Chronic Pain Is More Prevalent than Thought. Cynthia Toussiant & John Garrett Share 411
This is a very hard topic to bring up. Yet it needs and requires visibility. I took on this particular interview because I know people with chronic pain issues. It’s a situation where the average person’s life is turned upside down and tosses it on the ground as if it didn’t matter. Chronic pain can come about due to an injury, post-op complication or even an impaired immune system. Often it’s a complication of a “Chinese menu” of problems that build upon the original and just complicate matters till the person is either suicidal or gives up. The person that whines and sees their life as a victim just might have some genuine reason to talk about it that way. Often people seek to get help because those around them have just ignored them or walked away. A person with chronic pain generally wants to be accepted and understood along with finding a doctor who actually wants to find out what is wrong and treat it.
The opportunity to do this interview was one I didn’t want to pass up. I felt that it was crucial to share this information and this very potent interview with Cynthia Toussiant and John Garrett .
This story is thick with nuances. I am not even going to attempt to write what I think happened. I will let them speak for themselves. Their mission it so enlighten the general population to the ills of chronic pain and how there should be more ways to help those with chronic pain and help them integrate back into society.
This video interview with Cynthia and John is just a hair over 11 minutes.
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 32 years. She now has Fibromyalgia and Chronic Fatigue Syndrome as over-lapping 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.
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!
Her 34-year partner and caregiver, John Garrett, is the Executive Director of the organization. It is their shared passion to place the plight of women in pain and their caregivers in mainstream consciousness that provides the backbone and spirit of For Grace.
Cynthia serves as Spokesperson at For Grace and has had Complex Regional Pain Syndrome for 32 years. She later developed Fibromyalgia and Chronic Fatigue Syndrome. Cynthia founded For Grace in 2002 to raise awareness about CRPS and five years later expanded the organization’s mission to include all women in pain. Before becoming ill, she was an accomplished ballerina and worked professionally as a dancer, actor and singer.
Since 1997, she has been a leading advocate for women in pain, raising awareness through local, national and worldwide media as well as public speaking. Toussaint championed and gave key testimony at two California Senate informational hearings. The first, in May 2001, was dedicated to CRPS awareness. The second took place in February 2004 and explored the chronic under treatment of and gender bias toward women in pain. Both of these efforts were the first of their kind in the nation.
In 2006, Toussaint ran for the California State Assembly to bring attention to her CRPS Education Bill that Governor Schwarzenegger vetoed after she got it to his desk in its first year. Her current Step Therapy bill will reform an unethical prescription practice used by the health insurance industry to save money in a way that increases the suffering of California pain patients.
Toussaint was the first CRPS sufferer to be featured in the New York Times, Los Angeles Times and on the Public Broadcasting System and National Public Radio. She is a consultant for The Discovery Channel, ABC News, FOX News, the National Pain Report and PainPathways, the official magazine of the World Institute of Pain. Also, she is a guide and guest contributor for Maria Shriver’s Architects of Change website. 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. Also, Toussaint is experiencing her first-ever partial CRPS remission largely due to the narrative therapy of writing this book.
Toussaint continues to be a leading advocate for health care reform in California. She was instrumental in changing public opinion which sparked sweeping HMO reform legislation that was signed by Governor Gray Davis in 1999. Her focus has now shifted to creating a single-payer, universal health care plan in California that would provide a model for the rest of the country.
John serves as Director at For Grace and was instrumental in launching the organization in April 2002 along with his partner Cynthia Toussaint, who has suffered with CRPS (and later other over-lapping auto-immune conditions) for 32 years. Garrett has been partner and caregiver to Toussaint for 34 years. He has done extensive research about the gender disparity toward women in pain, compiling a comprehensive library on that issue along with specific chronic pain conditions.
Garrett has assisted Toussaint in all aspects of media relations and advocacy regarding CRPS awareness and the pain gender divide. His work focuses on speech presentation, grant writing, research, media outreach and the development of branding strategies. Garrett has also advised California’s Department of Managed Health Care and other state agencies regarding pain management practices in the HMO industry.
Commenting on her long-term partnership with Garrett, Toussaint said, “My story as a woman in pain is also a love story because John’s support has been total and unwavering. Without his loving presence in my life, I wouldn’t be here.”
Garrett made numerous writing contributions, reflecting on his role as a caregiver, witness and partner, in Toussaint’s memoir, Battle for Grace: A Memoir of Pain, Redemption and Impossible Love. Also, Garrett continues to make public speaking and media appearances that share the virtues and challenges of the caregiving experience.
Want more information on Women in Pain?
For more information on Cynthia Toussiant John Garrett, the book about Cynthia, or the outreach possibilities for WIP or ForGrace.org, visit www.forgrace.org
Thank you to Cynthia Toussiant and John Garrett for their time. It’s so crucial for people to learn to understand, appreciate and care about those around them in pain. Surgery does not always solve a pain issue; it creates them too.
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