(NEW YORK) — In many respects, Cynthia Toussaint is unlucky. She was a ballerina who had a role in the show Fame. Then she was brought down by a then-nameless chronic pain disorder that left her mute and in a wheelchair for years.
But in one respect, she is lucky. She is one of the few women she knows whose partner, John Garrett, didn’t leave her during years in pain. He stayed with her during the 13 years doctors told her the pain was in her head, and the 17 more as she gradually found her voice and started lending it to other women with conditions like complex regional pain syndrome (CRPS) and fibromyalgia.
“He said he never doubted me, but he did not understand it,” Toussaint said.
She said Garrett has taken care of her and their home since they were 21 or 22 years old. Now, they’re 52.
“To not leave is amazing,” she said.
Garrett said he met Toussaint in 1982 when they were 19-year-olds at the University of California, Irvine and planned to move to Los Angeles to pursue careers in entertainment. Then Toussaint suffered a ballet injury that went from “bad to worse to catastrophic.”
The pain from the injury to her right leg spread through her entire body, which is typical of CRPS, though she did not know it at the time. CRPS has no known cause, but doctors suspect it is either a damaged nervous system response or an immune system response. The young couple wouldn’t get a diagnosis until 1995.
“She was bedridden, housebound, wheelchair bound,” Garrett said. “Everything was being turned upside down and inside out, and you don’t really know what’s going on.”
And for years, he tried and failed to sleep in bed next to Toussaint at night as she writhed in pain.
“There’s no manual, no textbook on how to take on something like this early in your life,” he said, noting that most people who care for elderly parents are middle-aged. “I had fantasies of fleeing, of getting the hell out of here. I’d get in a Honda Civic and head out on the I-15 and just keep going.”
Garrett worked odd hours to bring in money and still be around to take care of her. His acting career would have to wait.
Toussaint compared caring for women in pain to caring for an Alzheimer’s patient: “We don’t get better, and we don’t die. It’s just the truth.”
But Garrett stayed because he loved her, and what he really wanted was to make her feel better. He made her meals, helped her dress and even helped her go to the bathroom when things were at their worst.
Toussaint’s CRPS diagnosis was the real turning point, he said. And when they founded For Grace, a nonprofit to educate and help women in chronic pain, he became its executive director.
They’re about to have their fifth annual Women in Pain conference on Friday, and they have a bill on California Gov. Jerry Brown’s desk to ensure effective pain treatment for patients.
There are pitfalls of being a caregiver, but he has stayed with Toussaint for more than three decades. They’ll celebrate their 32nd anniversary on Sept. 15.
“Sometimes, you lose yourself. You lose your identity, giving yourself over to caregiving for somebody,” he said, adding that it’s important for him to reconnect with his desires and goals when he can. “If you truly love someone, you’ll go through hell and high water to help them in any way you can.”
Copyright 2012 ABC News Radio
Jamiel Lynch and Debra Goldschmidt, CNN
Susan Scutti, CNN
Magdala Louissaint, KPVI