I’m slowly learning to share my life with cystic fibrosis and transplant
After struggling with writer's block, a columnist looks within
My mother was recently cleaning out her attic, trying out the minimalist technique she’d seen on a Netflix show. In the process of deciding which items still bring her joy, she gathered a bag full of my school papers from childhood. Forty years later, she still couldn’t bring herself to throw them away. Instead, she delivered them to my house.
As I looked through the papers, it struck me how many short stories and poems were in the pile. And this was only a small sampling of my work, as no mother can keep every creation made by their child. It reminded me that I have always loved to write.
As a child, I kept a diary, and when I became a mother in my mid-20s, I journaled about my feelings and experiences. I’ve participated in a weekly virtual writing group for three years, and I was so excited to become a columnist for Cystic Fibrosis News Today. I feel like I’ve been practicing for this position for most of my life. Between growing up with cystic fibrosis (CF), working as a nurse, raising a child, and undergoing lung transplant, I have so much to share.
But now that I have this wonderful opportunity to write for the CF community, I find myself frozen, staring at a blank computer screen. My inner voice yells, “No! I don’t want to write about CF!” After struggling with this for weeks, I had to do some internal work to figure out why I’m having writer’s block regarding my life with CF.
Putting CF in the limelight
My life has never been focused on CF. My mom never denied it, neglected it, or kept it a secret, and I’ve always done everything I could to maintain my health. Still, my disease was mild, mostly causing gastrointestinal symptoms. As a kid, my CF management involved swallowing pills when I ate and taking the train to Philadelphia every three months for a doctor’s appointment and pulmonary function testing. Back then, the test involved blowing into a mouthpiece connected to a computer that displayed a cartoon birthday cake on the screen. The longer I blew, the more candles were extinguished.
My family treated me no differently from my healthy brother and neighborhood peers. I played outside and joined sports teams. Later, I became a nurse, got married, had my daughter, and got a house and a dog. Although I had to do more nebulizer treatments and chest physical therapy to keep up with my roles, CF still wasn’t at the forefront of my mind.
By my 40s, however, I needed a double-lung transplant. Thankfully, the surgery was successful, despite taking place during the COVID-19 pandemic. Three years later, I’m breathing as well as I did in childhood.
But after more than 50 years of living with CF and transplant, why is it so uncomfortable to write about my health? Is it because I’m writing for a public forum, rather than in the safety of my private journals? Is it a product of my upbringing, in which CF was never a big part of my identity?
I’ve always acknowledged my condition and done all I could to manage it. Maybe I’m just now processing my transplant, which I never imagined I’d have to go through, and dealing with delayed medical trauma. Or perhaps, having been through transplant, I’ve been enjoying the break from CF-related concerns.
Most likely, it’s all of the above. It’s important to be aware of my current struggle, take time to be present, and make space for my emotions. I’m grateful to be here and feel well enough to honor these feelings. Being honest and writing about this conflict feels like a step in the right direction.
Life with CF and transplant is complicated, physically and mentally. Finding ways to navigate these times is as essential to me as the medicine I take.
CF is a part of me — perhaps a larger part than I’d like to admit. Hopefully, through my writing, it’s a part I can learn to share.
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.
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