Forty Is a Strange Age to Reach
Cystic fibrosis, loss, and the unexpected grief of staying alive
I turned 40 this month.
That sentence feels heavy in my mouth, heavier than I expected. It’s not the number. It’s what the number means when you were never supposed to get here. Not because of my choices—but because of my lungs.
Do the students I teach realize how I am still 23 in my head? The professionals I work with?
It feels heavy.
Because I had an older brother who didn’t.
My brother was born in 1975. He died at 25.
He had cystic fibrosis. The classic kind. Diagnosed young. Sick often. In and out of hospitals. Fighting hard for every breath in a system that rewarded quiet compliance and punished complexity. Face cushingoid from massive steroid doses. A hunched back from osteoporosis meeting a car wreck in his early twenties. Blind as a bat with coke bottle glasses (not CF, but still getting it in yet another way).
He died when I was nearly 16. I remember how many pills he took, how often he coughed, how wet it always sounded, how getting him laughing until he couldn’t breathe was all too easy, how much time was spent waiting for answers that never came as we chatted in his room everyday after I got home. I remember the way people spoke to him like he was older, or already halfway gone. And I remember how fast he disappeared from every room after that.
His death rewired me. It made time feel unstable. Aging became a series of stolen minutes. Every year that passed felt like a number I wasn’t supposed to hold.
He would’ve turned 50 this year.
CF kids, especially back then, were some of the funniest people I’ve ever met
We didn’t really get a choice. When you grow up with a chronic, progressive illness—when every appointment comes with a new baseline and your lifespan is a subject of speculation—you get fast at dark jokes.
We were sarcastic, sharp, borderline feral. We made nurses laugh when we couldn’t breathe. We turned mucus into punchlines. We treated medical supply closets like backstages.
That humor wasn’t a coping mechanism. It was a language. And for a lot of us, it was the only way to make anyone listen.
The humor still gets me in trouble often enough. Students don’t get it, colleagues look at me askance, others think me crude. How do “normal” people communicate?
A lot of those kids never made it to adulthood.
I don’t make new CF friends anymore. I keep to the dwindled few still around from then.
CF is better now—but “better” is weird, too
Advances in treatment have changed everything. Survival has improved. Expectations are different. I’m grateful for that, truly. But sometimes the dissonance is real.
I was raised to expect a shortened future. So I didn’t plan for a long one. I thought I’d have a clever obituary by 30, not a 403b. Not back pain and bed around 10pm. Not a house payment.
Turning 40 doesn’t just feel strange—it feels like trespassing into someone else’s version of adulthood. The kind where people talk about retirement, kids, timelines. And I’m over here thinking about how wild it is I’ve had the same lungs for four decades.
Some side effects are more abstract
Like infertility. CF boys—most of us—are born without a vas deferens. It’s a built-in boundary. It doesn’t hurt. It’s just… not there. Natural vasectomy. I have male friends who are jealous knowing that, given they had to go for surgery.
For most of my adult life, that’s felt like a low-stakes blessing. No worry about passing on the gene. No need for decisions I didn’t want. It’s a default setting I never had to configure.
But still—some days, it lingers. In the abstract. The idea of parenting as a possibility that never arrived. The idea of legacy in a biological sense. Her name would be Alana Marie. It’s not grief exactly. Just the outline of a door I never got to knock on.
And even if I wanted to knock now, I live in a country where the health system doesn’t subsidize IVF—it criminalizes it. Where fetal personhood laws have made fertility treatment a legal minefield, not a medical option.
I think I’d kill for a girl.
Boys… boys are dumb. Trust me, I know.
Survival is more than staying alive
It’s figuring out who you are in the space left by everything that didn’t happen.
It’s feeling joy without guilt.
It’s honoring the people who didn’t make it.
It’s living with a timeline you never thought you’d occupy—and trying not to flinch every time the calendar turns.
So what does this have to do with public health?
Everything.
Because public health so often deals in probabilities. In outcomes. In “success stories.” But for a lot of us—especially the chronically ill, the disabled, the ones marked by early loss—just staying alive doesn’t feel like winning.
It feels like a messy miracle. A stubborn one. A political one.
I wasn’t supposed to live this long. Turning 40 with CF means outliving the charts, the studies, the whispered expectations. And yet our health system still isn’t built for that kind of survival. It rewards efficiency, not endurance. It tracks costs, not meaning. It knows how to prolong life, but not how to support it once prolonged.
We don’t just need systems that keep people breathing. We need public health that makes room for the complexity of survival—for what it means to keep going after the prognosis, to live inside borrowed time, to imagine a future even when one was never promised.
So yes, I’m 40. And I’m still here.
And that feels like a triumph, a joke, and a minor policy failure all at once.
I don’t have wisdom about it. Just a strange sense of gratitude braided with grief. And a deep, absurd love for all the people who keep living without knowing how long they’ll get to.
Thanks for being here with me. More soon.
Maybe about oral health. Maybe about rage. Definitely about systems.