I was lucky to grow up with a lake in my backyard. On quiet mornings, the water would lap a steady drumbeat against the seawall. Yet despite being raised next to a body of water, I never learned how to swim because of the environmental risks I faced with…
Columns
This Labor Day weekend marks five years since I received the gift of a double-lung transplant. Actually, it happened on Sept. 5, 2020, but that was the Saturday before Labor Day that year, so I tend to equate the holiday with my surgery. I’m writing this column as my…
My life with chronic illness has been a tumultuous ride on multiple levels, but I’m also grateful for the life I’ve been granted, especially since my cystic fibrosis (CF) spurred my double-lung transplant in 2017. I thought it’d be fun to share eight lessons of life and health that…
My friend Steve Silberman died a year ago on Aug. 29, 2024. I was familiar with Steve before he knew me. Steve had written a highly popular and applauded person-centric history of autism titled “NeuroTribes: The Legacy of Autism and the Future of Neurodiversity.” His writing, much like my…
I’ll never forget my daughter’s college graduation — not because I was there cheering in the audience, but because I wasn’t. Instead of watching her walk across the stage in person, I was watching the ceremony on my phone from the intensive care unit, where I was fighting a bowel…
This time of year, the cicadas at my parents’ house are loud enough that their siren call leaks through the sound of the morning news on TV. When I walk out onto the back deck, their buzzing seems to fill my bones. Then the heat hits, even in the early…
I have been thinking a lot about aging lately. I think about it when I notice that it takes my dog, Duncan, a second longer to stand up after a nap; I think about it when I notice a gray hair in my beard, a privilege; I think about…
Advocacy isn’t just cool; it’s often a matter of life and death. If you’ve read my column, you know how passionate I am about advocacy. Given my experience living with cystic fibrosis (CF) and undergoing a double-lung transplant seven years ago, I can confidently say I’ve…
I’m no stranger to the dread of the metaphorical waiting room, the in-between space stretching between questions and answers. But familiar as the space is, I haven’t mastered the discipline of sitting still. I’m an anxious creature, and mystery makes me crave control. Of the many pills I take,…
When people think of cystic fibrosis (CF), colon cancer usually isn’t the first thing that comes to mind. But for those of us living beyond what used to be the limits of this disease, it’s become an important and very real concern. Thanks to advances in treatments,…
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