Cystic fibrosis doesn't ask for permission to take up space in your life. It just barges in, a relentless intruder that grows more insistent as time goes on. It steals your breath, literally, squeezing the air out of your lungs until each inhale feels like a fragile promise, each exhale a quiet surrender.You know the statistics, the grim timeline etched in numbers and percentages. You know that every year, the chances of survival shrink just a little more.
Cystic fibrosis is terminal, and even though the word has a sharp, final edge to it, it doesn't feel like the end is coming in a singular moment. It's a slow erosion—of energy, of hope, of years that seem to pass you by faster than they should. Every birthday becomes something else. A marker, yes, but also a reminder. A reminder that you may never have another one. That each one could be your last, and so you celebrate with a hollow cheer, the cake lit with candles that no longer hold the innocence of a wish. You try to smile, try to pretend that you're not counting the breaths in between, that you're not aware of the weight of time pressing against your chest.
But it's there, in the shallow gasp of air, in the moments when your body refuses to do what it should. It's there in the way you get out of bed slower, in the way your hands tremble when you reach for something because you don't have the strength anymore. It takes everything. It takes your breath, your energy, your years. And somehow, it still isn't enough. It's a thief that gives nothing in return, leaves nothing behind except an absence. A gap in the lives of those who loved you. You become a ghost in your own body, a visitor to the world, not fully present in any moment, just drifting through days that feel like they're being borrowed. It's not a fight, not really. You can't win. You can only endure until you can't anymore. And every year, when your birthday rolls around, you pretend like it's just another day, another chance to defy what's already been decided. But deep down, you know. You know that it's a gift you can't hold onto, and maybe that's the hardest part. Knowing that the clock is ticking, that there's no pause button, no way to stop it. Only the growing emptiness of the space left behind.
Cystic fibrosis isn't just an illness; it's a suffocating weight that presses down on everything you do, every breath you take, every moment you try to hold on to. It starts quietly, almost imperceptibly. The way your chest tightens when you laugh, the way your lungs feel like they're working too hard, but you push through because that's what you've always done. Push. Breathe. Keep going.
But there are times, moments, when it all becomes too much. The air, thick and heavy, seems to evaporate from your body, and no matter how hard you try, no matter how deep you inhale, it's never enough. That's when you know something's wrong, but you don't have the strength to fight it. I remember the ambulance, the flashing lights slicing through the dark, the siren wailing in my ears. The paramedics, frantic but calm, worked quickly, strapping me down. I could see the concern in their eyes, but I couldn't speak, couldn't do anything except gasp, trying to pull air into my lungs. I could feel the panic setting in, a cold sweat on my skin, but the worst part was the way the world around me seemed to slip away as my breath grew more shallow. I wasn't afraid of dying—I had known it was always going to come—but I was afraid of not dying, of just struggling through each moment of breathlessness until I could no longer remember what it was like to be whole.
I remember looking down at my hands, pale and trembling, and feeling an odd detachment as if they didn't belong to me anymore. The world went blurry, my vision fading in and out, and the paramedic kept saying, "Stay with me, just stay with me." But the more they talked, the more distant it all felt, like I was already slipping into something quieter. Something darker. The sensation of being on the edge of consciousness is something you never forget—floating, half aware, as if you're being pulled under. The days after that are a blur. The hospital room, sterile and cold. The sound of the machines—the beep of the heart monitor, the hiss of oxygen—filling the silence. The smell of antiseptic, the faint taste of something metallic on my tongue. I remember waking up, groggy, my throat sore from the breathing treatments and tubes, but there was no clarity, no sharpness to the moment. It felt like I was underwater, everything muffled, distant. I couldn't even remember how I had gotten there, how long I'd been out. Time didn't make sense anymore. And that was the thing. It never does. Time stretches in odd ways when you live like this.
Each day, each breath, feels like both an eternity and a split second. You don't know when your last breath will be. You just know that the closer you get to it, the more it consumes you. They say you fight. But there's no real fight. Not against something that takes everything without ever needing to ask. And as each day passes, you start to realize that you're not fighting to survive anymore. You're just surviving—just existing, hoping to make it to the next. The next breath, the next day.
The worst part, though, is that it's never enough. No matter how many times you breathe, it's never quite enough. It always feels like there's just a little less than you need, just a little more slipping away with every moment. The fight never ends, but you can feel yourself wearing down. The years, the days, they lose their meaning, until one day, you wake up and realize you can't remember what it felt like to just breathe.
