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[The Ross Report. By Robert Ross, Senior Vice President + Executive Director]

October 30, 2002

ON TONY VITALE AND LIFE LIVED AS AN ADVENTURE

Anthony J. Vitale told those close to him he could never picture himself as an old man. He died on Aug. 5, 2002, at the age of 57 after a nine-year battle against amyotrophic lateral sclerosis (ALS).

Jeanine, his wife of 27 years, says that, despite his shortened years, he lived enough for three lifetimes.

Vitale, a resident of Northboro, Mass., was an extraordinarily accomplished linguist, teacher and engineer — and in his later years a dedicated volunteer for MDA.

A Fulbright scholar who earned his doctorate in linguistics from Cornell University, Vitale learned numerous languages, including French, German, Italian and Polish — and created a teach-yourself-Swahili course that’s still used in universities today. He joined the Peace Corps and taught and visited in such countries as Somalia, Kenya, Zaire, Czechoslovakia and Poland.

Jeanine literally dodged bullets with him in strife-ridden Tanzania. While being married to Tony Vitale was obviously an adventure, neither could foresee the challenges that lay ahead.

Vitale eventually joined his linguistic skills to an interest in computer technology. He started designing electronic systems to enhance the communication abilities of people with disabilities. While working for Digital Equipment Corp., he helped create the DECtalk system, computer technology that turns text into humanlike speech.

Vitale received his diagnosis of ALS in 1993. Shortly thereafter, some of his favorite physical activities — jogging, tennis and weightlifting — became things of the past. He found outlets for his energies in other pursuits, such as continuing to refine DECtalk.

“I can take steps to compensate for the loss of physical abilities and continue working,” Vitale said. “Having ALS provides an advantage, an insider’s view of the communication challenges faced by people with disabilities.”

Eventually Vitale’s powers of speech failed as a result of ALS. In the supreme irony of his life, in order to communicate he then had to rely upon the DECtalk technology that he helped develop. For mobility he used a motorized wheelchair.

Mary Leeman, an MDA health care services coordinator who came to know the Vitales well, said, “The engineering work he did with DECtalk helped people with disabilities, and ironically helped him.”

Meanwhile, Vitale had became a highly effective writer and speaker in behalf of MDA, often appearing at MDA public gatherings, using the synthetic DECtalk voice to speak for him when that became necessary.

For his own inspiration, Vitale liked to turn to great quotations like this one from Galileo Galilei: “You cannot teach a man anything. You can only help him find it within himself.”

Another favorite, from Albert Einstein: “Imagination is more important than knowledge.”

Inveterate traveler that he was, Vitale compared having ALS to journeying in a foreign land. He once wrote:

An individual who is able-bodied and then suddenly is severely disabled is like a person being let off a plane in an airport in a foreign country and wished good luck. And there you are, tired, confused, searching for a kind face, and God willing, at least one friend at your side.

You examine your surroundings. You see a strange place with a strange language. And, occasionally, someone even asks you to be a translator. The clothes are all wrong, they're driving on the wrong side of the road, the houses have mud walls and thatched roofs, and the colors and the smells and the sounds are different and strange.

But you soon find yourself adapting to these new colors, styles, smells and sounds simply because they work better in this new environment. The food is different but you've adapted to different cuisine before and you'll have to do it again.

Vitale had a well-developed sense of humor. While lecturing at a conference on technology for people with disabilities, he programmed his DECtalk device to warble “Strangers in the Night” for the pleased lecture-goers, including Sinatra-style “dooby-dooby-doo” scatting.

Vitale appeared on the local broadcast of the Jerry Lewis MDA Telethon on “Love Network” station WCVB-TV in Boston in 1995 and via videotape on the Telethon’s national broadcast the following year.

MDA decided to recognize his extraordinary qualities in 1997 when Vitale was named MDA’s national personal achievement award recipient.

“He was a wonderful, wonderful person who was bright and articulate,” Leeman said. “He had a way of drawing people to him. He loved life and loved people.”

In later years, Vitale’s ALS progression prevented him from using DECtalk effectively, and it became an ongoing challenge for Jeanine and the MDA staff to find alternate technology to keep his brilliant mind connected to the world. Unfortunately, that was a challenge that was never successfully overcome at the time of his death this summer.

Tony’s widow and companion on his life journey wrote these words for his memorial service.

Before Tony was diagnosed with ALS in 1993, he and I were feeling restless in our marriage and with life in general. Tony wanted adventure. He longed to travel, having already lived in several African countries and in Eastern Europe by that time.

Perhaps a better phrase to use is that he needed in the core of his being to travel and to be learning new languages in order to stay vital. I secretly had been praying to God to make us a team. “Dear God, wouldn’t it be nice if we could somehow combine our talents and help each other at the same time instead of arguing all the time? We really could be a great team.” And so we hit on photojournalism. I had been getting into photography at the time and it was exhilarating to be learning a new creative art form.

Photojournalism sounded great! Tony, with his great love of languages and wonderful writing and storytelling skills, and me with the pictures — well, we could travel all over the world and sell our articles to magazines, and have our vacations paid for!

But then came the dragging foot of my jogger husband in May of ’93, one of the first symptoms of the devastating diagnosis of ALS. This horrifying news surely could not be the adventure we had felt coming?

The magnitude of the diagnosis was like a hurricane sweeping through and washing away all our possessions. At least with a hurricane you have flood insurance to get you by. What did we have? Well, we had love and we had hope. Hope that a cure would be found in time; hope for a miracle direct from God’s hand.

But, then, why continue to hope? Through the years, when he obviously wasn’t getting better, I was told more than once, by more than one person, “Face reality.”

We kept the news from his parents for a while. But his mom, who was struggling with cancer at the time, unknowingly passed onto us a bit of wisdom: “Without hope every day you might as well be dead all ready.”

We became a team because we loved each other. What else could we do? My man of the short temper and highly critical nature became in the afternoon of the diagnosis a man of infinite patience and humility, grateful for everything, laughing in the face of death.

“How long will you hope, Jeanine?” I was asked as the years went by, as bits of Tony slipped away and his final language became silence. “I’ll keep hoping for a miracle until he’s dead,” I’d say, and we tried every piece of technology available to keep him communicating and well.

But now in the past few days I’ve wondered and I’ve cried to him, what was the value of hope all that time, what did it gain us? Only to have no physical miracles occur?

And I’ve realized that it was hope that kept us alive, kept him alive. It gave him time to grow and change spiritually. It was hope and love that forged us as a team — that propelled us on our journey. It was our boat that carried us through this foreign land of illness, was the only thing often that kept us sane, and it was our insistence on love and hope that became ultimately the gift we unknowingly gave other people, so I’ve been told.

It was not our plan. We were just trying to live life. And so, we had no choice but to become a very visible sign to others of love and hope. I guess that was the plan, that was the adventure and it also became God’s gift to us because we got to meet and know and need all of you.

Now it is your job to take this life of Tony’s and remember it and use it and pass it on so that he continues to live. Thank you so much.

Jeanine Vitale

All of us at MDA will remember the qualities of brilliance, hope and inspiration Tony Vitale brought to our MDA family.

He called ALS “the safari you never thought you’d get around to taking, the next mountain you wanted to climb.” Of this journey called life, he wrote:

“This ticket is no guarantee you will reach your destination. Don’t waste a moment of your life. Use all of your skills, your body and your mind, and be glad that you can.”

In Tony’s spirit we’ll treat every moment as a precious opportunity to live life to the full, and that includes utilizing every skill, resource and ally at our disposal to help speed the day when ALS and related disorders will be irrevocably defeated.

With every best wish…

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