By Cynthia Toussaint.
I was recently reminded that just because we women in pain have the strength to re-invent ourselves we don’t get to live the lives we planned for and dreamed of having.
As a 35-year high-impact pain sufferer, I’m proud to have taken what I have left to help others avoid my fate. After feeling my life was stolen from me and considering suicide as my only option, I pulled up my bootstraps and made a wise choice – in fact, one that makes the world a better place.
You’d think that would be enough.
Not even close. Even though I’m passionate about my pain awareness work and I find deep meaning in helping others, I’m constantly unfulfilled. You see, I’m a performer first, always have been. Singing, dancing and acting are what I believe I was put on this earth to do. And that will never change.
Many years ago I was being interviewed by a journalist for what turned out to be one of the first in-depth, high-profile articles about what was back then called Reflex Sympathetic Dystrophy. The writer seemed charmed by my tragedy-to-triumph life. She nodded knowingly while asking her last question. “Cynthia, if you could go back and change anything now, would you?”
I stunned Mayrav when I answered, “Yes, I’d change everything. I wouldn’t have gone to ballet class the morning I sustained my injury. I would have lived the life I’d prepared myself for. The life I had to have, the one that would have made me happy.”
While this longing and discontentedness is always simmering, it recently hit me hard and unexpectedly. I started a LinkedIn account because For Grace is seeking volunteers for our September pain summit. That, and colleagues have been needling me for eons to start a LinkedIn profile.
After setting up my page and connecting with a few folk, I got bored as social networking has never been my bag. I love face-to-face, voice-to-voice. So the devil got into me a bit and I started searching LinkedIn for people from my past. The good, the bad and those who left and broke my heart.
In the process I connected with an old college roommate. Andi left long ago, but I’ve always felt a strong bond with her. She’d planned to go into law, but after observing my aspiring Hollywood life, changed her path and is now a top executive with a major entertainment studio.
Through the magic of LinkedIn, I could see who Andi’s connections were. Producers, actors, writers, directors – all working at the top of their game in Hollywood. My heart literally ached for that exciting, creative universe. These were the people I would have spent my life with. This was my tribe.
I’m a misfit in the pain world. While I have great respect and admiration for people who dig in to comfort, aid and assist those of us with pain, and I’m proud to call many of them colleagues and friends, I flat out don’t belong. I suspect most of us feel some of the same. We long to have our lost lives.
I’m no martyr. Even though the work I do helps people, the desire to feed my soul is often bigger. We should all have the choice to live the life we want, but, tragically, when we’re struck down with high-impact pain, that’s one of the many choices that takes flight.
Most days I accept my lot and right as much wrong as I can. But some days those stars that burn so bright, just beyond my reach, make me cry.
Cynthia Toussaint is founder of For Grace, a Los Angeles-based non-profit that works on issues facing women in pain. She is also a frequent contributor to the National Pain Report.