The Premonition of Pain

The Premonition of Pain

By Cynthia Toussaint.

With integrative care, we rightfully examine the potent mind-body connection. But that connection is considered only after we have chronic illness and pain. With me though, my body signaled the ensuing illness years before it began – and I’ve always wondered if other women in pain have experienced this phenomenon.

I was super healthy growing up, always active and go-go-go. I was a ribbon-winner on the swim team and sweated daily in the ballet studio. I was agile and nimble, skipping from rock to rock and rope swinging in our backyard creek. Besides a bout with pneumonia when I was eleven and mono as a sixteen year-old, I steered clear of common illnesses. Hell, I used to rub poison oak on my body to the horror of the kids my family camped with to prove I wouldn’t get it – and I never did.  I was the loudest of five siblings, so I sure knew my lungs were strong.

Cynthia Toussaint

When I was 17, I had my first premonition of un-wellness, a foreboding of dark times. I became convinced that I wouldn’t be able to have a biological child due to something bad brewing in my body. In tears, I spoke to my mom about my fear that was becoming an obsession. Confused, she encouraged me to talk to my gynecologist. That kind doctor assured me all systems were go, giggling “Cynthia, you’ll be able to have as many children as you want.” I was relieved for a couple of days, then again certain something was wrong.

As a 20 year-old, I was living a perfect life before my second premonition. I was attending University of California Irvine as a Dance Major and loving every minute… my dorm, roommates, independence and being over-the-moon busy. Besides dancing four-to-six hours, my days were chocked full of singing and acting. I loved auditioning and performing at school and for professional jobs in Los Angeles. And my dream guy, John, delivered baby roses before every opening night.

That summer while I lived at my mom’s house and danced locally, I invested in a new gadget called an answering machine and worked with a professional photographer to shoot a dynamite headshot and composite (a series of photos with different “looks.”) I even bought the perfect audition outfit, a bright magenta jumpsuit with matching high-heeled Candies. I was set. The talk at school was that I’d be working professionally before year’s end.

I don’t recall the exact day, but I began having a gnawing feeling that my show business career was going to be cut short due to something wrong with my body. I was in tip-top shape, but felt certain my career would be over when I was 21.  When I shared this grim foretelling with John, his face went blank. It didn’t make sense… except in my mind. Frantic, I called my photographer and bawled him out because I was still waiting on my composite copies. When they were finished, I had someone drive them to LA to deliver them pronto.

Right out of the gates, I was getting auditions for movies, music videos and TV shows and excitement filled my universe. Then in October of my 21st year, I sustained the ballet injury in college that triggered my CRPS.

By the mid-90’s, 15 years later, both of my premonitions had come true. Though I did everything possible to keep my career as a performer alive, including trying to work as a TV host with my disability, all of Hollywood’s doors were closed. Then shortly after John and I decided to risk having a baby, my doctor gave me a procedure that spread my still-undiagnosed CRPS making it impossible for me to get pregnant. The two most important things I planned to have in my life were ripped away – and somehow I knew about both before they were stolen.

I wonder if whatever mechanism that triggers chronic pain also provides each of us a “dog whistle” of illness to come. Perhaps, like me, we sense something cooking inside, knowing that if it catches fire it will decimate the life we planned.

I’m convinced my premonitions were an intuitive knowing that I was pre-disposed to high-impact, neuropathic chronic pain. And that gives me hopes that someday scientists will identify that strain of DNA that would give a head’s up.

If I’d been given a warning by someone in the know, I would have stopped dancing and focused on my acting career. If I’d been given a warning, I would have declined the procedure that ended my chance to be a mother. And perhaps my life would have been completely different.

Either way, our bodies talk – and we need to listen to even their faintest whispers.

Cynthia Toussaint champions awareness of the gender bias toward women in pain worldwide. Since her CRPS diagnosis in 1995, she remains active in the arenas of public speaking, writing, mass media and political advocacy for those who do not have a voice. Toussaint founded the nonprofit For Grace in 2002 and is the author of Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.        

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Thank you for sharing this. We need to be more in tune with our bodies! You did a great job of painting your picture.

