Dance
Comments 6

A Dancer’s Path of Guillain-Barré

What is your first response when your toes go numb?

Mine was to wistfully ignore it and keep dancing.

Let me set the scene.

It was this August and I had just flown across the country from Seattle, Washington to Becket, Massachusetts with my dance family, Pacific Northwest Ballet, to perform for the renowned Jacob’s Pillow Dance Festival. I was cast to perform in all six shows that week, sometimes with three roles in one show.

On the flight to MA, my toes went numb and then, halfway through the week, I started loosing sensation in my fingertips too. It is instinctual as dancers to push your bodies to attempt movements that aren’t normally feasible and I certainly wasn’t going to let my fingers and toes keep me from doing what I loved most – performing. While dancing in the final performance, my legs were out of steam. The power I was used to having in them when I jumped just wasn’t there. I was tired from the shows, traveling, and performing, but I was fine.

I scheduled an appointment with my primary physician the morning after returning to Seattle to have her tell me I was healthy and needed to rest. Twelve hours later, I found myself laying in the fetal position on an E.R. bed with an excruciating needle in my spine. Only then did I begin to realize my physical body didn’t feel like my own.

What seemed like an eternity later, the results came back and I had been diagnosed with a French name I could barely remember. I had Guillain-Barre Syndrome (GBS). But, what was GBS and why me, a healthy 25-year-old professional ballet dancer? The autoimmune disorder, affects about one in 100,000 people, attacks the body’s nervous system causing the loss of sensation and muscle strength. No one knows its causes or a cure. But what did this mean for the upcoming PNB shows next month? My body is my livelihood.

I spent that Labor Day weekend in the hospital. Although there is no cure, I was receiving an IVIG infusion of Immuneglobulin over four consecutive days to stop the immune system from further attacking the nervous system. As a dancer, I have an acute awareness of my body and within a few days, I couldn’t believe this body was mine.

I am familiar with Physical Therapy in the dance world for an ankle pop or a back release, but never had I needed a therapist to teach me how to walk up stairs. Before going on a walk with the therapist, she secured a large black belt around my hospital gown. I was leaping across the stage one week ago and now I was walking on a leash down a hospital hallway with little prospects of dancing the same ever again. My legs were shaky and my steps were small.

How would I dance again? Ballet, to me, is the ultimate way of expressing myself through movement and my GBS diagnosis enhanced my relationship with my body over the next few months.

* * *

My third appointment with my dance-rehab Physical Therapist, Karen, was the most surprising. This was about three weeks out of the hospital and I was slowly making progress taking short walks and functioning independently again. I hadn’t set foot in a studio since Massachusetts because I couldn’t bare the idea of not dancing along with my friends.

Karen advised me that it was time to begin with the basics of the ballet vocabulary – pliés and tendus. I put my feet in a first position and stopped. My mind knew the mechanics of a plié, but my muscles had no idea what to do. I commanded my legs to bend over my knees, but there was no connection. I had to be taught a plié like it was my very first ballet class. Karen guided my knees over my toes and I did my first plié. It was foreign to my body, but with a few repetitions it became more normal. Now, tendu. I commanded my leg to stretch to the side with a pointed foot. My muscles shook with confusion, but slowly I regained that muscle memory back over the next few days of trying.

My path of recovery brought me back to the bare basics of ballet and I would need to reteach every movement to my body as if it were the first time. Over the last three months, I have been frustrated with my slow progress and others I have relished in my triumphs of executing a step. This experience has taught me to listen to my body and see my tiny improvements as a step closer to performing on stage again.

* * *

I can assure you that my most memorable moment of GBS will be when I returned to the stage. The Nutcracker is a tradition engrained is every dancers hearts and can be arduous after 40 performances each holiday season. But, this year, it will have a new meaning as my first steps on stage.

Me as the Arabian coffee in PNB's {The Nutcracker}. 2016.

Me as the Arabian coffee in PNB’s {The Nutcracker}. 2016.

I performed a role that I dreamt of dancing as a child, the Arabian Coffee. The seductress has a solo in the Land of the Sweets. I find her presence is more powerful than the steps themselves. The movements are more challenging than I remember them being last year when I performed the role, but how grateful I am that my body is allowing me to revisit this role again this holiday season. I can replay my first few steps on stage in my mind and see my dance family supporting me from the wings. My heart flutters when I think about it.

Guillain-Barre has been humbling for me in my day-to-day life and as a professional dancer. I am aware how truly precious my one body is. I have a perspective on life and dance that many others will never have and it will be engrained in my mind and body forever. I don’t know if the audience will be able to notice a difference in my dancing, but I can assure you that each role will be coming from a deeper place inside me. I now know what it is like to have body that can’t flow through movements and I want to relish in every moment I have in my healthy, connected body in the years to come. There is no better way to start 2017!

My hope is that my journey can serve as a sort of comfort to anyone fighting Guillain-Barré. Please do not hesitate to reach out.

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6 Comments

  1. krwhite10 says

    You are an inspiration for many. Some would simply quit. Your work in recovery should help others in the same or similar situations.

    Much Love.

    Liked by 1 person

  2. Lucia Neagu says

    My dear Cecilia,
    I read your moving story and understand your passion, frustration, and sacrifice needed to keep being yourself in spite of hardships of life. I wish you total recover and learn all the lesson yo can take from what happened. I wish you a happy 2017, without incidents and a lot of happy feelings.
    Happy New Year!
    Lucia

    Like

  3. Phyllis Gordon says

    Good heavens, Ceci, I had no idea. Godspeed in your ongoing recovery, and I know the joy you’ve always felt in your dancing has increased ten-fold. We love you!

    Like

  4. krwhite10 says

    How are you now? It’s end of season for CB and many dancers are retiring. I hope you are getting stronger and stronger and show up SUNDAY in Raleigh.

    Like

    • Thank you for your comment. I am back in full action here in Seattle at PNB. It was a 5 month recovery. I have been following the CB updates – hope you enjoyed the show!

      Like

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