has not yet been subjected to, and vice versa [MRSA, pseudomonas aeruginosa, NTM]. New and more bacteria means more rampant infections, more scarring in the lungs, worsening lung function, and respiratory failure. Per guidelines of the CF Foundation "Only one person with CF is allowed at foundation sponsored indoor events, offices, or meetings. If it is an outdoor public event people with CF should maintain at least 6 feet from each other." Great precautionary measures are taken in the CF clinic as well: gown and gloves for all who enter. Even though the bacteria that wreaks havoc on my lungs won't affect you, you can still be a carrier that leads to cross-infection.
Until the last year or so, I never realized how isolating CF was. I think of my last hospitalization, about the floor of the hospital and how many of us had CF. We were locked in our rooms, strategically maneuvered from one location to the next, and shut off from the only people who could truly understand. I could hear them coughing, or would catch a glimpse of them as they walked the halls, but never could sit on the edge of their bed and talk about life. Sure, I had my incredible friends and family, but I just wanted someone to really "get it." What do you do when all you want is talk to someone to justify that you aren't utterly crazy? That someone else feels and think the same things as me?
Community
For a long time I didn't want to read the stories of people with CF, I didn't want to read blogs, I didn't want to get newsletters about "what's happening." Why? It terrified me. It was much easier for me to be in denial about the reality appearing before me. Maybe it was a way to shut out the destructive fait I witnessed for 17 years with my brother? Maybe it was me caring too much what everyone would think if they knew? What changed? Honestly, I felt alone and terrified. I stumbled across a blog that so greatly impacted me: it is what gave me the strength to show the world the real me. The blog's author is Caliegh Haber from CA. She is 23 years old and awaiting the call for a double lung transplant. Because she is such an incredible individual tomorrow's post will be solely dedicated to her.
Look at the people around you. That hug you just gave? Cherish it. That breath you just took? It's a gift. My gratitude and love for you all overflows. Thank you so much for being my "community" and making each breath so incredibly beautiful. Love to you all.
Don't just call a friend today, go have ice cream together.
