This Pride Month, I recalled an old friend from England telling me, “If anyone thinks being gay or bi is a choice or a lifestyle, they’re probably not straight.” It’s a broad statement, one I believed then, but not anymore. In the years since I’ve heard it, I’ve known people…
Columns
My parents’ dreams revolve around the middle of nowhere. You probably think I’m joking. But the fact remains that I’m writing this column from a tiny town in Wisconsin with a population in the 800s. They’ve been nurturing this dream for as long as I can remember. Looking back, I…
I’m fairly frequently asked what the hardest part of living with SMA is, but no matter how many times I hear the question, I seldom know how to answer it. Each day brings its own unique hardships, so how I respond changes based on the struggles of that particular…
While most of my elementary school days are a bit fuzzy in my head, lately I can’t stop thinking about how we used to play dodgeball during gym class. Our class would split into two groups, we were given red and blue Nerf balls, and the last person standing would…
We columnists at Bionews know our submission and publishing schedule well in advance, and by that, I mean months in advance. The draft for my columns is due by 8 a.m. on Monday before its publication on Wednesday, twice each month. Having gained a bit of wisdom over the…
For the past several months, I’ve been obsessed with stories about financial fraud by perpetrators of elaborate schemes. Hence, I fell down the rabbit hole of the story of Elizabeth Holmes, the disgraced CEO and founder of Theranos, a startup company Holmes promised would change the face of healthcare…
A few days ago, I received my 17th injection of Spinraza (nusinersen), one of several SMA treatments approved by the U.S. Food and Drug Administration. Every four months, I go to the hospital for a maintenance dose administered via a cervical injection. When I started this process…
My Body Is Weird — and I Love It
No matter how hard I try, there are things I continually forget. Take, for example, the few times I’ve hosted parties. I’m an introvert through and through, so hosting isn’t exactly my forte, but I love spending time with friends. I was so excited for my very first dinner party…
Here comes the latest adventure in the saga to remove my kidney stones. Spoiler alert: I came close to leaping over the hurdle of getting the surgery done. Unfortunately, though, I didn’t quite make it to the operating room. Relax. The reason had nothing to do with me.
In my mind, Luke Skywalker was in love with me. For context: I was never much of a Lego girl. But I was a “Star Wars” girl. It stood to reason, then, that the Lego Star Wars games were right up my alley. I loved everything to do with…
Recent Posts
- For SMA children, early start to therapy may help with swallowing, eating
- Guest Voice: Helping my son live his best life with SMA is an honor
- Blood biomarker ratio may track Spinraza response in SMA children
- Would it be a ‘tale as old as time’ if Belle were a person with a disability?
- From teacher, to parent, to SMA parent, to grandparent