Deborah Fochler

Yes for many years I had been told by friends and even some family that something was wrong. I was 20 years old graduating from college, working and planning on getting married. My boyfriend was in his last year of med school. That last year I was just so tired. Couldnt stay awake thru a movie. Would fall asleep at the table eating dinner. At first he teased me about him being boring but the truth was we didnt have much time together and no matter what I did I could not shake the bone chilling dropdead exhaustion. I finally went to the doctor who didnt take me too seriously. Said – what do you expect with what you have going on. You are burning the candle at as many ends as you can make. The other thing was I would get mad at everything and usually I am very easy going. October 5, 1974 I got married and we didnt take a honeymoon because I had to go to work two days later. October 7th was my birthday. My husband got up to go to work. I was so tired, I lied told him I was fine and pulled up the covers and went back to sleep. At lunchtime my husband ran into my boss and he asked where I was because it was the first day of work I had missed in several years. So, they tried to call me and there was no answer. So my husband came home to find me unconscious, barely breathing. I was taken to the hospital and immediately transferred to another facility with a blood clot in my lungs. While trying to find out what was wrong they discovered a large tumor in my chest wrapped around my heart. Was eventually diagnosed with Hodgkins Disease. I was placed on blood thinners which I stayed on until 2010. No one knew or bothered to know that there are many side effects to heparin, lovenox and coumadin. For one it thins your bones and I have suffered at least 8 or more spinal fractures as well as at least one skull fracture and numerous other broken bones.The radiation to my chest destroyed my thyroid and dont even want to begin to think what all the years of prednisone and chemo has done. Have often wondered what I could have prevented if those small signs were not ignored.

Cynthia, I was extremely active, pushing myself above and beyond. I was a ski racer, always practicing, always falling getting back up and going on. I competed against boys in training, but raced the girls. I started knowing something was wrong as long as I can recall. The pain in my back, was always there, my legs would hurt so bad I would put them up on the wall when I laid down, massaging them myself with no relieve, my periods were of a pain indescribable. I knew it was not suppose to be this way. My muscles and connective tissue would stay in permanent cramps. No body would listen to me. I was labeled Depressed with everything in my head. I kept pushing for someone to hear me, but all it did was add fuel to the fire, that I was mentally ill. I became isolated with no friends. I kept pushing myself, I felt I could change what was happening if I could just discipline my mind to handle it. I fought my way through life. Every step of the way I was in severe sever pain, always tired. I ran a triathlon, a marathon. Pushing my body to listen to my mind. I would go to Doctors for answers, they would consider me mentally unhealthy. Numerous times I was sent to psych. hospitals. I knew I did not belong there. I was put on antipsychotics, that made me psychotic, antidepressants, that never helped. I tried to do everything they said I had to. But I knew my body was yelling and screaming that something bad was wrong and it would never let me be. I can not recall one day in my life I did not suffer. I was thrust into the mental health system, yet I graduated from college, I was a sp.ed.teacher, for years I struggled with pain and weakness. It took all I had to teach, my difference stood out, and I was harrassed, and pushed out of my proffession. My teaching evaluation were always excellent, but they started saying, I didn’t smile, I needed to go into the teachers lounge and socialize, where at the time they were allowed to smoke. I started to try to change my career to a Paramedic. I did extremely well, I loved it. That was when my muscles started to loose strength. I ran, rode my bike, so I was not out of shape. I became out of shape. I knew it was dangerous to any patient I would go out on so I had to give up this goal. I lost everything my proffession, my training to be something I truly loved. Yet I was still being told it was in my head. They did a hysterectomy on me at age 30. I kept loosing my entire life, but I still had my spirit, my soul. I didn’t want to give up. My muscles & connective tissue became unbearable I continued being in pain, fatigue became… Read more »

Yes, I also had a premonition that something about my body was terribly wrong. I was a very physically active kid and a bit of a wild child, always pushing myself to my limits from grade school “races” on. I felt I had to do these things “while I still could” even though I was very strong and healthy.

I did notice that my body would strangely “give out” on me when I was running fast, and I’d have to slow down because of my legs would get confused and fall out rhythm.

Or, I’d be racing easily in the lead and then mysteriously my legs would run out of power before the finish line, allowing many others to overtake me. I remember making up a story about how I had a serious heart/lung condition to explain it to my friends.

Even in my thirties, I was still throwing myself into all kinds of physical activities: horseback racing, motorcycle riding, and windsurfing. All of these activities had to be done immediately. A friend even asked me if I had some kind of fatal disease that was making me want to do everything right away. I said no, but it rang true to me.

Only at the age of 52 did I finally learn about my connective tissue disorder, EDS, which explained all those strange experiences I had growing up.

