In Battle for Grace: A Memoir of Pain, Redemption and Impossible Love, Cynthia Toussaint writes about her life with Complex Regional Pain Syndrome (CRPS), fight for a diagnosis and proper care and her journey to becoming an advocate for herself and other women living with pain. CRPS is a disorder that can be caused by injury and causes intense nerve pain. In her early 20s, Cynthia was a ballerina, but a hamstring injury developed into CRPS and she spent the next 13 years trying to get treatment. This book is a searing indictment of the HMO system, and Kaiser Permanente in particular, for the limited access it offers to doctors, Kaiser’s denial of care and the health care for profit model. Most of all, Battle for Grace is the story of Cynthia, her partner John Garrett and their journey through the hell of relentless pain, depression and dysfunction to a place of peace, optimism and love. The author’s chapters alternate with John writing about the experience from his point of view and the two together present a 360 ° perspective on the challenges one partner’s chronic pain present to a relationship. Cynthia’s description of her journey of being lost in illness to many different forms of advocacy is an inspiration.
I recently interviewed Cynthia Toussaint about her life and her new book, released during September’s Pain Awareness Month.
The Real Pain Experience
“I wanted to write about the real pain experience,” Cynthia says, “it was important to me that I tell the truth.” She believes that “this tragedy can help other people. It was important that I was honest about the mistakes I made to show that you can heal and you can be okay.”
CRPS is also known as “The Suicide Disease,” the intense burning nerve pain frequently driving people who have the disease to kill themselves. “It’s not just physical pain, but emotional pain and depression, as well,” Cynthia explains, “you just want the pain to stop.” This book details Cynthia’s struggle to get a diagnosis and treatment from her HMO, Kaiser Permanente. For years, doctors dismissed her pain, refused treatment or referrals to doctors outside her HMO and repeatedly said it was “all in her head.”
As her condition worsened, she became increasingly isolated. With nowhere to turn, the intense pain of CRPS lead to what Cynthia describes as “bad coping choices.” She describes years of abuse between herself and her partner, John. “You both want to get out. Everyone else has left and it’s not normal to be with someone 24 hours a day for years. I had so much anger and rage I wasn’t going to lose my life quietly.” She explains that John’s abuse came out of “him wanting to make it all go away. He couldn’t leave me, I never thought he would. I needed him to hate, too. I needed someone to help carry the hate load.” When I asked what made them stop the abuse and heal and survive as a couple, Cynthia said “the complete love and respect we have for each other. We came to a point of self-disgust and realizing we’d have to change our behavior or leave the planet. Now we really support each other.”
Cynthia continues to heal her life and her relationships. After years of estrangement from her sister, they are now close again. She learned that “people who leave, can come back.”
From Victim to Advocate
It took 13 years and leaving her HMO for Medicare before Cynthia got a diagnosis. She fought to expose the practices of Kaiser and through repeated media stories where she became known as the “Ballerina to Bedridden HMO Victim,” the truth eventually came out. A doctor at Kaiser had in fact diagnosed her with CRPS but had, along with many other doctors, been pressured to avoid diagnoses that could lead to expensive treatment. After years of abusive doctors in an abusive system, she finally helped expose what happened to her and to many other patients.
This experience with challenging Kaiser led to Cynthia getting involved with a number of other types of advocacy in her quest to get increased recognition for CRPS. These included getting close to being a Playboy Playmate, numerous interviews, testifying at Congress and, along with her partner John, starting a nonprofit called For Grace. Initially, For Grace was dedicated to creating awareness about CRPS, but as more was learned about the documented bias against women in pain treatment, they changed the mission of the organization to create awareness and fight for women in pain. The organization has recently held its sixth annual conference. Currently in remission, Cynthia remains dedicated to get her message to other women out in the world:
“No matter how dark it gets, there’s always hope, always a choice to come back”
Lene is the author of Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain and him and him and him. Her new book is 7 Facets: A Meditation on Pain.
Lene Andersen is the Community Leader for HealthCentral’s RA Community. Lene (pronounced Lena) is an award-winning writer, health and disability advocate, and photographer living in Toronto. She’s written several books, including Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain, and 7 Facets: A Meditation on Pain, as well as the award-winning blog, The Seated View. Follow Lene on Twitter @TheSeatedView and on Facebook. Watch her story on HealthCentral.