Welcome back to the Healing Pain Podcast with Cynthia Toussaint
My next guest is the author of Battle for Grace: A Memoir of Pain, Redemption and Impossible Love. Cynthia Toussaint serves as a spokesperson at For Grace and has had complex regional pain syndrome or CRPS for the past 35 years which later developed into fibromyalgia and overlapping autoimmune disease. Cynthia founded For Grace in 2002 to raise awareness about CRPS and 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. Today, she’s a leading advocate for women in pain, raising awareness through local, national and worldwide media as well as public speaking. Her work has personified what it’s like to be a woman who lives with pain, beyond this treatment of pain, and the gender bias toward women who suffer with chronic pain type syndromes.
Remember Self-Care: The Most Important Part of Chronic Pain Treatment and Relief with Cynthia Toussaint
Cynthia Toussaint, welcome to The Healing Pain Podcast. It’s great to have you here.
Thank you, Joe. It’s such a pleasure to be here.
I wanted to have you on for a while now. I followed your work, all the advocacy work you’re doing, your great website, and you have a great Facebook feed by the way as well, but what I want to know which is probably the way you start a lot of your interviews is to go back into your story a little bit about someone who’s had chronic pain. I’d like to go back to the beginning before you had pain. People want to know how did the pain develop, but I want to know what your life was actually like before the pain.
I had a perfect life. I consider myself the luckiest person in the world. I did practice gratitude before I ever got sick. I used to think, “I am the luckiest person in the world. Nobody has a life this wonderful. How am I so lucky?” Before I got pain, I was in love with a man named John Garrett. We were nineteen. I was doing community theater. I loved it. I think we did three shows a week and obviously, we were at rehearsal a lot. I was going to college. I was going to UC Irvine. When I met John actually, I said, “Who was that fox at the party?” I just had my first breakup, I thought, “Never again. I’m never going to fall in love again. I’m never going to need this way again. I’m not going to get hurt all over again.” John walked in and I said, “What is his name?” They said, “Ed” because he played Ed in the play. It was just love at first sight. I was in love again. He was going to UC Irvine too so I thought it was meant to be. I was dancing about five to six hours a day mostly ballet. I was also doing a lot of tap. I love jazz and modern. I like that a lot but I was really a ballerina and tap dancer. I was singing and acting. I was always busy. I am a very busy person, very social. I would say I was a workaholic, but my work is also my play because I love it. I was playing the piano a lot. I was mentioning singing a lot. I just had such a colorful life and I was never bored. I was never lonely. I didn’t understand what lonely was except that I had a teacher in seventh grade who I knew had died when he was alone and that really bothered me. I made chocolate chip cookies for him.
I just couldn’t have imagined a more wonderful life. It was a very glamorous life. One day, I was in ballet class and I was stretching like I did everyday. My teacher said, “You’re all high-level dancers. Do that stretch again and when you come up, stretch your back out.” I thought, “That sounds great.” I stretched my back out and I felt something pop in my right hamstring just above the knee. I thought the universe had aligned. I thought everybody heard it. I was a ballerina who didn’t have a lot of injuries so it was really stunning to me. My first reaction was shock then it was fear. I didn’t go front in center floor after my bar as usual. I went meekly to the back. I couldn’t do my tendu exercises. I went to see my ballet trainer and he told me that I’d torn my hamstring. I remember saying, “What is a hamstring?” He said, “You ballet dancers, you can do anything with your bodies but you don’t know what’s what?” When he said that I wouldn’t dance for up to eight weeks, I literally thought that was impossible, “This is what I do. My body is my instrument. It does what I want it to do.” Just that first feedback that I got was devastating to me as a performer. I started going to auditions because I couldn’t keep dancing at the same level. Even though I rest and no matter how much I rest, it did just kept getting worse. That was the end of that life.
You mentioned early interaction with your ballet trainer which sounded almost to be not entirely positive. How much of that interaction do you think maybe set the course for fear to sink in a little bit deeper?
I think it probably set up my fear a lot. My first interaction was fear, “I’m afraid. I don’t want to come to you. You’re not making me more well.” I actually didn’t go to him much. I went a few times and then I just thought, “I’ll get well on my own,” and I broke the rules. I went back to dance class at a much too high level much too quickly. I think a lot of that was the fear of him saying, “You might not dance for up to eight weeks. You tore your hamstring. This is a very serious injury.” That was true looking back. At the same time, it’s too bad it couldn’t have been said maybe in a way that wouldn’t have frightened me so much. I felt when he said that, maybe that meant not really dancing at the same level again, maybe that I wouldn’t get my career back.
