“Making Death Casual” should be my tagline. Most people don’t want to discuss mortality, but it’s one of my favorite topics. When I talk about death, I’m really talking about life.
Yesterday I spent the morning at the Emory School of Medicine. A pulmonologist I love, Dr. Linnemann, was giving a lecture on cystic fibrosis (CF) and asked if I’d join her to give the medical school students a glimpse into my life. I said yes, of course. It’s fulfilling to share my experience with others, especially when it helps connect the name of a disease to an actual human. Sometimes, in medical settings, you can feel like you’re only your diagnosis—not a person with an entire life beyond the exam room.
During the lecture, we talked about my childhood and what it was like to learn I should die young. Dr. Linnemann also discussed the latest medical breakthroughs and how, while exciting, the medications aren’t perfect and don’t benefit everyone with CF.
Afterward, a few students came up to ask questions. What were they most interested in? The life expectancy piece. How was it to process that information as a kid? What’s it like now that recent medical developments have extended the life expectancy? How do you deal with that?
Elementary-School Me was devastated to learn that I may not live past my teens. I’d been precocious and planned to accomplish big things. After reading I should die young, it was as though my permission to dream had been revoked. I learned how to compartmentalize things—to be Everything-Is-Normal Drew in public and I’m-Gonna-Die Drew in private. From the outside, it appeared nothing had changed in my life, but inside I’d gone dark.
Throughout the rest of my school years, I led a double life. I played the role of class clown, subconsciously trying to overcompensate for my fatal flaw. But beneath the surface there was no funny business. When left alone with my thoughts, I spiraled into a negative place. Why had I been sentenced to life in this defective body?
With new medical developments came adjusted life expectancy numbers. Every time a new number was announced, I’d shrug. Hooray for progress, but it was impossible to know what the data meant for me specifically. It wasn’t as though my body heard the news and declared, “Great news! Let’s go easy on her.”
Still, I continued to not die. I chose that wording for a reason. To say I lived would be an overstatement because my mind was consumed by thoughts of death. When would I accept that my life wasn’t aligning with the statistics? At what point would I decide to unpack my things and settle into living my life?
People with CF born between 2018 and 2022 now have a life expectancy of 56 years—tripling the number I’d obsessed over in childhood. Since I wasn’t born in that time span, with access to today’s therapies, it’s inaccurate to say my life expectancy is 56 years. It’s shorter than that, but trying to figure it out would drive me crazy, especially when I could choose to live instead.
These days I don’t care what the latest number is. When I see the next press release announcing the newest life expectancy data, my life won’t change. I’ll still be the same ol’ me with the same ol’ passions. If the statistics encourage me to seek a more meaningful life, wonderful. But I no longer allow arbitrary numbers to pull me into a place of sadness. Fear consumed too much of my life, and I refuse to sacrifce any more time dwelling on hypotheticals.
We’re all going to die eventually. But the good news is that we’re all going to live, too. So let's do this thing!
Start by making the most of the day you’re in.
And I’ll be over here Making Death Casual™.
P.S. If you liked this post, check out my recent piece, Memento Mori, published in The Coachella Review.
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