I often write about my experiences, trials and tribulations, of working conductively with people well and truly beyond the scope of traditional Conductive Education. I am very passionate about this work and about what conduction has to offer a wide array of people and circumstances. But, that said, when I start to work with somebody with a good old fashioned 'motor disorder' it really does feel like coming home; the tried and tested task series, rhythms, and ways of managing and solving things; the immediate connection and response from the person who suddenly realizes that they are working with somebody who really understands their body and it's seemingly random behaviour; the excitement that sparkles across their face when one of those tried and tested tricks is mastered and used for the first time - witnessing that moment when they let themselves feel positive, hopeful, and in control again.
And nothing makes me feel like I'm home in that professional capacity more than ataxia. Yes, it was the subject matter of a special research project I did in 3rd year of uni, but moreover -- and despite the relative rarity of ataxia amongst other presentations of motor disorder -- I have had extensive experience and success working with people with ataxias including ataxia caused by rare genetic or metabolic conditions, accidents, strokes, MS, CP etc.
When I met SA, a woman in her late 40s with nearly textbook perfect ataxia and also another of my Enable Me 2 clients, I really felt that for the first time in a long time I had come home. SA developed ataxia a few years ago as a result of Wernicke's encephalopathy causing Wernicke-Korsakoff Syndrome, a rare, degenerative brain disorder caused by an extreme vitamin B1 deficiency (please see references for further reading). Everything about the way SA moves and processes movement makes sense to me, and more importantly everything about the way she responds to the tasks, the rhythm, the trick, the teaching, the conduction is predictable.
We planned on 5 weeks of intensive CE -- working on her ability to use specific tricks manage her ataxia through formal tasks and practical applications in her home environment followed by several sessions of community based practical application practice. We started working, and SA learned quickly and responded incredibly well -- getting up from the floor and walking down stairs with control and without vertigo and balance loss, a rhythmic and nearly restored natural gait with arms swinging gracefully opposite legs and minimal foot slapping, hand writing becoming ledgible again, even exciting tales of spontaneous used of learned tricks. "I brushed my teeth standing up at the sink and could fix my hips even when my hand was vigorously brushing my teeth!" SA reported excitedly one day when I arrived. "I can feel my weight transfer to the foot I want to stand on and it makes me feel like I can dance again", she said.
And then the volcano erupted. I suggested an outing for the following week that would involve train travel -- regaining independent train travel was one of the key goal areas SA had identified as key to regaining her life. SA had started talking about wanting to do more than simple exercises, she wanted to run and play tennis and go places. She understood how the exercises were helping her but felt ready to move on; I knew that the time had come to get out of the classroom with her and into the world. SA surprised me with not wanting to discuss going. I was prepared to let it go and to continue as we were - her body, her life, her time frame; fine by me. But I had already triggered something, there was no going back and the volcano erupted with an explosive raging vengeance I never in a million years expected from this shy, friendly, good natured woman.
She raged about the therapists and case managers and her mom all forcing this therapy down her throat and telling her what was important. She raged about her mom, a wonderful woman in her mid seventies who by this point SA was referring to as a stupid selfish cow who just wanted to be free of the burden of caring for her, absolutely not the case. SA's mom actually left the house during the explosion in tears because she was so tragically in the direct line of volcano fire. Or perhaps it was too painful to hear SA say that if this was how it was going to be that she had no interest in continuing to live like this and demanding who her mom was to judge her for that. SA raged on and on about how no one understood that she was unwell and that when she got better she would be able to do everything again; she kept saying "I'm unwell, why would I want to go jumping on and off of trains when I'm unwell".
And that was my last session with her. In calmer conversation later that evening SA and her mom decided to stop all therapy and intervention for now even though they knew it was helping her. They enrolled in a community computer course and a neighbour is supposedly taking SA to a local pool for some swimming and promised to be in touch at a later date to review, refresh, or progress the tricks we had been mastering.
I have never witnessed a volcanic eruption of this nature; not in a professional capacity anyway. I have talked to other participants about their volcano moments when the pressure from emotions and cognition of their life and disability and prognosis erupted; about the moments when denial and reality could no longer co-exist and exploded in tears and fits of rage. But I have never witnessed it up close and in person with one of my participants, with someone I worked intensively with, with someone I cared about. Two years of hospitals and medicine and therapy and nothing resembling SA's life as she knew it before she got sick. Two years of intervention; at the beginning the promise and hope of getting better (complete recovery is possible within a few months of Wernicke's Encephalopathy and very unlikely after that time); now only the possibility of learning to manage it better. Two years gone and SA going through the motions of rehabilitation and therapy and CE to placate her mother and please the nice therapists, yet still SA thinks that she will wake up one day and that the brain injury will be gone, that her 'illness' will be gone, that she will be better, that everything will be as it was.
And for me, 5 weeks of working intensively with SA and missing her cues, misunderstanding her, not realising where she was at and what she really needed from me. Today I was discussing the notion of healing with AS in the context of the difference between healing a person of their condition vs trying to heal that person despite their disability. I hope to one day have the chance to articulate that to SA and to her mother, but I do not think that SA will come back to me or to CE. I am very sad about that and feel that by missing something so important I have failed someone whom I really could have helped. I felt like I had come home when I met SA -- when really I had missed an important turn and wasn't even in the right ball park.