Category: cystic fibrosis
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37th Heaven
I turn 37 on April 26. On the surface, 37 doesn’t sound like a particularly significant age. It’s approaching “I’m almost 40” territory but not quite close enough to claim it. It’s an age best announced exactly as it is: 37. The number 37 stands out to me, though, because, as I entered adulthood, it…
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Did Ashton Kutcher Get Punk’d?
“I wish I could give Ashton Kutcher an update,” I sometimes think. I wanted him to know when I started performing improv.And when I got married.And when I started writing a book.And when I was widowed. I mostly wanted him to know I was alive — but not in the way preteens long for their…
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A flight of imagination
I have a complicated relationship with airplanes. I was once headed to NYC for a work trip and had an awful asthma attack. I was gasping for air and couldn’t speak, so the woman next to me sought help from a flight attendant. “Ice,” I mouthed to her, knowing it helps soothe my throat. People…
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I’m published!
I was embarrassed to admit I wanted to be a writer for a very long time. I was fearful of seeming unrealistic, for one, but putting my wish out into the universe also meant I could fail. I wasn’t thrilled about that thought, either. In recent years, though, I’ve realized I was only failing myself.…
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Role reversal
EXTRA! EXTRA! I recently wrote a guest post for the Cystic Fibrosis Foundation. Here’s where to find it: Role Reversal: When Someone With CF Becomes a Caregiver
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Trial and error
When I took my first dose of Trikafta in March 2019, I felt, as the pills slid down my throat, that my life might be changing. And change it did. In just a few days, breathing was easier, pain was minimal, and energy was plentiful. After a euphoric six weeks on the medication as part…
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Let donations ring
This photograph may look like your average 36-year-old man eating a red, white, and blue popsicle, but there’s much more. At the time, this guy (let’s call him Ramón) was supporting his wife (let’s say she’s me) at the annual Cystic Fibrosis Foundation walk, Great Strides. Ramón knew that loving someone with cystic fibrosis might…
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Breathe in gratitude
Today is one of the tougher grief milestones because it marks two years since Ramón’s cardiac arrest. My hope for today is that I can live mostly in a place of gratitude—thankful for the crisp morning air, the vibrant colors of spring, and the piece of extra sharp white cheddar cheese I just had for…
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May I demand a favor?
My word of the day is “fearless.” I don’t normally have a word of the day, so take that for what it’s worth. Before I put out feelers for publishing connections last October, I didn’t know what to say. I wanted to write the perfect message, post it at the perfect time, and have it…
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Rewriting the story
After Ramón’s death a year ago, I set a goal to build my endurance until I could run for 60 minutes without stopping. I can’t recall why I chose this particular goal, but I knew I wanted to spend time outdoors after having been confined to a single hospital room for what felt like forever.…
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The gossip on grief: Six months later
“People ask me how you’re doing,” my dad said on a walk one morning. “I tell them you’re doing surprisingly well.” As I nodded in agreement, my dad asked if it was a choice I’d made—to handle Ramón’s death well. I wasn’t really sure how to answer that question because I didn’t consciously decide, “Boy,…
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Day +83: Let non-freedom ring
“I’m not going to wear my ring, okay?” I remember Ramón asking that as we did one last sweep of the house before departing for the hospital on April 3. Now, 90 days later, Ramón’s left hand remains ringless; instead he’s wearing a pulse oximeter. Above his wrist, there’s a peripheral IV. Above that, there’s…
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Day +76: Mashed potatoes
This morning, day +76, while walking the dogs, my mom turned to me and asked, “Did I tell you about the dream where I was feeding Ramón mashed potatoes? He loved them.” Without hesitation, I responded, “Aww, that makes me happy.” Now, reflecting on our exchange, it’s interesting that my first response was one of…
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Day +46: Life is hard.
The past several weeks have been, without a doubt, the most difficult time of my life. Each day, I have been hopeful that Ramón’s status would change enough to dramatically alter the nature of my update. But it hasn’t, so here goes. On April 19, nine days after his stem cell transplant, an infection caused…
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Days +12, 15, and 18
Day +12: A turtle’s pace – April 22, 2020 Though time has been moving at the speed of molasses, it’s moving, and that’s the most important part of this process. The testing they’ve been able to do while Ramón is sedated and intubated all looks quite positive. Until they can fully wake him, though, there…