This is a blog written by my sister Diana, about having a sibling with Tourette: me! Diana is currently working on her PhD at Cardiff Univerity. The topic might surprise you, or not: Tourette Syndrome!
Tourette´s has been part of my life for many, many years, but came into it since early puberty. Before that time memories stretch back to winter afternoons playing in our play corner under the stairs and summer afternoons playing under the pine tree in the back yard of our parents´ house. Youth pictures in my album 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. She 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 finally could be named Tourette Syndrome, both mystified and coloured the image I had of my sister. Sometimes she seemed too far away to connect at all, consumed by her body that made her do things she didn’t want.
Sometimes she did things that intrigued me but could never be understood by me. For instance, not being able to carry the plates with cutlery on them to the kitchen after dinner “because she just couldn’t”. Nonetheless, we fought as fiercely as we found each other in shared obsessions, such as the holiday without our parents in Italy. 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 felt by each older sister, but maybe also because of her unique vulnerability. Our years in early twenties we grew more apart, as I went off to university. Dealing with my own problems, she 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 highly spatial pronunciation. With her touch tics she used the objects that made up her everyday environments in a such a specific and unique way that I decided to combine my understanding of the disorder and knowledge and skill human geography. With the research proposal she came flaming back into my life.
We went to a conference on Tourette’s in Greece where she, as subject of their study, spoke to a big room filled with people. Twice. I couldn’t be 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 she couldn’t have been more herself in the moment, and that the Tourette’s had never mystified and coloured her: it was me the whole time. I, as product of a society that values the normal and logical in people drastically failed in understanding the beauty in her tics and twitches. Now, my sister and I get along better than ever. She is just my sister, annoying as little sisters are, but equally as cute.
If my research is good for anything, it is in the fact that an inability to relate to a different form of humanity should invoke an openness to its capacities. Or put simply, if you can’t understand why somebody else is different, you should be open to understand what makes him/her beautiful and capable of extraordinary achievement.