Turning 40: My once-unattainable goal with CF is now within reach
I've been through a war, so getting older is a privilege
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I turned 39 last month. Nearing the milestone of a new decade with cystic fibrosis (CF) feels like a big deal. Almost 40? Check. I’ve got some wrinkles and age spots!
But let’s talk about the elephant in the room.
Life expectancy seems to be the center of most discussions about CF. In fact, if there were an award for hyperfixating on any given topic, the medical community would win it for its oversized interest in predicting how long I will live. I enjoy the giant middle finger I get to flip to statistics. I’m still here, and I’m not going anywhere anytime soon.
The years behind and ahead of me
I started my 30s being really sick. In 2017, I was urgently listed for a double-lung transplant and waited five months on the transplant list before getting new lungs. That was quite a power-packed year, one that came in like a wrecking ball. But the years that followed were filled with wild adventures and wanderlust shenanigans. With new airbags, the sky was the limit. I didn’t have to pack oxygen, airway clearance devices, or nebulizers.
Not needing electricity was a freedom I had never known before. All I had to do was throw back my anti-rejection medication, and I was good to go. I drove across the country by myself, flew to the Transplant Games of America, and visited friends all over the country. I even took a trip to Fiji, something I never knew was possible, since it is on the other side of the world.
But my mid-30s saw me survive a global pandemic that left me completely isolated and having to navigate new normals in a dramatically different way. I occupied my time by writing, online exercise classes, and starting a prayer group that covered the world in prayer 24/7. I baked cakes for myself, FaceTimed friends, and talked on the phone with family (specifically, my parents, who boycott all forms of technology). I learned a lot about how to cope with life in a silo while observing human behavior — the therapist in me.
My thriving 30s
My late 30s have been a different story, and it still feels surreal to write it. Being an age that most medical professionals claimed I’d never reach feels pretty badass. As time passes, I recognize that living by my own rules is crucial not only for my survival but also for my chance to thrive.
The past few years have been filled with dramatic shifts in how I show up in the world. I met and married the most amazing man on the planet. I love my job and participate in organizations and events that matter to me. And I still have the travel bug!
With each passing decade, I feel more like my truest self. I’ve worked through a ton in therapy over the years, which was vital for managing my mental and emotional health while living with a chronic illness. But deeper than that, I’ve learned how authenticity and vulnerability are admirable traits, rather than the liabilities that society may try to convince us they are. To me, my greatest accomplishments have been my walk with Jesus, meaningful relationships, and sharing hope with the world.
I feel like I’ve been to war. In some ways, I have been. I have post-traumatic stress disorder as a direct result of the hell I’ve been through. The good news is that I’m alive to talk about it.
Despite the hardships of living with CF and a lung transplant, I’m radically blessed to cross paths with people whom I wouldn’t have had if I had perfect health. These incredible individuals have changed my life in the most powerful of ways. I’ve seen the best of humanity, and it’s been a true honor to witness the way that the helpers of the world do their best work in secret, like sweet little elves in Santa’s factory. And I have my dear friends in this rare disease community that I get to share life with.
Contrary to our culture’s antipathy toward getting older, I know that it’s a privilege. I am excited about the prospect of turning 40 at the end of this year. Getting old once felt like an unattainable goal, but living it in real time is more delicious than I ever thought possible.
I need stronger sunglasses. My future just keeps getting brighter by the year!
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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