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Janet Marzilli, 74; formed group to aid people with MS

JANET MARZILLI JANET MARZILLI

In 1965, a few years after she began experiencing seemingly incongruous symptoms, Janet Marzilli received a frightening diagnosis from her doctor: She had multiple sclerosis, a disease of the central nervous system.

"He gave us some good advice," her husband, Joseph, said of the physician. "He said, 'Do the best you can: Don't fight it, cope with it. Find a way of living with it. And that was Janet's nature - nothing would keep her down."

With five children to bring up, Mrs. Marzilli soon found herself negotiating life from a wheelchair. Much of the money raised by multiple sclerosis support organizations at the time went toward research, so she and her husband formed their own group to address other needs.

For years, the Association to Overcome Multiple Sclerosis, which went by its acronym ATOMS, put on seminars to teach others with the illness to live a fuller life. Mrs. Marzilli and her husband also helped organize outings to places such as Cape Cod for people in wheelchairs long before laws or most public officials promoted accessibility.

Mrs. Marzilli, who had lived in Arlington for decades, died Aug. 22 in Cape Cod Hospital of complications from multiple sclerosis. She was 74 and had lived the past several years in Marstons Mills.

"They rented school buses and filled them for day trips, rented motel rooms at the Cape and filled them for beach vacations," her son David of Rocky Hill, Conn., wrote of his parents' organization in a eulogy he planned to deliver at her funeral service yesterday. "They had barbecues on lawns and carried those in wheelchairs close to where they could see their children at play. At one resort, an old-timer went swimming for the first time in over 20 years. Thanks to Mom's persistence, they were no longer shut-ins."

Born in Jamaica Plain, Janet Meikle grew up in Medford, where her mother died when she was 6. While her father worked in a bank, she was brought up mostly by a woman who lived in the other part of their two-family building.

She was 23 and staying in a cottage on Cape Cod when she met Joseph Marzilli, who quickly made her summer home the first stop on his daily bread-delivery route. They married soon after and planned a large family.

During each pregnancy, Mrs. Marzilli began experiencing symptoms of what she later learned was multiple sclerosis. Diagnostic techniques were less sophisticated half a century ago. The most recent methods, known as the McDonald Criteria, went into use six years ago and include magnetic resonance imaging of the brain.

By 1962, her husband said, "it was clear she had something that was bothering her - she had some condition or disease that could not be dismissed."

In December 1964, a doctor at Boston City Hospital told Mrs. Marzilli she had multiple sclerosis.

Several weeks after the diagnosis, Mrs. Marzilli fell down some stairs and it became apparent she would need assistance to get around. She initially resisted using a wheelchair, then turned it into a passport to a life nearly as active as the one she had before.

"This was a woman with a family to raise, a life to live, and MS be damned, she was not going to let it get in her way," her son wrote. "She ran a tight ship and was capable of amazing domestic feats from her chair. She cleaned with the vacuum in tow, hung the laundry on the line, cooked our meals, and oversaw a smoothly running household of seven - all from the perch of her chair."

Her husband recalled returning from work and being assigned to finish a task she had begun - such as the time she painted a room as high up as possible.

"From the wheelchair she would do things that some people wouldn't do standing," he said. "She would paint the part of the woodwork she could reach from her wheelchair. When I'd come home, and she'd hand me the paint brush and say, 'Now it's your turn.' "

Recognizing a need for seminars to help people with the illness accomplish daily tasks others take for granted, she and her husband joined with others around 1970 to form the Association to Overcome Multiple Sclerosis. Mrs. Marzilli had no use for the words "victim" or "patient" to describe those with her affliction. She preferred the term MSers.

"My wife and I knew more MSers than the medical community," her husband said.

They invited physicians and specialists to speak on topics such as bladder control, sexual function, mobility, and how to set up a kitchen or apartment to accommodate a wheelchair. And they found that the speakers asked to return again and again to meet with the group - "especially the epidemiologists," he said.

One weekend while visiting Cape Cod, her husband recalled, "Janet said, 'Wouldn't it be nice to get MSers down here?' Next thing you know, we've got 40 rooms booked."

Eventually, the National Multiple Sclerosis Society and its New England chapter started running enough outreach programs so that the Marzillis and their organization no longer needed to run seminars. Meanwhile, Mrs. Marzilli helped raise more than $200,000 through the years for the MS Society in contributions she made, fund-raising, and persuading others to donate, her husband said.

"When my father asked her minutes before she died the same question he asked her daily during her decades-long illness, 'How do you feel?' her barely audible response was the same as it's always been, 'I feel fine,' " her son wrote. "She taught us all how to be fine in the face of adversity."

In addition to her husband, Joseph, and son David, Mrs. Marzilli leaves two other sons, Jim of Boston and Bill of Marstons Mills; two daughters, Jean of Boston and Carol of Belmont; two grandsons; and a granddaughter.

The service was held yesterday.

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