Founded in 2002, For Grace is inspired by the true-life story of our founder and spokesperson, Cynthia Toussaint. A former ballerina, Ms. Toussaint has suffered, after a ballet injury, with Complex Regional Pain Syndrome for 35 years. She now has Fibromyalgia and other over-lapping, auto-immune conditions.
Today, from her wheelchair, Ms. Toussaint champions awareness of the gender bias toward women in pain worldwide. Since her CRPS diagnosis in 1995, she remains active in the arenas of public speaking, writing, mass media (TV, newspaper, magazine, radio, Internet) and political advocacy for those who do not have a voice. She was the impetus behind the New York Times and Los Angeles Times first articles detailing her disease. Also, she spearheaded the first-ever California Senate informational hearings about CRPS and the gender disparity toward women who experience pain.
Ms. Toussaint has been featured on The Discovery Channel, ABC World News with Diane Sawyer, NBC’s The Patient Channel, PBS, Discovery Health, TLC, Home and Health Worldwide and in AARP The Magazine, Newsweek, Woman’s Day, AOL.com’s homepage and on Maria Shriver’s Women’s Conference and Architects of Change websites, among others.
Her many speaking engagements include the National Institutes of Health and Capitol Hill.
She is the author of Battle for Grace: A Memoir of Pain, Redemption and Impossible Love. In March 2013, the book launched on Maria Shriver’s Architects of Change website!
My journey as a woman in pain began when I was a 21-year-old ballerina. Up to that time, my life had been a love affair with performing and I knew I would have a long career in the bright lights of show business.
Then one day I suffered a ballet injury that changed my life forever.
That simple hamstring tear quickly turned into the most excruciating, burning pain I had ever felt. My leg turned purple and became swollen and cold while the torturous pain grew worse.
Compounding my horror, my doctors ignored my symptoms. For the next 13 years, they told me my condition was “all in my head”, dismissively diagnosing me with “stage fright” and “tendonitis from Mars.” One doctor said that because I was only a woman, it didn’t matter – I should just shoot myself in the head.
During these nightmarish years, my glamorous career slipped away, my family and friends left (some would later return) and I battled depression and suicidal ideology. I spent the next decade of my life bedridden. For five of those years I was unable to speak while the disease with no name spread throughout my entire body and ravaged my vocal chords.
My shining star was my partner John who stayed by me, whispering support all along the way. His love lifted me through the worst of times, his steady strength soothed my wounds.
Finally, I found a pain management specialist who diagnosed me with Complex Regional Pain Syndrome (and later Fibromyalgia and Chronic Fatigue Syndrome.) Though I quickly improved, my condition had progressed too far unchecked for a cure, leaving me in constant physical pain in need of a wheelchair. But at last I was believed and my pain had a name. With this information, I had a new focus.
My future is now filled with the fight and ambition to bring the plight of women in pain out of the dark and help all those who suffer needlessly due to bias and ignorance. I never again want what happened to me to happen to another. That is my “dream of never again.”