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…
Columns
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…
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…
“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…
Editor’s note: Columnist Michael Casten continues his “Family Perspectives” series by interviewing Ella’s grandmother. In this series, Casten sets out to explore how different people who surround Ella tackle the diagnosis of her SMA. Read an introduction to the series here. A woman who is the matriarch…
February was a pretty exhausting month for me. I kicked it off with a two-week stint of pneumonia and a weekend in the hospital, then I got straight back to work once I felt better. To top it all off, I ended it with a 24-hour stomach virus…
I recently switched therapists. I’ve only seen her a few times, but I already have a good feeling about it. She’s survived two different types of cancer and has a wheelchair for when her chronic illness flares up. Her daughter also was misdiagnosed with…
Some of my biggest lessons have come from my toughest messes. To me, that’s the best way to grow. It’s the best way to move forward and come to terms with the challenges and obstacles people with SMA face on a daily basis. However, being able to learn…
