“Ezio Bosso” by Francesco Modeo is licensed under CC BY-SA 4.0
Ezio Bosso enlivened music, and in turn, music gave him life
“If you love me, please don’t ask me to play any more.” Such was the request of the great Ezio Bosso, after conducting the Philharmonic Orchestra of Europe in Puglia, last September. Responding to audiences eager to hear an award-winning pianist renowned for his passionate performances, Bosso implored his fans to embrace his composing and conducting instead.
At only 48 years old, Bosso had already given the world multiple lifetimes of concerts and performances by the time he passed away a few days ago.
Since 2011, Ezio Bosso had lived with a neurodegenerative condition, with symptoms very similar to ALS (SLA in Italian). Amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease in the US, means that a patient’s muscles are undernourished (amyotrophic), affecting the spinal cord (lateral) and leading to scarring or hardening (sclerosis).
Neurodegenerative diseases are the kind of diagnoses that spell out a life sentence. Nerve cells that tell the brain to grip a water glass, and the peripheral nervous system to swallow, lose function over time. The death of these nerve cells cannot be slowed or stopped.
Our every movement depends on voluntary muscle control, and our very life-sustaining basis relies upon involuntary muscle activation. Muscle spasms, extended episodes of laughing or crying, and two piano-playing fingers may be the first reckonings with the disease. As ALS progresses, breathing becomes more a gift than a given, something to be embraced moment-by-moment.
There are 6,000 courageous cases of ALS in Italy today. Statistics reported by the US-based ALS Therapy Development Institute tell us that 97% of people living with ALS choose to forego life-support ventilators. Thus on average, after receiving a diagnosis, half of all people affected will live only 2-3 more years, 20% will live for about 5 more years, and 10% more than 10 years.
“Music is a fortune and our true therapy”
Bosso enlivened music, and in turn, music gave Bosso life. When he wasn’t able to be a physical vessel any longer for his beloved piano, he devoted himself even more to conducting, embracing what he referred to as a magic wand, seeing supernatural sound flow forth from the orchestra below.
Anyone who had witnessed Bosso performing “Following a Bird” — and the subsequent standing ovation in 2016 at the Sanremo Music Festival — would agree that his ability to access music’s elevated mystery was only enhanced as the disease progressed through his body. While ALS may eventually take away every motor function and the ability to live autonomously, it does not affect cognition. ALS attacks the motor neurons but leaves vision, touch, hearing, taste, and smell intact.
“I stopped asking myself why. Every problem is an opportunity”
In these final months of Bosso’s life, the world has retreated into a digital isolation comparable to the technology-assisted life possible for a person living with advanced ALS. As computers are mediating almost all of our professional and social interactions, eye-responsive computers have given ALS patients the ability to write emails and respond in conversations. In an article discussing the intersection of the isolation brought on by the COVID-19 crisis and that of ALS, an 82-year-old ALS patient astutely notices, “The quarantined will echo the arc of the ALS patient who is ultimately denied the ability to give or receive comfort or love through the basic experience of the human touch.”
Understanding the new era of communication and community that has descended upon us, the famous hope and life-giving truth that Ezio Bosso embraced has become urgently relevant:
“Music, like life, can be done in only one way: together”
We are resilient and creative. In a time when we are reimagining what human contact and connection looks like, take heart in the power of togetherness, whether the medium available to you is in the form of words spoken, words typed on a screen, or music compiled across time and space.
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