My relationship with sleep has always been complicated. Sometimes I wait until the very end of the day, when I’m so exhausted that I just collapse into bed. Other times, I toss and turn, adjust my position 35 times, and eventually fall asleep a few hours later. I’m also prone…
Valiant Voice – a Column by Lara Govendo
I live with a rare disease. It seems strange to say that because it’s not so rare to me. Living with cystic fibrosis (CF) is the only life I’ve ever known. When I was born, researchers hadn’t yet discovered which gene was affected by CF or what chromosome…
I’m not a jerk; I’m just tired. Admittedly, though, I feel like a jerk sometimes. My eyes widen at the number of private messages that flood my inbox. I know they’re from sweet people who need support and encouragement. “I’ll tackle them another day,” I say aloud. But days can…
“You might live long enough to finish college, maybe even get married, but …” I imagine this is what the textbooks used to say about cystic fibrosis (CF) when I was in college. While I heard such things at medical appointments, I refused to let that narrative define my…
My permanent disabled parking placard was falling apart, and after 10 years of use, it was held together with tape. So I went to the Department of Motor Vehicles to get a new one. “I’m so sorry that it’s permanent,” replied the lady behind the service counter. Her response shocked…
Last weekend’s weather forecast called for a wind chill factor of -35 F. We don’t usually experience such low temperatures here in Vermont, but this winter has been hitting hard. Before I serenade you with “Ice Ice Baby,” I want to take a trip down memory lane. I am so…
I turned 39 last month. Nearing the milestone of a new decade with cystic fibrosis (CF) feels like a big deal. Almost 40? Check. I’ve got some wrinkles and age spots! But let’s talk about the elephant in the room. Life expectancy seems to be the center of…
“I’m freaking out — have you ever had a burst blood vessel in your eyeball?” This is a recent text message I sent to a dear friend. We’re not only friends; we both live with cystic fibrosis (CF) and have had a double-lung transplant. She gets me on…
I’m no stranger to frigid temperatures and dark days, as it often feels like the tundra here in Vermont. As we approach the winter solstice, I’m reflecting on the symbolism of letting the light in after dark times. I was born in the wee hours of Dec. 22,…
I feel my breath catch in my throat. Short, shallow waves alert my survival brain that something is wrong. My heartbeat quickens, and my hands begin to sweat, with surges of energy coursing through my veins, almost like a cold chill. Every part of my body tenses, and a pit…
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Recent Posts
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- Navigating complex sleep issues in life with cystic fibrosis
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- I’m confident we will one day have a cure for cystic fibrosis
- Medications gave my daughter a measure of control, but never freedom