Imagine having a chronic disease that causes excruciating pain throughout your body to the point where you are immobilized. Imagine having a disease where your friends, family and doctors tell you that the pain was just ‘all in your head.’ Imagine having a disease that stops you from accomplishing your dreams and goals, from getting a job to having a baby.
This was the case for Cynthia Toussaint, a former dance major at UC Irvine who suffers from Reflex Sympathetic Dystrophy, also known as Complex Regional Pain Syndrome.
Toussaint started dancing when she was seven years old. Even at a young age, she knew that singing, dancing and acting were what she wanted to do with her life.
‘When I saw those little girls in their black leotards and pink tights, it was the most glamorous, most wonderful thing I could imagine and I knew I was going to do that,’ Toussaint said.
Her story and battle with RSD began 22 years ago when in November of her senior year at UCI, she injured herself in a ballet class.
‘My left leg was on the barre in an arabesque and my right leg was my supporting leg and I reached down to stretch, and as I was coming up, I heard something pop above my right knee,’ Toussaint recalled.
By that evening, the pain had moved up her leg. She later learned from UCI doctors that she had torn a hamstring. They instructed her to stop dancing for eight weeks to give her leg time to heal.
Eager to return to dancing, Toussaint went back to her classes after the eight weeks were over, but the pain in her leg continued to get worse.
‘When I would dance, I didn’t have control of my right leg. It would shake and it was very frightening,’ Toussaint said.
At the time of her injury, Toussaint had been getting job offers to dance and was trying to decide whether to quit school and dance or to get her diploma, which was also very important to her.
She finally decided to leave school because she could barely walk and got a job dancing as a soloist at the Flamingo Hilton in Reno.
Unfortunately for Toussaint, the pain never disappeared from her leg. After several years, the excruciating pain moved from her right leg to her left leg and then to her vocal chords and arms.
‘I couldn’t talk for about four years,’ Toussaint said. ‘I had to use sign language and those were probably the darkest years.’
Little did she know that she was suffering from RSD. Doctors would tell her that she was suffering from a variety of things, from stage fright to tendonitis, or that she was crazy and that the pain was all in her head.
‘I was told very often, ‘You’re only a woman anyway, it doesn’t matter.’ One doctor said, ‘Go shoot yourself in the head.”
It wasn’t until Dec. 25, 1995, more than 10 years after her injury, that Toussaint was diagnosed with RSD by her doctor.
According to Toussaint, it is uncommon for more than one family member to have RSD, which is usually sparked by an injury. After the person has an injury, the nervous system sends a message to the brain notifying it of the pain. Unfortunately, RSD patients continue to get the message of pain sent to the brain.
‘With RSD, that message can’t shut itself down. It continues to amplify and the injury heals normally, but the pain signal never goes away,’ Toussaint said.
An RSD patient’s neurons at the original site of injury have learned to continue to send the message of pain to the brain and this eventually spreads to other neurons.
RSD is a curable disease only if it is caught within three to six months of the injury where it can then be treated with nerve blocks and physical therapy.
According to Toussaint, many RSD patients don’t get the care they need and are not diagnosed early enough. Many RSD patients resort to cutting their limbs off or committing suicide.
‘I know a woman who sawed her hand off because she thought it would make the pain go away, but it didn’t. The pain just spreads to a different part of the body,’ Toussaint said.
Like many other HMOs during the time, Toussaint’s HMO refused to give her medical treatment.
‘I started speaking out against the HMO system,’ Toussaint said. ‘People started coming to my house to hear my story after being silenced for nearly 10 years.’
Soon, Toussaint became known as the dancer who spoke out against the HMOs, but many people would never remember the name of the disease she had.
Toussaint, along with her lifelong partner, John Garrett, decided to start ‘For Grace’ in 2002, a nonprofit organization which aims to raise RSD awareness through mass media, such as speaking events, newspaper articles and narrative therapy, where people share their RSD stories.
Garrett, now the president of ‘For Grace,’ was also a student at UCI and was the only person who stood by Toussaint and her battle with RSD.
‘Before I was diagnosed, I thought I was the only one who had this disease. I didn’t even know it was a disease,’ Toussaint said.
After being bedridden for several years after being diagnosed with RSD, Toussaint is currently confined to a wheelchair.
‘Looking back, being in a wheelchair is the easy part of RSD compared with the pain, losing my career, losing everyone in my life, friends and family, losing my independence,’ Toussaint said.
‘This is the most horrible disease I can imagine.’
Not only is Toussaint working on ‘For Grace,’ but she has also started ‘Women in Pain’ an organization that battles against the gender bias and discrimination that women face when they report their pain to doctors.
‘Women in Pain’ fights not only for women suffering from RSD, but any woman who is suffering with chronic pain and isn’t being treated or believed.
‘I am haunted by knowing that tonight there are millions of women who have RSD who don’t know what they have, who are lying in bed, screaming in pain, who are being told that they are crazy. [This] is why I work so hard,’ Toussaint said.
Toussaint wants others to hear her story in order to prevent other women and dancers from suffering as she has.
‘My whole life was fighting to survive, fighting to get care, fighting to get diagnosis and fighting for the doctors to finally tell me that I wasn’t crazy,’ Toussaint said.
Toussaint still dreams of acting and going into show business and is even being offered acting jobs in her wheelchair, but she chooses to focus her attention on ‘For Grace’ and ‘Women in Pain.’
‘It is a choice I’ve made. It’s about priorities now,’ Toussaint said.
Toussaint is driven and determined to continue her work without letting pain and fear caused by RSD to get in her way.
‘I get scared just like everyone else. I just don’t let it get in my way. Never let fear get in your way. It’s the only way to live,’ Toussaint advised.
Toussaint will be speaking at UCI on Nov. 16. To learn more about ‘Women in Pain’ or ‘For Grace,’ go to www.forgrace.org.