The reason why I asked this is because there are a lot of interests around where to intervene with patients when they’re injured. Oftentimes, the earlier we can start to communicate with them and intervene with the patients and oftentimes that’s right when they’re injured potentially even before they get to a physician, if they need surgery, or they need a medication, they try to start to intervene with ways to help them cope in a way that’s both physically and emotionally positive and helpful. No judgment against you ballet trainers.
It would have been interesting if that trainer could have calmed me down a bit. I was obviously very afraid. Wouldn’t it have been interesting if I had had a psychologist help me or maybe a sport psychologist talked to me about my fear of losing what was my career? It was very scary to lose what I loved the most. I could feel that there was something really wrong. I was using an ACE bandage and crutches because it just kept getting worse. I wonder if it would have kept getting worse if maybe I wasn’t so fearful.
For a period of time, I worked with Broadway dancers for about three years. I worked on-site with them as well as worked in the clinic with them. What’s interesting is that when you work on-site with them, oftentimes people had better outcomes and did better and like the care they received right then and there in the theater instead of actually having to come to a clinic and going through the whole healthcare process of evaluations, testing, and “You need a prescription and the insurance has to approve it.” Getting to people early is a big interest of mine.
When I went back to dance class, which I cheated to go back, I would have loved to have that trainer or physical therapist helping me go back because I was so fearful. When I went back too early, I did a grand battement on Fosse and immediately I felt that same horrible pain again. I think by the third time, I was in the hallway just crying because what was wrong with me and there’s nobody there to help me. I remember somebody who worked with the trainer came out and she’s like, “Oh my god,” and she just brought me some ice and put ice in my leg, but I was really desperate. I didn’t know what I was going to do.
What was the trajectory from there into developing a CRPS or what’s known as complex regional pain syndrome? Some people know it as RSD still or reflex sympathetic dystrophy, but most people know it as CRPS.
I kept dancing but I couldn’t dance nearly as much or nearly as well. I was going to auditions because I thought, “I couldn’t take my finals in dance and I couldn’t really be a student because I couldn’t dance for five to six hours a day.” I was lying in my hotel room and I remember I was sending my headshot and resume to get a job, because I couldn’t do this vigorous dance curriculum. The teachers were not nice to me. It was, “Why can’t you do your final?” I was getting yelled at a lot. It felt like I was being punished for having this ballet injury. I got a job in a headlining illusion act. First, it was going to be at the Reno, Hilton. I remember going to class and everybody was really excited for me. I wasn’t excited because I was like, “There’s something really wrong with me and nobody was hearing me.” John, even he didn’t understand. I remember we had a fight over canned corn because I couldn’t get to the refrigerator to get my dinner, which was literally a can of corn. He didn’t understand. People don’t understand this kind of pain and especially this is back in 1982.
I remember my roommates were taking care of me. I was lying on the couch. I couldn’t get to my bed. It was very, very scary. I took the job but I remember telling them, “I just had an injury. If you want to hire somebody else, I’ll understand.” That killed me to say that because I wanted a job. I went to Reno. I was dancing two shows a night. That was six nights a week and we moved to seven nights a week in Las Vegas at the Flamingo. I loved that job. I love the illusions. I loved the excitement, the adrenaline rush of being on stage and hearing two thousand people every show, two shows a night. I loved cheering them applaud and go, “She disappeared. The sword went through her.” I was on stage and I could see all of them. It was wonderful to reappear. I worked with tigers and fire and I absolutely love that job. By that time, I had CRPS. I was in so much pain. During the day actually, I’d call around our apartment with John. It was the best time of my life and the worst time of my life. I had so much severe, really level ten pain but at the same time I just love this professional world. It was a circus. These are such insanely talented people. We had people who are on the Guinness Book of World Record. The best juggler in the world was a little kid. He was like my son. He’d come in the dressing room in between shows. I loved it but then eventually I had to leave because the CRPS spread into my left leg. It spread bilaterally, which is really common.
