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Thomas Farragher

Jan Cellucci keeps Paul Cellucci’s memory alive by fighting his killer, ALS

Jan Cellucci is raising money to battle ALS, the disease her husband, Paul Cellucci, died of in 2013.
Jan Cellucci is raising money to battle ALS, the disease her husband, Paul Cellucci, died of in 2013.Erin Clark for The Boston Globe

HUDSON — The simple blue book — a slender volume marbled with wisdom — was always within arm’s reach.

He had it on his nightstand at home when he was governor. It was on his office desk in Ottawa when he was ambassador.

It didn’t matter that the author was a storied figure from the political party of which he was not a member.

Paul Cellucci didn’t care about that.

He cared about the words. He cared about the message. For a man whose parenting skills could be boiled down to two words — “be nice’’ — it captured the spirit of what public service meant to him.


“Each time a man stands up for an ideal, or acts to improve the lot of others, or strikes out against injustice, he sends forth a tiny ripple of hope, and crossing each other from a million different centers of energy and daring, those ripples build a current that can sweep down the mightiest walls of oppression and resistance.’’

Those words, delivered by Robert F. Kennedy at the University of Cape Town in 1966, were highlighted in blue ink by Cellucci, the former Massachusetts governor, who never lost an election and was waging his final campaign against a cruel disease when he died in 2013 from amyotrophic lateral sclerosis, or ALS.

“I think those quotations are a window into his own thinking,’’ his wife, Jan Cellucci, told me the other day as we escaped a punishing sun in the shade of a towering tree at a downtown park in his hometown here.

“I miss him more each day as the world becomes more calamitous at the national and international level. I try to anticipate what Paul would say. He had a moral compass.’’

Jan Cellucci has a moral compass of her own. It’s finely tuned. It’s in regular use. And its true north is a genuine decency that Jan and Paul Cellucci shaped together over the course of their 41-year marriage, a partnership of which she was the original architect.


“I audaciously called him and asked him to be my escort for my junior prom,’’ said Jan Cellucci, who turns 68 on Sunday. “My mom was appalled. This is 1966.’’

In 1971, when her name was Janet Garnett and she was a junior at Regis College, she spent a year studying in Bath, England, where Paul Cellucci visited her for three weeks.

“Jan returned to dorm life in Massachusetts after living in a beautiful apartment in Bath,’’ Cellucci wrote in his 2005 memoir “Unquiet Diplomacy.’’

“After her first night back at Regis College, she told me, ‘I don’t like living in the dormitory,’ so I said, ‘Let’s get married.’ She said yes.’’

Two months later, they were husband and wife.

What followed was his storied political career, her life as a librarian where she built collections at schools large and small, and their lives together as parents and grandparents.

Election after election, he always won. Board of selectmen. State representative. State senator. Lieutenant governor. And, in 1998, governor.

“Every election night, I would tease him,’’ she said. “I said one of us is going to be very happy tonight. If he won, he’d be very happy. If he didn’t win, I wouldn’t be happy, but I wouldn’t be unhappy. His success in that environment, our family and our happiness and our goals and values were not dependent on him in that public position. That wasn’t who we were.’’


The first inkling that something was wrong with Paul Cellucci occurred in unspectacular fashion. He was at home, sitting on the sofa. He was reading the Globe. And his hands were shaking.

“You pray that it’s [muscular dystrophy]. You pray that it’s Parkinson’s because ALS is the worst diagnosis at this point,’’ Jan Cellucci said. “But I’m a librarian so I research and research. And I’m coming to conclusions fairly quickly.’’

What followed was an appointment at UMass Memorial Medical Center in Worcester with Dr. Robert H. Brown Jr., a leading ALS researcher, and confirmation of the diagnosis of a deadly disease that attacks nerve cells that control voluntary muscle movement.

“Paul interrupted gently,’’ Jan recalled. “And said, ‘Dr. Brown, you know I’m a former governor. I signed legislation to combine Memorial Health with the University of Massachusetts Medical School and require that it be a research university. So if there’s anything that I can do to bring attention to your program, to raise money, to raise awareness, let me know.’ ’’

Unlike her husband, Jan Cellucci “raged at the moon’’ after the ALS diagnosis. Cellucci himself did something else: He began to wage war with the disease that would kill him.

She remembers the ride home this way: “When we finally got outside in a private place, in the car, I was like: ‘Paul, we have been in public life for 35 years. You now have a terminal diagnosis and you are proposing to go back fund-raising and being in the public sphere while you are dying?’ And he said, ‘Yes, another campaign.’ ’’


Just hours before Paul Cellucci’s part in that campaign ended at age 65 in June 2013, he was visited by old friends, Andrew Card and his wife, Kathleene, a Methodist minister. Andy Card served in the state House of Representatives from 1975 to 1983 and became secretary of transportation and, later, chief of staff in George W. Bush’s White House.

“We knelt down next to Paul and Andy said an incredibly powerful prayer,’’ Jan Cellucci recalled. “And then he changed his tone a little bit and he said, ‘Actually, Paul, I would like to correct your record. You have won 13 consecutive campaigns. Your record is 13 and 0. But actually it’s 14 and 0. You have created the UMass ALS Cellucci Fund. You have raised awareness of the medical school. You have beat ALS. You’re 14 and 0.’

“The look on Paul’s face was one that I will keep in my heart and my mind forever.’’

Dr. Brown has devoted his career to consigning this cruel disease to the history books, work that has made him an internationally known and groundbreaking ALS researcher.

He said from the first moment he began to care for Paul Cellucci, it was clear he and his wife were partners in an effort to create a $10 million endowment. They’re halfway there. And Jan Cellucci isn’t finished yet.


“She’s been tireless in essentially deflecting attention from her to the Cellucci Fund and to ALS,’’ Brown said. “She’s very driven and focused and very modest. I think you can say self-effacing in the sense that her interest is not in anything that glorifies herself but in the cause itself. She’s been terrific.’’

So Jan Cellucci’s last campaign continues without the man she once asked to the junior prom. The man who never lost a campaign. The guy who kept a slender blue book on his nightstand.

The one in which he highlighted these words in blue ink:

“It is from numberless diverse acts of courage and belief that human history is shaped.’’

Thomas Farragher is a Globe columnist. He can reached at thomas.farragher@globe.com.