chapter revisited!

My recent acquaintance with one of Singapore’s award winning children storybook writers brought me back to one of the many chapters in my life: the task specific focal dystonia (writer’s cramp). It is basically a neurological condition that affects a muscle or group of muscles in a specific part of the body causing involuntary muscular contractions and abnormal postures, this in particular causes a cramp or spasm affecting certain muscles of the hand and/or fingers when you attempt to write.

She brought with her her book, sort of her short biography which focuses on her battle with spasmodic dysphonia (SD) [a voice disorder characterized by involuntary movements or spasms of one or more muscles of the larynx during speech]. She said to me since she brought it, she gave it to me as a gift. Thanking her, I didn’t give much thought about it (as I did not know that the book was about her battle with dysphonia). But I read it later the following night and glad that I did.

Although dystonia and dysphonia basically pose different conditions, I could find many similarities regarding the frustration in discovering, accepting, and dealing with this rare disease, which cause is yet known to date. Imagine your brain sending instructions to your muscle group to do something but they do not listen to you; it is just too unfortunate that it is biologically impossible for us to change our body parts as and when we need/like, we are basically stuck with a stubborn muscle group who practically refuse to work under our control. Yes yes, I have writer’s cramp, struck me 12 years ago.

My point is, many people who suffers dystonia/dysphonia share their stories online, but this is basically my first time ever knowing someone in person who actually have the (almost) same condition. To be able to share our stories, I feel somehow, glad. Maybe it is difficult for anyone else to understand, but as I said, dystonia is a very rare disease, so finding your  ‘friend’ in person is not as easy as you think it is. Though I once met a boy at his late teens (one day during my visit to the neurologist and he asked me to stay and meet someone whose dystonia had developed into wilson’s disease). The boy, could control nothing else but his eyeballs.

I looked at him, dumbfounded, and said to myself, “damn, I thought I had a frightening condition, but it pales in comparison with the boy’s suffering.” My neurologist discharged me and said while giving me 2 taps on my shoulder, “You’re lucky.”

I smiled, nodded, and said, “I know. Thank you.”