Anudder Tough Mudder...

Everybody's talking about Tough Mudder - and since I first heard of it I've been talking about it too, insisting that it looks awesome but that there was no way I could / would / or should do it.  My friend and colleague recently blogged about signing up saying that it was for the challenge and to give purpose and direction to her training.  Emy's blogs inspire me - and I read this and thought 'good on you honey, I'm not doing it'... Tough and Tougher - Emy's Blog.

So, as you can imagine, I'm still trying to get over my state of shock that I too now have signed up.  So why the change of heart, you ask?  To be honest, there has really been no change of heart.  I'm still terrified, I'm still not sure that I can do it and still believe that some of the course will be borderline impossible for me.  I still think that coming back from my wedding and honeymoon only three weeks before the event will disrupt my training and add further challenge to an already challenging event to train for physically and mentally.  So why did I sign up?

Was it peer pressure?  Yes and no.  Alexander runs a bootcamp, I train in; everyone from bootcamp is entering the challenge as a team.  But there was no pleading or judgement - everyone was cool with me saying no way hosé.  But everyone was doing it and I was starting to feel left out, and like I was letting the team down by not going.  So there was peer pressure, but as usual I was the jury of my peers, I was putting the pressure on my self.

I was also the one doubting myself -- I started to listen to what I was thinking - that if there were some things I couldn't do I'd be letting the team down, and that I'd never be strong enough or fit enough or brave enough.

How ridiculous - I was worrying about letting the team down if I tried and couldn't do everything or wasn't good enough, and I was worried about letting the team down by not trying at all.  What an awful lot of worrying.  And Alexander said - 'do it, don't do it, stop worrying, I just don't want you to regret not doing it'.

I remember the days of Canada fitness testing back in primary school - I was so unfit and fat and uncoordinated I was actually allowed (and encouraged by our school's gym teacher Mr C.) to sit in the library and read and was still given a participation certificate.  I was absolutely alright with that.  I was good at reading, not so good at running and jumping, and was happier to not try than to fail.  I'm still sometimes that way - but I don't like that about me and it is something I try to work on.

That's not me anymore.  Nearly 20 years after 'participating' in Canada fitness testing from the comfort of the school library I went back to show Mr. C. my certificate and medal for completing my half marathon.  He didn't care, but clearly I did.  I've done lots of things I was afraid of doing, gone here and there mostly by myself, tried this, challenged that, but I'm still afraid of physical challenges, afraid of getting hurt, afraid of not being good enough.  Alexander is right - I want to do this and am afraid.  (Yes Alexander - just like that cache at the top of Glacier mountain that we almost found - I wanted to but it got dark and cold and hard and I was afraid and I talked myself out of it and us back down the mountain - my only regret from our Canada holiday).

So why did I sign up? Because Alexander is right, I will regret not doing it - and the old me would have been alright volunteering in the event first aid tent, would have accepted that there are things that other people did and I didn't because I couldn't.  That's not me anymore - I was already feeling sidelined and left out 6 months before the actual event.  I was going to regret not doing something and it was my choice, not Mr C.'s doing, and it wasn't too late to change that so I signed up.

I honestly am still terrified and still doubt whether I will be able to meet every challenge on the day but I'm going to train for it, I'm going to go, I'm going to try my best, I'm going to 'give it all I got' and if I'm going to let the team down at least I'll do so stewing in mud and fun instead of sitting at home in a puddle of excuses and regret.  If you are interested, here is the tough mudder official video.

And this is not grade school, and this team is okay with my strengths and weaknesses just as I am with theirs.  And Alexander smiled with his mouth and his eyes when he said 'I'm glad you are coming - we are going to have so much fun together'.

It felt like home...

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.


References:
http://emedicine.medscape.com/article/288379-overview
http://www.ninds.nih.gov/disorders/wernicke_korsakoff/wernicke-korsakoff.htm

What's going on?

A few days ago I announced on facebook that I am excited about my new affiliation as the Sydney arm for Future Footprints Conductive Education, and that I look forward to working with Eszter Agocs and Future Footprints to provide viable options and alternative opportunities for individuals and families seeking CE in the greater Sydney area.  And as per my plan, this announcement attracted a fair bit of cyber attention (a plethora of likes and comments, some emails, and even some text messages), most congratulatory, but several expressing worry about their current service.  I would like to take this opportunity to explain more about what I am working on with Future Footprints and where I see things going in the future.

First and foremost -- it is business as usual for my current clients (so no, you aren't getting out of your 5:45am training DF, and yes FG and MD, I'll still be working with you oldies but goodies and CE for adults will always be the focus of my conductive education practice).

At present Conductive Education is offered as a specialty under my personal training business -- Transformations: Personal Training for Every Body.  It is one of the many services I offer, along side of the usual personal training offerings such as fitness, body re-shaping, weight loss nutrition, rehabilitation, and training for women during pregnancy as well as post-natally.  I also offer personal training to people with disabilities as a specialty within my personal training business.  And, to be honest, I blend CE into everything I offer -- for those of you who have spent time with CE, you know it is a lifestyle and a way of thinking, being, and doing -- so I can't really turn it off and don't really try to because I feel that the CE approach allows me to be a better personal trainer.

Mainstream personal training is and will continue to be an important part of Transformations; I love the diversity of my present business and am keen to maintain this.  There are certainly a lot of exciting things happening in disability and CE in Australia at the moment but please let me assure you that I have not lost focus on other aspects of the health and fitness industry.  I have just completed an awesome course in nutrition and nutrition coaching from Precision Nutrition and will be certifying as a 'Heart Moves' trainer (with the Australian Heart Foundation) to improve the quality and specificity of the services I am offering through Transformations, and am training under an extremely educated and experienced trainer so that I can continue to grow professionally (and fit into a wedding dress in a few month -- details!).

Over the past few years Transformations has been literally blessed with opportunities to offer CE and specialized personal training to people with disabilities through 'third party funding arrangements' -- Fighting Chance Australia funded CE for nearly two years and recently I have had a subcontractor agreement with Community Care Northern Beaches to provide personal training for their clients.  I am so grateful for these opportunities and have made efforts to give back continuously via pro bono work and above and beyond expected service -- this is made possible by these contracts keeping business going well.  Transformations will continue to seek creative and ethical ways to provide services to people who need them and to find ways to give back to the community twofold.

My subcontractor agreement with Future Footprints is another such opportunity -- it is not a merge with Future Footprints, and Transformations will continue to exist as its own separate entity.  Eszter is a passionate and forward thinking conductor.  She has been courageous in ways that I have not been and has succeeded in opening up her own CE centre -- the first private CE centre in Australia and dare I say one of the most thriving private CE centres in the world.  I have lots to learn from her in addition to a skill set that compliments what her business already offers.  There is a government funding opportunity that is available for children under the age of 7 with disabilities here in Australia called Better Start -- and somehow Conductive Education has been included as a service that families can use this funding for.  Eszter has figured how to work the system and her business is listed as a service provider for Better Start -- brilliant, especially for children living in Adelaide who are able to access her centre.  My subcontractor agreement with Eszter will allow me to offer CE funded by Better Start through Future Footprints Conductive Education here in Sydney.  Another conductor, Gabi Monus, will be doing the same in Canberra.  Good for families looking for CE, good for CE, good for Transformations.

And yes, the demand may well be bigger than what I can currently meet -- even better -- I'll gladly hire another conductor.  There were months when the Enable Me program was bigger than I could handle on my own and I gladly subcontracted another trainer to help me.  When one is excited and passionate about what they are doing there are ways to find extra hours in the day and make things happen.  We -- Eszter and I -- are of course growing our businesses -- but we are also working on what we see as the bigger picture.  We are working for Conductive Education and for the adults and children who want to access it.  And yes, of course if Better Start funding is good for business, it will make it easier for me to get adult CE groups running again.

And while we are on the topic of adult CE, yes -- Better Start is only for children under the age of 7.  But those of us following changes to disability services in Australia and getting excited about the pending NDIS (National Disability Insurance Scheme) see Better Start as indicative to how the NDIS might run -- and more importantly, indicative as to what services might be funded.  Wouldn't it be amazing it Conductive Education was one of those services?  Showing demand for CE, having various CE programs and styles of service provision in the private and the non-profit sector happening around the country, and demonstrating that families choose to spend their precious funding on CE as funded through Better Start is an important political move with NDIS around the corner for everybody with an interest in CE, not just for children under 7.

Please keep your questions and comments coming -- and thank you for your support and excitement as Transformations takes on this new challenge.  I have big plans for Transformations, and it is exciting times for Conductive Education -- watch this space!

http://www.youtube.com/watch?v=Ev2yO-OHc58&feature=related

Is it CE? YOU tell ME! The long awaited sequel - part 2

This posting is a continuation from my last blog entry.  Now where did I leave off ... insights gained, and lessons learned and reinforced from working conductively with SJ, a woman aged 63 with severe depression and a pervasive personality disorder presenting as extreme de-personalization.  I will set the scene by saying that in minute but significant ways I have had at least comparative success working with SJ - on days when nothing works, I have to remind myself about things like even if I couldn't get her into the shower today, the showers she has most days that I am there are the only showers that she has been able to have in months; that sitting on a chair beside the dishwasher loading dishes that I rinse and hand to her one by one might be the only way that she participates in normal daily life that week; and that the handful of times I have been able to help her feel safe enough to risk going outside of her house are the only outings she has had in months.  I'm not claiming that I have solved this -- not in any way.  I want to articulate how coming in conductively has been helpful when working with SJ and to write about other things relative to the practice of CE that working with SJ makes me think about.  So -- in no particular order other than as they appear in my jumbled notes here are some points to ponder.

I miss having a team of conductors, or a team full stop, around me to problem solve with and to debrief with.  I've been working on my own for a long time but I have been lucky in my years to have worked with some amazing conductors in amazing teams.  We often talk about the group as essential to CE -- it is not just the group of people participating that is important, but the group of conductors, with their different strengths and personalities and ideas.  People other than my fiance AR to share my moments of brilliance, my tiny successes, my catastrophic failures; people with like-minded approaches to talk it out with, so I don't take it home with me; people other than me to wind me up and give me the strength to go in there for one more round.  I am so grateful for my network of conductor colleagues all over the world -- your cyber support, ideas, and emails sometimes literally keep me afloat

It is such a basic thing -- we find a way for our clients to do for themselves instead of be done to.  There are carers who come in and help SJ out with shopping and cleaning and fetching her medications from the pharmacy but when I am there she participates; she does; she is active not passive.  Yes I help her, but only when she can participate, and if she is not able to participate I leave.  The motivating factor might in this instance be that she doesn't want to be alone, but she participates in some way every time I am there.  When she says it doesn't seem real, I reassure her that it is real and that it needs to be done.  The carers tidy around her and she hardly notices -- it further de-personalizes her to be cared for.  When she is involved and active in her own care she becomes more engaged
    I give her choices.  I always phone when I'm on the way to make sure she is expecting me and wanting me to come -- a note in her diary is as good as a wink to a blind man.  She chooses to let me in (or not to), she chooses to continue having me come, and she has a contract with me that says that if she chooses to have me there she is choosing to participate.  She understands that I only expect her to be the best that she can be in a particular minute (ie orthofunctional) and she trusts that I will adapt the task to suit her particular minute and thus enable her participation and engagement.  I remember in first year university we had a lecturer (Jayne Titchener) who explained the difference between forward chaining (starting a task from the beginning and learning each bit until you get to the end which might mean never seeing the end or having the success) and backward chaining (learning the last bit first to give the experience of success and completion of the task).  She gave the example of a child with minimal motor control learning to do laundry -- having to sort the clothes by colour and by fabric, then getting the clothes and the powder into the machine -- tasks some of the children we were learning about would not ever be able to do -- vs starting the teaching process by getting the child to push the button so that the machine starts.  I think about this when working with SJ -- what bits of whatever we are doing will she be able to do today, that will give her a sense of participation and achievement?  

