While living with SMA, I’ve been on the receiving end of many people’s misconceptions about the disease. To an extent, I understand their lack of awareness; there are many diseases and conditions that I don’t know about, either. But there’s a fine line between not understanding the complexities of…
Our spring break kicked off on April 6 with an early release for students. I fell into the lengthy car line at 11:30 a.m. to pick up our grandkids, Clara, a first grader, and James, who’s in pre-K. Both had been giddily counting down to this time for days, especially…
There’s an old adage that says March comes in like a lion, but where I’m from, it comes in more like a tease. In New England, March is still cold and snowy, and it seems to drag on for much longer than 31 days. But as soon as the…
Regular readers of my column may know that I love Taylor Swift. I’ve written multiple columns explaining how her songwriting has given me solace. I still buy physical copies of her albums (even though my laptop has no CD drive), and I’ve attended her concerts each time she’s visited my…
I’m just a normal guy who happens to have physical limitations because of SMA. At least, that’s how I want others to see me. But is that how I see myself? I ask because I can be extremely hard on myself, sometimes even getting on my own nerves. Some…
Our granddaughter, Clara, sails through her page of first-grade sight words. She guesses wildly at times, but she’s usually quick to sound out most of the new words. I take opportunities to add bits of often-confusing trivia about homonyms, homophones, and homographs and relay some old stories. Clara prefers…
Traveling to a concert three and a half hours away requires planning, which is all the more true when my disability enters the equation. Between securing transportation, finding an accessible hotel room, and making sure the venue is accessible, some might deem a trip like this one not worth…
It’s been nearly two weeks since most of the U.S. “sprang forward” into daylight saving time (DST), and no matter how many times we go through the biannual time changes, it always seems to take this long for everyone to fully adjust. Some people may even still need to update…
Something you may not know about me is that I have two homes. My first abode is a one-story home that was built to fit my needs almost 20 years ago. It’s in a quiet neighborhood with broken-down streets that make going out for a walk difficult in my wheelchair.
My hands are shaking as I look at my crowdfunding page and type. My mouth is dry and my heart is pounding. I feel like an overheated device running too many apps at once, except the apps are emotions. Anxiety tops the list. For half a year, I’ve known…
