posted on April 9, 2012 - 12:03pm
I love movies. Always have, always will. I pumped my fist in the air (metaphorically) when Captain America beat the snot out of Red Skull, held my breath (also, metaphorically) while Frodo and Sam scaled Mount Doom, and teared up when the starship Enterprise first appeared in the latest Star Trek movie.
posted on October 1, 2011 - 12:33pm
Many years ago, when the physician said that my son Joe, who had type 1 spinal muscular atrophy, perhaps would live until 2 years old, I went into “Rambo mode,” ready to attack anything that got close enough to harm him.
But as the years went by and Joe’s health held stable, I silently vowed I would do my best to allow him to live outside the sterile little bubble I had created around him.
posted on July 1, 2011 - 4:12pm
It didn’t happen during my childhood, when I walked around wobbly with a pediatric walker, smiling and conversing.
It didn’t happen in my sophomore year of high school, after an emergency room visit led to an 11-day hospital stay and a diagnosis of type 1 diabetes. It didn’t happen my senior year of high school, after a four-day hospital stay to implant a pacemaker to regulate my slow heartbeat....
posted on March 31, 2011 - 11:45am
When I graduated from high school in 1984, there were no tearful farewells to friends and girlfriends while a New Wave soundtrack played in the background like some John Hughes movie.
Frankly, I was relieved to be free to start my writing career, and hopefully be heralded as the next William Gibson. When my science fiction failed to sell, I switched to writing thrillers and, consequently, hoped...
posted on October 1, 2010 - 5:00pm
From where I sit, in the sucessor to the Blue Chariot — a snazzy power chair with hazard lights — I pose this question: Should a 66-year-old man with limited use of his arms, hands, fingers and neck due to myotonic muscular dystrophy attempt to write a novel? Well, the answer to this poser is simple — NEVER! Like the kids say, “Duh!”
Unless you are a complete masochist or on the cutting edge of...
posted on July 1, 2010 - 5:32pm
Which are you? “The Good Cripple” or “The Bad Cripple”? Among some disabled advocates, we’re being asked to decide our “archetype” in a way that resembles the divide between the North and South during the Civil War. Perhaps we need not be so drastic.
posted on April 1, 2010 - 4:09pm
When I was 3 years old, I was diagnosed with Duchenne muscular dystrophy (DMD), the most common of the nine forms of muscular dystrophy. My parents never hid my diagnosis from me but, besides my parents, the only way I learned more about muscular dystrophy (MD) and its future effects on me was through my observation of other campers at MDA summer camp, beginning at age 9. As a child, I never read...
posted on December 31, 2009 - 1:00am
In the 1980s, our worlds changed forever, when our separate families each received the devastating news that our children had Duchenne muscular dystrophy. At the time of the diagnosis, we were told our boys probably would live into their mid-teens, or possibly early 20s.
Well, here we are — it’s 2010 and our boys are still here. Jason (Adele’s son), Patrick and David range in age from 24 to 30....
posted on October 1, 2009 - 3:26pm
When I was 12 years old, I received a diagnosis of Friedreich’s ataxia (FA), a rare neuromuscular disease. That’s also the year I met Ms. Wheelchair Maryland and started to dream of entering the Ms. Wheelchair pageant. But that goal quickly was overshadowed by the usual adolescent things.
posted on July 1, 2009 - 2:52pm
Imagine 800 middle school students arriving for freshman orientation at Trabuco Hills High School in Southern California.
All students are taking their first steps onto a campus four times the size of their current school, complete with swimming pool, tennis courts, a school store, vending machines and a gym with real wood flooring.
