joy, gratitude and compassion.
Becker, Not Dead Yet, is the name of the movie we were invited to
view. It was the premier and it was
being held to benefit Jason Becker and the ALS (amyotrophic lateral sclerosis,
aka Lou Gehrig’s Disease) Foundation. We
were guests of Cytokinetics which is a drug development group doing research to
aid in the treatment and cure of these types of diseases. We didn’t know Jason.
We knew nothing about his story but the invitation was for a group of us to
travel to a club, Bimbo’s, in San Francisco and have dinner and watch the
film. We were already in California at
the time so it was an appealing invitation.
We entered the club, got a beverage and then went to meet Jason. He was in a motorized wheel chair and there
was a line to meet him. He could no
longer move any part of his body other than his eyes and some facial
muscles. He was surrounded by what I
assumed to be family members and caregivers.
before we arrived. He was a guitar
virtuoso from the time he was five years old until he was eighteen when he was
diagnosed with ALS. The disease
progressed very quickly and while he was able to record a lot of his work
before his upper body deserted him, he had to drop out of the David Roth world
tour. He had been recruited as Van Halen’s replacement. He was now 41. His
father had developed a system of communication that allowed Jason to
“talk” with his eyes. It was a
matrix system and it depended on how many times he blinked and what direction
he rolled his eyes. His parents and
caregivers could spell out the words Jason was indicting and then they would
share his comments with the visitor. We
were next in line to meet him.
never met anyone with ALS and I’ve never really tried to have a conversation
with a paraplegic. But, he had his
interpreters with him so I wasn’t too concerned. We approached and I confessed to him that I
was new to his story but I was looking forward to becoming one of his newest
fans. He made a few eye movements and
his father told us he had just responded, “awesome.” Awesome was exactly what I was thinking and
after we watched the film, awesome was exactly the word I would use to describe
this young man’s talent, the dedication of his amazing family and friends and
his undaunted courage.
diagnosis of ALS is considered a terminal diagnosis. There is no cure. There is no treatment. There is no hope. Normally, one would die within a few years of
the diagnosis. As of this date, Jason
has been alive for 23 years after the diagnosis; he’s “not dead
yet.” Not only is he still alive
but he’s still composing music. His
father has come up with another way to help Jason compose the music he can
still hear, the music he’s still creating in his mind. My husband, Sandy and I were inspired by
Jason story. We are inspired by Jason
himself and by the love and support he has gathered around him.
next morning I sat with another event attendee and we began to discuss all we
had learned from the night before. We
shared our newfound appreciation for Jason and his family. I then shared that after last night’s
experience I found myself asking the question, if someone was to make a movie
of my life, what would be in it? Jason
is only 41. Most of the movie revolved
around his first eighteen years and the accomplishments he had already
made. It appeared he was on his way to
becoming one of the all-time great guitarists.
He was on his way to becoming a legend.
I’m not a guitar aficionado but even I recognized several of the names
of the people in the movie who spoke about him.
He had already commanded such respect as an artist and as a human being
by the age of eighteen that twenty-three years later, these famous musicians
were still giving testimony to him and his talent.
don’t know about you but I must admit that if my life’s reputation had to depend
on what I’d accomplished up until my eighteenth year, it would be very lacking
in accomplishments. I’m sixty-seven as
of this writing and I would hope that I have finally achieved some measure of
respect for a lifetime of loving effort.
What would a movie of my life include?
What would a movie of your life look like? When discussing this with my friend, we found
ourselves focusing on the virtues of kindness and love. As long as our movie focused on promoting
those two qualities, we decided it would be a good film.
once saw a really scary movie with Robin Williams about an internal camera
device that was implanted in everyone at their birth and was extracted when
they died. His profession was to put
together their obituary in film form from their camera. He was supposed to be one of the best because
he could edit the film of even the most cruel, horrendous behavior and make the
obituary a glowing commendation of the deceased. It was so disturbing that I shut it off
almost at the beginning but the concept left me with a lot to think about.
day will come when someone will be piecing my life together to help others
remember me. It’s inevitable. What will my “movie” say about me? Will I need a professional editor? Will it be a comedy or a drama and what will
it be rated? Have you heard the advice about writing out your own obituary so
you can decide before you die how you want to be remembered and then take the
steps necessary to paint that picture? I
know no matter how we craft our lives not everyone will appreciate what we’ve
attempted to do no matter how kind and caring we have acted. If it happens so be it but I shouldn’t expect
to be recognized for my good works.
Really, the most important part of all this is if I did my best, my utmost
to live a life worthy of my own respect and that of my God. Kindness, forgiveness and love are the three
qualities I’d like the movie of my life to revolve around. Hopefully, I have a few more years left to
make sure the ending of my movie is as close to my ideal as it possibly can be.