Trying to Do It My Way

Trying to Do It My Way

By Cynthia Toussaint.

For we women in pain, a super powerful, but perhaps impossible, self-care tool is living authentically. The thinking is that when we live a life that isn’t true to ourselves, we become sick from the stress and strain of our deceit. After all, it’s expressing our true self that leads to better wellness. At least, that’s what my mindfulness meditation tapes say. But, for me, they come up short.

Being real, being true to myself always came naturally, that is until pain turned my life topsy-turvy, upside down, throwing me way off course from my “true north.” Since then, I’ve searched and scratched, but have always come up achingly short when it comes to getting back on my authentic track.

Cynthia Toussaint

Out of the gates I knew exactly what I wanted and was never shy about getting it. I was always happy being loud and social, so growing up in a big family surrounded by out-going neighbors and friends was heaven. School, until college, not so much. It was too cliquey and phony, so I put my hours in before skipping off to my delights.

Besides being with people, I was in love with ballet, tap dancing, singing and piano. By the time I was seven, I knew that I wanted to act in films, incorporating my singing and dancing skills. I’ve always been driven and there were no ifs, ands or buts about my career. I planned to marry and have a child fairly late in life, so as to minimally impact that trajectory.

Jump forward to age 19. I was loving college, my boyfriend John and performing in community theater and professional gigs. My life was one big high because I was doing EXACTLY what I wanted – and I delighted in being the luckiest girl in the world!

When CRPS entered my scene and many attempts to regain my authentic-self failed, I knew my life as a performer was over and that I’d never get to be a mother. After 20 years of barely surviving body-wide CRPS, the best future I could see was starting For Grace to help others avoid my fate. I have a true passion to be a story teller, as most performers do, and being a spokesperson seemed as close as I could get to my authentic self.

To be perfectly honest though, running a nonprofit to help women in pain, while deeply worthy and needed, has never fully lit the fire within. I possess genuine desire to do the work and real care for who it helps, but at the end of the day, it’s not what I yearn for. It’s an essence of the real Cynthia.

To keep For Grace going, I bring quasi-performance into the work. I feel brief satisfaction and contentedness when I pitch and land a big piece of media, especially when I get to consult and produce (even got an Emmy nomination.) When I get to speak publicly, especially when I testify on Capitol Hill or spearhead a senate hearing, that provides a meaningful “stage.” Indeed, the most important stage because the outcome is often a matter of life and death. But, still, it’s not Broadway or a Hollywood soundstage. It’s not my dream.

In addition, I’ve created singing and writing projects at For Grace that somewhat feed my authentic self. And I’m always pitching projects that will make better use of my skill set and excite me to a certain point. Still, every day what I want to do and what I can do are a world apart.

On a personal front, my social life with John is pretty much an exercise in shared-isolation, a common plight for many of us with long-lived, high-impact chronic pain.  My authentic self hungers to be surrounded by friends, family and colleagues in performance.  Instead I engage in a few groups that have a piece of what I desire, but ultimately leave me feeling like a misfit. This lack of connection causes deep depression and at times my only comfort is knowing death will come. I deserve better. We all do.

So when my mindfulness meditation guide tells me to look deep into my heart and live its desires, I get sad. I get angry. I know what I want, I know how to get it, I know how to do it. I still could live my authentic life if I could live my authentic life. I suspect many of us women in pain deal with this deep frustration. And, yes, that barrier definitely impedes our path to better wellness.

Further, I’ve grown short with my meditation tape guides because they assure me that I’m exactly where I’m supposed to be on my journey. And if I put my mind to it I can accomplish all of my dreams by living authentically. That sounds all good and fine, but it’s a lie. They’re trying to sell me a concept that I’m happy with what I have. I’m not.

Due to my illness, the life that is left to me, while including some good stuff, is half-measured and does not spin my top. I’m authentically sharing that I’m no longer able to live authentically. Does being honest and forthcoming about that give me any wellness points?

Thirty-six years and counting, I’m still seeking my new “true north.”  I can see that star and will grab it if the right stuff falls into place. If I can land that career that’s always percolating in my mind, the one that seamlessly combines my two passions – to perform and help women in pain – my fire would be re-ignited.

