There is no underestimating the damage done to the spirit by chronic raging physical pain that is, for good reason, so often tied to depression if not the desire to end life. Living with the torment of relentless excruciating pain is an indescribable horror made worse by living it in isolation while being ignored, mocked, consigned to the dustbin of the demented, and misdiagnosed by doctors. And, so it was with Cynthia Toussaint, once a working professional ballerina and actress who was struck one day, quite out of the blue, at the age of 21 by what used to be pain that had no name but that we now know as CRPS. The final diagnosis was a horror of its own but had a silver lining; doctors could no longer label her as crazy, ignore her or mock her for her misery.
To hear to Cynthia talk about this ordeal with CRPS and the medical community and how she turned her own pain into a well-lit path for others is to see what makes heroes. For years she suffered alone while the pain took over her life and forced her into the wheelchair she has used for the past 34 years. But Cynthia was never one to topple easily, and through the unchartable misery and fields of torment she endured, she shifted from one cluster of abilities to another. You can see the joy in Cynthia’s eyes and the determination in her every step forward. She is an innately cheerful, grounded and beautiful woman who knew as a girl she was meant to be onstage. Her stage is not the one she originally envisioned for herself, but what a powerful platform it is.
Although she lost her theater career, her voice, her mobility, most of her family and friends, and, her credibility, she did not lose everything. She retained her unconquerable spirit and the strength of a lion that ultimately led her to found For Grace, a world that brought together women who suffer CRPS in order to promote better care and wellness for women in pain. Credibility regained!
And, today there is cheering news about Cynthia’s 9th Annual Women in Pain Conference with a focus as perfectly described in the title of the event “Pain Takes a Vacation; Actions and Strategies that Get Us Away.” The conference, coming right up, will be held at the California Endowment’s Center for Healthy Communities in downtown Los Angeles from 8:30 am to 4 pm on Friday, September 23rd.. The good news is the optimism. Because Cynthia has never liked pain conferences for their tendency to be stuffy and too academic for the people suffering, she has planned a day to focus on self management and empowerment that will focus on self-management that takes us away from the pain (e.g. sleep, creative arts, sex, travel and laughter. Recognizing that many women in pain cannot afford the $25 ticket, Cynthia is offering scholarships for women in pain and their caregivers by request. The conference is going Hawaiian this year with tiki-bar, hula dancers, costumes, and the limbo, in short, a day of looking chronic misery right in the eye and asserting the joyful possibilities of life even in the face of pain. Cynthia was recently contacted by Annie, a woman just diagnosed with CRPS, who was crying into the phone as she said, “Cynthia, I read your book and it took me from suicide to hope. The work at For Grace brought sunshine into my room.”
This is what the work is about for Cynthia, the connections that let strength replace despair when despair seems to be the center of the universe. And, yes, of course she has room in her heart not only for the women she champions but for a moving love letter as well.