Marian Sonnenfeld might very well have been the smartest bear in the woods.
She graduated from MIT (the Massachusetts Institute of Technology). She was chief of mammography at a major Boston teaching hospital. She took art and craft classes and attended concerts and plays.
She got sick 21 years ago.
Today, suffering from all manner of cognitive issues, she says, “It’s really disturbing not to be able to think.”
The severe, debilitating fatigue and pain have profoundly altered her life.
Sonnenfeld’s illness onset, like many others’, was sudden. “It came along with a flu-like illness that several people in my family got. Everyone else got well and I got left with this,” she explains. “It started with a sore throat and blossomed into a full-blown flu. One week later, I was just as sick. Two weeks later, I was still just as sick. Taking a shower became the major activity of my day, and I had to lean against the shower wall just to get through it.”
She couldn’t go back to work for three months; she returned on a part-time basis for six months before realizing that she could no longer handle the workload that a healthy person could, that she once could. “It was a career, not just a job,” Sonnenfeld says. She quit working altogether in 1991.
She was interviewed for a segment on CFS on PBS’s The MacNeil/Lehrer NewsHour in 1992 and says she’s sicker now than she was then.
“I’m homebound more than 50 percent of the time. Sometimes I can drive to a destination five or 10 minutes away; sometimes, I need a ride to a destination five or 10 minutes away,” says Sonnenfeld. “Being homebound so much, I’m much more isolated. I’m lucky if I can get to a doctor’s appointment or run a brief errand. I frequently can’t. I have to be very careful about what I do, since both physical and mental overexertion make the debilitating fatigue, brain fog and pain much worse.
“Friendships that were there at the beginning have fallen away. People’s lives are moving along, and if you’re not moving with them, they go away. You do the best you can, but CFS makes for a very constricted life. I’m grateful for the Internet and for the webinars the Association has given in the last few years. It’s allowed me to feel like I’m a participant in some things, even though I’m unable physically to be there,” she continues.
She joined the Association early in her illness in the search for connections to information, to other people who were experiencing what she was experiencing, to ways not to feel so alone and to the lobbying that was so important to her. “The Association was – and still is – looking for more visibility for the illness and more research,” Sonnenfeld says.
That’s what appeals to her about The Catalyst Fund. “This is money that is specifically directed toward research and directed toward changing the understanding of the illness. If we can find clear evidence of the mechanism of CFS, then we’ll have clear evidence of organic, physiological affects in the body that will lead to better treatments,” she says.
Sonnenfeld’s support of the Catalyst Fund is supremely individual: “CFS has taken so much of the last 21 years of my life, years when I would have been a productive, contributing member of our society. I have a very vested interest in feeling better! This is the way the money is going to be raised. There’s not going to be a sexy bike ride or a marathon – we’re all lying on our sofas!”
She continues, “There’s not a disease whose patients aren’t out there raising funds. The funding from the government is so below the level that’s needed, that in order for the research to be done, the money needs to come from the people whose lives are at stake. If I, as a patient, don’t support it, who will?”
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