It’s a long shot … and that’s the truth.

Cynthia Toussaint founded For Grace in 2002. It is a Los Angeles-based non-profit organization dedicated to bringing awareness to gender disparity in the treatment of pain. She is also a frequent contributor to the National Pain Report.

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elgie swift

Cynthia, I was thinking about another post you wrote several months ago and came here looking for something similar. You wrote an article about how difficult it was to forgive the “friends” who disappeared, some slowly some quickly, but they all just disappeared, not wanting to deal with your pain. You talked about being a forgiving person, but could not see being forgiving of this. It was dead on. It was exactly what I needed to hear.
I have not forgotten that and never will, as I also will not be able to forgive my friends who have such busy lives they cannot even take 15 minutes to make a phone call once a month.
It’s like they have a great fear I might ask them for a favor, or something that might take… 15 minutes.

Anyway, you gave me permission to not feel like a bad person for being unforgiving. Of course I don’t want to dwell on *all the bad people who were mean to me!* or the deep disappointment of feeling abandoned. I look for joy, isolated in my house because going out to get a few groceries or doctor appointments caused too much pain to look for joy then. It’s definitely an activity confined to my house.

My authentic person is different than you. My dreams were of traveling, exploring the wilderness and a new city. A new country. I flew airplanes through clouds with my instrument
rating as a pilot. That was such a dream come true and I can’t do it anymore. I have trouble driving a car. It really sucks.

Meditating and mindfulness is still useful to me because I use it to see a future. Not the way I am now, but on a big if – if there is life after death. I imagine traveling through the stars in a spaceship. I imagine my one friend who died a few years ago who I know would be here for me no matter what. I imagine feeling at ease, without pain, and feeling pure and utter joy like I felt when doing what I loved… before I couldn’t. I imagine because that’s all I have left.

Thank you for your time. You are appreciated

Jill

Cynthia, I love to read your stories. They always resonate with so many of us who have lost our lives to pain. Pain and depression always come hand in hand. I’ve had my pain for over 30 yrs and it was much easier to fight when I was younger. Now, I’m fighting the angst of old age as well. When I think of living another 10 yrs, it makes me so sad. Sometimes counting our blessings help, sometime not so much. But to me depression is boring. So after a bit, you just cheer up and do what you can, right? But know that Broadway’s loss is our gain. Thank you for your insights. Job well done👏👏

CathyM

Congrats on persisting, and also on being honest. I just got home from a James Hollis lecture & workshop about “In Between: Something Gone, Something Not Yet”. I recommend his books, and lectures on YouTube – he doesn’t sugar-coat it (he was lecturing after knee surgery, persisting despite the pain I could see in his fact) and doesn’t promise “happiness”, in fact says that the point of life is *meaning* rather than happiness. Lots of good ideas on how to find that “north” – and I want to try them asap. I totally agree that pain disrupts the attempts to follow our path, but also poverty and familial obligations can squash those attempts. I’ve got pain and low-income, but remind myself daily that others have it much worse in both categories. It’s hard not to have great expectations (in this culture) but during the workshop, someone commented that expectations were “premeditated resentments”, which I found intriguing and want to look at. It’s hard when we try to look too far ahead, so I try to work one day at a time… today is lovely, and after this post, I’m going out to enjoy it to the extent that I can. Bless you for your work, and I hope you find increased satisfaction soon.

Molly Canfield

Mindfulness for chronic pain. Mindfulness for anxiety, for depression, for PTSD, and for many other physical and mental conditions including personality disorders. After 30+ years of seeing counselors, therapists and psychiatrists, the label Borderline Personality Disorder was added to my file. Well, guess what?! Mindfulness, a component of Dialectical Behavioral therapy, is considered the, ” GOLD STANDARD” for treating BPD
(Borderline Personality Disorder). So,.why oh why did it not feel like it worked for me?!?! After trying mindfulness and dbt for close to 8 months, I am still struggling with anxiety, depression, chronic pain, anger, and isolation. It is very difficult for me to find and keep a job, exercise regularly,and become motivated about most things. My “true and honest self” is hurting physically and emotionally. After the stress of working a full time job as well as raising 2 girls along with a divorce sent me into a nervous breakdown, ECT was tried along with partial inpatient therapy. I finally had to say goodbye to my cateer along with the years and money put in to achieve that degree. My true and honest was (and to a certain degree still is) in pain. Pain (physical and mental) constantly wears me down, eats away at my motivation, and makes me want to shield myself from the outside world. I am no longer sure of what my true and honest self looks like. I keep breathing, pray every night, work in my yard and hope that one day the happy, curious and whole me will return.

