I fought it. The symbol of weakness sat by itself in the guest room where I never went. Whenever I struggled to walk past the door, I purposefully averted my eyes, looking down or away. I did anything I could to avoid dealing with the wheelchair the young guy delivered in October of 2007. It was an ominous sign of my fading independence that … Read More A thief gave me the world
The following is a Facebook post from Nicky Williams Dexter. She shared her daily reality and it gripped me. She and I share the struggles of FSHD yet we have different experiences. I’m reposting this with her permission. If you’d like to contact her, she accepts all friend requests from folks interested in FSHD. I encourage all of you to drop her a line … Read More The View From Nicky’s Seat
I’ve never been much of a vacationer. Growing up, we didn’t go on many vacations. It just wasn’t that big of a deal for my family. I can remember a couple trips to the beach, one or two visits to see distant relatives, and a week at a cabin at a state park. Outside of those instances, my travel experiences were mostly centered around … Read More Respite
Last week, I found myself having lunch with family members from Memphis. We picked a restaurant that was in a town that was about a two-hour drive for each of us and coincidentally also a restaurant I’d been wanting to visit for quite a while because it allegedly serves the best lemon icebox pie on the planet.
(…continued) By the time college rolled around in the fall of 1996, my muscular dystrophy had progressed to the point where getting up from a chair was difficult. I had to be aware of what material the soles of my shoes were made of and the type of flooring to be sure there was enough grip for me to do the awkward dance I … Read More It was time to take a load off: College
(…continued) On June 2, 1992, my family (movers) loaded up the truck (an 18 wheeler) and we moved from Louisville, where I spent my first 14 2/3 years on this planet, to our new home on Sagewood Dr. in Brandon. I remember driving down our long gravel driveway for the last time on that warm, late spring day. The sky was high and clear. … Read More It was time to take a load off: High school
I played tee ball for the first time in the summer between 1st and 2nd grade. The year was 1984, and I was on the worst team in the Louisville Parks and Recreation tee ball league. My memories of those early events are sparse and a bit foggy, but I’m almost 40, and that was over 32 years ago. I do remember having two young guys, probably … Read More It was time to take a load off: Birth – diagnosis
The other night, Jana and I were in the kitchen together. I was sitting at the bar fiddling with my phone while she put dishes into the dishwasher; tidying things before masterfully putting together a tofu-centered supper that this rabid carnivore enjoyed more than an earthquake under my least favorite college’s campus. We were chatting aimlessly about our perspectives on the election results, the blistered bottom Bama … Read More What’s this all about?