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Perception part 1

When a person is diagnosed with a serious disease, something happens. Maybe not instantly, but most often the words “You have X”, where “X” can range from diabetes over cancer to ALS, triggers a reaction leading to a reevaluation of your life as you knew it.

I saw a neurologist for the first time in my life on the 9th of June 1987. I was 16 years old and had problems with my coordination, balance and fine movements. The neurologist examined me and told me that there was nothing wrong with me, what I was experiencing was purely psychosomatic.

I left the clinic feeling dazed and mistrusted. Mistrusted because I knew that he was wrong, I knew that what I was experiencing was not psychosomatic. I knew that there was something wrong with the way my body didn’t respond the way I expected it to.

My next visit with this neurologist was on the 6th of November 1989. I was almost 19 years old and on my way to start my life. I was studying my first year of a master in chemical engineering and found working in the chemistry lab a challenge. Try titrating with dysfunctional fingers and wrists that won’t move… Taking notes in class and also writing at exams caused me a lot of stress. On the good side, I made lots of friends and had also met the man who was to become my husband, though neither he nor I knew it at the time.

This time the neurologist told me that I had a neurological disorder. He told me that I had something called generalized dystonia. The strange thing is that even though I knew that something wasn’t right with the way my body didn’t do what I asked it to, I was shocked at hearing that I had a disease. To hear the doctor, the expert telling me that there was a name to what I was experiencing made me feel numb.

Perception is a strange thing.

To be continued…

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Sara Riggare (SaraRiggare)

Proud mother, engineer, PhD student on patient empowerment by IT, optimistic realist with Parkinson's. Not patient but im-patient. #QuantifiedSelf #Health20
Stockholm, Sweden

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