    I know to start with what she can do and build from there instead of focussing on what she can't do; I know to play to her strengths.  I also know to have back up plans for my back up plans and to be able to adapt to her mood and moment.
      We work with the whole person -- when I first started I had case managers saying that I wasn't to engage in conversations about how SJ was feeling or about her depression -- I was just to go in there and promote exercise and activity.  Which really didn't work -- she already has this surreal feeling of disconnect and non-existence.  Imagine me going in there and saying never mind how you feel, today we are going to do 5 sun salutes.  Imagine me going in there and not ever finding out that the only thing that keeps her going is the hope that one day she will be well enough to be a good grandmother to the grandchildren she isn't well enough to see.  We know that you can't separate a person's physical self from their emotional self from their psychological self -- we approach people holistically - which should be wholistically.  We understand that the what of a goal is not motivating without the why of a goal and that good conduction relies on connecting to the why.

        I have earned SJ's trust.  This is invaluable.  I think back to those moments when a child takes their first unaided steps with you in the classroom, or when that adult agrees to get down on to the floor for the first time so that you can teach them how to get up, or when that person with MS stays back to tell you what they are most afraid of -- those moments when you realize that the person you are working with you trusts you and you feel the weight of that responsibility as well as the gift of that responsibility.  And you invest further in that teacher-student relationship because they have given you this trust and it enables you to give more when you are working with them -- to push them that bit further; you are in it with them for the long haul, you are no longer just someone that they pass on their journey.  It is terrifying; it is humbling; it makes me work harder and helps me get in there and try again

        I cannot imagine what it would feel like to feel disconnected and de-personalized all of the time.  SJ says she looks at things and they don't look real, they seem flat, she feels nothing for them.  I look for proof that she is real, that I am real, that things around her are real so that I can present them in a multi-sensory way.  I plan activities that have sound and taste and smell and touch.  Things don't look real but if we get outside to her garden and she feels the soil or the overgrown grass and weeds the tactile stimulation sometimes grounds her
          I know to reward effort not just the end result.  I know to notice and celebrate tiny successes and achievements.  Over and over again my mainstream personal training clients ask me if I always get so excited about tiny things -- and I think about some of the people I have worked with over the years for whom the tiniest achievement was actually monumental and how glad I am that I was taught by other conductors how to notice and celebrate these things.  It is something special that we as conductors do; it helps our participants see value in their efforts and personal achievements large and small, and a day full of celebrating every tiny achievement certainly makes my days a lot more exciting and wonderful

          I choose not to give up on people, and even when I'm disappointed in the session or in myself, I try not to be disappointed in them.  With SJ sometimes we need to acknowledge how things went in a previous session so that we can move on, but she knows that each session we have a choice; we either build on the success we had in the last session or we wipe the slate clean and move on.  There is no judgement -- the expectation is that she is the best that she can be in that moment and some moments are bloody awful for her.  We wipe the slate clean and move on.  I can think of children that screamed the roof off of buildings for the first week of CE intensive camps that ended up being the kid who made the most progress by the end of the program.  We don't stop working with somebody because they are difficult, or because they fail, because we know that all it takes is the right thing said or taught int he right way at the right moment that can turn things around for that person

          Be prepared to be a learner, not just a teacher -- the teacher and the taught together create the teaching -- I admit I'm not an expert in depression and depersonalization; I challenge her to teach me about it and to share her experiences so that I can learn to conduct her better.  Condutor SM encouraged me to get involved with a craft project that SJ had mentioned -- I was worried that I couldn't lead it if I couldn't do it and SM told me to let SJ lead, to give her something concrete that she could teach me as part of her session and watch her thrive.  We learn to listen to our clients, to let them lead the way.  It always made me crazy to work with strict data collection tools that rated the success of CE based on whether a participant worked towards their goal as you predicted they would -- because we know that learning can take any number of paths, and that when somebody learns something the potential for what they can learn next expands exponentially.  With SJ I don't have a specific goal or agenda other than active participation and engagement -- and I let her lead the way and travel with her, and we both learn along the way.

          I am hopeful that things can get better for SJ -- she despairs that there is nothing can be done.  This is the message she has been given from the medical establishment who have tried to do things that haven't worked and have told her that they have nothing left to try.  I am hopeful because I believe that there are things that perhaps can change within SJ, tricks she can learn to manage her disability, skills or strategies or ways that she can personally and actively be involved in fighting this disease versus letting it completely envelop her, problems to be solved versus coped with, something that she can personally do to make things better for herself versus lying in bed waiting for a magic pill to be prescribed.  I am hopeful because I have seen these transformations happen with other people I have conducted -- it isn't about the diagnosis, it is about the transformation of that person from one who is done to to one who does.  SJ despairs that there is nothing that can be done.  I am hopeful that things can get better, and that my hopefulness is just contagious enough that she gets a bit hopeful too -- because then I'll really be able to work with her

          Is it CE? YOU tell ME! - the long awaited sequel part 1

          In my last posting I wrote about working conductively with LE, an adult with autism. In this post I want to share some thoughts and experiences about working with SJ, a 63 year old woman with severe depression and a pervasive personality disorder presenting as complete disconnect from everyone and everything.

          I have been trying to write this posting for a long time -- I actually have several months worth of jumbled thoughts and notes that I have been keeping for when I was ready to write this, and in fact thinking about writing this has made it impossible for me to write anything else.  In a nutshell that is what it is like to work with SJ -- she is an energy vampire who on a bad day sucks me dry rendering me emotionally spent and making it hard for me to do anything else, and even days that are good by her standards are still very draining.  Working with SJ makes me doubt myself and what I have to offer personally and professionally.  Many of my sessions with her are complete disasters with no discernable positive outcome or flicker of success.  Even on our better days I have this overwhelming feeling of losing the war despite winning a battle, a feeling I have not had professionally since working with a close family friend with ALS in her miserable last stages of rapid deterioration.

          SJ started working with me several months ago through the Enable Me program and has since chosen to work with me privately, twice weekly -- this is an important detail as it is a very full on and intensive way to work with somebody.  She demands a lot of my mental and emotional energy.  I'm sure she will tell you it is no picnic having me turn up at her door twice weekly with my high expectations, positive determinism, hope, and cheer in the face of this terrible illness that has made the thought of getting out of bed let alone participate in normal activities of daily life seem impossible for SJ.  She might not have a physical or neurological disability but she is one of the most impaired people I have ever worked with - and that again is a big statement coming from me.

          I should add that I like SJ -- I like her a lot.  In the moments when the real SJ claws past the depression and de-personalization she is intelligent, witty, engaging, has a sense of humour, takes an interest in me and my other clients and my life, shows me photos and tells me about her life before this.  My main purpose most sessions is to help create enough of a gap in or a distraction from the black cloud so that the real SJ can claw her way out, even if it is only for that hour or a small part of it.  There are often days, and recently weeks where I have only seen the depressed and depersonalized SJ.

          I don't know if SJ believes I can help her, but she would rather have me there than to get through her week on her own.  She has tried everything else -- every medication, several hospitalizations, several rounds of shock therapy -- and I guess my cheer and bossy insistance that she participate in life seems the lessor of such evils.  I don't know if I believe that I can help her.  I believe that supporting her physical health can only help her mental and emotional health, and we try to do this through basic activities like getting out of bed and moving, participating in anything regardless of how minute her participation is, having a shower and taking care of basic hygiene,  taking part in simple healthy cooking and eating something nutritious, and getting outside even for a few minutes.  SJ feels that she cannot do any of these things on her own, and there are many days even with me there that they remain impossible for her.

          I don't know if I believe that I can help her, but I know that I believe it is worth trying.  Her case manager believes that she will not get better and that I should brace for the worst -- he told me that there was nothing that could be done and that I could at best hope to make a moment better.  The mental health team feels that she is not responding to their intervention and the other day they said that they were supporting my work with her because it was the first time in a long time she had been willing to engage with someone even though they thought nothing would come out of it because nothing could be done.  My blood boils when I talk to these people -- how dare they write off a person, SJ, my client?  How dare they tell me that there is nothing that can be done just because they have run out of ideas? How dare they judge her potential based on their failure? How dare they pat me on the head when I'm excited about a tiny step forward or try to placate me by reminding me that this is how it is for SJ when I'm worried about a step in the wrong direction?  If they think I'm that silly and naive why the hell would the chuck me in on my own to work with her?  They have no hope for this woman, they do not believe that she can be helped or that it is worth trying, they 'gave her to me' as a way of clearing out their 'too-hard basket', and have stopped trying because she has not yet responded to their best shots.

          I believe that 'they' are wrong.  There -- I said it out loud.  Yes I'm 'just a conductor / personal trainer and they are 'the mental health team', and what do I know, but I believe that they are wrong.  I believe that they are blaming her for their failure and lack of solution options.  Even after awful sessions on very bad days for SJ I believe it is worth trying; and on days when I've failed to make a dent in her black cloud I leave wondering what else I could have done or said.  I certainly question what I have to offer her, and I'm not sure that I believe that I can help her, but that is not the same as not believing that she is help-able.  And I hear my mentor AB's voice in my head - 'if something doesn't work we find something else to try or another way to try the same thing - this is what conductors do'.

          If the student fails to learn, the tendency, says Feuerstein, is to blame the child: 
          'We have a stiff finger that goes only in one direction...  One of the great problems is to make this stiff finger more flexible so that it turns towards oneself, toward the teacher'.  
          The teacher has to ask himself, 'have I done all I needed in order to change this child?
          --Florence Minnis in The Transformers: The Art of Inspired Teaching (1990)

          I needed to get that out of my head so that I can write about the actual insights I've gained and lessons learned and reinforced from working conductively with SJ.  To be continued...


          Is it CE? YOU tell ME!

