My sister and me

Posted Tue 24th Apr 2018 at 09:02
by Diana Beljaars

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Tourette Syndrome (TS) has been part of my life for many, many years.  When I think about my shared childhood with my sister Laura, I have very fond memories; winter afternoons playing under the stairs, summer afternoons playing under the pine tree in our back yard.  Photographs in family albums mimic the light-heartedness of my memories remarkably well. She was just my sister, annoying as little sisters are, but equally as cute…

Then things changed.  Laura started doing ‘funny things’ with her eyes and nose, and I remember her being taken to an unending list of doctors. As an unknowing sibling in early puberty herself, I felt her withdrawing from my life, being taken up by her condition.

I, as everyone else, couldn’t quite relate to her as I used to. The condition, that was finally named as Tourette Syndrome, both mystified and coloured the image I had of my sister. Sometimes Laura seemed too far away to connect with, she was consumed by her body that made her do things she didn’t want.

Sometimes she did things that intrigued me, yet I couldn’t understand it, for instance, not being able to carry the plates with cutlery on them to the kitchen after dinner “because she just couldn’t”.  Despite me not being able to predict her, she was still my little sister and I felt deeply responsible for her. It might be the type of protectiveness felt by older sisters generally, but maybe also because of her unique vulnerability. In our early twenties we grew more apart, as I went off to university, dealing with my own problems, Laura left my mind bit by bit.

It was only at the end of my studies in human geography (a social science concerned with the spatial relationship between people and places) that suddenly it hit me: my sister’s condition had a profoundly spatial pronunciation. With her touch tics and sensitivity to order and symmetry, Laura used the objects that made up her everyday environments in such a specific and unique way that I decided to combine my understanding of the disorder with my knowledge and skill of human geography. I wrote a research proposal, and with that she came back into my life.

We went to a conference on TS in Greece where Laura, as subject of their study, spoke to a big room filled with people. I couldn’t have been more proud of her. It was in that moment that I recognised the little girl I used to play with in her. I realised that Laura couldn’t have been more herself in the moment, and that the Tourettes had never mystified and coloured her; her tics and twitches had never been anything else but my sister.:.

Difference between two people does not mean the one being more or less capable; it just means that they need different kinds of support.  My support to my sister is determined by how she wants it; not from a society that only accepts a very narrow normative idea of what humanity should be like.  And on all the days Laura doesn’t want me around, I work on my research.  Now, Laura and I get along better than ever. She is just my sister, annoying as little sisters are, but equally as cute.

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