WE MOVE
204 West 84th Street
New York, NY 10024
E-mail: wemove@wemove.org
wemove.org • mdvu.org
Finding the Will to Fight
Had it not been for my will to fight, I would not be here.
– Howard Thiel
I have always been a fan of Horatio Alger and how he instilled the will to fight in the least suspecting of people. Little did I know how important he would become to me.
In my late 40’s, I was at the top of my game. I owned an insurance agency, was making plenty of money, had multiple houses and was enjoying myself and my family. Life was good. When I was 49, all of that changed.
I started noticing little annoyances. I woke up one morning with a stiff neck. I really didn’t pay attention to it until it didn’t go away. This seemingly benign yet annoying pain was soon accompanied by intense pressure, burning sensations and an inexplicable pulling of my neck to the left, where it would stay until I had to deliberately move it back by holding my chin and gently righting it. By the time I was 58, it became impossible to do all the things that we take for granted – eating, brushing my teeth, combing my hair, taking a shower, walking, exercising and even sleeping! Many of the physicians that I went to looking for help told me that the root of my problems were psychological and that it was all in my head.
Talk about a self-fulfilling prophecy! Not knowing what was wrong with me and not finding anyone who believed that what I was experiencing was real, I became desperate and depressed. I turned to alcohol and tranquilizers to ease all my pain – physical and emotional. I tried, fortunately unsuccessfully, to commit suicide twice. My depression and pain cost me dearly – my job, my houses, thousands and thousands of dollars, and more significantly, my relationship with my family.
Finally, after more than eight years and visits to more than 41 physicians and other healthcare practitioners, my nightmare ended when I found a physiatrist and neurologist who recognized my pain and symptoms as cervical dystonia. Finally having a “real” condition, I was able to receive treatment that would allow me to see the light at the end of the tunnel – the same light that I was beginning to doubt existed.
In addition to following the treatment protocol prescribed by my physician, I joined a local support group that soon grew to 400 members and evolved into the national advocacy group, ST/Dystonia. Imagine my relief and surprise when I realized that not only was I not alone, but that there were so many others out there going through the same thing, many of whom had an equally difficult time in finally giving their condition a name.
My life has certainly taken a path that I could not have imagined 30 years ago. Having dystonia has been a humbling experience – I thought I had it all and then I almost lost it all. It has given me a different purpose in life – to help others affected with dystonia through my position as Executive Director of ST/Dystonia. Life is not easy, but I keep falling back to Horatio Alger - had it not been for my will to fight, I would not be here – for myself, my family, and all those impacted by dystonia in their search for support, diagnosis and hope.
