The day arrived when COVID-19 stepped into our home via our youngest daughter. She found out that a university classmate who’d sat next to her had been infected with omicron. Fortunately, she is in a self-contained area of our home, so as long my husband and I don’t come into…
In 2018, Gov. Bill Haslam made Tennessee the first U.S. state to declare March as Amyloidosis Awareness Month. Since then, those diagnosed with the disease worldwide are acknowledged, recognized, and appreciated this month for the untold challenges they face with this condition. Setting aside a particular month to…
Every week I write my column using my personal experience as a caregiver to a spouse diagnosed with hereditary ATTR amyloidosis. Writing demonstrates my competence to reflect on my words and actions. I can celebrate my strength and tenacity in carrying my responsibilities as a mother to four…
As a columnist, I try to read and expose myself to topics that might inform my writing. Recently, I came across a phrase that piqued my interest because it closely reflected what my husband and I, as well as many disease sufferers I’ve met in my work as a patient…
I recently accompanied my husband, Aubrey, to an appointment with a specialist at the hospital and noticed a sign taped to the wall in the waiting room. It was a word cloud graphic highlighting the practices that healthcare practitioners strive for to create a good experience for patients. As I…
When I married my husband, Aubrey, I knew a hereditary and life-threatening disease affected some members of his family, but I had little other information about it. We naively carried on with our lives, secretly hoping the disease hadn’t reached his generation. When we learned that several of Aubrey’s first…
Every week I sit at my desk and ponder what I should write about. As I stare out the window that faces my street, I reflect on everything my husband, Aubrey, and I have encountered on our amyloidosis journey, and the tools that have helped us survive. I’m not…
Lunar New Year celebrations, which began on Feb. 1, last for 15 days. As I write this on the eve of that date, I am busy cooking a selection of traditional dishes for the family to enjoy. Because we live in New Zealand, a Western country far away from family…
I recently counted the number of plants in my house and came up with 45. I’ll admit I’ve gone slightly overboard, but in my defense, my passion began two years ago. When the pandemic hit here in New Zealand, many of us were forced to stay home. We took up…
My alarm goes off at 5:30 every morning, and I mute it as quickly as possible to avoid waking my husband, Aubrey (if he’s even in bed, that is, as he suffers from insomnia). I go for a run before sunrise and avoid the crowds, as very few people…