          When people ask me what a conductor is, I usually say something along the lines of "a conductor is an educator and re/habilitation professional that specializes in teaching movement strategies and skills to people with neuro-motor disorders such as cerebral palsy, Parkinson's Disease, stroke, acquired brain injury, MS".  Who am I kidding - I don't usually say that, I always say that.  Sometimes I substitute "disabilities caused by conditions like..." for "neuro-motor disorders such as...", but the limited list of conditions and the automated emphasis on movement strategies and skills is always the same and I no longer really believe that this is what a conductor does.  People rarely ask for more details - let's face it, that's a pretty good small talk conversation killer - and I am left with this empty feeling of a missed opportunity to elevate Conductive Education (CE) by talking about the subtle but essential and  essentially human aspects of what I do beyond teaching movement -- the conductive magic -- and its applications beyond the motor disordered population.

          Wait a minute - so am I saying that CE is not about teaching movement to people with motor disorders?  Yes - sort of.  In traditional CE people with motor disorders come to learn to move better and on the surface the obvious skills and strategies being learned are motoric.  And yes, I certainly spend the bulk of my time working through movement and teaching movement strategies and skills, though I do not limit myself to working only with people with motor disorders.

          However, teaching movement is only the obvious 'on the surface' part of what CE is, of what I do.  Below the motoric exterior, psycho-social change - conductive magic - is happening, not accidentally, not as a side bonus, but as part of my what I am purposefully trying to do, as part of what conduction is.  The movement and the magic are intricately tangled and inseparable.  It doesn't feel like CE unless that conductive magic is there too - those changes that happen under the surface when somebody starts to have hope, have confidence, to connect, to think differently, to believe in themselves, to problem solve, to be positive, to be willing to try.  Those changes don't always happen, even when somebody successfully achieves a movement related goal.  And -- perhaps more tellingly -- those changes sometimes occur even when somebody does not achieve their movement related goal, and these changes may in fact actually be pre-requisites for that person's success.

          When that conductive magic is there, regardless of the person's diagnosis or lack thereof, it feels like 'we are doing CE'.  Let's push the boundaries shall we -- here are some examples.

          Of all my clients, LE is the one that I feel most conductive with.  LE is 46, rather autistic and rather prone to anxiety.  His mind imprints memories and experiences differently to how yours or mine does.  This makes it really difficult for him to un-learn or un-associate experiences that leave a mark, particularly negative experiences such as a recent fall on a slippery surface.  He also has vertigo -- so understandably going down escalators is a major trigger for his anxiety, especially considering he is looking down at his feet to avoid tripping or slipping.  LE's carers and family were finding it impossible to take him on recreational outings as the panic attacks (which included screaming, crying, and repetitive self injuring at the top of escalators or on reflective floor surfaces) were becoming unmanageable; LE was becoming more isolated and depressed.  My role is to help him regain confidence walking around the local shopping centre and on the escalators so he can resume going on recreational outings.

          Through strategic trial and error LE and I have worked out a system for managing escalators and shiny floors.  We choose a landmark on our approach to the escalator or shiny floor where we begin marching and singing (we started with 1-2 buckle my shoe because it was easy, subconscious, but LE has since informed me that he likes ABBA so we now march to the dolce tones of us singing 'Dancing Queen').  As we get closer (still marching and singing) I remind LE to keep his head up and give him something specific at eye level to look at - he repeats what he is looking at while still marching, looks down briefly to check his feet and looks at that focus point.  The marching never stops, the singing resumes and on we go.  If necessary LE knows to march on the spot for a few steps before stepping onto the escalator but doesn't stop moving or singing when at the top (the singing and the concentration needed to keep marching mean that the anxiety a.k.a 'bad thoughts' can't come into his head -- we literally are stamping and drowning out the anxiety with ABBA).  If LE starts to freak as we approach, with the simple command 'detour' we march away, regain composure and approach again.  If we are successful I am over the top with praise and high fives.  If we are not successful I acknowledge the effort, don't react to the panic attack (this takes an incredible amount of concerted energy on my part) and as soon as possible try again until we have a good one because I don't want to risk him imprinting a negative experience of escalators and panic and me, I want to leave him with a positive experience to imprint.

          Everything I say when I'm with LE is purposeful.  I don't know what bit of what I say might imprint in his mind, and he is echolalic (repeats certain things that are said over and over, sometimes with increasing volume) and has certain programmed learned verbal responses making his responses to what he is not repeating relatively predictable.  Which means while we are walking towards the shopping mall and the escalators I have time to get him repeating and affirming what I want him to be thinking.  It goes one of two ways.  I'll say 'LE, you've been doing really well with the escalators', he'll say 'well with the escalators, well with the escalators' (echolalia) or I'll say 'you are getting better and better at the escalators', he'll say 'yes I am' (programmed learned agreeing response).  Imagine the effect of me slipping and saying  'you don't seem scared anymore' and him repeating 'seem scared' or me saying 'no biting and screaming like last time' and him saying 'yes I am'.

          LE knows the system we are using -- his memory is very good -- so while we are walking we break down the task ahead and go through the plan step by step.  He knows what's expected of him, what is going to happen, and what the back up plan is.  I ask him to visualize it happening perfectly and smoothly, while we are walking and talking about it, and to try to imagine feeling brave and confident and strong and proud of himself - I don't know whether he understands these 'feelings' but he gives me these words back as part of the dialogue we have when we are talking about the system or visualizing doing it and I ask him he feels.

          I know it must sound odd, but it works so well to work conductively with LE - the manifestation of his autism lends itself so perfectly to working through repetitive intention and systematically broken down and practiced complex tasks.  Repetition of key words and phrases and systematisation of everyday tasks are weird for most people new to a CE environment but are perfectly normal to LE -- it's how he does everything.  Because I can manipulate the way he already uses language to affect his thinking, intention, confidence, ability and can use language so obviously to plan and structure his actions he becomes able to do things that seemed impossible to him and to those helping him.  I'm working with what he already could do - repeat things, memorize things, walk rhythmically - and using his autism positively instead of trying to stop him from being autistic.  His mom and carers have reported that he is managing better with them now and that he uses the exact system with whomever he is with, even 'explaining' it to new staff.

          Is it CE? You tell me!  I'll give you some more 'unusual examples' of working conductively and of variations on the conductive magic theme in my next posting.  In the mean time you can LOL while you think about LE and I marching our way onto escalators singing....        http://www.youtube.com/watch?v=REElUors1pQ


          "Yes, I am a dreamer
          For a dreamer is one who can find his way by moonlight
          and see dawn before the rest of the world."
          -- Oscar Wilde --

          Pounding the Pavement and other Life Lessons

          Yesterday I went for a run -- I run, but I don't love it; there are other things I'm much better at and would prefer to spend a sunny afternoon doing, but yesterday was different.  As I ran, I enjoyed the feeling of my legs moving beneath me as they moved me around Narrabeen Lake and appreciated being able to run.

          I remembered back to the first fun run I ever did, a 5km run fundraising for the Achilles Running  Club, a Toronto based running club supporting runners with disabilities.  Though only 5km, this run was a real struggle for me, and at some point during that run -- perhaps when a runner with a prosthetic leg or a blind person being led by a running guide or somebody pushing a wheelchair ran past me as I puffed and panted along -- I decided to get better at running.  I remembered back to my half marathon - I still remember the 'of the moment' contempt I had for the person wearing a shirt that said "the pain is temporary, the glory is forever".  I remembered to look around at the beautiful place where I was running, to notice the ducks and geese and kayakers on the lake, to run and smell the roses so to speak because yesterday's run wasn't about my running or my fitness, but about KH getting out and about in his scooter, something he hadn't done in years.

          KH had done half of his hard work already - it is a very difficult for him to transfer onto his scooter and then back into his chair that he uses at home hence it being years since he had been able to go scooting, but we had agreed that an outing would be awesome for our last session.  I have to tell you I've never seen a scooter quite like this - probably 20 years old with a little light switch to flick for forward or reverse, big crazy handles for steering like an old Harley Davidson.  When I took the cover off of it I actually doubted that it would go at all.  KH had asked (via his AAC) me how my running was, but I was more worried that I wouldn't be strong enough to push it if it choked en route.

          Off we went -- and yes I had to jog, run, and sometimes even sprint to keep up with him, especially on the wide flat path around the lake, and even on the bush trails that were barely wide enough for the scooter.  Kids stared at us, not the usual curiosity filled way that kids often stare at someone with a disability, but in the 'that's so cool' way adults look at a cherry red convertible mustang  -- KH's wheels were by far the biggest and coolest anywhere around.



          As I said, I enjoyed my run, spurred on by KH's sounds of glee when I couldn't keep up or started getting puffed, wanting to keep up with him to witness his enjoyment of the day, to be close enough that if he wanted to say something I could get his communication aid out for him.  I was grateful that I had worked on my running enough over the years since my first fun run that on KH's day out he didn't have to be held back by my limited running ability - and also grateful that KH wanted to stop and look at things so I had a few seconds here and there to catch my breath.

          As I ran, I remembered SE learning to drive his very fast chair with his very limited right hand so that he could learn to play wheel chair tennis; he needed to hold the racket with his left hand which was normally his driving hand.  SE -- the mischievous show pony that he is -- ran me hard that day too, in a little park where the session could be watched by my colleagues, clients, and acquaintances.

          As I ran, my mind drifted to other random fun moments I've had with people in wheelchairs.  Not CE moments, but just random slices of life moments.  I thought about getting trackside at the Indy 500 with MG; I though about SP after a few drinks taking her wheelchair down a small set of stairs where a portable ramp had been a few hours earlier; I though about the fun CW and I had while she was learning to cross busy roads in her new foot driven wheelchair; I thought about KW bringing a batch of his very special brownies in on his birthday to enjoy with the rest of  his MS group (yes I'm serious - all 5 of them were off chops and giggling through the whole session); I thought about getting around the wild markets of Hong Kong with M&LD; I thought about KD getting her wheelchair stuck in a pile of woodchips while geocaching in a cemetery; I thought about training FG for her Antartica adventure that included climbing down a ladder into a zodiac to get to the icebergs; I thought about YG coming out to cheer my dragonboat team on wearing her team shirt and hat; I thought about SP in the back of an ambulance on the way to hospital with breathing difficulties suddenly coming good when she realized how sexy the doctor treating her was.  As I ran I remembered my grandmother in her wheelchair, friends with several teenagers in her neighbourhood.  The kids came to shovel her driveway or help with the garden knowing that she loved rock concerts could take a carer with her - Ricky Martin, the Spice Girls, Savage Garden were amongst her favourites.  This is the same grandmother who concluded that people in wheelchairs don't get hugged as much as other people so decided to change that, throwing her arms up and insisting that everyone (the mailman, the bus driver, everyone) hugged her.

          As I ran, spurred on by KH's vocalizations, laughing as KH waved at admiring kids we passed by, I thought about when I first met KH (detailed in my previous blog posting); that first day I got caught up in his disability and circumstances but yesterday I was hanging out, having fun, celebrating being alive with an amazing person.  I'm forever grateful for the amazing people I encounter in work and in life, and for the free attitude adjustments they offer.    And, I'm grateful for clients who become friends, who let me into their lives, and who share their moments of adventure and misadventure with me.

