No matter how many times my parents, my friends, or my therapist insist that having cystic fibrosis is a full-time job, I can never seem to internalize the concept. When I’m healthy, walking to class is easy, I sleep through the night, and my bones…
Columns
Jan. 14, 2017 was the worst day of anxiety I’d had in the five months of waiting for my lung transplant. A frantic, nearly palpable tension was in the air. After five confident months believing the “light at the end of the tunnel” was rebirth, rather than…
I’ve decided that I don’t want to live in poverty. Okay, so I’ve known that forever. I’m not trying to say it hit me this week while scraping peanut butter on my toast that, “Hey, maybe money is a nice…
“I can give something to relax you,” the doctor says. I stiffly nod, neck taut and arm outstretched for an arterial blood gas test. The doctor holds up a syringe — a drop of shiny liquid is squished between needle and plunger. It’s the purest looking substance…
Happy New Year, friends! I’ve always loved this holiday. The fresh chances, the deeply felt hope, winter snow, fruity champagne (real or not), and kisses all around. Yes, I’ve always loved this holiday … For the first 24 hours. You…
The world isn’t fair. Anyone born with a genetic disease like cystic fibrosis before they’ve even had a chance to earn bad karma knows that. But that doesn’t mean we need to stand aside and “take it” when other people are unfair to us…
A couple weeks ago, I wrote about misunderstandings within the CF community. But what about misunderstandings projected into the community from the outside? If you’re a non-CFer, keep these things in mind when interacting with someone who has the disease. You might not feel sick, but that…
“You’re so lucky.” I’ve heard and read that all too often over the past year. I’m lucky I lived to my 20s with cystic fibrosis, I’m lucky I had a lung transplant, I’m lucky my recovery was relatively smooth. The phrase is…
“Cystic fibrosis is a genetic lung disease.” That’s an accurate statement, sure. But it doesn’t reflect the diversity of patient cases — the myriad mutations that cause each case of CF, and the unique medical contexts that shape those cases. And, as all CFers know, the mutations affect…
I’ve gone through life afraid of numbers. Not just math, although I’m really terrible at that. Numbers like “37”: the life expectancy of someone with CF, a number that was even lower when I was growing up. Numbers like “4”: the amount of antibiotics needed to…
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