My optimistic crust cracked a bit when I opened the mailbox last week and spied an envelope from my late mother’s life insurance company. It could have been correspondence requesting additional information so they could “process this claim promptly,” or it could have been the proceeds from the claim.
I was at a friend’s wedding a few months ago when I pondered the question of how to properly introduce myself. Typically, I give the spiel that the company I work for is a network of rare disease websites, and my job involves overseeing online communities and writing and…
There’s nothing quite as satisfying as checking an item off your bucket list. Earlier this year, I put on my big girl pants and rescheduled a long-awaited tattoo appointment. It was a whole ordeal — one you’ll remember if you’ve been reading my column for a while. In late January,…
While reflecting on my life today, a witty phrase popped into my head. I laughed to myself as I thought, “I don’t have to go looking for trouble, trouble will find me.” As I’ve said before, if I didn’t have a sense of humor about some things, I would…
I had different plans for this week’s column. As I write this, I have a spreadsheet open with my column schedule. Next to the deadline date I’ve typed “TFIOS column,” which stands for “The Fault in Our Stars,” a young adult romance novel by John Green that explores how…
A year after I started fine-tuning the seating of my new wheelchair, I found myself back where it all started. I wrote a few weeks ago about my continuing struggles with the chair. Since then, one of three programming problems has been solved. My seating appointment was meant to…
After moving into our new home a few months ago, members of our family made a trip to the Indiana Bureau of Motor Vehicles to update our IDs with our new address. I had another mission to accomplish while there. I wanted to register as an…
I’ve been having trouble coming up with a topic for this column. Perhaps I shouldn’t open with that, but stay with me here. At first, I blamed it on writer’s block. Other than my last column, I haven’t written much in the past two months due to my hospitalization. Any…
Ahhh. Spring glory in the North Carolina mountains! Light snow covered the ground Sunday morning; by afternoon, honeybees bustled on yellow dandelion flowers, gathering precious pollen to feed bee babies in the hives. Honey, left, and Maple, watching the snow melt Sunday from their sunny spot. (Photo by Helen…
My first Evrysdi-versary passed without incident. Ironic, considering how much time and effort I put into acquiring the medication. A disease-modifying treatment (DMT) for SMA is no small thing. Spinraza (nusinersen) took the community by storm, with patients around the world petitioning their insurance companies. I wasn’t immune to the…
Get regular updates to your inbox.