We moved back into my mother’s home in suburbia, which is very, very, very depressing. It just seemed so hopeless at that point. That’s when the doctor started saying that I was crazy because I started seeing doctors. I had already overdosed on aspirin because everybody kept saying, “Take aspirin. Take it more. Take it two every two hours.” I remember one day waking up, the alarm clock was going off, and I couldn’t figure out what it was because I couldn’t hear. I ended up in the ER and I had overdosed on aspirin. That night, I was a little dizzy on stage. It was great, great fun and it was really hard to leave. I’d be at my mom’s house being told that I was crazy. When I got back, it was 1984.
What was it like back then? Now, we have people like you and I who are trying to push a very different message about pain, but back then there really was no one talking about any of this.
There was nothing. There was no internet. We are far away from having the internet. I know John went to the library and tried to figure out what was wrong with me. We kept thinking that pain was a symptom to an underlying problem. I was writing letters to my HMO who’s giving me the undercare, telling me things, “You have stage fright. You have tendonitis from Mars.” I was literally diagnosed with these things. I was told many times that I was enjoying the secondary gain that I was receiving from John, which made no sense to me because I thought, “But I look so much better in a tutu than this wheelchair.” I literally would think through that but that doesn’t make sense. I remember leaving the doctor’s office with my head down and I would be crying, I’d be ashamed because they were saying that I was making it up. My right arm folded up into a severe contracture about 27 years ago. The doctor said to me, “You’re folding up your arm with your mind just the way one levitates oneself.” That was frightening.
The most abusive thing that was said to me by a doctor was he said, “You’re only a woman anyway. It doesn’t really matter. Why don’t you just shoot yourself in the head?” It spawned with, “This is what I’m going to with my future. This is not acceptable.” I remember with one doctor I said to him, “I was getting more brave,” and he would only talk to John. I was in my wheelchair, “I’m here. I am the patient.” I said, “How are you 99% sure that I’m crazy?” He actually said to me, “Because I went to medical school and I learned everything about the human body in medical school.” That’s just when I thought, “I need to do something about this. I can’t just let this go.” Obviously, my dancing days were over. I wanted to be a film actress. I love acting and I’m a singer but that was disappearing too. The days turning into weeks, turning into months, turning into years. It was literally surviving. Sometimes, one minute at a time, I got nothing.
Through the first thirteen and a half years of my pain before I was diagnosed, I was bedridden for ten of those years. I was not able to speak for five of those years. That’s why this laryngitis has been hard because it brings back memories. It was very often surviving minute by minute and John really getting me through. It was also a lot of thoughts about suicide, “How can I get out? There’s got to be a way out.” I was watching one of my siblings having a career in acting. It was very painful to watch that and to feel that there was no future for me. I didn’t feel that I have any future. I remember banging my head against the floor, literally turning off myself out so I wouldn’t have to hear her life, a life going on right next to me in the next room. It was just so painful.
What’s interesting about this podcast as we go on here is I think you’re the first person who’s had chronic pain as a patient, so to speak. I have so many different things that are flowing through my head right now. You mentioned some negative things that physicians have said to you. You mentioned one physician who specifically said, “I know everything because I went to medical school.” As an advocate and as a patient, you now know that physician’s learned very, very little about pain in medical school. My question for you as a patient and an advocate is do you feel that physician should be the primary gatekeeper, if you will, for people with pain or is there potentially another practitioner who might be better suited in your opinion, because your opinion comes from both being a patient as well as an advocate, another practitioner who might be better suited to start the triage process for someone who has chronic pain?
I think it can be the physician if the physician is very well-versed with pain. I would also love to have an advocate or somebody with pain who’s an advocate winding you through that labyrinth of finding the right people to help you. I think it would be wonderful if it’s a physician as long as the physician really knows what they’re doing, as long as that physician has really good bedside manner. I think that we also need to calm down our fears because it’s so scary to be losing our lives. We’re losing the life that we have and hopefully we’re going to move on to a new life. I think that when we have high-impact pain, we’re not going to get care. For me, I didn’t get care for fifteen years. I was way past being able to be cured. I was counting them, polychromic, I have twelve. We tend to collect these autoimmune diseases, conditions. I think that it can be a physician. It needs to be somebody who really cares and somebody who understands. Maybe there’s a second person who could be in there, somebody who really understands the pain. Maybe it could be a nurse. I love nurses. They tend to have really good bedside manners.
