What is a long life? All my life my parents have prayed for me to have a long and fulfilling life. Because of cystic fibrosis, the possibility of a short life span was high. They always had hope of a long life for me, though. As I get close to my 39th birthday, I can’t help but wonder: what actually qualifies as a long life?
Is it thirty-nine years?
Is it the length of a life or the quality of it that matters more? How exactly does one measure a long life?
In November 2019 I spoke at a CF Foundation fundraiser. It was the week that the FDA approved a new medication called Trikafta. It’s not a cure, but it’s close. As I listened to the hope that was talked about, I couldn’t help but get choked up. I couldn’t help but wonder if I would actually see a cure for this disease in my lifetime.
The week that Trikafta came out, I was interviewed by NPR about it. NPR!!! In the end they didn’t use the interview because I wasn’t for sure at the time if this medication would work for me yet because I didn’t pay attention to things like my DNA and genotypes. Oops. I just want to be normal. In fact, my best friend told me today, “it’s like you’ve had CF your whole life but you’re just now waking up to the fact that you have it!”
We both laughed at the absurdity of that. Here’s the thing though – I’ve never focused on the fact that I have CF. It’s as boring and basic to me as brushing my teeth. By all measures I’ve felt and acted pretty normal.
But I’m not.
Over the last year, I’ve embraced CF in new ways. I’ve allowed myself to wrestle with the realities of this disease in ways I never have before. I actually DID start Trikafta, and experienced the highs and lows of being on a new miracle drug. My journey has had ups and downs, for sure, and I’ll share all of it as vulnerably as I can while writing my Dangerous Hope book.
What I do know about the hope of a long life is this:
I’m blessed to have lived this long. Not everyone gets to, even without a disease. But having the hope of a long life doesn’t guarantee you’ll have one. Hope is not like a wish. It requires responsibility. The hope of a long life demands that you use your time wisely and be intentional about the life you do get. No matter the length.
If you’re struggling today with a diagnosis, or the statistics of the length of life for yourself or your loved one, I want to encourage you to shift your perspective. Be grateful for the time you DO have, and choose to make every moment count.
I’ve always said that CF doesn’t get to dictate the quality of my life, and I don’t even believe that it dictates the length of it. The length of my life was written by my Creator, and Him alone. No disease gets to claim victory over that.
Your life is the same way. Shift your perspective to that belief and rise up, dear one, with a dangerous hope that makes the most of the time you’ve got.
P.S. I invite you to join my Dangerous Hope Crowdfunding Campaign to help get this book in front of 27 publishers. Visit https://publishizer.com/dangerous-hope to learn more and get 1, 2, 5, 15, 25, 50, or even 100 books. The more books you pre-order, the better bonuses you get! (Like 1-on-1 coaching with me, training for you and your team, and even a Build Hope Library with EXCLUSIVE encouraging videos and downloads!)