Janice

I get sad too. Sometimes I wonder what my life could have been, had I not gotten injured and developed the “chronic pain”. Everything I was is gone and acceptance of the new me is to deny all my dreams. Some days I can do it. But those long lost dreams still pop up and make me sad because I can’t have them now.
I loved your article. You put it into words for me. And I do understand.

Jeaneen Stephansky

Thanks so much. I have been in chronic pain for nearly 3 years due to Postherpetic neuralgia. The having to let go of dreams has been hard, but I have a wonderful spouse and great kids and grandkids. Thanks for your very well put words.

Katie Olmstead

I think it is important to name this. This grieving for the self that can’t be. I know that I put a lot of energy into the moments when I feel “normal” or appear and act “normal” and then afterwards, the exhaustion and pain are terrible. Yes, be who you are now, but for me, and for many, that would mean being alone and isolated. Perhaps in less physical pain but in more emotional pain. No one has the ambition to say, “When I grow up, I want to spend my days managing chronic pain!” Nope. Big hugs, Cynthia.

Alex

Continued post, it appears that my post was cut short. During the next five years my life was a nightmare. I had monthly trips to the hospital for intractable seizures, a gastrointestinal bleed, seizure related falls, septic blood infections. My immune system fell apart from the stress. I was a mental vegetable. By the end of 2015 I could barely articulate words due to high doses of 2 seizure medications. My family was advised to send me to an assisted living facility. My 3 young children asked my husband if I was going to die. Miraculously, after one doctor (out of the dozens who assumed I was an addict) had the wisdom to change the seizure medications. I began a slow journey back . Today I am somewhat better, not entirely. I will always mourn the loss of a career that I pursued for almost 2:decades. I can never return to the operating room. Thankfully through all this and providing anesthesia to thousands of patients I never hurt one single patient. My current goals are to restore some of my dignity and reinstate my license. Perhaps I can find part time non clinical work. I am grateful that I am still able to walk. I wish you and fellow pain patients the best as you struggle to put your lives back together.

Virginia

Ah, Cynthia, there are very big plans for your life yet. You just haven’t looked high enough.
You have the name of your company right, just think of where grace comes from ultimately.
Your piece today brought me to my knees in tears because you are as headstrong and determined as I am to make it look like everything is alright with me.
It has been the downfall of my trying to tell my doctor’s how bad I’m doing too. They look at me as if to say, “yeah, you really look like you’re hurting.”, when I was really screaming in pain. No, I the strong woman who couldn’t show my weakness, always wanted them to just trust me by my words?
I grew up in a home(s), we moved around a lot, where if I cried, I was being a baby, if I laughed I was being foolish. I was meant not to be seen, nor heard.
Anyway, all this to say, I don’t have meditation tapes, I have a mediator. Not things, not ways, not formulas, not creeds, methods, religions, or anything but a relationship with Someone who loves and cares and is always there for me 24/7, no matter if I’m good, bad, mad, sad, or even lashing out at Him.
I think you know Who I’m talking about. He loves and cares for you too. He’s the One gives all people grace. So you see, you’ve already started to work for Jesus. Let Him love and work for you too?
I have many issues going on all which are incurable. I’ve lived a full life and edging into elderly years now, so I’m sure not to be here on this earth for much longer. So the few years, more or less, I’ve left, I hope to bring to all who I respond to on these discussion blogs, the answers I know to be facts of my life. Facts which I’ve seen with my own eyes, or miracles witnessed during the course of my years. God bless you Cynthia, and may you find the continued peace, and the joy you once had, as I know it now, in the One whom I’ve found everything I’ve ever needed. I’m 🙏ing for you, dear one.