Why I Stay Positive in the Face of Dystonia
Dystonia is described as a movement disorder that causes involuntary muscle contractions that are seen in repetitive or twisted postures. Think of the idea of a Charlie horse after working out and the cramp just makes you want to scream and throw up all at the same time. With a Charlie horse, it will reside within a few minutes, but dystonia, it doesn’t go away. Those Charlie horses never calm down.
I’ve had dystonia in both legs for almost two years, and it has gotten to the point that major reconstructive surgery was necessary in order for me to walk again. The left leg has been done first, and the right will be done at another point. During my first surgery, I was told I would wake up with half an amputated foot as my surgeon was unsure he could save my toes. I will have to say miracles do happen, and I am blessed that I have all of my five toes. I look at them every day and smile knowing I have all of my limbs.
The surgeries will not cure the dystonia, and this will be a lifelong chronic condition that I will have, on top of complex regional pain disorder (CRPS) and Ehlers-Danlos syndrome (EDS). Because of the massive reconstructive surgery, I will never have full function of my ankle/foot again. I will need specialized braces and crutches to walk, but the one thing I smile about is I still have my toes.
During this journey, I would lose so much: friends, education, health insurance, independence and the list goes on. The only thing I have never lost was hope.
I have taken one of the most horrific situations I have encountered and viewed it as an educational opportunity to both myself and others. I would learn a lot about myself, especially going through this situation where I have no control over anything. The one thing I do have control over is my voice and how to advocate. I have learned from this situation that life can throw you the sourest lemons, and you have to learn how to get creative to make a sweet lemonade. I have learned that my case would be used during grand rounds with other physicians, and ultimately become a teaching tool to many providers. If others can learn from my experiences, then I feel as if I have accomplished a huge goal: advocating and educating about chronic illness(es).
Don’t get me wrong, I have my days where the anxiety and depression can get in the way, but I have many tools in my toolbox to help me when things become difficult or overwhelming. One of the best sayings I learned from one of my best friends has become my mantra when times are rough: “Feel the feelings, sit on them, take all the time you need to absorb them and then let it go.”
When days become tough, I remind myself that things could be so much worse. I need to be grateful and appreciate the little things in life, which means to appreciate my toes. I may have to adapt differently than others, but that doesn’t mean I can’t enjoy life.
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Thinkstock photo via Eyecandy Images.
I'm an artist, disability advocate, speaker and a writer. I received my bachelor's of science, majoring in counseling with a minor in art therapy. I worked in the mental health field, primarily with high risk populations. I would use the creative arts to help my clients express how they were feeling. I pursued a master's degree in social work and changed career paths after becoming disabled. I sought to incorporate the creative arts to spread my message about disability advocacy. In 2021 I published my first book, "An Untethered Truth: A Medical Journey." An Untethered Truth is about my personal journey with devastating and life-threatening spinal conditions from birth, and how I learned through faith, hope and humor to advocate for myself through numerous operations, medical diagnoses, and misdiagnoses. I provide a guide for finding one's voice in a complicated medical world and finding support and resources for those living with disabilities.
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