Archive for August, 2008

So, I had this dream this morning right before I woke up to get up for the day. It happened sometime between the time my wife left for work around 6 am and the time I actually arose from my night’s rest around 7:30 am.

Before I continue on with the dream, allow me to provide you a little back story as to why I was sleeping in on a school day. In the years prior to embarking on my new ALS-induced lifestyle, I was what people referred to as a morning person. I used to spring out of bed minutes before the alarm would ring, all bright-eyed and bushy-tailed, at the groan-inducing time of 5 am. For the past nine years, I arrived at school and entered my classroom at 7 am, at least an hour before the first period bell would ring.

However, this year, when I decided not to go back into the classroom as a teacher, my role at school changed, as well as my morning routine on some days. I have offered my services to the school as a volunteer, doing various and sundry tasks to assist my former colleagues in whatever ways they can think of. This arrangement, while keeping me involved and productive in an environment that I am both comfortable and expert in, accomplishes two ancillary goals: it allows me to choose my own workload and to set my own hours. And today was a textbook example of the latter.

After a summer of late nights and lazy mornings, the start of the school year caught me woefully unprepared in the area of energy management. The toxic combination of waking up early and working too hard and too long (the standard here is relative, mind you), quite frankly, kicked my ass. I made the executive decision, on the way home from my second day of work, to modify my arrival time on the third day until 11 am. This amended eta allowed me to grab a jamba juice and pick up my weeks worth of new comics prior to gracing the hallowed halls of school with my presence.

Back to the dream.

Sometime this morning, a had the most vivid and real-feeling dream that I have had in quite some time. It felt as if I was in first-person and third-person at the same time. To clarify this statement a bit, imagine what it would feel like to watch yourself doing whatever it was you were doing and actually being involved in that activity. I know it sounds weird, but if you can buy into that idea then you have a notion of what the dream felt like.

In my dream I was walking down the street. That’s it. Just walking down the street. I recall sidewalks and trees, friends pulling up in cars and offering me a ride and I would refuse them. I felt my legs moving and my feet grabbing the pavement and propelling me forward. I even felt the wind blow through my hair and cool off my face. It was the most incredible feeling ever; it was as if I was there in the flesh and blood. Not only did I feel all of this, I actually saw it as well. I had a bird’s eye view of the entire scene as it played out. That was a trip as well. I watched every step and every footfall.

The entire experience was invigorating. It was as if I was normal again. How something as simple as walking down the street could fill my soul with so much joy was beyond my comprehension at that time, all I knew was that I never wanted that feeling to end. I’m fortunate enough at this stage in my disease to still have the ability to move around under my own power, albeit with a whole lot of wobbleliness and uncertainty, but I still can. This dream reminded me that the simple act of walking down the street is a gift and a blessing that should be celebrated and savored for a lifetime.


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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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