As Diana Whitney tells
Looking back, I had the perfect life. At 21, I was an accomplished ballerina, singer, and actress – the threefold threat. Then one day in ballet class, I tore my hamstring.
I had always worked with pain, but that pain was different. I couldn’t dance ballet for six hours a day, so I got a job in an act of illusion. I had to crawl during the day to be able to perform at night. I went from the best life in the world to a life that was literally torture.
And I knew it wasn’t just a torn Achilles tendon. I remember looking in the mirror while dancing in Las Vegas and thinking it was all over. I thought I had a burn and they were going to amputate my leg because it would get purple and swollen. But it was the excruciating, burning pain that consumed me. I thought I could take anything, but I couldn’t take this level of constant pain.
Then one day the pain spread from my right leg to my left, which didn’t make any sense. Then I moved back in with my mother in Northern California. It was my worst nightmare. I had always been so motivated and knew exactly what I wanted to do and I was lucky enough to be good at the things I loved. Until I couldn’t do it anymore.
Doctors said it was all in my head that is common in women with chronic pain. A doctor wanted me to take a truth serum to prove I made it all up. I was diagnosed with “stage fright” and “tendinitis from Mars”. My doctors also told me that I was enjoying the “secondary gain” from the attention of my partner John, the wonderful man I have been with for 40 years now. He would make me go on appointments and I would be so ashamed.
The worst thing a doctor said to me was, “You’re just a woman. It doesn’t matter. Why don’t you just shoot yourself in the head?”
They believed my pain didn’t exist and I was crazy. They kept saying I needed to see a psychiatrist, but they never referred me. My mother and I wrote letter by letter begging for care, but I never got it.
Alone with the pain
Years went by and my siblings and friends got on with their lives. Even my mother moved on – she was an actress and moved to New York. Then it was just John and me, and people stopped coming. We were so isolated.
My fear took over and I couldn’t see a future. I didn’t know then that people with severe pain often have anxiety disorders. I felt like I was being tortured around the clock. Even while I slept, I would dream of the pain. I had to find a way out, got severely depressed and suicidal, and imagined freedom from pain.
I was bedridden for a total of 10 years. For five of those years, the mysterious disease invaded my vocal cords and I was unable to speak. They told John and me that we couldn’t get married or that I would lose my health insurance. At one point I had a LEEP procedure for treating cervical dysplasia that I have since been told was unnecessary. There were serious complications and I was unable to have a child.
That was my breaking point. I had already lost so much. Thoughts of suicide became my coping mechanism even though I never tried to kill myself. I always told myself that it would be tomorrow. I am fortunate to be a strong person with a joyous nature, and even in my darkest times I knew I wanted to help people.
After 13.5 years, I finally found a specialist who diagnosed me with complex regional pain syndrome (CRPS). The initial trauma from the hamstring injury had triggered CRPS and the searing pain spread throughout my body. Although my condition was too uncontrolled to heal and I needed a wheelchair, I was finally believed. My pain had a name and I found a new focus.
By then, John and I had moved back to Los Angeles, and the Los Angeles Times interviewed me for an article about pain. My story became known in the community and people started reaching out to me. I hooked up with other women suffering from CRPS and we envisioned starting a nonprofit. When one of these women took her own life, I knew I had to move forward. Desperately thinking of all women alone in their bedrooms, I founded For Grace in 2002.
I named the organization after my aunt Grace, who died of leukemia when she was only 20 years old. Although I have never met her, she is an angel to me and guides me on my mission to improve the lives of women in pain. My dream is that what happened to me will never happen to anyone again.
The pain cancer connection
Now I see an integrative doctor whose practice is based on wellness rather than fear. His approach includes Western medicine as well as holistic alternatives and self-care.
I always told myself that if I ever got cancer, I wouldn’t treat it because of the pain. But then I felt a lump in my breast and was diagnosed with triple negative breast cancer, the most aggressive form there is. It’s been devastating, but I’m used to bad news when it comes to my health.
I went to my pain doctor and he said, “Cynthia, the inflammation from CRPS pain can cause cancer. So does the chronic stress of family disputes.”
I’ve always been a fortune teller, trying to fix my dysfunctional family of origin and the generational trauma that weighs on us. But when I got the cancer diagnosis, I was finally able to let go. I let go of this toxicity and decided to fight for my own life.
Cancer gave me an incredible gift. It’s like the disease told me, OK, I’ll give you one last chance to find out, let go of the past, and focus on the healing. And notably, triple negative breast cancer is the only type of cancer that if you respond very well to chemotherapy you can actually make the tumor go away.
I was determined to be a super responder and get rid of this tumor. During the six months of chemotherapy, I meditated and exercised gratitude every day. I improved my sleep hygiene, changed my diet to anti-cancer, and exercised daily, swimming nearly a mile. I surrounded myself with loving friends who supported me.
And my tumor was gone in the first week. They said it was impossible. But my body and mind were in contact and working together, and we received a clinically complete response.
The author triumphant after going into cancer remission
Now I’m in remission and I feel really good. I didn’t have any increased pain after 17 chemotherapy infusions, which is exceptional as I’m wired for pain. And I don’t want to scare women about the pain cancer connection – I want them to feel empowered and know that healing is available.
Cynthia Toussaint is the founder and spokesperson for For Grace, a nonprofit dedicated to improving the lives of women in pain. She has lived with complex regional pain syndrome and 15 comorbidities for nearly four decades, and became a triple negative breast cancer survivor in 2020. Cynthia is the author of Battle for Grace: A Reminder of Pain, Salvation, and Impossible Love. http://www.forgrace.org