          Conducting when it's Confronting

          I try not to roll my eyes when talking to some well meaning person about 'what I do for a living' and 'whom I do it with', when with their hand on their heart and their eyes welling up with tears, they tell me what an angel I am, express marvel at my patience, or assert that they themselves could never do it though they know it must be incredibly rewarding.  It angers, frustrates, and outright amazes me that when people see the people whom I work with, they see my humanity and not my client's, as if my client's humanity is shrouded by their disability.  But I try not to roll my eyes.  I try to respond in a way that is not pedantic or condescending because for whatever reason it is human nature for people to be frightened by those who are different, to prefer not to deal with the reality of their own mortality, to be generally uncomfortable in their own skins, and to feel confronted by the very physical world of disability.  I understand that for the most part people mean well but feel confronted.  And yes, disability can be very confrontational - even for people with disabilities, caring for people with disabilities, or working with people with disabilities.

          Today I sat in my car sobbing after my initial consultation with KH because his story and his circumstances were confronting; because I already cared and wanted to help him but didn't know if I could, or where I would start.  I'm telling you this because though I love what I do, sometimes it is hard and sometimes it is confronting because life and disability and disability services can be unfair, awful, and heart breaking.  I've never really been good at the whole 'professional objectivity keep people at arms length thing' - and I accept that sometimes that means having very human, emotional gut responses to people that I meet, or things that happen in the lives of people I work with and genuinely care about.

          On days like this I miss working with my very good friend and conductive mentor AB because we talked about this stuff; she validated my feelings of confrontation and was not afraid to show me hers - such a precious rarity in a senior professional and so important to my professional development.  On days like these I think about how AB mentored me - no actually, how she conducted me - from these moments of professional despair back into our classroom refocussed and ready to confront what had confronted me.

          I often try to imagine what AB would tell me in moments like those after I met KH today.  AB would say "we have to try" no matter how impossible something seemed. If something we tried didn't work she would say "we have to keep trying until we find a way".  Today when I told KH that I didn't know how far we would get but that I wanted to try, he typed out that he was expecting me to tell him that there was nothing that I could do, like everybody else told him and that he was happy to try.

          If I told AB I wasn't sure if I could help someone, she would say "of course you don't know, you have't tried.  But you are a conductor", she would say with pride, "we try, this is what we do".  She is so right - though there may be similarities from one person to another, each person, each body, each disability is different.  We improvise, we think on the fly, we make it up as we go along, and over time and with experience start to refine this 'trying'.

          If I told AB I didn't know where to start, she would ask me about what KH could do, and would remind me to start there.  Though I'm still not sure exactly how or where I will start with KH, I am amazed that in his 50 plus years of living with his brain injury he has found ways to manage as much as he has, and trust that he will show me where to start.  AB would say "conductors don't have every answer, but that's ok if we keep looking -- this is what we have to teach the participants".  Thinking about KH again, I remind myself that sometimes this is also what they teach us.

          Today after I met KH, I sat in the car and sobbed -- it was confrontational and I was upset and I wanted to help but was scared.  I think that we need to talk to each other about these feelings -- I believe that they are a very real part of being a conductor.  I hope to be able to write something motivational and exciting about what conductive education has helped KH achieve sometime soon.  But today I'm writing to tell you that though meeting KH was confrontational, upsetting, and caused me to doubt what I had to offer through conductive education, after my imaginary debrief with AB this afternoon I am ready, willing, and excited about the opportunity to try.

          A Little Hope Goes a Long Way

          "For the first time in years I have hope" MR said this morning, after gliding beautifully up and down her hallway several times , swinging her arms and counting 1-2 as she stepped, stopping, correcting herself and starting again with control when she lost balance or stumbled. "I feel like I don't just have to cope with it by myself in my head, that there is something that I can do for myself and that I know what I can do instead of wondering if I can do this or should do that".  MR is a single mom with multiple sclerosis (MS) whom I have been working with intensively with over the past several weeks through Phase 2 of the Enable Me Project. When I met her she was beside herself with depression and fear about her worsening walking and balance and not psychologically ready to look at a walking aid.  She was completely isolated, only leaving the house to get her son to school and do the groceries because it was easier not to go anywhere than to risk falling.

          Enable Me Phase 2 is a shorter initiative that was tacked on to the end of the Enable Me Project -- again investigating the same pro-active intervention opportunities but this time for a very different population. Where in Phase 1 the participants were elderly people living independently in the community, the participants in Phase 2 are already 'in the system'.  They are people with disabilities that are already clients of Community Care Northern Beaches (the organization running the research project) either through Community Care's community living program or through their 'older parent carer' program.  At first the case managers were not sure whether it would be appropriate to have a personal trainer involved with this population group, but the case manager that I worked under in Phase 1 argued my case, told them that I was 'specialized' and had experience in disability and told them what she could about Conductive Education.  It helped that of all the clients in Phase 1, the ones who had the most success with 'personal training' were surprisingly the 'frailest' and most 'challenging' (translation - the people with chronic conditions such as stroke and back problems or early stage Parkinson's, or otherwise in the 'too hard' or 'nothing can be done' basket - exactly my cup of tea).

          In Phase 2 of Enable Me -- so far -- I have been working with adults with MS, cerebral palsy, stroke, acquired brain injury, intellectual disability, autism, and pervasive anxiety disorder on a range of goals as varied as the individuals and conditions setting them. I am spending much more time as a conductor and continuing to test the boundaries of CE as an approach to working with people with and without motor disorders.

          Don't get me wrong -- I'm glad for the tools of my personal training trade; MH has an acquired brain injury but her main goals are around fitness and weight loss; a few minutes of yoga are the difference between LE losing it completely or being able to recover and make it through the session after a massive panic attack; JW certainly has cerebral palsy but wants the strength to swim a lap of an olympic pool.

          More importantly, I'm glad for the philosophical tools of my conductor trade from which I approach people.  I'm glad that I can see the person and not just the problem; that I seek the why that underpins the what of their goals and that I value it; that I have the patience to wait for sometimes minute results and that I never get tired of wildly celebrating achievements large and small; that I appreciate the effort and determination it takes to stand up and try again and know to reward effort that when there are not positive results; that I know I need to equip people with flexible and dynamic tools which they can use and modify as and when needed instead of with a list of meaningless exercises to do every morning.

          MR really did walk beautifully this morning; it was the best I have seen her walk in the 7 weeks we have been working together. She seemed to glide down her hallway, swinging her arms, stepping evenly while counting 1-2-1-2, stopping to make necessary corrections without me having to say anything. When I told her so she beamed with pride -- which certainly suits her better than the despair she wore when I first met her -- and told me that her daughter and her friend had both said her walking was looking better, and that she had been out to meet her girlfriend for lunch for the first time in months.

          I'm glad that I could teach MR some core strengthening exercises that she could practice on the swiss ball.  I'm really glad that because of Conductive Education I knew enough about MS and ataxia to be able to help MR with her walking and could help her make sense of her ataxia.  I'm most glad that because of the way that CE has taught me to approach people I knew that the pride and sense of achievement I saw on MR's face was more important than the fluency of her walking, and that the real achievement was not that she walked well enough that her friend noticed but that she had the confidence to go out and to meet her friend.  And I'm over the moon ecstatic that for the first time in years she has hope because my years in Conductive Education have taught me that hope is transformational; it influences potential and outcome long after a person stops 'doing CE' because that person believes in possibility and in herself again.

          MR will be discharged from Enable Me next week. I would worry, but I know that she leaves with a pocketful of tricks and techniques, and enough hope to know that it is worth using them.

          “We are all in the gutter, but some of us are looking at the stars.” 
          ― Oscar Wilde, Lady Windermere's Fan

          A letter to my personal trainer alter ego from my inner fat kid

          I have been battling my little demons for the past several weeks; having ridiculous and self defeating conversations in my head, hashing through everything over and over again.  Avoiding mirrors, not feeling good in my clothes let alone my skin, not wanting to be at the gym, sabotaging my efforts to get back in the saddle.  I was home for a few weeks; I had mentally prepared for a few weeks of being out of my workout routine and made good on my commitment to myself and to my personal trainer about being sensible about food choices most of the time and having a few guilt free holiday indulgences.  I did not plan for a random shoulder injury and a few more weeks out of the gym when I got back here while I rehabbed, and I lost it a bit.  Food cravings creeping back in out of nowhere; week night sneaky drinks; cheat weekends instead of cheat meals.  A couple of kilos -- and no, not muscle gain; not gaining brain weight from added wisdom -- a percentage or three more body fat.  In the grand scheme of things no tsunami or war or sudden loss of a loved one I keep reminding myself but in my personal and private little hell it has been frustrating and devastating.

          I usually have a darn tooting good attitude about myself as a personal trainer -- my clients see me go up and down and know that I'm human, and know that I understrand their struggle because from my personal experience I know how hard it is.  Been there, done that, bought the x-large t-shirt, worked hard and figured out what worked for me, traded it in for a med t-shirt, now take my hand, I can help you do the same.  In fact I have had many referrals through the gym from people asking after 'the not skinny trainer' -- and I have had good giggles with another trainer whom I work with who is a champion figure sculpter, we know our physiques attract clients to our business for very different reasons.  But when I am in a negative headspace, when my inner fat kid waddles to the surface of my conscious mind it all stops being funny.  Before I was a personal trainer I could go to the gym and throw around the weights to escape; put on my grumpy training face and my invisibility cloak and workout in the anonymous comfort of my little world.  As a trainer I can't be invisible; I can't even be grumpy.  And when I am indulging my inner fat kid I don't want to work out, feel like everyone is watching me and judging me, feel hypocritical working with my weight loss clients, see myself through the fat kid's warping mirrors and round and round we go on the merry-go-round of self destruction -- weeeeeeee.

          I have finally backed my inner fat kid into a corner and am feeling considerably better;  life is back in perspective, I am eating well and training again -- heck I can even get through my affirmations and gratitudes without argument or interruption from that nasty fat kid in my head.  But DF said I should publish this because people will relate, and HH said I should finish writing it to help me get it out of my system -- both are wise women, both have battled themselves on many an occasion, and both will have to accept my edited version because some of the things that my inner fat kid was saying don't deserve to be published.

