When I reflect back on the past eighteen months of my life, I can’t help but notice how much things have changed for me. From a purely physical perspective, those changes are visually and readily apparent. My walking is an exercise in cautious calculation and my talking is a study of economy of word choice. I need assistance doing the things that everyone around me does without a premeditated, conscious thought. And despite everything that is stacked up against me, I consider myself both lucky and blessed.
One reason why I feel so fortunate has a lot to do with being told roughly when I am supposed to die. One of my neurologists informed me that the average length of time a patient lives with ALS is between two and four years. Another one characterized my time remaining in terms of years, not decades. Given the grim and dire prognosis of my remaining time on earth, what do I have to feel so lucky about?
Well, living with this disease for the past year and a half has taught me a much needed lesson in prioritizing my life. Gone are the days of work first and all else second. I know for a fact that if I wasn’t sick, I would still be a workaholic. So I’ve got that going for me. Also gone is the time that I spend mad or hold a grudge with someone after an argument or disagreement. Four simple words of explanation are necessary here: Just not worth it. So I’ve got that going for me, too.
It’s incredible to think about how the elimination of those two negative activities has impacted my life for the better. By not allowing myself to lug around all that wasteful and damaging psychological debris on my physical and spiritual person, I can truthfully say that I feel better now than I have felt my whole life, despite the morbid label of a death sentence bestowed upon me. Sure, it’s painfully obvious to see the precipitous decline in the form and function of my body but I decided long ago that some ominous and impending expiration date would have absolutely no impact on the way I am feeling right now.
To quote James Brown, the Godfather of Soul, the following words more than adequately sum up my state of being these days: “I feel good!”
The Adventures of ALS Boy 
Beautifully said! I deeply appreciate the essence of your being, Jason, and the way you have expressed it here.
Jase,
Today I am moved to tears streaming down my face. When I daily try to think of one – just one – reason why this is happening to you, I do find hope and consolation in the many people you are touching with your grace and humor. How very lucky we as a family have been to have you pre-ALS and even luckier we are now. You have drawn us closer in so many ways, not to mention your little Bug.
” gone is the time that I spend mad or hold a grudge with someone after an argument or disagreement. Four simple words of explanation are necessary here: Just not worth it.”
and your words about working being too much of a priority in ones’ life… amen. Amen to you, my dear.
This blog I must pass on to others.
I love you.
AN
Jason-
I’m with you regarding “just not worth it.” Stripping the negativity makes a world of difference. From day one–well,maybe day two–I’ve said that if my face is going to freeze, it’ll freeze with a smile on it.
You have a great blog and an incredible way with words. Thank you for the gift you give.
Deb
I’ve had the pleasure to know and love your father John Picetti and just being around his love and open heart has always helped me to see the positive in life. It is evident that you follow in his footsteps. You have such a beautiful voice and an even more beautiful heart. Everyone that has the opportunity to read your words of wisdom or to spend time with you has been given a gift. You are a remarkable human being and an inspiration to many. Your words have moved me to tears but happy tears…ones I know will help me to stick to your lesson of putting ‘life’ first and making the most out of every day we have – both within ourselves and with family and friends. Your words have candor, humor, kindness, balance and a remarkable ability to touch the soul. “Life is just a chance to grow a soul” and there is no doubt you have succeeded with that. Thank you!