The gentleman in front of me is held up. An unsmiling, uniformed official calls him to one side with a brisk gesture. We exchange worried glances. The beeping intensifies and I start to perspire. I’m up next. My bag clinks with small, powdered vials and syringes. In my…
Columns
I was shocked recently when my social worker brought up for the first time the subject of social security disability insurance. I am currently working three jobs. As she spoke, I had many thoughts flying through my mind with nowhere to land. We…
I walk two paths: One is that of logic in my career as a scientist. In this field, it’s critical to remove emotion from the picture as much as possible. I work as a cystic fibrosis (CF) scientist so that isn’t always easy, but it is important. The…
I was made redundant last year. A week later, I turned 30. One week after that, I found out that I had failed to make it into the preliminary stages of the first publishing competition I’d entered. Then the following week, I was admitted to hospital…
We sat in pristine sands shadowed by titanic sentries dubbed The Twelve Apostles. At the southern end of Australia, I assume they guard against Antarctic penguins, like how The Wall in “Game of Thrones” defended against White Walkers. Maybe an invasion of penguins wouldn’t be bad. “I…
The Power of Escapism
One of the first fiction books I read in adulthood was a book called “The Amazing Adventures of Kavalier & Clay,” by Michael Chabon. The story of how I came across “Kavalier & Clay” begins in high school. In my senior literature class, we had to write…
My Sexuality’s Ties to CF
Sexuality is complicated. Sexuality when you have chronic illness is doubly so. Finding out who you are and what you may or may not be attracted to becomes a mess when you factor in antibiotics that can easily affect libido, plus comorbidities like depression that can often cast a gray pall…
Picture the scene: You’re standing in front of a sea of faces about to present something. You’re a woman who’s 5 feet, 2 inches (OK, 5 feet, 1½ inches) tall. Oh, and several of your major organs don’t work properly. While a healthy person may…
During my sophomore year of college, the background on my computer screen was a cystic fibrosis transmembrane conductance regulator (CFTR) protein, specifically a visualization of its quaternary structure. It looked something like this image. The simplified graphic isn’t an exact representation of what the CFTR protein looks…
Evolving Toward Becoming Visible
Doctors diagnosed me with cystic fibrosis (CF) at 18 months old and I recently turned 29. It’s safe to say I’ve never known a life without it. Growing up, I became accustomed to treatments and pills, my life punctuated by responsibilities in the midst of childhood fun. Despite all that,…
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