          Fat Kid - Hey PT Lisa, can I talk to you, I'm having a rough time over here
          PT Lisa - Oh no, not you again.  Hey don't you have a personal trainer?  Can't you talk to Chris about this?
          Fat Kid - Yeah but I can't talk to him -- I'm too embarrassed; I'm sure he's already seen me all fat again and is already disappointed, and he'll just say let's get back into it and I can't train with him until I'm already back into it and I don't want to let him down...
          PT Lisa - Hmmmm -- as I recall Chris is always supportive and amazing when you talk to him.  Can't you talk to Alexander?  I'm sure I heard him call you beautiful today, he'll make you feel better?
          Fat Kid - He's just saying that to make me feel better and anyway I tried -- but I'm just making him crazy and besides he doesn't understand, he just has to look at a gym and he is perfect.  It's easy for him.
          PT Lisa - Wow.  Not even Alexander eh?  I guess I can go through this with you for the millionth time.  Sighs.  Hang on a minute -- I'm going to need a strong coffee before I deal with you
          Fat Kid - Skip the coffee -- let's go for beer or ice cream -- I know a good place.  I'm over this; I'm tired of fighting with myself, I'm tired of falling off the wagon and having to get back on, maybe I'll just give up the gym and the lifestyle and the personal training and open a gourmet ice-creamery
          PT Lisa - That's not very helpful now, is it.  It's not really what you want, you are no longer at home when you are the Fat Kid -- it you were you would be happy and wouldn't be harassing me in the middle of the night.  And besides, you know you get sick when you eat ice cream these days.  What do you really want?
          Fat Kid - I want to get to a point where a few weeks doesn't matter this much, where I don't fall off this badly and do this much damage, where the years of work don't get chucked in the bin by a few weeks of being off of my game.  I want it to be easy.
          PT Lisa - You know it is simple, but will never be easy.  It will always come down to daily habits, daily choices, food and lifestyle.  It will always be a fight, a balancing act between lifestyle and indulgence, and sometimes indulgence will literally tip the scales and you will have to get the balance back.  It would be easier if you could keep your attitude in check...
          Fat Kid - Hey! There's nothing wrong with my attitude! It's just not fair, that's all.  Why should I have  to 'fight to get the balance back' when other people can just cruise.
          PT Lisa - Reality check.  Life's not fair.  And of all the unfair things life can deal, really Fat Kid, really?
          Fat Kid - I know.  I know.  Reneg. That was pathetic, even for me.
          PT Lisa - You know what will make you feel better?
          Fat Kid - Yes. No.  Don't say it.  You are going to tell me to go to the gym or have a salad with flaxseed oil or something
          PT Lisa - Wow.  You really are not ready to take this on -- maybe we should do this another time?
          Fat Kid - Yeah sure, maybe next week or next month.  But you better give me your credit card cause by then I'll need to buy a closet of fat clothes and a few tubs of ice cream.
          PT Lisa - Nothing wrong with your attitude at all -- carry on.  I'm out of here
          Fat Kid -  No wait.  Sorry.  I'm listening.  What will make me feel better?
          PT Lisa - Other than a workout and a salad with flaxseed oil?
          Fat Kid - Ha ha!
          PT Lisa - Get out of your head; give yourself a break from you for a few minutes or even a few days.  Do things that make you happy, relax, walk on the beach, laugh, have fun, lay off.  Stop being so nasty to yourself, be kind, be where you are, clear your head, and decide where you are going, gear yourself up and as HH said get the motivation and the headspace and the goal back in line.    Get back on the wagon.  And for heaven's sake stop busting Alexander's balls, and call Chris and ask for help.  Work on your affirmations, work on your headspace and the rest of you will follow.    
          Fat Kid - (getting teary)
          PT Lisa - But first crank this song, dance around like a lunatic, and for heaven's sake smile! (This is for all the bum chums and sisters out there)


          "Don't write a check with your mouth that you can't cash with your ass"
          Wise man from 'Sucker Punch'


          The Winds of Change

          Ready for some stream of consciousness and random thoughts?  I figured I'd better warn you that this is going to be one of those blog postings...

          The winds of change are blowing -- I can smell them, I can taste them, and my skin prickles with anticipation as the familiar winds gentle tug at me.  C'mon Lisa; let's go they whisper.  I feel like a happy dog with his head out the window of the car, catching so many different scents and sensations, looking and sniffing around, not quite sure where to look or what smell belongs to what.  Like a kid at an amusement park overstimulated and excited but not sure which ride to go on next.

          So many of my big decisions in life, especially in my professional life, have been made by me being privileged enough to be able to act on amazing opportunities that have popped up at perfect times; volunteer here, go to school there, take a job here.  Over the past few years I have been more active in creating these opportunities for myself -- I love what I do, how can I create a work environment that works for me, this isn't working, try this, tell the universe what you want, give more than you've got, put it out there, and try not to be too surprised when once you've put it out there it seems to happen.  I said I feel like a happy dog with his head out the window -- I have had a very good few years out here on my own, working for myself, living the dream, a successful business, a diverse and rewarding practice.  I'm happy, I'm fulfilled, but I can smell these winds of change all around me, I can feel them teasingly messing my  hair as they mess with my mind.  And they've been blowing for a few months now.  C'mon Lisa; let's go.  Where? What? Why now, universe, I'm happy?


          Some interesting and tempting job offers -- including an opportunity to work alongside AJ, an amazing conductor and friend whom I love and respect.  But the timing hasn't been right; the path hasn't been clear for me to grab these opportunities and run with them.

          I've just had a few weeks off, a wilderness camping trip in the Canadian Rockies with my partner in crime AR, a few weeks at home with my family.  The plan was to come back with a plan for what next.  But AR, and the mountains, and my niece were all a bit distracting, AR in particular, who totally threw me off guard by proposing!  And now I've come back, and am trying to settle in but that wind of change is flirting with me.

          There has been stuff and politics going on at the gym where I'm based and though it hasn't affected me directly I'm looking at other places where CE and my business (Transformations: Personal Training for Every Body) can better flourish.  As scheduled, the Enable Me research project will come to an end in December so I will have time to move in different directions.  I would like to remain allied and to work in support of Fighting Chance -- though they have shifted focus away from funding private intervention they remain committed to CE and their new ventures are nothing short of jaw droppingly awesome.  And the NDIS promises to radically reform the disability service industry in Australia.  And, an old comrade (JB - the manager who hired me to come out to Australia back in 2003) called to give me some important news -- CE run by conductors will be funded by the "Better Start Early Years" funding initiative -- seriously?!?! -- government funded CE in Australia?!?! totally out of the blue awesome again!  The entire document is worth reading but if your attention span prefers, the CE mention is on page 9:  http://www.fahcsia.gov.au/sa/disability/progserv/people/betterstart/Documents/operational_guidelines_spp.pdf

          I only have vague understanding of the implications of these opportunities; I have ideas; I can see the forest but I'm one for counting the trees and the whole picture and the details are just not there yet.  And as patience is my missing virtue, it is hard to sit back and let things fall into place, especially when that wind is blowing; like I said, a happy dog, with his head out the window, sniffing out opportunities.  Like a kid at an amusement park, excited and overstimulated, ready to get off of this ride and onto the next but not patient enough to wait in line.  C'mon Lisa.  Let's go.

          "This indecision's bugging me..."
          --The Clash  

          "Always look on the bright side of life..."

          Dear Shane --

          I've just come home from your funeral -- I have to say, you would have loved it.  There were so many people there that the entire side courtyard beside where there service was was filled, and people were sitting in the aisle and standing in the vestibule.  Your mom kept busy consoling everyone else and taking care of KD.  She managed to find a wonderful celebrant who made people laugh and smile.  Jordy and the other readers read pieces that reflected your humour and spirit.  The eulogies from Laura and your Auntie Joanne were full of beautiful 'Shane-isms' that reminded everyone about what is important in life, about what knowing you helped us know, and people laughed out loud through their tears and applauded the speakers.  And even special little treats to make a conductor happy -- Eddie walking all of the way to the front to place his flower, CW and KD driving their chairs independently again.  And, thank you very much Shane and James Valentine,  I'm still singing "always look on the bright side side of life" -- and if I'm singing it so should everyone else, right?

          http://www.youtube.com/watch?v=WlBiLNN1NhQ

          Beautiful music, beautiful music.


          At the end of the service the celebrant spoke about how one of the things that grieving people do is give themselves a hard time about would haves and could haves and should haves -- and it is so true.  Earlier this week I found myself wondering if there was something I could have taught you through CE that would have made a difference, that could have helped you.  I spoke to KD, who was also giving herself a hard time, and consoled myself while I consoled her.  It isn't about what would have and could have and should have been done, there is no fault or blame; it was your time.  We are saddened; so very very saddened; but as you would have wished, today our hearts were filled with love and joy as were were reminded how precious life is.

          The celebrant urged us to remember and to share -- and I found myself remembering our time together in CE -- you and your mom and Jordy and Greg and Rebecca and me rolling around on the floor, you directing traffic and trying to stay out of the way to avoid being crushed as we all tried to figure how to get Greg back on his back; you and Greg laughing at me in my twisted yoga positions trying to facilitate between you both at the same time, the sessions when it was just you and your mom and me, with you teaching us both how to facilitate certain movements and stretches, and telling us to push more and reassuring us that we weren't hurting you.  I found myself remembering the mature, adult conversation we had when you told me that you knew that you could still benefit from CE, but after a long day of bus rides and CAS, and with your cough being what it was, you weren't looking forward  to CE in the evenings, and that you found Bowen more beneficial because you could relax with it.  I agreed that taking a break was probably the best thing.  And then we had a hilarious 'discussion' about who would be the one to have to tell your Mom.

          And I thought about Fighting Chance http://www.fightingchance.net.au/home.html -- a charity set up in memorandum of your dad and now your legacy -- 'because everyone deserves a fighting chance'.  I hope you know how many people have already been helped and how many more people will be helped because your mom and loves you so much that she is willing to fight to make the world a better place for other people and their families; her love for you extends far beyond you and allows her to empathize, reach out to, and love so many others.  I am so grateful that through you and CE I have found myself included in this embrace -- she is an amazing woman Shane.  Please keep an eye on her from wherever you are.  Some people wonder how they can possibly make a difference, get overwhelmed, and end up doing nothing -- but not your mom Shane -- she loves you so much that she moves mountains while everyone else stands around wondering if there is a pebble small enough that they can throw.  And with Jordy and Laura fighting at her side the vastness of your legacy is still to be seen.  Today at your funeral, in true civil riot spirit, we sang "we shall overcome" -- and as we were reminded to support Fighting Chance and Kairos I, like so many others in the room, felt my commitment to you, to your family, and to your legacy Fighting Chance.
           "Take up our quarrel with the foe:     
          To you from failing hands we throw 
          The torch; be it yours to hold high."
          -- John McCrae

          I'm heading home to visit my family in Canada tomorrow -- I was so sad to say goodbye to you today Shane, but I am so glad that I could be at your funeral.  You have reminded me to hug everyone just a little bit longer and to enjoy every precious moment.  So Shane, since you loved music so much, here is some Canadian music for you.  This Neil Young song always makes me homesick but in a nice way --  ..."dream, comfort, memory to spare, and in my mind I still need a place to go, all of my changes were there...".  For me, it is about the sweet pain of memory, and about coming home, and about change, and about embracing the helplessness we all feel about life sometimes; when K.D. Lang first sang it, it was because Neil Young was sick and she was filling in for him.  In her introduction she talks about him as someone who has maintained his integrity and his uncompromising vision and purity -- in this spirit I dedicate it to you and to your Mom.  


