alettaBaletta

The first time I was told I had “Ataxia” was in 2002, when a Multiple System Atrophy support group in the US suggested BCAS as a possible support for Shy-Drager Syndrome in BC, Canada. I’d never heard of it, though as it turns out I had a number of diagnosed conditions each one classified as an ataxia. So although I know when I was first told I had an ataxia, I had apparently suffered from it as far back as I can remember. The epilepsy I was diagnosed with in my teens, another ataxia, Meniere’s disease, again ataxia, and lastly Shy-Drager Syndrome, another ataxia, now known primarily as Multiple System Atrophy, a progressive, neuro-degenerative disease..

The word ataxia no one mentioned, maybe that was lucky. It is a daunting and confusing term, being both disease and symptom. By the time I’d heard the term for the fist time, I had already been diagnosed as suffering with it for over 40 years, ever since it was suggested I take ballet classes.

Somehow this lifelong relationship I had with ataxia was there hand in hand with ballet. That might sound strange, but it is not strange. Being learning disabled and being pigeon toed are both part and parcel of ataxia. It was my oddly angled feet and my tendency to fall sideways, and just generally having less than optimal coordination that first had a doctor suggest I start taking ballet lessons as a way to become more coordinated and perhaps grow out of my pigeon toes.

Did it set me up for ridicule with ballet students and teachers? Yes, most definitely. Did ballet work? Yes, most definitely. The underlying problems did not go away but now, no one could tell. At least not until the ugly truth took me from ballerina to desk-job (1989) to unemployable (1998); rapidly downhill.

I’ve fallen off my toes, and I can’t get back up.

However I would like to think that that is not where the story ends. Not by a long shot. My knowledge of my own body is very likely what helped me et a diagnosis as quickly as I did, in less than ten years. I realize almost instantly when something new is happening and I can pretty well pinpoint what needs to be discussed with a doctor, what to look for, I rarely have a test show nothing, if I ask for a test of my urine they find infection. Which is a good thing since many with MSA die from neglect of an infection, failing to have the fever that clues in doctors that there might be an infection. But dancers have a keen feeling of what is normal and what is not, we rely on it, and I rely on it for entirely different reasons now.

I still walk, without aids of any kind save a small shopping cart used for shopping but which also aids my balance on particularly wobbly days. I walk using every trick to make it look natural I focus on eye-high points to walk a straight line, I dig in my toes, and in my head there is music for me to walk to. As I walk I purposely tighten the muscles which hold me strongly pushing the balls of my feet into the ground and using my bum muscles to help raise my legs, especially when using a stair or just to step up or down on the sidewalk. I stretch the muscles in my neck to pull my back straight it all keeps me from being wobbly. What I cannot do is just plain walk, I have to concentrate on all of the movement. That means talking or texting while walking is impossible because should *I lose my concentration I start to look drunk and I risk falling, and people who look weak invite attacks. I was mugged a few year ago and do not want to repeat the experience.

Have I given up the idea of ever dancing, no, not at all. Probably not performing but I would love to recover just enough to be able to teach again. Just to be in a studio again feel my body stretch to its maximum, working on control, to perfect every movement , and once the body, the tool has been warmed and sharpened to use it to interpret the steps of the choreographer and the music to which it is set, and to live for those most memorable moments when the body, the dancer takes flight, suspends in air for that nanosecond, that most profound moment. The audience may not see it, but the dancer most definitely feels it.