I guess to piggyback along with that question is why is the traditional medical system maybe not the best choice for a woman in pain?
As I mentioned about my personal experience, so many Western doctors tell us that we’re crazy. That our pain experience isn’t real. That abuse damages our psyche so severely that many of us never fully recover from that. I love integrative doctors at this point, but Western doctors with their procedures and their surgeries can hurt us so much. Oftentimes, they don’t mean to but they hurt us much more than they help us. It’s not just the doctors. I was obviously psychologically greatly damaged by what doctors said to me. I know that what they said to me made me a lot sicker. I was also told twice that I had breast cancer and that I was going to die the first time they told me within a few months, if I didn’t do any of the step. They told me I needed a lumpectomy, radiation, chemotherapy or I would die. I think most people, “Cancer, take it out.” My mother begged me. I had learned that doctors were very often wrong by that point. I was empowered and I learned about DCIS, which is what I had both times. I learned that most often it’s not invasive and it can’t even be called pre-cancer, which is what they were calling it. I turned down all the therapy and here I am.
That was about fifteen years ago and now that’s a very controversial treatment because so many women have taken that treatment. They’re suing their doctors because they didn’t need the treatment. I had a physical therapist. This is called overcare. I went to see a physical therapist because I love ballet pilates. I love to swim. I wanted to do ballet pilates on a reformer. She said, “You’re not covered for that. You’re covered if I try to straighten out your right arm contracture.” We had a heated discussion because I didn’t want her to try to straighten out my arm because I’d learned to live with it. It had been over twenty years at the time. I thought there was way too much to lose, too little to possibly gain. I eventually agreed to let her work on the back of my head, my neck, and my back. I thought, “If that helps me, great. She can’t hurt me.” But she cheated and she yanked my arm. She broke my arm.
There I am living with a broken arm and back at a level ten pain. It took them a year to diagnose that pain. I was persuaded into taking an infusion drug for lupus that they told me was causing the arm pain. You can become a life on patient if you choose Western medicine as opposed to self-care integrative care. That’s really what was happening to me. That infusion drug almost killed me. I’m really lucky to be here. Over Christmas, I got a pneumonia and I usually don’t get sick. Then we had mold poisoning. We were displaced for four months and I didn’t want to go to my Western doctor. My mom really pushed. I just listened to mom. I went and I took antibiotics and cortisones. As a result, I lost my lower body remission. For eight months now, I’ve been working really hard to gain it back. I haven’t gained all of it but I’m doing really well. When I got really sick and ended up with this laryngitis, I didn’t go to my Western doctor. I went to my integrative doctor. We’re doing things like tea and Manuka honey, a steamer, and voice rest. Just the practical things. I’m not taking any medications because I don’t want to lose my remission again.
It brings us to the next point of how important self-care can be for someone with chronic pain. Our patient said to me a couple of weeks ago, she’s like, “I don’t know what to do first. I go on the internet and there are exercises I should be doing. There are diets I should be doing. There are supplements. There are my thoughts and my emotions. Some people are tapping. Some people are taking honey and all sorts of things.” I think for a lot of people now that we’re gone from 1982 to 2017, we have the internet. We have an overload of information. What kind of advice can you give to someone who has chronic pain that says, “I realized that I have to start some self-care routine in my life.” What advice do you have and what works for you?
First of all, I believe that all of us with pain, we need to keep our power. We need to hang on to our power. If we give our power over to a Western doctor or really any doctor, and that doctor inevitably says either, “It’s all in your head” or “There’s nothing more I can do for you” or “You just going to have to live with it.” We have nowhere to go and we’re done. As we know, suicide is not uncommon among people with high-impact pain. Hanging on to that care is really, really important. It puts us into the best mental state for better wellness and for getting better. Somebody said to me, maybe seven or eight years ago, “Cynthia, you need to be responsible for your own pain care and your own wellness.” That made me really mad because I thought, “I didn’t commit a crime. I just got sick. Somebody else should fix me.” I certainly learned over the years that, “No, I have to fix myself,” and if that includes having health care professionals as part of my team, which I do by the way and I have a wonderful physical therapist. We need to be in control of our own pain care. I think that eliminates so much of the fear.
