Patient's tenacity honored

For much of her life, the woman with the bright smile and lone braid of blond hair lived breath to breath.

At age 9, a spinal cord tumor left Susie Kropoff paralyzed from the chin down and confined to an iron lung, a cylinder of steel that looked like a coffin. Without the big machine pumping air into her lungs, she would suffocate.

Her life expectancy, like that of many quadriplegics in the 1960s who had trouble breathing, never stretched more than a few years. At first, doctors told her she would be lucky to see her 15th birthday. At 17, they told her she would not live beyond 20. When she reached 21, they said she had about six months left.

A machine malfunction, a careless nurse, a bedsore -- any of these could have easily taken her life. In the end, Kropoff surpassed all the doctors' expectations and survived until last Christmas Eve, when she died of a blood infection.

She had made it to 50.

The Norwell native became known as the ambassador for New England Sinai Rehabilitation Center in Stoughton, where she lived more than 25 years, the center's most enduring resident. Her life will be honored today at the center in a memorial ceremony with patients, doctors, and staff.

''People like Susie used to die right away because they couldn't breathe," said Dr. Bob Brown, a pulmonary specialist at Massachusetts General Hospital who treated Kropoff and had studied her case since the '70s. ''The risk of death from infection, pneumonia, and septicemia [blood infections] are still enormous. At the time, people would have said there was no way she would have survived to 50, but that's changing now."

She was one of the nation's 250,000 patients with spinal cord injuries who have seen their lives prolonged by technology and improvements in healthcare. Still, Kropoff's longevity was an anomaly of good fortune and demonstrated her resolve.

''It's a testament to her will to survive; it takes incredible willpower," said Paul Tobin, a quadriplegic who is deputy executive director of the United Spinal Association, based in Jackson Heights, N.Y., an advocacy group for people with spinal cord injuries. ''If you think about how she lived, it's amazing. I never heard of someone who lived that long."

Kropoff survived far longer than, for example, Christopher Reeve, the ''Superman" actor who fell off a horse in 1995 and suffered a severe spinal cord injury. Reeve died last October of cardiac arrest, a complication from a bedsore. ''Reeve had the best medical care and access to every medical advance," Tobin said. ''That shows how much [Kropoff's] life was a remarkable feat."

Kropoff had subsisted on government assistance and often sold candles to raise money for her care. But like Reeve, she spent much of her time trying to advance spinal cord research.

When not raising money or leading legislators on tours of New England Sinai from her chin-controlled wheelchair, as she once did for Senator Edward M. Kennedy of Massachusetts, she was a star subject for researchers. Over the years, Kropoff participated in about 10 published studies and helped researchers working to invent machines such as the MIT Unicorn, which allows quadriplegics to write by sipping and puffing into a series of plastic tubes that signal a microcomputer.

''She contributed a huge amount to science," said Bob Banzett, an associate professor at the Harvard School of Public Health and a specialist in respiratory physiology who recently honored Kropoff at a seminar titled, ''What I Learned About Breathing From Someone Who Can't."

Her participation, Banzett and other researchers said, helped advance knowledge about how the diaphragm works, how quadriplegics feel breathing and experience shortness of breath, and how to improve speech for people living through ventilators.

Jenny Hoight, a professor of speech at the University of Arizona who met Kropoff in 1989 and often exchanged e-mails with her, said: ''Sue inspired our research and really helped us feel what it was like. . . . She made an immeasurable contribution to science and to the clinical care of ventilator users all over the world."

As much as she stood out as a research subject, most remember Kropoff for her warmth and will to live. She made countless friends, who took her to the beach, to the theater, to museums. She went shopping and out to eat. She learned how to use the Internet, read copiously, attended church, and maneuvered her wheelchair outside the hospital, where she would sit for hours watching the sun set or the sparrows and squirrels dart by. When her mother required professional care, Kropoff visited nursing homes until she found the right one.

''She was a life-altering type of person," said Hope Raymond, a nurse who met Kropoff in the intensive-care unit at Brigham and Women's Hospital in 1975 and became a close friend. ''She regarded herself as an ordinary person who lived an extraordinary life, but she was seen by others as an extraordinary person who lived an extraordinary life."

Using her special computer, Kropoff wrote a memoir, in which she describes how doctors found a tumor in her spine, how she went from feeling relief that adults no longer thought she was making up her muscle weakness to the fear of waking up in an iron lung, and the loneliness of living so differently from all her friends.

''After a couple of years at home, my former friends stopped coming to see me," she wrote. ''It seemed nobody knew how lonely and frightened I was."

Although she feared death, she learned to accept her plight.

In a poem on her 50th birthday, she wrote: ''Throughout these 40 years of quadriplegia, I have been asked what I would have 'been' if I hadn't been paralyzed. . . . Although during my first 20 years I experienced a lot of anger, fear, and was sometimes suicidal, I never blamed God . . . For reasons neither understood nor chosen by me, this is the ideal life, for me."

A month later, after a birthday party at the hospital, she died. The halls of the hospital, where Kropoff arrived the same year it opened, now feel very different for those who live and work there.

''If I was happy, I looked for Sue; if I was sad, she helped me -- she was my crutch," said Kathy McCarthy, a patient who was one of Kropoff's closest friends. ''It's very empty here without her."