I wrote the list below on an old blog in 2007. Recently I found it again and I laughed out loud at several of the numbers. I had just turned 35 and seemed to be in a reflective mood while also pointing the powerful gun of perception at myself. I think we all do this, … Continue reading THINGS I KNOW…
LAST HALLOWEEN
I grew up on a quiet street in a blue collar town about 30 miles north of Boston. Not quite postcard New England, but we did have our own horse track, amusement park, and a glider port where I have memories of small gliders being towed behind one-engine aircraft above the town and then hearing … Continue reading LAST HALLOWEEN
JOSH
"I had a lover's quarrel with the world." -Robert Frost "With a deadline looming and on the verge of exhaustion, nothing was going to stop me. If only for a moment, I was able to recapture some of my old magic, pushing myself every time I wanted to take a break. Just after midnight, I … Continue reading JOSH
WORK
After receiving my driver’s license in 1989, I figured it was a good time to look for a job to make a little cash. Also, my father told me that car insurance and gas money wasn’t just growing on a magical tree out behind our house. I was 16 years old and my dystrophy was … Continue reading WORK
THE DREAM
Scientists who study sleep claim that human dreams last 5 seconds or less in real time. Read that again. 5 seconds? I don't know how you feel, but mine feel longer. Significantly longer. Here's one: The day is sunny, warm, and bright. The sky is severe clear. Totally blue, like September 11 blue. Perfect. I … Continue reading THE DREAM
BREATHE
A few years ago at a disability conference, I was telling the story of my journey and my takeaway message was (and is) that all humans are more the same than different. We all breathe the same air. We all drink the same water. We all strive for love, acceptance, respect, and a feeling of … Continue reading BREATHE
LIFE HAPPENS
Think back a moment to when you were a kid. Not all the way back, but middle school or high school when you think you have life scoped out. You pretty much assume that all adults don't get it, talk too much without doing anything, and are no help to you at all. You likely … Continue reading LIFE HAPPENS
SO I’VE HEARD…
Let's have some fun today shall we? Of course we should! All of us NEED to laugh a few times during our waking hours, and so I present to you, loyal reader, things that people have said to me over the course of my life as I have ventured out in public with a manual … Continue reading SO I’VE HEARD…
WORLD DUCHENNE AWARENESS DAY
Before writing I thought a lot about how I would like to present what I'm about to say. My brain hovered between scientific information, layman's terms and comparisons between Duchenne MD and the type that I live with. (Limb-Girdle 2e). Well, what the hell, let's do a bit of everything for those of you who … Continue reading WORLD DUCHENNE AWARENESS DAY
KNOCK, KNOCK
That knocking at my door is opportunity and change. One of my favorite musical/lyricist is the late great Neil Peart of the band Rush. His words inspire me, and right now what's playing in my brain are lyrics from their song Tom Sawyer: "Changes aren't permanent, but change is." Some changes are insignificant (toothpaste brand? … Continue reading KNOCK, KNOCK