Articles


How My Illness Brought Me Grace

Health + Fitness

Cynthia-Toussaint-200x200.jpg
Cynthia Toussaint, Founder, For Grace

By Cynthia Toussaint
 
I lead a life of contradiction.

I’ve experienced horrific pain, a non-caring medical system, and total loss of the career I felt I was born for. Yet I feel completely blessed.
 
Twenty-seven years ago, I was a 21-year-old ballerina with a bright future.  Then a minor ballet injury in my right leg triggered the chronic pain disease, Complex Regional Pain Syndrome, too often called “The Suicide Disease.” 

For the first thirteen years of illness, my doctors told me my physical problems were all in my head.  That abuse left me bedridden for a decade and unable to speak for five years while the CRPS spread throughout my body and ravaged my vocal cords.  After my disease was diagnosed in 1995 (later I developed fibromyalgia as an over-lapping condition), I enjoyed significant improvement and moved into a wheelchair.  
 
But my anger with my predominantly male physicians gave me the gut feeling I’d been dismissed because I was a woman. I wasn’t alone. Studies show women are more prone to chronic pain diseases and feel pain more intensely than men, all the while receiving far less care.  We get sedatives and psychiatric referrals, while men tend to receive serious diagnosis, painkillers and aggressive treatment.  Simply put, women hurt more and are helped less. 

So I founded the nonprofit, For Grace, to ensure ethical and equal treatment of all women in pain.  Our goal is to empower women to become better advocates for their pain care and to declare war on gender bias and the ever-convenient “it’s all in your head.” 

Helping women heal and make positive choices has brought a miracle into my life – a physical remission and emotional healing beyond anything I could have imagined.  All of this has been triggered by the wisdom I’ve gained from my challenging journey.  Bottom line: I attribute my healing to a newfound ability to listen deeply to myself. 

Here’s how I nurtured and listened to my own voice:

I began by removing toxic people from my life, even those I loved intensely.  This, at first, brought great emotional pain, compounding my physical illness.  But I kept going.
Next, I fired my Western doctor who urged invasive therapies I knew were wrong for me.  I followed my instincts, the key to my healing, and switched to Integrative Medicine.  This gentler approach allows me to partner with my physician and take responsibility for my pain care. 

Perhaps most importantly, I began writing my memoir. This helped strengthen my voice and "exorcize" my pain, sorrow and anger, freeing my body's natural healing powers. I strongly recommend daily journaling for women in pain, as it opens the door to their creativity and power to heal.  I am a firm believer in the curative benefits of the creative arts – dance, music, art, theater and narrative expression.

After being unable to exercise for nineteen years, I now swim a mile three times a week.  I’m singing and playing the piano again. I’m even walking through ballet pas de deuxs for the first time in 30 years!  I suspect this is just the beginning.

I embrace my “tragedy” as a great gift; it has taught me to listen to myself.  My values have deepened and evolved, forging a wiser and more empathic human being.  I know how precious each moment is and on a daily basis, I experience the great reward of helping people.  I wouldn’t go back for anything. 

Cynthia Toussaint is the founder and spokesperson of For Grace. Toussaint championed and gave key testimony at two California Senate hearings – one was dedicated to CRPS awareness, the second explored the chronic under-treatment of and gender bias toward women in pain. She will spearhead a third hearing in Spring 2010 that will explore the barriers to care that women in pain face. Toussaint is the author of the upcoming memoir, Battle for Grace, slated for release in early 2010. Learn more at www.forgrace.org.

Go back to the Kitchen Share Digg Tweeter Facebook StumbleUpon Send To a Friend

Comments

  • twenty years in stride...

    Every step a struggle
    Every touch a deep burn
    Every moment bone weary
    In degrees I watch my body forget to do
    the things it has always done
    Today its the buttons
    tomorrow the writing
    I must concentrate on every movement and its exhausting
    The light hurts my eyes
    the constant headache never subsides
    not one moment of relief to hope for
    still I claw and I try never conceeding the fight
    I will crawl if I must just to reach that finish line
    so much depends on my determination
    In one moment there are spasms
    he next I can't physically remember how to swallow
    my clothing feels like salt in an open blister
    but I will smiile
    I will not make others pay for my pain
    it isn't anyone's fault
    There isn't time to be angry or frightened
    Sleep eludes me
    at times mocks me
    when it visits the body weeps
    I will prevail I must overcome
    if not by orthodox means then by my sheer obstinance alone
    my faith sustains me it gives me peace, it gives me joy.
    I don't question my situation
    I take it in stride
    twenty years in stride...
    My babies need me
    hugs and piggyback rides
    I will not miss my chance to play with my children
    I will not deprive myself of that joy
    I don't care if it hurts
    not nearly so much as missing the moment would destroy me
    No amount of pain will hold me back from living this life
    there will be joy and I will prevail....I have to

    Written Saturday, January 09, 2010, 2:54:20 AM | Cris Baldwin-Pulver

    Posted by tearstainedangel, 29 September 2010.