Holly

The sad thing for me was knowing a lot of my family members thought I was just being negative, or a hypocondriac. I was very much injured from a laproscopic cholycystectomy (gallbladder) and have had 5 reconstructive surgeries to my common bile duct. Even though I was supposedly “fixed” I felt terrible every day. We know our bodies……but yet how to get others to listen was another story. One of my problems…. it took a friend I met on a health website to ask the Dr. to check me . And my friend was right! I had Hep C! But no Dr. ever checked me for it even though I had so many surgeries and problems with my liver. I had to have the right lobe of my liver removed.

Ahhhhhhh…….but onward we go……

God bless each and every one of you. Keep fighting the fight. Even though it’s not good what we’re going thru, it makes me feel better knowing I am not alone.

Maureen M.

Cynthia, you are a voice for many of us. Im amazed at how familiar your story is to my own story. I too was a promising Ballerina, in my teen years, in NYC.
But, I broke my ankle on a bicycle accident and that ended that.
I suffered horrid menstruations. I had IBS as a teen but didn’t know that that was what it was (in the 60’s) until I hit my 30’s. Also, I was thrown from a horse in my teens which, unbeknownst to me back then, became the beginning of my chronic spine pain issues.
As years went on I had TMJ, Migraines and I have CFS/ME.
All of which I have learned in recent years are connected to one another, for people like me.
Then I was in a wicked auto in 2004 (not my fault) that ultimately and drastically changed my life. I then became disabled, have had 4 debilitating and negatively effective spine surgeries, have suffered through many many treatments, it sadly ended my Nursing career of 31 yrs at that point, it ended my social life, I lost friendships and the closeness of family including my only child etc etc… we all know that story. No one could accept that this Super Woman was no longer.
It has taken me many years to accept my conditions through therapy, research/gaining knowledge on my own, finding support online, and simply just by ‘hanging on one day at a time and keeping positive’.
I am consistently finding and trying out new ways of living in Chronic Pain, as I age and as things with my dysfunctional body change.
Because we were who we were when we began our young lives… it still makes it difficult to accept and live this way.
Keep strong beautiful Warrior and keep your eyes on all the blessings you have.
This is our lives… We CAN DO IT! Hugs, Maureen

JoDawn

Cynthia, WOW! What an amazing account of being completely in touch with yourself!

Although my accident, and subsequent CRPS completely blindsided me, I did have a horrible feeling about the procedure that I am sure caused it to spread from my left arm, to both arms.

I KNEW!! I JUST KNEW! But I was so desperate for the pain in my left arm to stop that I ignored all the alarm bells ringing.
Never again!

Dead Flowers

Mine don’t seem quite as clear-cut. I developed strange stomach aches periodically between the ages of maybe 6 and 8-9, always with the feeling that there wasn’t really a medical reason for them, and also a strange fear each time I got them that they were never going to go away. An incident occurred around age eleven, while riding my bicycle in our relatively sheltered neighborhood as I often did. I turned one corner where the street led out to the two-lane highway that went through town rather than continuing around the relative safety of our little area. I was suddenly struck by a “knowing” that the best time of my life was soon coming to an end, and turned around before I reached that particular road. It would actually be quite some time before the magnitude of my orthopedic issues requiring multiple failed surgeries and ultimately leading to severe chronic pain, came to light, as they went undiagnosed for many years. Yet that moment in time was so powerful that I have never forgotten it, and because my condition was then already in existence, I have to wonder. I am very intuitive now that I am older, and after writing this, also slightly concerned about the possibility of a future issue with stomach area involvement! Sadly though, if that were indeed the case and if it were to be of a serious enough nature, given the current state of affairs, I would most definitely let it “take me down.”

Katie Olmstead

I’ll be interested in hearing if others have had a premonition of their condition-to-come. I don’t think I did though I had that kind of premonition during a pregnancy, or right after the miscarriage. I don’t think I “knew” that the pregnancy wouldn’t work but immediately, within minutes after the miscarriage, I felt a huge relief that what I had somehow “expected” had come to pass. I only knew in retrospect but I knew deeply that that baby wasn’t viable and needed to come out sooner rather than later. I was grieving, of course, but also oddly relieved.

Karen C.

Wow… reading your life story just made the hair stand up on the back of my neck Cynthia. I have had RSD/CRPS for almost 8 years. I wish I would have known something about this disease before I had knee surgery. I could have taken vitamin C before hand and maybe not have gotten this disease.

You are truly an inspiration to all RSD’ers Cynthia. Keep up the good fight!