Today’s Prompt: If you could go back in time and talk to yourself (or your loved one) on the day of diagnosis, what would you say?
I live with writer’s cramp since my childhood. I do not know what it is to live without dystonia. I do not know what to write without making a great effort. I do not know how to live without writer’s cramp.
I had lived until 2000 without knowing my diagnosis. I suffered a lot without knowing what was happening to me.
By the time I was diagnosed by a neurologist that I had task specific dystonia, I felt at least two important things. I remember the medical consultation as it was today. I was alone!
Firstly, I felt a great relief to have discovered what was indeed my illness. The diagnosis helped me to accept my condition and seek to live well with dystonia. Thereafter, I began researching about the subject, tirelessly.
Secondly, when I discovered that I have focal dystonia since childhood, I felt a despair and a feeling of wanting more and more isolating. When I found out that besides I have a dystonia and a disabling illness, my prognosis was bad, I was even more upset.
I had many moments of anger and tears. But when I was diagnosed, I felt out of the darkness and misunderstanding. A light appeared at the end of the tunnel. A voice came in my throat: at least, I know what is my illness and I can live well with writer’s cramp without suffering so much as before being diagnosed.
Oh, what consolation!
Enough! I feel angry when I talk about it. You do not know how hard it is living with writer’s cramp in the writing and computing civilization! I really think boring talk about these difficult experiences.