When the Cards Aren't Fair, Change the Game.
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
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
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
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
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…
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
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
noun A person who is admired or idealized for courage, outstanding achievements, or noble qualities.NORTH AMERICAN: Another term for submarine sandwich. I'm the second one. Really. In my head I'm a sandwich. A bunch of shit thrown together with a condiment or two, held together by squishy matter like bread. Cold cuts such as turkey and … Continue reading HERO STATUS
From 1972-1984, my life was normal. Well, looking back now, there were signs, but I never noticed nor would I have acknowledged them. As a kid, no one wants to be different and when you realize that you are, due to a physical problem, even at age 11, you start to question the whole world. … Continue reading THE JOURNEY
Just the facts for you: There are 42 types of MD. Mine is called Limb-Girdle type 2e. The 2 refers to the fact that I have a recessive gene defect, and the "e" simply means it was the 5th type of gene mutation discovered and catalogued. Limb-Girdle (LGMD) is one of the milder forms of … Continue reading muscular dystrophy 101
Moeschen! 