Tuesday, May 10, 2011

So What If I Shake?

I shake, spasm and stutter. Not all the time. Stop in some morning for coffee at my Starbucks office and, chances are, you wouldn't notice a thing. Spend a few days with me 24/7 and you'd get a good sense of the rhythm of my life; how well I do in the morning, how things can deteriorate in the afternoon - or not - and how the evenings can be a crap shoot. You might see me vibrate like a tuning fork on steroids. You might see me hyper-extend my neck until you'd bet the back of my head was about to touch my spine. And you might see me enveloped by the brain fog that slows down my cognition as if someone had poured glue on an engine.

My condition is a movement disorder called tics and bears some resemblance to Tourette's Syndrome with which people are more familiar. The cause and cure fall under the heading of known unknowns.

I don't let this condition define me. I do my best each day to get the most out of each day, complaining as little as possible and only to my wife in our quiet moments. Complaining doesn't change anything and takes too much energy which is often a commodity in short supply. And I never forget that there are many people whose burdens are far heavier than mine.

An article in the Science Section in today's New York Times makes the point. The article is an interview with Stephen Hawking, perhaps the most influential physicist of our time, who was diagnosed with amyotrophic lateral sclerosis (also known as Lou Gehrig's disease) at the age of 21, a condition that usually is fatal within 5 years. Hawking is now 69. When asked by the reporter what advice he had for those with disabilities, he said: "... concentrate on things your disability doesn’t prevent you doing well, and don’t regret the things it interferes with. Don’t be disabled in spirit, as well as physically."

Lest you think that's easier said than done, here's how he communicates with the world: "Mostly paralyzed, he can speak only through a computerized voice simulator. On a screen attached to his wheelchair, commonly used words flash past him. With a cheek muscle, he signals an electronic sensor in his eyeglasses to transmit instructions to the computer. In this way he slowly builds sentences; the computer transforms them into the metallic, otherworldly voice familiar to Dr. Hawking’s legion of fans."

And when describing the special joys of scientific discovery, he said: “I wouldn’t compare it to sex, ....but it lasts longer.”

This is a man who knows how to live. And I thought it would be tough to come up with material for a blog! All I have to do is pay attention.

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