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."