“Cystic fibrosis is a fatal genetic disease.” I was in a 9th grade Biology class when that phrase jumped out at me from the pages of my textbook. “Many individuals with cystic fibrosis die before reaching the age of 20.”
“Hey,” my friend loudly said from two desks behind me, “Isn’t that what you have? Are you, like, gonna die soon?” Awesome. Just the conversation every young teen hopes to have in class. [Insert: heavy sarcasm]
The phrase “life expectancy” has hovered over me like a dark cloud for much of my life. I don’t recall the first time I heard the specific words or began to truly understand their meaning, but I’ve felt the weight of them for as long as I can remember. After losing a sister to CF when I was just 6 years old, I began to realize what that could mean for me one day. I have never been blind to the ugliness of this disease, but carrying that knowledge in my heart and mind is a bit different than being confronted by it out loud in a classroom full of my peers.
“Yeah, that’s what I have,” I said, probably a bit awkwardly. “But I don’t plan on going anywhere anytime soon.” This was not the last time I’d be asked about my life expectancy. In fact, after years of practice, it’s something I’ve become quite comfortable discussing. Only now, my thoughts about it have begun to change.
Growing up, I couldn’t picture life very far into the future. I never imagined myself growing old. I’d envision things like high school graduation, sometimes even marriage and motherhood, but after that… it was blank. I literally could not picture myself at any advanced stage of life. Mind you, I was always hopeful, but there was a distinct blank space whenever I tried imagining the distant future.
Because of this and the uncertainly of CF in general, it’s always been difficult for me to make long-term plans. Instead of planning things out, from quite a young age I chose to focus on the day-to-day, to pour my heart and soul into whatever I was doing, and to hope that I’d be able to navigate whatever obstacles I might encounter along the way.
Life is uncertain and tomorrow is guaranteed to no one, but knowing that my life expectancy is significantly less than average has taught me to approach life with my heart and eyes wide open, appreciating everything. I believe that being well-acquainted with hardship and learning to accept mortality gives a person the unique opportunity to be bursting with life. As a fellow fighter said, when it comes to CF “no love is half-given, no day is not lived to its fullest and nothing is ever taken for granted.” If anything, isn’t the possibility of a short life even more reason to seize the moment, to find and pursue the things you’re passionate about, to really live?
I imagine all it takes is a simple Google search or a quick conversation about CF for the parents of a newly diagnosed baby to learn about their child’s life expectancy. As a mother myself, I’m sure that is an absolutely heartbreaking and terrifying experience. Seeing that number feels a lot like being hit in the stomach with a ton of bricks. While that pain is valid, it’s important to remember that there are so many things NOT captured within that simple statistic.
Life expectancy cannot measure the worth of a person’s lived experience. It can’t capture the complexity or beauty of the relationships we create. It’s impossible to quantify the lasting impact a person can have on the people around them. Life expectancy can’t count memories made, or gauge the amount of love shared, or put a numerical value on the quality of a person’s life, no matter how brief it may be. Life expectancy is an ever changing, indeterminate number. It holds meaning, yes, but there are so many things that carry more weight and significance in life.
When I was born, my life expectancy was in the low 20s. By the time I had reached that age, the projected numbers had increased into the 30s. Currently, life expectancy for people with CF is higher than ever and increasing each year thanks to fundraising, research, and development of new drugs and treatments. CFTR modulators in particular are changing the face of this disease and the future for many of us is bright. My life is transforming before my very eyes in ways I had never dreamed of.
Recently, I was talking with Morgan about her future: college, travel and hopefully one day, children of her own. As we were discussing this, I could vividly picture her in a hospital bed, exhausted, but lovingly cradling a warm, wrinkly new babe on her chest. In that moment, there I was – a proud grandmother — standing near the bed smiling. And then it hit me…
I could actually see myself there, grey hair and wrinkles included. More than just hoping for that future, I was finally seeing it for the first time.
Maybe that doesn’t seem like much to some, but for me, it’s a huge step. Carrying the emotional weight of a shortened life expectancy and experiencing the mental/physical trials of CF have helped shape me into the person I am – a person I genuinely love and am so proud of. Because of these things, I’ve learned so much about life and the way I want to live it. These things have instilled courage, resilience, and determination within me.
While these things are all positive, the downside is that I’ve always hoped but never planned. I’ve lived well but haven’t prepared well. Perhaps it’s time to start planning for the future I’ve always hoped for; the future I can finally picture myself living.