New York, NY
Each player must accept the cards life deals him or her: but once they are in hand, he or she alone must decide how to play the cards in order to win the game. Voltaire, French philosopher/author
Linda Cohen, lifelong New Yorker and decades-long CFS sufferer, knows about being alone, and about deciding how to play to win.
“When you’re chronically ill, you have to live your own lifestyle,” she says. “You have to be chronically self-absorbed to survive. I’m alone; I chose it. One reason I’ve been alone is because of this illness, because it’s very challenging.”
Struck by encephalitis at age 11, Cohen has struggled with her health her whole life. She was diagnosed with CFS nearly 20 years ago, when she began to suffer cognitive effects. “It got so bad, I couldn’t understand English, which is my only language, until I had four or five strong cups of tea,” she explains. “I went to the doctor and I got diagnosed with this and he said I’d only be sick for a year. It’s had a dramatic affect on my life. I had to quit work as a headhunter and I could never go back. I’m living a half-life. I can’t do anything and I lay around. When I was young, I used to go to Studio 54 and they’d let me in without standing in the line around the block!”
She found some relief from her symptoms in her mid-30s, when she visited an allergist who ran cytotoxic blood testing, declared her “the most allergic person” he’d seen in his career and put her on a regimen of vitamins. A bout of extreme appendicitis later nearly killed Cohen and turned her hair white almost overnight.
Cohen’s doctor suggested that she join a support group as soon as he diagnosed her. “It was very helpful at first, because you knew you weren’t crazy,” she says. “But I learned very quickly that no one gets better. It got to be very depressing.” She joined and began supporting the Association early on in her illness.
“I decided to give because I don’t want this to happen to anyone else and more people are coming down with it,” says Cohen. “To me, this is the most heartbreaking of diseases. Without your health, you can’t have anything important, and people don’t understand that.”
The Catalyst Fund appeals to her “because it’s the only way we’re going to find out what causes CFS, what makes us feel better and what cures it. I’m hoping they find a cure and a cause! The worst thing that can happen to people is the loss of health.”
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