          Unsweetable

          This was meant as a response to Andrew Sutton's post on Conductive World -- but I got excited, wrote too much for it to be an acceptable response length, and have decided to repost it here.  Please see Andrew's original posting and hopefully you will find further discussion here: 


          Conductive Education: who is it for? -- Andrew Sutton


          In terms of suitability -- or sweetability -- I agree completely.  For me it has never been about whether a person is or is not 'suitable' for CE, but I feel that it is appropriate to ask whether for a particular person and in that particular instance CE is appropriate for them.

          For example
          1.  There are some people that are looking for 'a magic pill' -- and whether or not the conductor feels that the person can learn and benefit that person might choose to continue to pursue their miracle elsewhere when they realize that CE involves hard work over time.  
          2. Just because CE has been right for a person at sometime in their life doesn't mean that it is always right for them -- people have to choose depending on where they are at whether they want to work this way.   In fact Shane, Sue O'Reilly's son said that he preferred Bowen therapy for now because he wanted something gently and relaxing not something that required him to work hard when he was unwell and tired.   He will be welcome back if he chooses later, and maybe I'll learn something from Shane about Bowen 
          3.  Sometimes, for whatever reason the relationship between the conductor and the participant is not conducive to a productive, positive environment for either person.  If there are 10 conductors and lots of options in the schedule there might be an other solution, but when you are running a small program by yourself accommodating a person might not be viable.  I have had people refuse to work with me or with other conductors; I have had a person that none of the conductors would work with because he was so vulgar and inappropriate.   

          There are other factors too -- everyone might be suitable for CE, or as I prefer to say CE might be appropriate for everyone, but I think that conductors should have the choice to say 'this is where my comfort zone is, this is where my experience is, this is where I know I can be successful'.  CE might be suitable for everyone, but conductors tend to be specialized and that shouldn't be a judgement on their practice.  That said, oddly enough, I have had a lot of criticism from conductors senior to myself because I have 'specialized' in the 'weird and wonderful' or the 'too hard basket'

          I'm quite proud to say that in my time as a conductor I have only twice said 'no' to trying with somebody.  One was a man in his mid nineties with advanced Parkinson's and rapidly progressing Alzheimer's who was not only blind and deaf, but also had never been English speaking.  Had I met this family now, with my practice being private and more outreach based I would have offered to work with him and the family in their home but I did not think my classroom environment was appropriate.  The other was a young man with late stage leukodystrophy malacia.  I remember him and his mother clearly as if I had met them yesterday  although it was 10 years ago.  I couldn't make contact with him, couldn't get a response, had no idea where to start, was terrified of the mother's desperation and conviction that he was still there, and as you said Andrew, I had no idea where to start or what to do.  In my inexperience I told that mother that CE wasn't suitable for him and I instantly regretted it and still feel guilty about not trying, and again now, with the option to work with him in his home I would like to think that I would try.

          In terms of 'assessment' - I don't assess, I consult.  I meet with a person, let them get a feel for me, try to see where they are at, see what they are looking for, work out where to start, what I will need, establish the relationship and build trust, collect relevant information.  I never charge for consultations -- in private practice people are spending a lot of money for my time and need the consultation as much as I do to decide if CE is 'suitable', if I am the right person for them at that moment.

          As you know, I also work as a personal trainer, and I have the opportunity to 'conduct' able-bodied and elderly people.  Sometimes this occurs subtly -- which to be honest is nice; I don't have to try to explain what CE is, I just approach a person or their session differently.  I also have able bodied gym clients who have taken an interest in CE, 'my other life', who I discuss pedagogy and CE with, who immediately pick up that I 'CE' them, and like it.  It is actually incredibly interesting and amazing to see what it is like to teach movement and problem solving to people not restricted by motor disorder -- it helps me understand things better regarding motor disorder.  People give me words like -- 'I just don't feel confident' and I better understand the role of thinking and perceiving in skilled movement


          More about Conducting "Enable Me"

          I know that my role in the "Enable Me" project is personal trainer / exercise lady.  However, I have been switching hats a lot lately -- mid session and discreetly taking my personal trainer hat off and slipping my conductor hat back on, barely stopping to notice how comfortable it feels, but noticing the change in my tone, the way sets and repetitions of exercises give way to rhythmically intended tasks, the subtle stylistic changes in the way the session is delivered.  The people I work with in this project are in their eighties -- if they notice the hat change they don't react though they certainly respond.  Whether what I am doing would look and sound normal in a CE group but seem a bit odd in the gym is irrelevant to these people for whom the concept of a personal trainer is as foreign as that of a conductor.

          Don't get me wrong -- I am passionate about how valuable exercise is for people of all ages and abilities and firmly believe that exercise helps people stay strong and healthy and can actually intervene with what is often presumed to be an inevitable part of the ageing process.  But there are times when what is needed and what is more appropriate in a given moment or over a few weeks of working with a particular person is Conductive Education -- the learning, the structured approach to problem solving, the way of breaking complex movements into manageable segments, practicing them, and stringing them back together as fluent, purposeful movement, the use of speech and rhythm and intention and motivation as facilitation -- in other words the unique tricks specific to the conductive trade.

          Mr LH's file says that he has had a frozen shoulder, has had a few falls, and has mild cognitive decline.  In reality Mr LH's movement and cognition is characteristic of something in the Parkinson's plus family of conditions -- I of course wouldn't try to guess or diagnose, that is certainly not my role, but I am pleased that the case manager and physiotherapist accept my experience based hunch that there is something neuro-motoric going on and have written a letter that Mr LH can take to his GP recommending further investigation.  I am even more pleased that Mr LH has spontaneously started rhythmically saying tasks and counting with me (it is often hard for me to get people to count and say tasks in individual sessions, especially if they have not experienced the power of rhythmical intention in a CE group); I am even more pleased that when he counts he can walk and swing his arms and get up from a chair and coordinate complex movements.  I hope -- as I often do about my 'hunches' -- that I am wrong and that there is no neuro-motor disorder creeping in.  Without my training and experience as a conductor I would have no entry point for working with Mr LH -- I wouldn't know where to start.

          Mr GL had a major stroke 15 years ago -- at the time he was fit and healthy and his stroke baffled his medical team and shocked Mr GL and his family.  The 'Enable Me' case manager wasn't sure if this was something a personal trainer should be involved in and called to chat with me about how frail Mr GL was and about his increased risk of falls.  I reminded her that I had many years of experience working with people after strokes in my previous life as a conductor.  Today Mr GL and I had our first session -- within minutes it felt like we had been working together for years.  I knew right away which tasks would work and what tricks to start him with, where to put my hands, where to push him, what it must have felt like for him to have his posture and symmetry and weight bearing corrected after 16 years.  I saw his eyes light up when he conquered a task that moments ago had seemed impossible -- a few moments and a little conductive magic make a big difference when those moments are spent practicing and learning to apply nifty little CE tricks.

          There have been a lot of people in the 'Enable Me' program that have been deemed too frail for personal training and who have instead received physiotherapy only instead of a combined approach -- there are a lot of people in the 'Enable Me' program that I would have been able to help if I had been given the chance to work with them.  I got the contract with the 'Enable Me' program because of my work as a Conductor -- somebody whom I used to work with at the local cerebral palsy centre referred me and people involved with the program saw me working at the gym with people in wheelchairs.  But I am contracted as a personal trainer, and what I bring to the table as a conductor is not fully understood or recognized, and therefore opportunities to help people as a conductor have been missed.  At this point I do not believe that Conductive Education will even get a mention when the reports about the 'Enable Me' project are written up.  I hope I can correct this but I am just not certain it will happen.   I wish that when the contract was negotiated I had had the guts to stand up for Conductive Education instead of just being glad for the opportunity to take part.

          Over and over and over again I hear people relate the advice they have been given by well meaning professionals -- 'you have CP / MS / PD / stroke / old age / whatever, there is nothing that can be done, accept it'.  That is just not how we think in Conductive Education -- because I am a conductor I have a place to start and a unique bag of tricks and conductive magic, but more importantly I have a conductive attitude that makes me believe that there is always something that can be done, something that can be learned,  that it is worth trying, so I do start, and start again, and try something new if one thing doesn't work.  I'd like to think that I am the same when I am wearing my personal training hat -- and I know that if I am it is because that conductive attitude is so much a part of me now, or because no matter what role I'm in, I'm always wearing my conductor hat.

          http://195.122.253.112/public/mp3/Beatles/14%20Let%20It%20Be/The%20Beatles%20-%20Let%20It%20Be%20-%2010%20The%20Long%20And%20Winding%20Road.mp3

          Free to be me

          This morning I sat in the sunshine after my yoga class, and thoroughly enjoyed my still warm cinnamon and raspberry muffin and even warmer hot chocolate.  This in itself is an achievement.  More often than not, for me the enjoyment of such a moment is negated by feeling guilty about eating something I probably shouldn't be eating, or by biting in and realizing that indulging in a fleeting craving is so completely out of line with what I want for myself that I'm put off of eating it, or by analyzing the macronutrient contents and calculating what that indulgence will do to my bottom line which for me literally is my bottom.  For the most part this is actually a good thing for me -- the guilt and the mental and psychological drama are seldom worth the muffin, and knowing this helps me make better minute by minute and meal by meal choices.  Don't get me wrong -- I love food.  I really really love food.  I have a great relationship with food -- a much better relationship than when I ate whatever whenever, and I am much happier and healthier as a result of learning to make better choices.  As a personal trainer I always tell weight loss clients to look for balanced eating that is sustainable forever, with occasional guilt free 'cheat meals' and indulgences.  As a real person who always has and always will struggle with my weight and with the headspace that comes with struggling with your weight over years, I appreciate that even when the eating is right, until the headspace is right the struggle with weight is one waged mentally and heavily worn psychologically, regardless of what is happening physically and aesthetically.  For me, eating well comes fairly easily now; the headspace, however, takes a lot more effort.  That is why it was an achievement to simply sit in the sunshine and enjoy my still warm cinnamon and raspberry muffin and even warmer hot chocolate.

          The muffin and the hot chocolate weren't actually part of my plan for this morning -- the plan was to powerwalk to yoga, have a quick and suitable protein snack after yoga and then head up to the gym for a  huge workout to make up for one that I had missed earlier this week.  But the sun was shining, and on the walk in I'd stopped to look out over the horizon where a bunch of surfers were gathered -- I expected to see ocean and I got to see a whale, which is clearly a good excuse for being a few minutes late for yoga.

          And the yoga teacher, FF, is wonderful.  He is Italian; his voice is calming, gentle, and reassuring even though he speaks quickly and passionately.  He uses phrases like 'big time, big time' when leading the yoga which makes me laugh and relax.  I love hearing him call the yoga poses by their Sanskrit names through his Italian accent -- it helps me bring my mind back to what I'm doing.  He knows me well enough to be laugh at me (just a little) when my ego clashes with my body and my breathing and I fall over in a tangled heap.  He encourages the class to listen to their body and mind and makes the yoga work for us as individuals.

