"Let Me Tell You a Secret..."

If I could whisper in her ear, I would tell her: “don’t be scared, you will live decades longer than anyone thought, and your life will be filled with much joy—you will get an education, have a career, get married, and raise fur babies. Oh, and one other thing. Start investing for your retirement NOW.” These are the things I would tell my younger self, the one born in 1971 when life expectancy with CF was the mid-twenties. I would tell my younger self to be hopeful and not consumed by a fear of dying, because, spoiler alert: you’ll live to be at least 52. 

Who would have imagined, right? I grew up with a fundraising poster on my bedroom wall (questionable parenting here…maybe. I mean is this something you want your little girl to be reminded of every day? But I digress---that’s a different essay) that read: “Julia is 12. She has just reached middle age.” It showed a young girl with a sad face in a dark and dreary dress. Point taken- and never forgotten. I’ve been trying to beat that number ever since, as it slowly climbs up and up over the years to today’s 57.3 median age of survival in Canada.  

Every few years I’ve stopped to think, gosh, I wasn’t supposed to be here this long. I forgot to save for university… I didn’t think about what kind of wedding I would have… I didn’t realize how much it would cost to retire and not have any income. It’s a strange feeling being part of the Old People Club now—I get to complain about sore hips, being constantly tired, cracking kneecaps, and sadly- hot flashes! 

I’ve seen a lot over the years—the onset of Burkholderia cepacia and six-feet apart rules, lung transplant success rates increasing, the creation of specialized CF clinics, retro medications like Poly-Vi-Sol, Keflex, Salbutamol, to today’s latest and greatest, Trikafta. I wonder what I’ll see in the next decade—a cure? Dare I dream? I know that many of us have suffered greatly at the hands of CF, and will continue to do so despite the miracle drugs and treatments. But I also know that the balance has shifted in my mind, from fear of dying to hope for living my best life. My wish for everyone is that we can hang on to that hope. 

If I could whisper in her ear, I would tell her: “Take the chances. Eat the extra piece of cake. Go on that trip. Start that new hobby. And for the love of God, advocate for extra research on how to eliminate hot flashes.”