Who is ALS Boy?

Who is this ALS Boy and why does he have so many amazing adventures?

Is he the latest costumed superhero to hit the big screen during the quality-deprived popcorn-movie summer season?

If so, does he have a secret identity? Is he a brilliant military industrialist or does he work for a newspaper?

Or is he just a normal guy, who, when faced with extraordinary circumstances, finds his life irrevocably altered beyond any stretch of his own relatively fertile imagination?

If you surmised that the correct answer was the last choice, then give yourself a prize of your own choosing, because, as Ed McMahon used to say on the Tonight Show, “you are correct, sir!”

Allow me to introduce myself to you. My name is Jason and I have a neuromuscular disease called ALS, or Lou Gehrig’s disease. In the short span of less than twelve months, I have had my ability to walk slowed down to tentative cane-assisted wobbly steps, my ability to utilize the fine motor skills in my hands has diminished to such a degree that I have a difficult time removing items from my pants pockets, and my ability to speak clearly and audibly has nearly been rendered merely a memory for surviving audio and video tapes and digital recordings. I can no longer work in my beloved and chosen profession as a teacher, I can no longer sing and play the piano like I used to, and I don’t trust my balance and stability enough to carry my four and a half month old daughter across the room.

Now, before you begin to feel sorry for my plight, ponder for a second the title of this blog, the Adventures of ALS Boy.  Why would a blog about a fatal disease have more than a hint of fun and joviality imbedded in the title? Well, to answer that question as succinctly as possible, I guess that I am tired of feeling sorry for myself. I am tired of crying about it and I refuse to let this disease rule my life and control my spirit. Aside from the obvious, I have a great life and I fully intend to live the rest of my life without any hint of regret. I plan to enjoy every second I have with my wonderful family and incredible friends. I plan to do things and go places and experience life with a (relatively) reckless abandon.

And I will tell my story here (along with a bunch of other cool observations and musings) in the Adventures of ALS Boy.

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