          When FF is teaching I don't feel like a yoga failure because I haven't worked out the whole meditation thing.  Instead of feeling stressed out about not being able to meditate and getting impatient and twitchy and wishing that the class could be over or sneaking out -- I spend a few minutes with a gratitude practice.  I have been trying to make a habit of thinking through what I'm grateful for for a long while -- it is crazy that this is something that I have to try to do when there is so much to be grateful for.  I have to admit that often it is almost a chore; brush your teeth, crawl into bed, try to concentrate on gratitudes before nodding off.  After a yoga class, they just seem to flow.  I am always amazed at how many grateful thoughts pop into my mind in such a short time -- getting to talk to my dad on his 66th birthday when we feared he wouldn't see is 60th, a phone call yesterday from my oldest and dearest friend, waking up early for breakfast and coffee with AR, falling asleep talking about our upcoming holiday, getting paid to do work that I love in my business which is flourishing, a whale seen while walking this morning, a sunny day -- all in a matter of a few breaths.

          I love the feeling of being all sweaty, stretched out, and bathed in gratitude.  I leave the studio -- the sun is shining, the sky is blue, and I feel happy -- and as I'm walking towards the gym I smell these muffins, fresh out of the oven.  The moment was right and I was in the moment.  The headspace was right -- and I knew that I could indulge and enjoy guilt and drama free.  So, this morning after my yoga class, I sat in the sunshine and thoroughly enjoyed my still warm cinnamon and raspberry muffin and even warmer hot chocolate.

          "The truth is, I do indulge myself a little the more in pleasure, knowing that this is the proper age of my life to do it; and, out of my observation that most men do thrive in the world do forget to take pleasure during the time that they are getting their estate, but reserve that til they have got one, and then it is too late for them to enjoy it"
          -- Samuel Pepys        

          http://www.youtube.com/watch?v=_26FOHoaC78

          References:

          Gombinsky, L. (2009).  "The Physical Me" in  Just Do It! Young Conductors in their new world.  Ed. A. Sutton and G Maguire. Birmingham, UK: Conductive Education Press. pp.11-17.

          A day in the life...

          Do you ever have days that you look back on amazed that so many wild and wonderful things can happen between leaving your house in the morning, and coming home that same night?  Days so rich in experience and life it seems impossible that they were only days?

          My day started with an initial consultation for Mrs PS.  Mrs PS has just joined the Enable Me pilot project and I will be her personal trainer for the next several weeks.  She will turn 90 during this period.  She has started to be a bit wobbly on her feet.  Her goals were to improve her balance and walking.  When I asked what 'improve' meant to her -- she said that she wanted to feel more confident when she was walking, that she didn't want to have to think about every step as much, especially when she was turning, and that if she could learn some techniques that she could rely on she wouldn't have to work out where to put her feet every time she wanted to move.  Shhhh -- don't tell -- I switched hats -- this is a job for Lisa the conductor, not Lisa the personal trainer.  Mrs PS also said that since she fell -- and she quickly pointed out that over two years ago she had had one fall and nobody would let her forget it -- she has lost her confidence.  She is not the first person to tell me that it was hard to know if the walking difficulties were actually due to some sort of problem with the legs or were physical manifestations of lost confidence, but regardless, walking was a challenge.  I hope that if and when I turn 90 I can fathom the idea of some personal trainer showing up at my door with her exercises and equipment first thing in the morning.   I hope that if and when I turn 90 I still believe that that it is worth giving something a go, that things can get better, and that you are never too old to learn a new trick or two.

          Next I went to see Mrs BS -- we have been working on managing osteoarthritis and regaining core and leg strength and on mobilizing her hips and knees following hip injuries and replacements.  Mrs BS is motivated; she practices and works on everything I show her, and has made brilliant improvements, and is moving through the world relatively pain free.  Mrs BP is motivated; she is caring for a husband with a neurodegenerative condition who is in a nursing home and she needs to be mobile and well so she can help him.  I knew he was in a nursing home, I knew he had dementia, but today she told me about the neurodegenerative disorder, about how she tries to help him stand and how she gets him in and out of the car when she takes him out of the home for the day.  Next week and for a few weeks afterwards I will go with her to the nursing home to see if there is anything I can teach her to make it easier for her to help him; he won't remember that I have been but I hope that I can help her.  I will not charge her for my time -- she is a regular client, and I am my own boss and only have to be accountable to myself for how I spend my time.  Being self employed can be chaotic and challenging, but when things like this come up and I don't have to ask anyone for permission to do what I feel is right or justify decisions I make around the service I provide I am reminded that I am where I want to be professionally.

          I then went to see FG, a young adult with atheosis and dystonia.  FG is a force to be reckoned with -- this fiery redhead is a policy officer working at the state disability and discrimination legal centre.  I admit it -- I was very intimidated by her when we first met 8 years ago.  At the time she was a law student and disability rights advocate, and I a soft spoken and shy little Canadian conductor trying to get an adult program off of the ground.  Over the years we have had some heated discussions and debates; she has been an incredibly valuable resource, an advocate for Conductive Education, and a friend.  A few months ago she opted for deep brain stimulation -- electrodes implanted into her brain to help her manage her dystonia.  It was a brave risky surgery,  I believe that she was the first in Australia with cerebral palsy to have the implant -- but it proved the right decision and has helped her tremendously.  Until about a month ago, when she had a fall and one of the wires broke.  Today we were 'kicking it old-school' -- pulling out the old and almost forgotten tricks that we had worked out several years ago to make living with dystonia a bit more manageable.  Today we were talking about emotional rollercoasters; what it is like to struggle, take a risk, get better and then have to go back to struggling again; about getting mentally prepared for another round of risky brain surgery next month; about consoling worried parents when you are worried and scared yourself.  I find myself taking mental notes on dealing with set backs and hoping that when faced with adversity, like FG I can 'fall down seven times, stand up eight'.  I find myself thinking, once again, how lucky I am to have people in my life that teach me life's little lessons.

          From there I went to the hospital -- they had a special deal on just for me today -- I could see two clients for the price of one parking ticket.  CW has had her spinal fusion; her surgeon is very pleased with the way it all went.  CW looks a bit frankenstein-esque with a mad scar across the front of her throat and a another one from her head to the middle of her back.  Last week she pushed to be moved out of ICU -- as her husband put it, her brain was ready, but her body wasn't quite there yet.  Today, as CW said, both were ready and she had just moved into her room in the regular ward and is on the mend.  She is gearing up for a long rehab period, but already thinking about what we are going to work on first once she is out of the hospital.  CW's sister is a nurse and is very involved in everything to do with CW -- but she is currently on the other side of the world.  CW assures me that her sister is as involved as ever, calling ICU and getting the updates before CW gets the information.  I think about the special bond between sisters and wonder how my sister and my little niece way over there on the other side of the world are doing.

          I then went across the hospital to the spasticity clinic where I met KD.  She asked me to accompany her to this appointment; we were hoping to get some sort of understanding as to why her spasms have become so constant, so violent, and so painful over the past few months, and of what could be done to make things better for her.  The disability health adviser for the Cerebral Palsy Alliance and KD's house manager were there also -- everyone knew KD in different contexts and had different information to bring to the table.  As a conductor you never know how you will be received in a formal clinic at a hospital and whether you will be just dismissed because you are not a physio.  This doctor that we saw was amazing.  We were with him for nearly 2 hours answering questions and discussing what was happening and how things had changed for KD -- he listened to what everyone had to say and treated everyone with respect without regard for our professional disciplines and using the various perspectives to help him put a case history together.  Most importantly -- he spoke directly to KD , looked her in the eye, verified everything we said directly with her, and made it clear that he was genuinely interested in her and wanted to try to help her.  In fact when he saw the way that she was spasming he offered to come out to assess her in her home where she could transfer and lie comfortably and be spared the horror and indignity that being examined on a standard examination table would have meant for her.  I have never heard of a high ranking specialist offering something like this.  I was reminded that there are amazing people in positions of authority who are humane and kind and humble, and noted my surprise at this, and noted that I had come in prepared to advocate and fight for KD (and for the validity of my professional opinion), and, noted that my cynicism was perhaps an unhelpful attitude that required adjustment.

          Do you ever have days that you look back on amazed that so many wild and wonderful things can happen between leaving your house in the morning, and coming home that same night?  Days so rich in experience and life it seems impossible that they were only days?  Amazingly enough most of my days are days like this -- actually I believe that everyday can be like this for everybody -- if you take the time to experience and live and learn.

          "It is shocking to find how many people do not believe they can learn, and how many more believe learning to be difficult. Muad'Dib knew that every experience carries its lesson."

          --Frank Herbert (Dune)

          http://www.mashuptown.com/files/13_Bring_Me_Back_To_A_Day_In_The_Life.mp3

          Ask the Expert - or Putting the 'E' in 'CE'

          Before I had any real understanding of what Conductive Education actually was, I was interested in it.  I had the general idea that it had something to do with helping people with disabilities and I liked the idea of helping.  I didn't really know what was meant by 'conductive' -- despite lengthy debates amongst other students and conductors, reading Andrew's various analysis' over the years, and spending the last 15 years trying to trying to explain it to other people I'm still not totally sure what it really means.  However, I did understand the word 'education'.  I have long been passionate about education, teaching, learning, and dynamic potential.  I had some amazing teachers over the years; teachers who lifted me, who inspired me, who saved me from my teenage self but somehow I couldn't see myself standing at the front of a classroom and 30 kids in a mainstream school teaching curriculum subjects.  You might think that hopping on a plane from Canada to England to pursue a career based on some vague ideas about helping and teaching and disability was a bit insane, but at the time it really felt like this perfect opportunity custom designed just for me had somehow fallen out of the sky and landed at my feet.

          And yes, we studied anatomy and physiology, etiology and presentation of conditions and diseases, and disability politics.  But much more, we studied pedagogy.  We learned about learning and motivation and potential and transformation and experience.  We learned about Vygotskii and his 'zone of next potential', and we learned about driven and inspired teachers like Feuerstein who didn't just find ways to teach people deemed 'unteachable', but believed so much in the power and processes of education that they sought and developed alternative ways of teaching and unleashing potential, and in doing so transformed the potential of education itself.  We learned about inspired teachers like Peto who chose to see past the medical model of disability and to believe that teaching and learning could positively  influence the presentation of disability, and developed a holistic pedagogy around helping people learn ways to manage their bodies.  And we learned that everyone could learn, and that learning is a lifelong process, that learning is dynamic and non-linear, and that learning is a shared two way experience between teacher and learner and that both teacher and learner learn and grow as a result of the interchange.  These ideas still excite and fascinate me today.

