I envy my younger self. Throughout childhood, I was content pretty much all the time. In the race of life, I was on equal ground with everyone else. Sure, I had physical limitations, but they didn’t keep me from moving forward in life. I went to school…
Columns
Big Sister Chimes In
Editor’s note: Columnist Michael Casten continues his “Family Perspectives” series in which he explores how different people who surround Ella tackle the diagnosis of her SMA. Read an introduction to the series here. A smart little girl of 10, Ava gravitates to her friends more often now…
Using My ‘Handicapped Card’
When I was a kid, my family used me to bump to the front of the line for the Haunted Mansion ride at Disney World. Despite my kicking and screaming because I was scared of the ghosts and creepy effects on the ride, my parents made me…
You know how sometimes a comment can stick with you? That’s been my life this past week. It was something my dad said a while back. I don’t even remember the context, though I’m pretty sure it was random, out of the blue. “You…
Caregiving is an important job. After all, people like me would not exist without them. In a way, caregivers are my heroes. There are not many jobs that dictate the well-being, or even the very existence of another person, but this one does. It takes…
From the Heart of a Mother
Editor’s note: Columnist Michael Casten continues his “Family Perspectives” series in which he explores how different people who surround Ella tackle the diagnosis of her SMA. Read an introduction to the series here. Lindsay, Ella’s mom and my wife, is a vibrant woman whose beauty is surpassed…
I’ve written in the past about my Echo Show from Amazon Alexa, but I wanted to provide further updates on how this device is helping me in my daily life. At the time of writing this, Skynet still hasn’t achieved total world domination, so I’m still OK…
Kicking the Door Open
I’ve never been all that interested in the Oscars. I prefer TV over film and, anyway, I can trust social media to keep me informed of the fashion highlights. Still, I’ve found myself getting reluctantly dragged into the discourse surrounding the lack of diversity…
SMA: A World of Firsts
“Well, Alyssa, I’ve certainly experienced many firsts thanks to you,” my mother said as a nurse untied the surgical gown from her back. I’m sure we all have our fair share of firsts when it comes to living with a disease in which the unexpected becomes the expected.
“Refined by fire” is an idea I have talked a lot about. I identify with it so much that I decided to use it as my column title. I have given examples of my refinement, but I want to delve deeper into the concept itself by giving a…
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