As some of you know, I was selected by the SC Chapter of the Cystic Fibrosis Foundation (CFF) as one of Charleston's "Best & Brightest" for 2016 and will be spending the next few months learning about the disease and raising money to help the CFF (please, please, please donate HERE if you can).
Although I've learned a lot about CF over the past few months, a friend of mine provided me with a small glimpse into the disease. She wrote about her experience so I could share with my readers.
After reading, please donate to my CF fundraiser here!
"A CF Sister"
By: April Zimmerman
Cystic Fibrosis. Two words rarely raised in conversation among our family, but the memories and absences they left still nest in the deep, daily parts of our lives.
When I slid from elementary into middle school, I left behind an awkward childhood and unfortunate fifth grade yearbook photo for an even more awkward puberty. My friendships seemed to shift rapidly and I drifted off into average while my former besties roamed with the coolest kids and the widest bellbottom jeans and the prettiest soccer players. Sixth through eighth grade deliver a weird, formative, sometimes-painful rehearsal before the hormones of high school drama unfold.
When my sister, Karen, passed away from Cystic Fibrosis at the age of 29, I was a weird Maryland sixth grader who didn't know real, close, scarring loss. I don't remember the day she died. Not at all. I couldn't tell you the day of the week or whether it rained or who told me or how hard I cried.
My brother, Michael, died two years later from CF. I remember. I remember coming down the stairs of our two-story duplex. I remember seeing my little brother, Joey, and my mom huddled on our blue carpet in front of the recliner. Joey cried. Mom cried. Mom told me. I sobbed. I hated CF. I was 13 going on high school and my beloved Mike was gone and I hated CF.
Growing up, the hum and vibration of Karen and Mike's at-home ACT's (Airway Clearance Techniques) and their yearly hospital stays alerted my childhood to illness. My other siblings and I would play around them while they huffed and coughed and their therapy vest inflated and deflated. I sat on the edge of Mike's hospital bed while a nurse performed rapid - seemingly violent to my newish eyes - percussion over his body to loosen mucus. My other older sister, Rachel, could be found wherever Karen was - cuddled beside Karen in her favorite recliner, or out at the horse farm learning to ride on Karen's palomino, Jesse James. Sometimes I tagged along. Karen loved animals and always had a menagerie of little paws around the house. She paved her love for the little creatures firm and smooth in Rachel's heart - so much that Rachel later attended Virginia Tech for vet school, now owns a veterinary practice, and loves on her own drooly, whiskered tribe at home.
Mike was my buddy. I think he must've known from the get-go that our spirits favored each other. I drove my parents up the walls and through the ceilings with my wild heart and my smart mouth. Mike never seemed overawed by my defiance. I helped myself to his lap space. I marched into his bedroom to hang out whenever I pleased. I showed up at his softball games and tried to set him up with the occasionally present lady friend. He laughed off my annoying little sister business, probably because he reveled in antics of his own - like honking the horn of his blue Toyota all the way through the Harbor Tunnel just to piss off the other drivers.
When we lost Karen and Mike, the gravity of their illness hadn't yet reached my bang-clad-and-hairbrush-toting foresight. The last year of their lives was spent in the hospital more than at home. Still, it never fully registered that their lungs were failing and their bodies followed. I think our parents shielded us, understandably, from the truth of those last years.
Today, I'm a 32-year old writer living on a quiet, Atlantic-adjacent island in Charleston, South Carolina. I light a candle and eat a cupcake every year on Karen and Mike's birthdays. Cupcakes because Mike preferred them to a full-size cake.
I miss them both. I frequently wonder what high school and college and first boyfriends and turning 21 and first careers and first heartbreaks and second careers and turning 30 would've been with my siblings riding alongside and offering life-map routes.
Buechner wrote, "You can kiss your family and friends goodbye and put miles between you, but at the same time you carry them with you in your heart, your mind, your stomach, because you do not just live in a world but a world lives in you."
Karen and Michael nurture and breathe into my enlarging world daily. And so I tell about them. When people ask how many siblings I have, I tell about them. When someone points to the tattoo on my left wrist, I tell about them. When a friend rides along in my car and notices the faded, gold chain with a Miami Dolphins helmet pendant - a necklace that Mike wore every day that I ever saw him - swinging from my rearview mirror, I tell about them.
My brother and sister lived loud and brave and with abundant grace. By sharing their stories, I hope it lifts their voices far and high, and illuminates the lives of those currently living with CF and the lives of the people who love them.
April Zimmerman is a Maryland-born writer currently living in Charleston, South Carolina. You can follow her on Instagram @ape_zim or contact her at [email protected]