Dancing With Dystonia

In September of 2015 I was invited to teach a Nia class at the National Spasmodic Torticollis Association Conference, also known as NSTA. The NSTA Conference is a gathering of doctors, patients of Cervical Dystonia, and their caregivers, to discuss the latest information on Dystonia. At the time, I didn't know anything about Cervical Dystonia and did not know this experience would change my life and my Nia practice forever.

Sandy Levine, who is a Dystonia patient, long time Nia student, and board member of NSTA openly shared her experiences with me about Dystonia and Nia. She told me that Spasmodic Torticollis (ST) is a movement disorder which manifests in contractions of the muscles around the neck causing extreme and constant pain.

Debbie Rosas, CEO, co-founder and co-creator of Nia, as well as Caroline Kohles, my Nia 1st Degree Black Belt Mentor and Trainer, very generously offered to work with me on my presentation. Debbie reminded me to focus on the structure of the class so that I could be comfortable and be myself. She suggested we follow the template for the Nia Moving To Heal class and Caroline guided me through this extraordinary class. Debbie suggested I introduce the idea to the participants that they can dance with Dystonia. I couldn't imagine how I was going to do that, but am eternally grateful to these brilliant women for the time and wisdom they shared with me.

Saturday morning the room was filled with Dystonia patients. Patients came with their spouses, siblings, friends or alone. The room was filled with the beautiful diversity of humanity: young, middle aged, seniors, people of all identities. After our warm welcome by the President of NSTA, Mr. Ken Price, a patient for 50 years, we listened to a presentation on the Five Stages of Grief. I looked around the room and saw denial, anger, bargaining, depression, and acceptance in everyone’s faces and bodies. I heard anger in their voices and witnessed patients bargaining, saying to themselves “if only”. There was depression in the room and I could sense the desire to withdraw from the world. We learned about acceptance: how not to deny feelings and begin to live with this new reality.

At the end of the day, I needed to go into my own body and sense what I was thinking and feeling in order to empathize with everyone’s reality and to identify my own reality. I needed to collect myself so that I could share the Promise and Joy of Nia. I could identify with everything these wonderful people were experiencing. I have lived in a body with challenges my whole life. I knew that my Nia practice had helped me Move to Heal and to feel better. I knew I could share that with these extraordinary people.

When I went to Create the Space, I was not sure anyone would come, let alone move with me. I planned a gentle class in chairs that would allow them to move and feel a little better but not challenge them beyond their abilities. Everyone had experienced a lot that day. I waited in the room for the students to arrive. At first we had one student, then two, three, five, ten until there were so many I don't know how many came. Two patients took class in chairs while everyone else stood. We had caregivers and even some of the NTSA staff there. I shared that Nia is nine movement forms, and we would move in their body’s way to find their Joy of Movement and to feel better. I told them about our Nia Wise Moves classes that are done in beds, chairs, wheelchairs, walkers, anywhere, and promised that those in chairs were going to Move to Heal as well.

We stepped into the Healing Circle. The patients and caregivers were encouraged to find their NOW body. We affirmed we were here to support each other. We set our Focus of Moving to Feel Better and we walked around the room to do a Body Awareness Walk, checking to see how everything was feeling at that moment.

The room was very quiet. Everyone was waiting and listening. The students were guided through a gentle warm up of The Bubble, The Thirteen Joints, and then Airbrushing the Body to the beautiful music of “Healing Senses” from Aya. We started Dancing the Feet with Whole Foot as we moved to “You Make Me Feel So Young”. Suddenly I looked over and much to my amazement, three or four ladies had formed a circle, were laughing, kicking up their heels and singing the song as they went around and around in their circle. Magic was happening. These bodies loved to move! My heart leapt with joy! “Here we go,” I thought! I could sense their desire to laugh, have fun, release tension and find joy! We started to dance the Get Moving Cycle.

I put on song after song after song. They did not want to stop! We danced the Feet, the Steps, the Stances, the Core, the Arms, the Hands and Fingers. We played instruments, moved with the Blocks, Punches and Kicks. We made vowels sounds, called out numbers, and looked into each other’s eyes as we created big belly laughs. We laughed, cried, and danced until we had done an hour and fifteen minutes! We danced standing up, we danced with our friends in chairs. The caregivers danced with us, as we all expressed our emotions...anger, fear, pain, joy,excitement, sadness, loneliness, hopelessness....all the emotions everyone had talked about during the first part of the conference, but instead, we MOVED them! It was one of the most powerful classes I have ever experienced.

Nia took me on a very powerful journey that day, a journey that has changed me forever. I met beautiful people and the awesome people who care for them. I heard the painful stories of how their disorders began and what their lives have been like since. I was privileged to sense their stages of grief. I experienced their tenacity and unwillingness to give up or accept “No” for an answer. I watched the remarkable strength and courage of their caregivers who walk their own path alongside their loved one every day.

Through the Joy of Movement of Nia I witnessed in this state of pleasure that their Dystonia was somehow magically and momentarily suspended. I saw movement I didn't know they were capable of, and they experienced sensations in themselves they didn't know they were capable of. They were experiencing the sensations of moving to feel better.

As we moved into the Cool Down Cycle, we did a Body Gratitude Walk. We noticed body sensations and changes saying out loud, “Thank you Body. I sense....” We reconnected with the volume and space of our breath. We created a Healing Circle. I reminded these beautiful dancers that they can put on any music they love anywhere, anytime, and Move to Heal and feel better. I shared in Nia that they are Sacred Athletes. We held hands in the Healing Circle and reaffirmed we were there to support each other.

As we closed our eyes and reconnected to our alignment and breath, I reminded them Dystonia is only a tiny part of who they are. Their identity is not Dystonia. Moving to Heal and feel better had shown them they are in bodies that can love, laugh, kick, punch, hug, walk, breathe, vocalize and dance. Dystonia is one of their dancing partners and knowing what they can and cannot do is how they dance with it. They are magnificent people living in wondrous bodies full of JOY, LOVE, HOPE, AND HEALING. We finished with a meditation to visualize our own unique path towards healing. We ended with a big self hug and a loud “THANK YOU BODY! I LOVE YOU BODY!” As we Stepped Out into a beautiful evening, I realized how Debbie Rosas had been infinitely wise, and that these awe-inspiring Sacred Athletes taught me how to dance with Dystonia.

By: Nancy Burke, Nia Blue Belt & Wise Moves Instructor