Just overhead, an ominous, black cloud lingers despite a gentle breeze. The sun shines brightly behind some errant white clouds and blue skies peek out between. Slow, rolling movements make us wait to see which weather will prevail. In the distance, a rainbow forms, arching across…
The other night I was hanging out with a friend from college at a downtown pub. As we sat down and ordered a couple of beers, an older gentleman at a nearby table came and sat next to us and asked me about my robotic arm. I…
We won’t die secret deaths anymore. The world only spins forward. We will be citizens. The time has come. Bye now. You are fabulous creatures, each and every one. And I bless you: More Life. The Great Work Begins.
The battery level on Ella’s power wheelchair Flashing lights, beeping sounds, and a host of power in her little grip. The Permobile C300 is Ella’s power wheelchair. A 304-pound purple machine that provides her with mobility. The C300 has indicators that allow its drivers to know how…
Last fall, in a creative writing course, I wrote a fictional letter that was mostly a satirical piece about my experiences with caregivers. I wrote it from the perspective of a father of a disabled son, who was complaining to the care-giving agency they were using. Aside…
Henry, Ava, Ella, Daddy, and Mommy. Ella is an almost 7-year-old who has been driving a 300+ lb power wheelchair since she was 18 months old. She has had her share of banging into corners, taking chunks out of the drywall, and catching herself in doorways. Occasionally,…
As much of a geek as I am, I can’t recall the first movie I saw in theaters or the first comic book I ever read. Yet, I do remember a time in fifth grade when I heard a song that blew me away and gave me…
I’m often asked by people how traveling works when you have SMA. The simple answer is that flying is a pain, and it’s much easier to do road trips. Over the years my family and I have gone on road trips to Florida, New York City, Missouri, Oklahoma, Colorado, Texas,…
On Saturday, May 27, I’ll be boarding an Amtrak train at Union Depot in St. Paul, Minnesota, at some god-awful time in the morning. You can tell my mom was the one in charge of the trip itinerary. We have a layover in Chicago, and…
As I wrote in a previous column, the unpredictability associated with SMA is in many ways the hardest aspect of the disease. I’ve broken my leg several times, but this was the first time the doctors allowed the bone to heal on its own, instead of casting it or performing…
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