Today, I woke up and left for a doctor’s appointment. It was 8 a.m., and my eldest daughter was coming with me in case I needed an interpreter. I’m Deaf and fluent in American Sign Language (ASL), but I cannot read lips with all the masks, so we took this…
I can’t remember when I first fell in love with science. I loved learning about it and going on field trips, but I didn’t enjoy science fairs because I missed hanging out with my friends (although I did place second at a science fair with some assistance from my dad).
Who would I be if I lost the parts of me that make me … me? At the height of my back pain — which is off in the old place, on in the new — I can’t sit up for long stretches to write, or stretch myself to…
Two months ago, I watched myself die, then get resurrected on television. Sort of. I used to interview fascinating people in Hawaii for local magazines. I’d never imagined I’d be profiled, much less through a documentary. But there I was, featured in a Bay Area NBC segment titled “…
Imagine living your whole life knowing you have an early expiration date. Then you wake up one morning, and that’s no longer the case. Sounds great, right? Of course it is, but it’s so much more complicated than that. I never would have understood before living through it. Trikafta…
Most people hate the attention birthdays bring. I get it. It’s only in recent years that the meaning of birthdays has shifted for me. Prior to my double-lung transplant three years ago, every year of life felt like a feat. Now, every birthday is icing on the cake — literally.
I don’t want to write this column. OK, for the sake of my editors, let’s be clear: I love this column and this company and this job. I am so lucky to have it, and I honestly can’t imagine how I’d get through parts of life without a consistent…
Two years ago, I found myself drinking a cup of coffee in a quiet coffee shop in downtown Chicago. I still struggled to call myself a writer or understand my writing goals. (Though, by this time, I had already been writing for CF News Today for a few months.) I…
The holidays always seem to be a complex topic. Adding chronic illness to the mix makes them even more tense. And now the world is living through a pandemic, which adds a layer of ambiguity. Navigating uncertainty brings anxiety, but we have a choice in how we respond. Holiday…
Yes, sickness is giving me a panic disorder. Let me explain. No, there is too much. Let me sum up: Never knowing exactly what to do or who to call or what the protocol is with every new symptom, in a body that creates new symptoms annually, makes me long…
Visit the Cystic Fibrosis News Today forums to connect with others in the CF community.
Get regular updates to your inbox.