Waiting. It’s not just a verb — it’s a state of being, an emotional terrain, a test of patience and resilience. For those of us living with cystic fibrosis, waiting is woven into the fabric of our existence. Every cough, every breath, every test result comes with its own timeline, a clock ticking loudly in the background of our lives.
On September 18, 2024, my world shifted again. I broke my femur and wrist. In an instant, my body, already a battleground, became a fragile, immobile thing. I found myself confined to a wheelchair, unable to walk, waiting for my bones to heal while my lungs continued their relentless fight against infection. It’s a double-edged sword: recovering from one trauma while battling another, knowing time doesn’t pause for us to catch up. The weight of waiting is more than physical immobility — it’s a burden on the soul.
Hospital stays come with their own kind of trauma — the endless examinations, the repeated testing, and the well-meaning but misguided attempts by medical staff who claim to understand CF yet miss its complexities. Their questions, often repetitive or misinformed, expose the gaps in knowledge and empathy that add another layer of struggle to an already heavy burden. They don’t understand that my lungs have been in a lifelong tug-of-war with a disease that doesn’t play fair. And now, there’s this — waiting for my body to decide to heal and let me walk again. The race against time becomes even more tangible when every breath feels like a clock running out.
Then, just as I got the green light to start walking therapy, the flu hit me like a freight train. Another waiting game began: Will this flu send me back to the hospital? Will my body hold its ground, or will it crumble under the weight of another infection? With CF, every illness feels like a gamble, a test of endurance.
Waiting isn’t passive; it’s an active fight. It’s self-talk in the dead of night, convincing yourself to keep going when the pain is unbearable and the questions unrelenting. “What if I don’t get better?” “What if I can’t find the strength?” The mind becomes its own battlefield. Patience isn’t just a virtue; it’s a necessity. It’s learning to practice the present while the future feels uncertain. It’s a constant battle not to envy the healthy, not to resent the ease with which others move through life.
But how do you embrace life fully without retreating into the safety of isolation? How do you continue to advocate, to fight, to be the “warrior” everyone wants to see in you when the weight of it all feels crushing?
Does it mean something in the end? I don’t know. Some days, it feels like it does; others, I’m less sure.
And yet, I keep waiting. Waiting for the lab results, for cultures, for lung function tests. Waiting for the nausea to subside, for rest to finally claim its rightful place in my body. Waiting for the pain to ease and for my mind to whisper, “You’re going to be OK. You’re going to get through this.”
What would life look like without waiting? For the CF community, it’s almost unimaginable. Waiting is the rhythm of our lives, the pulse beneath everything else. It teaches us patience, forces us to see the big picture, and reminds us — painfully, beautifully — to hope, even while navigating the delicate balance between the flicker of hope and the crushing weight of despair. Each setback tests our bodies, spirits, and emotional resilience and deepens the ache of missing out on life. With each new complication, that line between hope and despair becomes harder to walk.
And yet, we keep waiting. In that waiting, we find strength we didn’t know we had. Maybe that’s the point.
With love,
Linda
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