A funny thing happened right around the time I sat down to write about my experience with CFRI’s Adult CF Retreat. Although it’s existed for nearly 30 years, evolving to provide those of us fighting Cystic Fibrosis with a safe space to connect, those of us who organize it became aware via social media that there are more people out there than we realized who don’t know about it, or fully understand it.
I don’t claim to have an empirically objective point of view. But I know what I’ve witnessed, and it’s great. Since I’m here, I figure the best way to respond to this moment is just by sharing my own story about how I came to Retreat and why I believe in it the way I do.
So… welcome to Retreat “rap,” what we call our unique flavor of support-group sessions. I guess I’ll go first. I’m Todd. 50, with CF. I’ve lived in Los Angeles since ‘96 but I’m from a farm town in Oregon. I grew up in a place where I didn’t know anyone else with CF, in a time when the internet wasn’t a thing. So, the one week every year when I got to camp in the mountains with other CF kids was the most exciting and encouraging thing I had to look forward to. Looking back, they were collectively the most self-affirming experiences of my childhood, which gave me strength in ways that were untouchable to my “normal” friends, family, doctors, or anyone else.
It was the only space where I was on a level playing field and my personality was given enough air to breathe, so to speak. Swallowing fists full of capsules every time I sat down to eat with peers. Stopping while laughing or playing ball to have a purple-faced coughing fit and hock an atomic grade loogie. Laying upside down on a board while grownups pounded me with cupped hands. Or staring into space on the merry-go-round because my little brain was grappling with mortality and loss in ways most kids aren’t burdened with…
None of those were things that made me a freak there. At Camp Tapawingo, they’re what bonded me to those other kids. At that place, they were what allowed me to connect without even speaking, to know on some deep unspoken animal level that I belonged. That with regard to my weird condition, I actually, truly, was not alone.
I remember the dances, the cafeteria food fights, the campfire singalongs, the memorials in the creek where we sent candles downstream. I learned what a real crush felt like there. The way doctors, who also were some of our camp counselors, reinforced our med routines. And the profound effect of seeing older boys with CF. Strong, charismatic and proud dudes with my same weird condition. Alive. They gave me hope. Like Tony, my Jr counselor, with a troublemaker’s crooked smirk and raspy laugh. I believe he’s the one who started the food fight, come to think of it.
This is where I draw the parallel to our current Retreat. The place where the living memory of the old camps survives through us. It’s our collective community’s heart, beating on. An alternate side-universe where it’s us who dictate what normal is, where we give each other support just by occupying the same space.
Naturally, some things are different now. We keep our distance and never touch each other, often wearing masks. Covid tests are mandatory. We all get served food by non-CF volunteers who also wipe down our chairs between sessions. We have isolated sleeping/bathroom quarters, transplant-level ventilation, and anybody with a history of resistant cultures must stay home but can remain connected by joining virtually.
But we still craft, we do stupid skits, we swallow our fistfuls of capsules and smoke nebs free of judgment. We play bongos. We dance like fools. We Zumba, learn from experts on topics tailor made for us, light candles at memorial, share our perspectives on living with this pain in the ass disease generator that also gives us superpowers, and we laugh our butts off.
Look, it’s a dangerous world out there, man. But for adults with CF navigating it, we have this gift of a lily pad to hop onto once every 12 months for a mutual recharge. Like a bunch of Kryptonians soaking in the sun from outer space and loading up on cafeteria bacon before heading back to Earth to fight Lex Luthor. We are the sun for each other. Retreat reveals that fact so clearly it’s blinding. Don’t let Lex convince you that we are actually each other’s kryptonite. Our presence has shown we don’t have to be.
Ok I’ll shut up now and let someone else talk. Thank you all for being here to listen. I’m seriously very grateful to everyone who sees the value and participates in this special group hang. You are what keeps it going. You and the bacon, if I’m being honest.
By: Todd Giebenhain
