Confronting My Dystonia 'Face-to-Face' in Talk Therapy


ex·tinct
adjective
(of a species, family, or other larger group) having no living members.
“trilobites and dinosaurs are extinct”
synonyms: vanished, lost, died out, no longer existing, no longer extant, wiped out, destroyed, gone, “an extinct species”

So I started “talk” therapy in the fall of 2016 because I had finally reached a point where I needed to stop fighting and being angry with dystonia. I needed to learn to live with it instead of spending every day trying to get rid of it. I needed to learn coping skills and how to get through the really bad days without dark thoughts clouding my mind. I needed a professional so that I could unburden my friends and family who so desperately want to help me but don’t know how or what to do.

I was talking with my therapist today and she asked me if I could describe dystonia as if it were an animal. I told her that I have described how dystonia feels in my blog and to friends as my muscles have turned into serpents coiling under my skin. That was not the answer she was looking for. She did not want how it physically feels, but mentally. I asked her to elaborate. She explained that she sees dystonia as a giant grizzly bear in the room snarling and growling at me and being constantly on the attack.

That made me think for a minute…

Then I had a clear picture of how it felt. To me, my dystonia is a giant woolly mammoth that will not budge. It just stands there not noticing me trying with all my might to push it away. No matter how hard I try to punch, kick, scream and violently get rid of the mammoth it ignores me and could care less. It is silent and so huge, so big, that it takes up every ounce of space in my life and never leaves me alone. It is overwhelming. It is extinct and and that is exactly how I feel. Extinct.

Recently in therapy I said that I felt like a volcano about to erupt. I had so many emotions bottled up and needed to find an outlet. The therapist suggested that I try to imagine that dystonia was a person sitting in the chair across from me. She said to close my eyes and say whatever I felt to dystonia. At first I was silent. I had to think carefully and thoughtfully. I tried not to start screaming like a caged animal. I started to speak slowly and quietly.

“I hate that you have been stealing away my joy for over 20 years.”

“I hate that you made me think I was crazy and made other people think I was a hypochondriac, that the pain was something I needed to push through and walk off.”

“You sent me to a mental hospital for eight days. You sent me to therapy for months. You wasted so much of my time and energy that could have been spent with my family. You tricked me and all of the doctors and psychiatrists into believing this was not a physical issue. I was put on so many medications that never helped me and made me feel worse. And nobody believed me.”

“ You have stolen my independence and my freedom. You took away my ability to drive a car and walk without pain. At times I have not been able to feed myself or wash my own hair. You have taken away feeling in parts of my body and frightened me to my core.”

“I am so incredibly sad for my children, especially my younger son who will never know the mother I could have been to him. His childhood is passing by so quickly and you have consumed every spare minute of my time. You have invaded my home and you never leave me alone in peace. I wanted to teach my son to ski, to swim, to dance, to walk in nature and explore. You have made me a prisoner in my own home.”

“I used to be so much fun and completely fearless.”

“I used to smile and was not afraid of anything. Now I am afraid to walk down the street or make plans to go to lunch.”

“You have taken the best years of my life away.”

“I worked so hard for everything that I have and you stole it away from me. I loved my job, my education, my life. Every dream I had has been shattered and broken. I have had to lower my expectations. Downsize my dreams because of you.”

“I hate that you have stolen my desire for creativity and my passion for music and art. I hate that I feel dead inside.”

“I want to thank you, dystonia, for showing me what truly matters in life. All the things that were so important to me no longer matter. The bigger house, the nicer car, the dream job. My family and my friends are all that I need. My dream is to walk in the woods holding my son’s hand and be free of pain. I want to thank you for giving me the gift of incredible doctors who are so passionate about their work and truly care about my well-being. I want to thank you for giving me the opportunity to help others in a way that may help change their lives.”

When I was finished speaking I was drenched in tears. I had to change my shirt after the therapist left. It took me many days to get over the sadness that I felt after that eruption.

I still have a long way to go. The emotional trauma caused by my dystonia has been more disabling on some days than the physical aspects of this disease. The mammoth is still in the room but he does not look so big anymore.

Follow this journey on My Journey With Cervical Dystonia.

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Thinkstock photo via KatarzynaBialasiewicz.

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