My older sister Julia was born with Ataxia [greek: a- (without), -taxia (order)], a neurological disorder affecting coordination, balance, speech and eye movement as well as reasoning, motivation and memory.
Julia’s disability manifests itself most noticeably in repetition. She says “cheers” during a meal and “goodnight” before going to bed a good dozen times. For years she’s had the same interests (all things pink and fluffy, cats and Oktoberfest) and has been asking the same, often quite random questions (“What is that primary school teacher of mine up to these days?” “What are we going to have for Christmas lunch this year?”). Julia knows that she is disabled and she gets frustrated, sometimes angry. She would like to ride a normal bike (hers is an adult-sized tricycle), have neat handwriting and the ability to pop down to the shop for some ice cream or a pint of milk.
In a very innocent way, Julia loves attention and seeks constant reassurance and approval. In the past, I sometimes felt overwhelmed by her constant demand to look, listen and explain, but more often I felt drained by a lack of intellectual stimulation and demoralized by the knowledge that this isn’t a phase my sister is going to grow out of. I also felt some shame in this, since what seemed repetitive and trivial to me was my sister’s whole world, and of course I wanted give her the love and attention she deserves – regardless of my mood.
When you spend time with a person who can’t grasp concepts, you are bound to spend more time talking about observations. Julia loves living in the city where there is so much to look at. Public transport is amongst the most exciting things imaginable. Every morning on the way out, Julia stops to notice how colourful and wild the huge pile of rubbish outside our front door is, she watches dogs doing their business in the middle of the street (“Oh no, that’s not allowed!”) and points out delivery vans outside supermarkets. Interestingly, she doesn’t chase the beautiful and exciting whilst disregarding the ugly and boring, she simply notices what’s there – now – and it makes the world an abundant place.
Julia spends hours drawing, yet her style and skill level have been the same for many years. Her drawings resemble Alex Calder’s mobiles and bold color palette (free-floating swirls and wonky circles, imbalanced heart shapes, expanding stars and a mixture of capitals and lower cases). Once a new drawing is done, Julia, gently patting the chair next to her, calls me to come and see it. Twice a week examining what is essentially the same picture can feel like a chore and Julia won’t let me get away with a “Aha, nice!” from across the table. She says, “No dearest (my nickname), come and look at it now!”.
At 32-years-old, Julia, naturally mindful as she is, treats every experience as a first. Once I asked her how she felt about her progress, or lack thereof, in drawing, handwriting, walking and getting dressed. (Forgive me, I was, at times, a cruel teenager.) Julia, with her chin resting on her hand like an ancient scholar, thought for a moment, then gently shrug her shoulders and said she didn’t think it was at all important, she was doing her best walking and getting dressed, she enjoyed drawing and if I had trouble reading her handwriting she was always happy to help me along. It’s humbling to think that Julia’s dedication to practice won’t lead to perfection, and her acceptance of this is admirable.
I’m grateful for the daily opportunity to be present with my sister and be reminded that repetition was never and will never be the problem. My resistance to it was, and still is from time to time. But then again, it’s a practice, not a perfect right?