My physical therapist knows that if he does too many adjustments or if he works too much with me physically, I tend to go back. He learned that about me before I did. He actually said, “I want you to come to the center as part of your homework. Drive by a couple of times but don’t come in.” Literally I was getting tensed before coming in because that one physical therapist broke my arm. I was afraid to see another physical therapist. He’s a very intuitive guy. I think that’s really important. There are so many self-management or self-care tools that work for me. Biofeedback really work for me. I meditate every day. I’m somebody who always wants to move, not anymore. Now, I want that half hour every single day or on a weekend maybe I’ll take an hour. I love to use tapes. I really got addicted to meditation. I read all the Jon Kabat-Zinn. I’m like, “I’m just not sold, I just don’t like it. I want to move.” When I’m with people, I want to move. I want to be social.
Now, that time just for me and to relax my body is like my shoulders have come down. I’m so much more well. My pain levels have lowered so much due to meditation. I’m totally sold. I mentioned exercise. For me, I’m a mover and that’s a meditation as well. I swim up to a mile first thing in the morning or I do ballet pilates. I eat a very healthy diet, a plant-based diet for me. I went vegan. I lost too much weight and I didn’t like that. It’s great for some people but it wasn’t great for me. I haven’t done the no-gluten yet but I need to do it. I’m going to do that. I need to do that. Narrative therapy is huge for me. I think that writing is what brought me to my second ever partial CRPS remission. Nobody knows how it happened but I happen to be writing my book with John. I don’t think that was a coincidence. I think that we all need to express ourselves creatively. I know I do. I don’t know anyone who doesn’t whether it’s, “I love playing the piano. I love to sing.” I make sure that’s part of my every day. If it’s pottery, if it’s acting, whatever you love to do, we can all write. We can all have a pencil and a piece of paper next to our bed. When we wake up, if we just write down the stream of consciousness, it’s what you need to write. You can then bury it, publish it, whatever you want to do with it but I guarantee it will make you better.
I also believe in following our passions. So often, that’s something that we think we have to give up when we have pain. I think that if we give up on our passions, we’ve given up on life. For me, staying away from Western doctors is really good self-care as I’ve explained. Balance is something that my integrative doctor continues to remind me. I’m a workaholic still. I need to be reminded that, like over Labor Day weekend, “You can’t work every single day all day,” and also following our gut, listening to our bodies. My body was saying, “I need a break.” I would work for three hours in the morning and take the rest of the day off. I was invited to two parties, which was nice. I went to one. On the second day, I thought, “I don’t have to.” I was isolated for so long but just because I have that option, I don’t have to go and be social. Sometimes, I just want to be by myself and watch movies on the couch. That was the best medicine for me that day.
I read about the narrative therapy and that when you wrote your book, that your symptoms started to go into remission. There’s something that I do with patients and other pain professionals do as well. It’s called expressive writing. There’s different versions of it. Sometimes, you write about literally that pain has caused you. Sometimes you write about the type of person you like to come out of this experience. Is there any part of your book that you think, the writing part, that you can connect to the remission of your pain the most?
It was really writing about the most painful parts I think. My agent even said, “The publishers don’t believe the story.” That’s when my co-writers said, “Bring John in as your partner, caregiver, and witness.” It was writing about probably all the things that had happened with John as a result of the pain. There was violence as a result of the pain. There are other things that I don’t think I’m going to say. You’ll be stunned by the things I say in this book and I don’t generally say them. It was then having John respond to what I wrote about each chapter. It was couple’s therapy. At first, John wasn’t able to do it. He would write. Then my editor, co-writer, and my agent will look at it and comment, “It’s great John but it’s all about Cynthia.” A classic caregiver, he couldn’t write about himself. He couldn’t take care of himself. Finally, they set me up with a movie that I wanted to watch and John was just going to write. My editor gave him some key words to write. Once he started, he couldn’t stop, but he had to go to therapy first. He had to ask me for permission to hurt me. He was like, “That’s what I have to do?” “Yes, hurt me.” I was very surprised by the feelings that he was going through throughout this journey because I just thought he was Superman. I’d forgotten he had a complete breakdown during all of this. There are a lot of things I had forgotten. I think it was reliving the really dark times and bringing them up and exercising them and letting them go. They’re not really here stewing, brewing inside of me, making me sick anymore. I never thought I’d get better. That never occurred to me. It was a bonus. I just cannot say, “People do narrative therapy. It just helps.” I love what you’re doing, Joe, to help your patients.
