Living through Writer’s Cramp


When I read the article “Your fear, my fear”  written by  friend Andrea Robinson, I was quite moved on because she described a feeling that always haunted me in my journey with dystonia. She was able to describe in a few words some situations that lets anyone in emotional disarray due to illness. Actually, I was very glad to have found his  “Dystonia & Functional Movement Disorder Sufferer”  Blog  which addresses a life experience with dystonia in a peculiar way. And it has beautiful stories that are filled with feelings.  It tells about more one story of a life with dystonia.

The article talks about the fears that plague patients with dystonia. In my case, the fear also always been present in my life so devastating. A fear of the unknown, a fear of the uncertain and volubility condition that is peculiar for dystonia.  The fear of living the rest of my life with dystonia.

While reading the article I had some insights as the memory of my struggle to live well with dystonia since childhood. At the time I did not know I was a dystonia sufferer. I did not understand what was happening to me. This has always caused terrible fears.

One of these memories is that in my  childhood  I had no coordination of the legs nor arms. I always knocked things unintentionally. When I was running or walking, the legs sometimes did not fit to command. Generally, I felt fine and strong pain inside the head and I was  with very red face when I ran or played soccer. The pain was so great that I always sat down and put my hand on my head. Over time, I learned to use breathing slowly. This helped greatly. In my teens, I started practicing yoga, which has helped me to live through dystonia to the present day.

Another memory was the significant fact I face the difficulty of writing when I was beginning to learn to read and write. I remember it was very difficult to write and I always cried a lot. All this was the trigger for developing the most terrible fears that began to haunt me to this day. I became a fearful boy …  A boy afraid of becoming invalid and a dependent person …

But I think one of my biggest fears today is that my focal dystonia will be just a tip of the iceberg of generalized dystonia. This was always enough to leave me alert! I have lived through dystonia, rather! I have  lived in fear since the earliest times to the present day, rather!


5 pensamentos sobre “Living through Writer’s Cramp

  1. Divanicio, The unknown aspects of our future can indeed be fearsome. For years, I was afraid of never meeting someone who’d accept me. To me, the worst aspect of fearing something is the precious time wasted holding fear. All I can say is that we’re much better off focusing on the present than fearing the future. Maybe our fears will come true, maybe they won’t, often it’s not within our control. If I have to live the rest of my life with Dystonia, I’ll make the best of it, what else can we do! Keep blogging and getting your feelings out. I think you are terrific. -Pamela-


    • Pamela, you’re right. I think we have to live well with dystonia. Being a Dystonia Activist Blogger is a way to share the experiences and suffering related to disease. I was always afraid of rejection, too. This is a peculiar feeling to everyone who has a limitation.


      • Divanicio, I think blogging about our condition – or any health condition – is a wonderfully therapeutic experience that can also provide a sense of purpose. I have learned so much and met so many people through this journey. It has truly changed my life, all for the better. I’m so much more calm and accepting of my life now and better able to appreciate all that I do have. It is an honor and a pleasure to have met you and developed a friendship. Your support and understanding of Dystonia BloggerMania means so much to me. Ever Your Friend, Pamela


  2. Hello my friend,
    I cannot tell you how touched I was when I read this post, that you mentioned and relate to me.
    It makes us all feel our blogs are worth it, as we help each other and many other people out in the World Wide Web too, or at least hopefully 🙂
    I hope you have a wonderful day my friend,and take care xx


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