          CW is working to regain leg strength following a hip surgery, so that she can push through her legs and bridge in her wheelchair and therefore be able to adjust her position in her chair to get comfortable and to allow her to get dressed and do other things involving position changes more independently and without hoisting.  Last week after our session, CW and I were chatting, reviewing the progress that she had made over the past few weeks.  We agreed that there had been slow but steady improvements in the movement and strength of her legs but that we were both frustrated that the bridging wasn't happening.  CW respects and trusts her orthopaedic surgeon -- his best advice was keep doing what you are doing.  CW works with a fantastic physio -- who gave us great feedback on how much pressure CW was able to put through each leg and which muscles were and weren't firing -- interesting and useful, but again, not getting us anywhere.  We had worked out the obvious things -- that mechanically a huge change in leg length would change everything and had tried everything to adjust for that, and still, well, nothing.  Then CW said that maybe it was more about where her back was in her chair now, and that if she had something behind her to bridge over it would work.  And this light went on for both of us -- yes leg strength was vital to the bridging, but CW doesn't bridge like other people bridge, she has a complex system of arching her back and triggering a reflexive movement and then using her legs to support her.

          So the next session we tried ... and here is the result



          But the real result ... another reminder that though I'm the teacher, I'm also the learner, and I am certainly not the expert.  I have some pieces of paper from university saying I'm a conductor, and I have years of experience working with many people and their incredibly different bodies and have learned some tricks and 'task solutions' that I can share.  But I don't know what it feels like to be in CW's body -- she is the expert.  And because as the teacher/learner I had the humility to say 'I don't know, what do you think' and as the learner/teacher she had the confidence to say why don't we try this, we both learned, and we found a solution.

          “To be a teacher in the right sense is to be a learner. I am not a teacher, only a fellow student.”                

                      -- Soren Kierkegaard, Danish Existentialist

          Chocolate all over my Maple Leafs shirt

          It hasn't been a very good year for the Toronto Maple Leafs; Toronto ice hockey fans are once again having to live with the disappointment of yet another season of not making the play-offs and of a top winning streak of something like 2 this season.  But Toronto fans are hearty; our support for our boys in blue and white is unwavering despite disappointments; discouragement never seems to last longer than the first beer after the game and we come back game after game and year after year -- game tickets selling out way in advance -- positive, pumped, and ready to encourage our boys, believing that this season will be the year that the Stanley Cup comes back to Toronto.  I had been having that exact conversation with a random Canadian who had noticed me wearing my maple leafs shirt when I stopped at a coffee shop on my way to the hospital to visit one of my participants who was on suicide watch.

          Though I knew that this person was in hospital I had assumed it was for one of the usual reasons, a bad seizure, an infection -- perhaps not your or my usual, but certainly her usual.  When I had heard the day before that she was being monitored because of suicide risk and depression... well, how does one react?  I know that every time I thought about her through the day I tried to replace my worried thoughts with the mantras 'hang in there' and 'please don't'.

          It is always difficult to figure out what to say or do when confronted with someone else's emotional anguish.  It is always so much easier to let your own discomfort about their emotions stop you from being able to be there.  I started to second guess myself on the way to the hospital -- what do I know about this?  I'm not a psychologist or a counsellor, I don't know what I should say or do or how I should be; how selfish am I being with my little mantras, 'hang in there', 'please don't'? Am I thinking about what I want or what she wants?  Maybe I shouldn't go visit, maybe I'm not strong enough, maybe I should leave this to the professionals.  If she is really hanging in by a thread can I help her strengthen that thread or will I just add tension to that already tenuous line?  And then, as if reaching into my head and heart from across the world in a small town in Hungary, I imagined my conductive mentor AB saying "stop it Lisa, it is not about you, your instinct tells you that you need to go to the hospital, just go, you aren't going because you can fix it, you are going so she knows you care, that's all".

          So to the hospital I went.  I listened to somebody who after years of fighting and of standing up again and fighting and standing up again and fighting and beating the odds yet another time was tired, somebody who was now in so much physical pain that she was no longer sure if she wanted what she had been fighting for.  Somebody whose fight and whose determination so many others respect but whose pain and grief we can only imagine.  Somebody who is tired of being in the 'too hard' basket.  Somebody who is angry that people who are supposed to help seemed to be telling her that there was nothing that could be done.  The darkest moments were over before I got there -- not resolved but over, and she was telling me rationally what had been going on in her head when things were at their worst, what she had come through, where her thinking had come from.  Some of me was understanding where she was coming from, supporting her, trying to respect her and what she says she wants, wondering if I would be as strong as she has been, if I would have had as much fight.  And the rest of me was going over those mantras in my head 'hang in there ', 'please don't'.  I helped her eat some goopy sticky enriched chocolate hospital pudding.  I dropped the spoon I was helping her eat with and got chocolate goop all over my Toronto Maple Leafs shirt and we laughed because I was the one who was supposed to be teaching her hand control and coordination.

          And I back in my car, started analyzing what I said and didn't / should have said.  And I looked at the chocolate goop on my shirt and started to get angry, not about the dirty shirt, and not because I minded helping her eat, but because someone who needed help eating was given chocolate goop in hospital and nobody thought to help her get it into her mouth.  And I got angry because I don't like when other people  are in pain and when things aren't fair or right, and angry because maybe I could have done more / should have stayed longer / hadn't tried hard enough or done enough, and upset because I don't like when I can't make everything alright.  And the thought of my next four appointments that day made me feel tired and how was I going to go see people in their homes when my shirt was covered in chocolate goop so maybe I should just cancel my afternoon and go home for a nap.  So I called MH, knowing he wouldn't tolerate my negative headspace.  I had my rant and rave and cry.  He reminded me that people will do what people will do, and that life is what it is, that it didn't have to be fair and I didn't have to like it, but that I could only be responsible for what I did; he asked me if I was glad I went to the hospital -- I was; he asked me if I was going to let being scared or discouraged stop me from doing something I was passionate about, from teaching, from conducting, from caring -- I said of course not.  He asked me if I was ok, and by this time I was; and I had people to see, other important work to do that day.

          Conductive Education and Personal Training can be hard; working on my own can be hard -- especially when previously I have worked with such amazing colleagues.  That said, it would be ridiculous to think that I deserve to share in people's personal triumphs if I'm not prepared to wade through some of the chocolate goop along the way.  I have learned to learn from and laugh about the goop, and to cherish and celebrate the tiniest victories.  And time after time, the tiniest of victories seem to wash away all of the chocolate goop, and the work is worth every minute.  I smiled, remembering her talking about going home in a few days, remembering her laughing at me dropping the chocolate goop covered spoon all over my Toronto Maple Leafs shirt.  And now she's come home from hospital; and my shirt is clean; and maybe next year the Leafs will win the Stanley Cup -- I'll certainly be cheering for them.

                         Because I know this song speaks to her.....                                 
                                           "Mistreated, misplaced, misunderstood. 
                                           Miss 'No way, it's all good', it didn't slow me down. 
                                           Mistaken, always second guessing, underestimated. 
                                           Look, I'm still around"
                                                                              (P!nk - f%@kin perfect)

          rhythmic meditation

          I have always loved the start of my adult CE sessions; the exchange of sincerely warm greetings and chit chat of friends catching up on life and the real world events from one session to the next; 'how are you's?' where the question is genuine and the response listened to; transferring or getting settled and ready to start; the tension of expectant silence before the first task which I always let linger for just an extra second or two so that we can all clear our minds, come together mentally, and prepare for the physical work at hand; and finally the first task delivered and repeated with rhythm so deliberate, connecting and uniting us, setting the tone, tempo, and mood for the start of the session.  I have learned that these moments are so precious, even if the session is not going to be a traditional session following a formal task series, and especially when the participant(s) are accustomed to formal CE.

          AR -- my partner in crime (as well as in business an in life) -- is lucky enough to be the person who gets my unedited and often exuberant monologue response to 'Hey, how was your day?'.  A couple of weeks ago he said -- "...this rhythm thing you are always talking about, I don't understand it".  And I sort of froze.  Not because I don't know, but because I haven't been asked to explain it in such a long time, and because over the years it has become so intrinsic to what I do that I had to work out my response.  So, what exactly is this rhythm thing we talk about and how is it used in CE?  I wish I could explain it simply -- I can't -- but I can try to exemplify how I use it, as a traditional CE facilitation and otherwise, in this instance as a meditation.

          For example, CW is an adult with mixed tone athetoid cerebral palsy who has been doing CE with me on and off for the past 7 years and who has accomplished some phenomenal things.  She is fearless and adventurous, quick witted and mentally agile, always open to trying new things, always working out ways to make something possible despite a relatively uncooperative body, particularly over recent years where suspected cervical myelopathy has wreaked havoc on her body.  We are working intensively at the moment to regain CW's leg strength following a hip operation, and she is awaiting major neck surgery.  We have agreed that our work will be more like 'physio' / rehab / training' for now -- focussed on regaining leg strength and nothing else, avoiding anything upper body because of the risk of doing further damage to her neck; repeating very specific movements several times and then resting and repeating; more like a gym session than like CE.  She is understandably anxious and frustrated.  I see it in her face, hear it in what she voices; when I arrive we talk about updates from doctors, and changing neuropathy, and how things have been since I've last seen her.  And then that pause; that expectant silence, and the first task, the tone, the deliberate rhythm, the counting.  I see her face relax as she counts with me; the familiar rhythm washes over her, the worry and anxiety and frustration shelved for later, the mind cleared and focussed and ready to take on that body.  For CW the rhythm is a meditation of sorts, powerful and soothing, without it I'd just be working with her legs, not her mind.

          This meditative use of rhythm CW utilizes reminds me of a woman with late stage MS that my conductive mentor AB and I worked with years ago in Toronto who used rhythm in a very similar way.  I used video footage of this woman for a conference presentation years ago in South Hampton.  The video was of a session where this woman was working with myself and AB, all three of us verbally intending and counting over and over and over again, trying to coax a leg locked in extreme and painful spasm to relax millimeter by millimeter.  A senior conductor at that conference, in fact one of my university lecturers and the person who had taught me how to work with rhythm, challenged me on the use of repetition and counting in such an intense one on one situation.  At the time, I only knew that it felt right, and I was too intimidated to defend my choice.  Looking back, and I remember that session and the work with that participant so clearly, I recognize the same meditative thing happening that I now see with CW.  The familiar rhythm washing over her, giving her a way to use her mind to shift away from the pain of the spasm, to relax her mind so she could relax her body.  I remember that it was hard for her to count when the spasms were violent, but that when she 'caught the rhythm', breathed, counted that her face changed, softened; that her eyes were no longer squeezed shut, that her body stopped bracing, and if necessary tears could flow uninhibited.  The rhythm was not part of the task solution, but again the way in to the body, the body mind connection.


          You have to be able to focus, to control your energy. You need to make it your ally, instead of trying to harness it, to muscle it. That wastes energy too. There has to be a harmony between you and your body. Your mind and your body, and your soul have to connect in order to move forward. And this comes through relaxation.
                                           ~ Elvis Stojko, Canadian world champion figure skater