People love it. First of all, they don’t realize it’s in there. It comes up into their consciousness and eventually it goes from their conscious on to the paper. Then I actually help people do some ceremony whether they had to rip it or burn it or step on it or shove it down the toilet, or whatever it is they can do that’s ceremonial. Few people will actually save it. They’ll go back and look at it a year or two later, but I don’t recommend people to do that because people oftentimes become very analytic and critical of what they write. It’s more release it, get it out, get it off your chest, get it off your mind, and then move on.
Since our book was published, I’d never read it. I was asked to do a reading from it with John and I tried everything to get out of it. I was like, “Couldn’t we do this instead? This might be more powerful.” We ended up reading very, very painful parts and very, very joyful parts. People loved the reading because of our eye contact. It was amazing for me to go back and, “Oh my god, this happened. I haven’t looked at this.” I hadn’t thought about it for a long time and I think that’s because I have left and that’s healing. I’m not sicker for it. I would do that again because it was really powerful. I think that’s good advice to not even look at it again.
From all this comes For Grace. Can you tell us about your current work at For Grace and how you’re impacting the world and women with pain?
I love For Grace. We’re over fifteen years old now. We couldn’t have a baby because of what the doctor had done to me actually to hurt me by accident. Grace is really the little girl we couldn’t have and she became our baby. She was always crying at For Grace and now she’s more of a teenager, a very demanding one. We first have raised awareness about RSD worldwide. I started on RSD because it was way back in 2002. We were able to do that through the media. We’re really happy with that. During that time, I was hearing from women in pain with every kind of pain I can imagine like fibromyalgia, TMJ, pelvic pain, migraines. All these women were contacting me and I was hearing their story. They were all saying, “I’m not crazy. I don’t belong in an insane asylum like my doctor is saying.” When a man would get on the phone, I would say to John, “I want to talk to this man. A man in pain.” I would listen and it was the same story. I would eventually say to them, “At anytime during this horrible journey, did you hear from a doctor that this is all in your head and you not believe?” I generally heard but not always, “No, I can’t relate with that,” and then they’d keep going because they have so much to say.
I was realizing that this is happening to women. I don’t think the words gender bias didn’t come to me. One day, John dropped a big pile of papers on my lap. He was very white, very pale. He said, “This is what you’ve been saying for the past fifteen years.” It was a report called The Girl Who Cried Pain: A Bias Against Women in the Treatment of Pain. Everything that I’ve been thinking was there. It was all backed up. We, women, are pre-disposed with all the chronic pain diseases. We feel pain more intensely than men. We even have a lower pain threshold, which is really interesting. When we report our pain to our physicians, we’re told that it’s hormonal or all in our heads. We’re given sedatives along the psychiatric referrals most, most often, whereas men in pain are most often believed and given real pain care. That’s when we expanded our mission. We do most of our work through the media, through public speaking to a lot of legislations. I love legislation. It’s show business but the outcome is really important to a lot of people. It really is.
I even run for office once because Governor Schwarzenegger may have re-vetoed a bill. I got into his desk in one year. I thought, “What can I do?” That would be stronger than if he had signed it. I thought, “Run for the state assembly.” It was announced that year and I knew we’d get the most media. It was really a nice platform. I was told that I was a one trick pony but it was really a publicity stunt. I got the New York Times, CNN, Washington Post and it just went on and on. We do events. We’re looking forward to our 10th Annual Event. Usually we do a Women in Pain Conference. This year, we’re doing a Change Agent Summit, which we will continue next year. We wanted to implement and we’re working hard to implement the National Pain Strategy in California and be a model for the rest of the country. We think it’s all there. The NIH has National Pain Strategy. This year, we’re going to have people in pain and their caregivers. We’re going to assemble them. We’re going to have a webcast for people who can’t join us on September 22nd. We’re going to learn about the barriers to care from real people, people in pain, men and women, who are suffering as well as their caregivers. We’re going to learn all about the National Pain Strategy and possible solutions.
