“That was the last day that I lived without chronic pain,” says Karen Duffy, remembering the September 1995 Emmys ceremony she attended with her good friend George Clooney. “It was the next day that I became symptomatic with sarcoidosis. That photo marks the end of my healthy life with one of the most charming and hilarious gentlemen. Talk about going out with a bang!”
The next morning, the former MTV VJ better known as “Duff” woke up with an excruciating head and neck ache, she tells PEOPLE, “like an electric eel swimming up my spinal column.” She flew back to New York City where her doctor discovered an inoperable “mostaccioli-sized” lesion pressing against her brain stem and spinal cord that had crushed her nerves, causing searing pain. Nine months later she was diagnosed with sarcoidosis of the central nervous system, a rare disease which causes inflamed cells to become granular and attack soft tissue. Says Duff, “I’ve been blessed with lousy health and a great life.”
She shares the story of how she went from a vibrant 34 year old traveling the globe as an MTV VJ to a shockingly sick one, living with chronic pain at times so intense she couldn’t withstand the pressure of a cool breeze on her neck, which she talks about in her new book Wise Up: Irreverent Enlightenment from a Mother Who’s Been Through It.
Written in the form of letters to her 18-year-old son Jack, a star high school hockey player, it’s a mix of life lessons, funny stories — a few featuring Clooney, along with a dose of Stoic philosophy of the ancient Greeks. “The Stoics talk a lot about what we can control and what we can’t — and how to appreciate each day,” she says. “They lit up my life like a bottle rocket.”
At times her health was so precarious she spent weeks in the hospital and she once had her last rites read when her doctors feared her respiratory system was in danger of shutting down.
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When she gathered last May with her closest friends for her 60th birthday, it was more than just celebrating “entry level old age,” as she puts it. “I just can’t believe I got here. There were times I didn’t think I’d make it. I feel like this is all a bonus round.”
While there is no cure for sarcoidosis, an inflammatory disease of unknown origin that affects some 200,000 people in the US, she manages the pain with a treatment program of steroids, chemotherapy, morphine and a pain patch. Over the years she’s lost some mobility and has numbness in her hands and her feet. “It feels like you have fluffy boots all the time,” she says. But she has enough feeling in a few of her fingers to hold a pen and write, and says, “I’m inspired to do as much as I can with what I have.”
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That means co-producing two films, the documentary New Worlds featuring her pal Bill Murray and the upcoming Zac Efron feature The World’s Greatest Beer Run Everas well as working as a patient advocate for people living with chronic pain, and giving out her signature candy necklaces which she orders “by the hundreds.”
Still, your mobility may further deteriorate. “I’ve already had the scariest thing that pretty much can happen, happen,” she says. “I know there is trouble ahead. I don’t know what kind of trouble but I’m not afraid because I’m grateful for my life.”
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“Living with chronic pain has taught me to jam as many happy moments as I can into the day,” explains Duff, who’s known for her contagious optimism. Some of which has rubbed off on her son Jack Lambros. “I’ve learned so much from her,” says Jack. “To be aware of what we can do better and to always have a positive outlook which she always has even when stuff doesn’t always go our way.”
As Duff sees it, “I always try to think what is the upside to having your life turned upside down? Maybe it’s to appreciate every moment — and have a sense of deeper compassion for people living with chronic pain.”
“My body may be breaking down but my spirit is ginning up. I wanted to express gratitude for my life.”
For more on Karen Duffy check out this week’s issue of PEOPLE, on newsstands Friday.