Editor’s note: Columnist Michael Casten continues his “Family Perspectives” series exploring how different people who surround Ella tackle the diagnosis of her SMA. Read an introduction to the series here. What is SMA? “It’s a disease that makes it so I can’t walk. As I get older I lose…
Columns
Good Friends and New Adventures
Last week, I wrote about how living with SMA requires me to be proactive. When I want something or I desire to be more independent, I often have to develop creative solutions to overcome physical limitations and logistical issues. This applies to acquiring caregivers, getting transportation, and…
When I started grad school earlier this year, a friend told me that I could not, under any circumstances, start to psychoanalyze the people in my life. I laughed because technically we’re not supposed to do that anyway. I told her she didn’t have…
Editor’s note: Columnist Michael Casten continues his “Family Perspectives” series exploring how different people who surround Ella tackle the diagnosis of her SMA. Read an introduction to the series here. Henry’s the middle child and is 9 years old, surrounded on both sides by his sisters. He fits the…
Over the years, I’ve talked with many SMA individuals and people with other disabilities who crave more independence in their lives. Beyond the physical limitations that come with having a disability, the biggest frustrations have to do with finding resources to become more independent. Society doesn’t exactly make…
I’m lucky that I was diagnosed at a young age, too young to remember anything that happened. I was talking to my father about it the other night, how he and my mother sat shell-shocked across from the doctor, listening to explanation after condolence…
What a New Season Means to Me
If you’re anything like me, then you are just as excited about the turn of the season that happened a few days ago. It is officially spring, here in the Northern Hemisphere of the world. Pretty soon, cherry blossoms will begin to bloom again, the sun will grace…
The Tyranny of ‘More’
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…
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…
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