We’re going to have an interactive World Café afternoon facilitated by a wonderful woman named Mindy Meyer. She has a story. I met her before she had RSD. She heard my spiel so many times. When she had all the symptoms including the doctor who’s saying she was crazy she said, “This is what Cynthia had.” She went outside of her HMO, got diagnosed, and went back. We worked together ever since. She went back and demanded treatment. Her pain was medicated in her right arm. It didn’t spread through her whole body. She’s amazing. We’re going to literally hear the voices of all these people in pain and their caregivers. That will be the first thing that we share with our luminaries at our 2018 Change Agent Part Two. That’s really exciting. We like events and support groups for both the person in pain and the caregiver. John and I worked together. John Garrett is not only my partner in life for 37 years, but also he’s the executive director at For Grace. It’s our baby. He always has that caregiver perspective, which reminds me. That’s really great.
What’s been the biggest surprise for you since you started For Grace?
I guess the biggest surprise is that when somebody sends me a note saying, “I’ve been following your work for however long it’s been.” Maybe if they said that they read my book and that took me one woman. She was very high up in another country with legislation and also with media. She said, “Your book took me from suicide to hope. You literally brought the sun in.” When I get feedback like that, it reminds me that this is why I do it because it’s really, really hard work and it can feel very isolating at times. I think it’s the really positive feedback that I hear. Also, the angels that we find who support us in such a big way and support us over such a long period of time. I never knew Jane Goodall would be in our board, “How did that happen?” It’s people that I really admire. It’s getting to work with my heroes and getting to work with people who really care. There’s nothing in it for them. They just want to help people and that’s what I admire the most.
What would your advice be to a patient right now who hasn’t found the care they’re looking for? Maybe they’re on a prescription antidepressant, maybe they’re on a prescription narcotic, and hasn’t helped them with their pain and they’re coming up against a bunch of walls and they’re not quite sure where to turn.
I would say don’t quit. Quitting is not an option. Don’t ever give up on yourself. Know that you’re worth finding the answer and that you will find the answer. Try to welcome the day with a smile. No matter how much pain we’re in, I think we really need to smile and be kind to other people. People are always amazed that I smile a lot. I hear, “You suffer so much.” I was like, “What’s the point if we can’t still laugh?” Laughter is the best medicine. I love I Love Lucy. It always makes me laugh. Even if you watch a TV show that helps you, do that. Do anything that’s legal that makes you feel better. I think that will be part of your path to wellness and to finding better care. Don’t give up on healthcare professionals because there are so many incredible healthcare professionals. I’d also say look at integrative care. Remember that a doctor trained in both Western and Eastern gives you at least twice the choices out there for better care. Try anything that your gut says is good for you to try. Stay away from something that scares you too much. Look for integrative care and self-management. Look for a team. We always need to find a team. Remember that you’re a very active part of your wellness team. Don’t underestimate your own value. We are inhabitants of our own body and therefore we are the experts. We like to have other experts working with us.
I have been speaking with Cynthia Toussaint. She is the author of a book called Battle for Grace: A Memoir of Pain, Redemption and Impossible Love. She’s the spokesperson at For Grace. Cynthia, can you tell us how we can learn more about you and your wonderful organization?
Please go to www.ForGrace.org and all of our contact information is there. You’ll find out about our summit. If you’re in Los Angeles, please join us on September 22nd. If you can’t, please join us via our live worldwide webcast. We have people from all over the world. We have women in pain. This year it’s going to be people in pain parties all over the world and we’re going to hear from you if you join us via webcast as well. You will be just as much a part of the day as everyone in the room.
You can find out all the information that Cynthia just mentioned. With every podcast, please log on to iTunes, give us a five-star review. Most importantly, share this message with your friends, families, colleagues, practitioners, anyone that you know who has pain or can benefit from learning about integrative strategies to heal chronic pain naturally. I’m Dr. Joe Tatta. It’s been great being here with you this week and we’ll see you next week on The Healing Pain Podcast.
About Cynthia Toussaint
Cynthia Toussaint serves as Spokesperson at For Grace and has had Complex Regional Pain Syndrome for 35 years. She later developed Fibromylagia and other over-lapping, auto-immune conditions. 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 next bill, a seven year effort, was signed into law by Governor Jerry Brown in 2015. This Step Therapy legislation reformed an unethical prescription practice used by the health insurance industry to save money in a way that increased 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, Capitol Hill and the World Health Organization.
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.
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