"I was with George [Clooney] the last night I was healthy."
On Thursday night, model and actress Karen Duffy celebrated the publication of her second book, Backbone: Living with Chronic Pain without Turning into One, with a roomful of celebrities and famous authors — and a tequila fountain from long-time friend George Clooney.
“I was with George the last night I was healthy and, literally, this illness hit me like a bus,” the 55-year-old said in an exclusive interview with PEOPLE.
She discussed writing about her life of chronic pain (she’s suffered from sarcoidosis for two decades) and the support she’s received from the fellow actor, who makes an appearance in the book. Since Clooney is on “paternity leave,” he sent the tequila fountain as a gift to the book launch, which was held at the Society of Illustrators in New York City.
“My friend Karen Duffy, who lives with unimaginable pain, has taught me so much; that my complaints are the most ridiculous in the world,” George Clooney wrote as a blurb for the book.
“Unimaginable” is an apt word for the pain Duffy suffers. A former DJ for MTV, she was in her early 30s when she was diagnosed with the rare disease, which impacts her brain and central nervous system and causes horrific pain.
“When the pain is at its worst, my head is tilted to the right like a broken Pez dispenser,” she writes, “I cannot tolerate the lightest touch; even wind will sting my neck.”
For Duffy, who can usually only get up three days a week, writing has served as a form of therapy. She hopes that her words will help the many others who also deal with chronic pain.
“There’s an enormous population of 115 million Americans who live in chronic pain. There’s a lot of shame attached to it. Pain actually destroys language. When you’re in pain, you’re like ugh … so I’m trying to shine a light,” Duffy explained. “I’m essentially immune to feeling shame and embarrassment. At this point in my life I’ve grown a mustache, I’ve lost my hair, I’ve had a hunchback.”
She added: “I wanted to write a book about the subject of pain that was not a painful read. I wanted to [show] the gallows humor and the joy.”
Her friend, actress Aida Turturro, is in awe of her humor and strength.
“She is a beautiful soul,” Turturro said at the launch. “She has faith and she does not allow herself to look at the bad. She looks at the good and she puts her energy in giving to others, rather than living in the sadness and the hardships that she has.”
Beyond Turturro, Carole Radziwell, Fern Mallis and a host of other friends attended the launch. (Famous friends also make appearances in the book, from Chris Farley, who helped her host Bingo Night at a nursing home, to Bill Murray, who contributed to the “The Duffy/Murray Pain Scale.”). Duffy’s husband, John Lambros, their 14-year-old son, Jack, and author Ed Conlon introduced her to the stage.
For Duffy, being surrounded by her family and friends has been an important form of “therapy” in the 20 years since her diagnosis. Friends have also encouraged some important life decisions.
In her interview with PEOPLE, Duffy revealed that Clooney was the one who encouraged her and her husband to have a child, which was a difficult process because of all the procedures she’d undergone to fight the disease.
“[George] was the one who really helped us find the doctor so we could have a kid,” she said. “He was like, ‘I want to see your face on somebody else.'”
She said that Clooney “is a huge figure” in her son’s life and recently gave the family their first dog.
“So I’m an animal agnostic and George has two Cocker Spaniels. He was like, ‘Duff I’m going to break you.'” she said. “And so he found us this unbelievable Cocker Spaniel.”
She added: “There’s a reason why converts are so annoying because now I’m quoting, ‘Until you have an animal in your life, part of your soul remains unawakened.’ I’ve completely lost my mind.”
Duffy and her husband are happy to see the Clooneys expand their family and experience the same joy they’ve felt raising Jack.
Clooney is “so chill,” as a dad to twins Ella and Alexander, Duffy said.
“It’s just so beautiful to see [George and Amal] experience this,” she continued. “It was the right woman at the right time. I’m really thrilled for them. He’s just in awe of his amazing wife and it’s really beautiful.”
Backbone is out now.