In elementary school, the holiday season was always a time of illness. With cold and flu season being driven, in large part, by Thanksgiving travels and family gatherings, it was inevitable that kids would return to school with whatever respiratory bug some uncle flew into Alabama from North Carolina, or drove down from Nashville, Tennessee, or wherever.
Which means I’d often spend the last few weeks of the fall quarter sick, out from school. Because my lungs are inherently vulnerable to respiratory illnesses, everything from the common cold to (now) COVID-19 can land me in the hospital for up to two weeks at a time.
I was lucky; growing up, I didn’t need to be hospitalized for cystic fibrosis (CF) exacerbations until I was well into my teens. My case of CF was always described by doctors as mild, and my mom worked magic to keep me out of the hospital, opting (or sometimes, negotiating) for the least invasive treatment until there were no other options.
I call it magic because she wanted to hide as much of the hard stuff from me as she could. I was a kid, and she wanted to afford me the right to be a kid. So it felt like magic. But I was still sick and had to shoulder all the pain that comes with a body that struggles to breathe.
I’d run laps in the downstairs playroom while my parents timed me; it was a game to encourage me to exercise, to “stir up those lungs,” as the doctors encouraged us to do. And this was in addition to nebulized treatments and chest physiotherapy every four hours, around the clock.
My voice would grow hoarse from all the coughing.
Mom was once trying to cheer me up by focusing my attention on Christmas. I was sad about missing the last couple weeks of school; even though I was a self-proclaimed nerd, I didn’t want to miss the holiday parties and gift exchanges.
“What are you going to ask Santa for for Christmas?” Mom asked.
I coughed loud and hard. It hurt. “To make me better,” I said.
I think even I knew that wasn’t a feasible ask. Santa might be magic, but there’s some science even magic can’t fix. I imagine that’s how my mom explained it to me.
Looking back, I know my desire in that moment was directly related to the pain I was experiencing. The actual concept of a cure has always been strange to me; to be absent of this thing that’s literally a part of my genetic material is too bizarre to even wrap my head around.
What I was really craving all along was to have the same holiday experiences everyone else had. I missed the Christmas parties, the camaraderie of connection without the pressure of schoolwork.
I don’t think feeling normal has to mean being cured so much as feeling like a human. I’ve been self-quarantining due to COVID-19 for three years, which we all know has been isolating, but it’s an isolation I’ve always been familiar with yet am still learning to accept.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to cystic fibrosis.