I don't want to be superman anymore.
ALS makes people alone. Let me explain that. I was at a party last week with a bunch of people who didn't know my background and only a few who did. After a while the conversations switch to small talk and the person sitting next to me asks the scary question " so what do you do?"
Of course I answered.
Body language is an interesting thing. Here was a new acquaintance that a minute earlier was leaning in to talk, touch and interact with me, suddenly leaning back.
I then looked up to see the few who knew and cared about me smiling that uneasy smile.
The truth was out… I have cooties…
Now not everyone handles Lou Gehrig Disease like that, thank god, but many times the changes are there, just a lot more subtle.
People always say " you look so good", well I'm sorry my arm didn't whither up or my hairs fall out. ALS doesn't announce its presence. ALS is a silent stalker, a quiet thief who sneaks up and steals little things every hour, every day, until suddenly it is too late and everything in your life has been taken. And all the stuff that we take for granted, talking, smiling and finally breathing become accomplishments, as once easy tasks become hard and once hard tasks become impossible. Yes, all is not well in Stuartville. But I avoid the pain. Talk to me and I won't bring it up, unless you ask and I wish you would. The problem is talking about ALS is only one of the answers. When you gauge advances in days of life, every day lost is unretrievable, every delay significant.
Folks talk about the "Power of Positive Thinking" and I think laughter is great medicine. And I do laugh; anyone who has met me has heard my thunderous laugh. But is it really laughter? Maybe it's a howl or scream for help in another language and no one is really listening? Laughter, Fear and Sorrow are closer emotions then you would think.
Which is it, Tears of Joy or tears of sorrow, Uncontrollable laughter or uncontrollable fear?
I woke up this morning, just like every other morning, but a little part of me still sleeps.
And every day a little more refuses to wake and never will.
The only thing that can wake my body from its slumber is a cure.
Please Help. Thank You for listening.
Stuart Cohen
"Motivation is the fuel in your success engine. Make sure that you oil it regularly." Gary Vurnum
MGM
© ALS Independence 2003-08