  • I had the privilege of working with Cynthia and John as we planned the second annual Women in Pain Conference. Listening to the pain, disappointment and then courage and strength both Cynthia and John went through to increase awareness and educate the general public and the medical community about RSD, is inspiring!

    A person living with other chronic conditions, we understood each others pain and talked at great length about the integrative approach (stress management, proper nutrition and physical movement when possible) to managing pain, for the person living with pain and also for the caregiver. John and Cynthia are truly beautiful, kind selfless and generous people!

    Susan Nyanzi, DrPH, CHES, ACSM, FRSPH
    Chronic Disease Wellness and Specialist

    Posted by snyanzi, 11 January 2010.

  • Cynthia,

    You cannot know this, but you are such an inspiration for me.

    I, too have RSD. Two years ago, I had bilateral carpal tunnel release and a left ulnar nerve transposition following sudden, severe pain with an atypical presentation. Although my incisions healed fine, the pain not only didn't resolve, it continued to worsen and spread.

    I am an RN and enjoyed cycling and weight training. I can no longer practice as a nurse, but am extremely grateful to be able to walk outdoors and ride a tandem bicycle with my husband. This has been a Godsend as my husband controls everything and all I have to do is lay my arms in my custom made armrests (cannot hold onto handlebars), pedal and enjoy the scenery.We have a wonderful hobby to do together.

    Anyway, I was delighted to discover your website early in my online research, and am now able to embrace my disability. All of us are given challenges in life and concentrating on all we have to be grateful for brings sunshine and hope into our lives.

    I have written to you at WIP in the past, but you have had such a great influence on me, I wanted to do it again. Keep up with you wonderful work!

    Tara W.

    Posted by tandem, 7 January 2010.

  • I met Cynthia at the very 1st Women Pain Conference - now two years ago! She is truly one of the most amazing and courageous souls I have ever had the honor to meet and now know personally. It is through Cynthia's compassionate strength that she was able to not only help herself find her path toward health and healing, she now offers another light in the darkness to help illuminate the journey for the those of us who are just beginning.

    Yes, there are many of us who have similar stories of pain, struggle, and strife and it is nothing less than devastating to hear of these numerous torturous journeys. For me and my personal trials toward well-being and balance, Cynthia was the spark to my flame. Through her tireless efforts to promote awareness for all women in pain, I was able to embrace my chronic condition. It was also through Cynthia, that I was exposed to my "peers" and saw for the first time a commonality among all of us women in pain. I found "we" all possess an enduring courage to never give up even when all the odds seem against us. We have the courage to stand strong in the eye of the storm and not falter even when the course is blinding and the outcome unknown.

    It is from our collective endurance, that our link has been found, our evolution spawned and our revolution ignited. We are no longer alone in our struggle. We are no longer alone in our fight. We are no longer alone in our failures. And we are no longer alone in our Victories. We have finally found our clan. We can now rest and retreat into our own unique pride. Our vigilance can pause and our healing can begin.

    Cynthia and to all of the other women in pain around the world, I thank you from the deepest depth of my soul for being you! It is because of all of you that I found my fear, I found my tears, I found my courage, I found my strength - I found me. And, I found all of you. I am so very fortunate for all of it.

    Guts, Giggles and Courage!!!

    Posted by jah123, 5 January 2010.

  • I have known Cynthia for 15 years and have seen her journey blossom from darkness and despair to one filled with love, hope and compassion. Cynthia has fought long and hard so that nobody will ever have to go through what she has gone through, but if they do, they will NOT go through it alone. I am thrilled that so many women are now being heard and so many are being served by the tenacity and power that Cynthia brings...and always...with..and for...Grace!

    Posted by HeyJay, 5 January 2010.

  • I wanted to let you know about my book, A PAINED LIFE, a chronic pain journey. Cynthia's experience, while unique in the particulars, mimics mine and that of many other pain sufferers.
    Like her, many of us have gone from the depths of despair to levels we never thought possible.
    The UN has included chronic pain as a disorder in their Treaty on the Rights of the Disabled, in which i was able to have a small role.
    Thank you Ms. Shriver, for your interest and activity in helping women and others in pain.
    Carol Jay Levy, B.A., CH.t
    author A PAINED LIFE, a chronic pain journey
    member, cofounder with Linda Misek-Falkoff, PWPI, Persons With Pain International,
    accredited to the U.N. Convention on the Rights of Persons with Disabilities
    member U.N. NGO group, Persons With Disabilities
    member, ForGrace, WIP (Women In Pain)

    Posted by leejcaroll, 4 January 2010.