The first meeting

I think I was around 13 years old when I first realised that my body did not function the same way as others’, I might even have been younger. I remember sitting on a chair in a school, community centre or something similar in the village of Ängersjö in the north of Sweden listening while my relatives played their dance music with violin, accordion and vocals. It might have been the winter break and my family were in Härjedalen. The music was good and people were tapping their feet with the rhythm. I tried to follow their example, but I remember my surprise when my ankle refused to respond. I did my best to hide it so that nobody would notice.

Years passed and more things were gradually added to the list of things I had trouble doing: Why were my wrists so difficult to move? Why did I sometimes find it very hard to balance my bicycle? Why did I have such a hard time at physical education at school? Why did I move so slowly? Why were my muscles so tense and refused to relax?

I think that subconsciously, I chose to cope with the non-compliance of my body by asserting myself intellectually. My mind could take me where my body would not. I read constantly, I read everything I could find and I read faster than anyone else.

When I was about 16, I met my first neurologist, an associate professor at the Karolinska Hospital in Stockholm. I requested my patient records a few years ago and they contain his assessment from June 9 1987: ” … . Referral due to tremor and balance problems … Assessment: hard to evaluate … Possibly a mild form of dystonia … not particularly alarming symptoms at present… Patient was instructed to contact the clinic if the problems would increase … “. I can honestly say I do not remember much of the meeting, but I remember the way the professor expressed himself, he said: “There is nothing wrong with you, your problems are psychosomatic, but please contact us if you get worse.”

I did not get back to them.

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