Valiant battle, silent killer

Fight with ALS ends for talented surgeon

Dianne Williamson

dwilliamson@telegram.com

T&G STAFF

He moved his lips three times before his heart gave out, a heart as big and brave as any on this Earth.

He wife believes he was telling her that he loved her. I’d say it’s a safe bet.

Thomas Simpson French, once a talented plastic surgeon whose movie-star smile could disarm the most nervous of patients, died just hours before a documentary film about his extraordinary life was to premiere Thursday in Woodstock, Vt. He died quickly and quietly, and his long-useless body was cremated three days later, and now his wife believes that he’s perfect again and that his spirit infuses everything she loves.

“I know he’s here with me,” Jacqueline French said yesterday. “His spirit is in this house. And in the end, it wasn’t that damned disease that got him. It wasn’t the ALS.”

Her husband called it The Beast, that damned disease that struck nine years ago when Tom French was strong and handsome and embarked on a wonderful career at Memorial Hospital in Worcester. The Beast announced its presence gradually, first as a tingling in his left hand and then with a twitch of his arm. By the time death came, The Beast had robbed him of all but the ability to blink his eyes and communicate with his wife by mouthing letters one at a time.

I wrote about Tom and Jacquie French in February 2004 and called their tale a love story, because that’s what it was. They married in 1983 and divorced 10 years later under the strain of his long hospital hours and their unsuccessful efforts to conceive a child. They remarried a year after he was diagnosed and bought a home in Barnard, Vt., which is where they were living when Jacquie got pregnant and produced the little girl who would give her father yet one more reason to conquer The Beast.

It’s an unrelenting adversary, ALS. One of the most devastating of all human diseases, it causes progressive paralysis and typically death within five to seven years of diagnosis. There is no cure; the only hope comes from what Dr. French would later describe in a book about the right to die, in which he wrote a chapter:

“ALS is a mind game — the ultimate mind game,” he wrote. “I told The Beast that although it had wreaked havoc on me physically, in no uncertain terms would it ever conquer my mind. I became more optimistic, not necessarily about being cured, but with accepting my co-host/parasite and setting limits. It was psychological warfare and I intended to win.”

Some might question the word “victor” as applied to someone with ALS, but that’s what Tom French was. When he could no longer breathe and swallow on his own, he had a tracheotomy and a feeding tube inserted in his stomach. When he couldn’t use his hands, he got a computer that uses infrared technology to track his eye movements. And as his body grew weaker, his spirit grew stronger and so, seemingly, did his capacity for inner peace and joy.

“Every night he loved sitting in the kitchen with me, watching me make dinner,” Jacquie said. “He couldn’t touch, he couldn’t taste, he couldn’t move. He didn’t have what we have — he had more. His inner self was so strong. Most of our life was about happiness and joy.”

Since his death, she said, she’s been sitting in Tom’s chair, which faces a window overlooking flowers, fields, trees and the rising sun. She tries to imagine what it felt like to sit in that chair, not moving or speaking, for days and years.

“All he had was his emotions and feelings,” she said. “He actually felt what the rest of us see. There were no words needed. I’m seeing the beauty through Tom’s eyes now, and that’s enough.”

Dr. Robert M. Quinlan was a professor of surgery at UMass and a mentor to Tom French in his early days as a surgeon, when he was renowned for his technical skills and empathy with patients. Later, the pair became good friends. When Dr. Quinlan learned of his death, he rushed to Vermont to be with Jacquie and her family.

“Tom learned not to be imprisoned by his body,” Dr. Quinlan said. “He enjoyed things around him far better than most of us do. And Jacquie and Tom were really in love. They accepted each other for what they were.”

Dr. Quinlan recalled a light moment when he visited the pair some years ago and was preparing to leave.

“I gave Tom a hug and told him I loved him,” Dr. Quinlan said. “I said, ‘I’d do anything for you, Tom, but I wouldn’t want to trade places with you’ … So he called Jacquie over to translate for him. She said, ‘He told me to tell you that he wouldn’t trade places with you, either.’ ”

So inspiring is this love story that it attracted the attention of a filmmaker who spent a year with the couple, capturing their challenges, routines and joys. “Mind Games — A Love Story” was set to premiere Thursday in Woodstock, and the couple was excited about the film and planning to attend.

Tom had spent a draining summer in Texas, undergoing experimental surgeries to repair a life-threatening dilation of his trachea. The couple flew home Aug. 30 and Tom was doing much better, she said. The day before he died, he was sitting outside in the sun, “sipping” his favorite beer through his feeding tube. Hours before the premiere, Jacquie had dressed her 44-year-old husband in a casual Hawaiian shirt and khakis. His parents had come to Vermont for the premiere.

“He was kind of half sleeping and I was massaging his shoulders,” Jacquie said. “He just opened his eyes and moved his mouth three times. I really believe he said, ‘I love you.’ Then he closed his eyes, and he was gone. I knew right away. His heart just stopped, very quietly.”

It’s odd what she misses now — the woosh-woosh of a ventilator that sounded like ocean waves lapping the shore. The radiant expression in his eyes when he looked at his wife and 7-year-old daughter, Lauren. The sight of him sitting in the kitchen, watching her cook food he would never enjoy.

Saturday, the people who loved Tom French will gather at a church in Woodstock to celebrate a life lived with such ineffable grace and courage. Later, Jacquie will place her husband’s ashes on a piano in the living room, near the place where they married a second time and pledged their undying love for each other, in sickness and in health.

“He’s not in that ALS-diseased body anymore,” she said softly. “He’s perfect now. And I feel complete, because I can carry him in my heart forever.”

Donations to help with the distribution of Tom’s film can be made to the ALS Association of Northern New England, c/o Longshot Productions, P.O. Box 875, Barnard, Vt., 05031.

Contact Dianne Williamson at dwilliamson@telegram.com.