Reflections on life and death and love and happiness

Every once in a while you meet someone and for whatever random reason you seem to already know each other - your souls seem to recognize each other - and you are able to connect and form an instant, deep friendship that exists in a realm beyond the superficiality of most casual acquaintances.   I felt this when I met MC a few months ago during my ocean swim training- I think that he probably has that effect on many people. He went out of his way to take care of everyone when we were swimming in the ocean and we all knew that he was caring for his beloved partner in her final months of a long and awful battle with colon cancer.   Though I've only known MC for a few months, I had an overwhelming urge to be at his beloved's funeral earlier this week.

Many in my swim squad had the same instinct - and we were all so glad we could be there for MC.  We had no way of knowing how his beloved's ex-husband and his family would dominate the funeral, no way of knowing that our urge to be there to support MC would add so much balance for him, it was just an instinct that being there for him was important.

Funerals by nature inspire deep reflection and I found myself thinking about Frank Bailly.  My grandmother was very proud to say that she had only ever said 'I love you' to two men - my grandfather, and Frank Bailly.   My grandparents had a fantastic, happy marriage.  My grandmother was absolutely beautiful, incredibly intelligent and articulate, and fascinated by people and the stories they would tell you if you dared to ask; she was an editor of a magazine and was well known.   My grandfather was the most wonderful of men, with this child like love of life that was beyond contagious, and to this day I feel his spirit in the fun moments of life.  My grandfather hailed from a family of legendary longevity, so everyone was shocked when he died young and suddenly of pancreatic cancer. No one was more shocked than my beautiful grandmother who spiraled into an angry and very dark depression...until Frank entered - or shall I say re-entered the scene. 

Frank and my grandmother had wanted to date in highschool but were not allowed to court due to a difference in religious backgrounds, and he went on to have an wonderful happy marriage and was a well known big band tenor saxophonist.  His wife died around the same time my grandfather did, and as widows my grandmother and Frank enjoyed a few years of a loving courtship.  They hit the town, dinners and concerts and theatre and music halls.  When my grandmother started to get sick Frank stayed by her, and even at the end he lit up the nursing home with regular visits and kept her company during her more lucid moments.

I was thinking about Frank at the funeral earlier this week, hoping that at my grandmother's funeral he had people around him supporting him, and that my family was suitably grateful, respectful, and honouring of the love and happiness he had given my grandmother in her last years of life.

My friend MC was trying to reach an enormous fundraising target of $10 000 through sponsored long distance runs and open water swims before his beloved passed, as a living tribute to her and a way to honour her.  He and his beloved were not cynical about cancer research -- they believed that she had an extra four years of life because of medical treatments and that these four years gave her precious time with her daughters and a chance to meet her granddaughter who was born on her birthday a few months ago.  

This drive, this determination he showed under circumstances where he might have wallowed in helplessness reminded me of DB, a client and good friend of mine with cerebral palsy.  I was remembering DB from a few years ago when he was trying to cope with his mom's pending death, also of cancer.  

I had know DB for several years at this point, and in all of the years I worked with him previously he had been happy to do things to help him maintain his ability to get into and out of his wheelchair but was happy not to be pursuing any sort of free standing or balancing due to hip and back pain.  Suddenly one day, standing up from his wheelchair unassisted and being able to stand and balance independently became a very important priority to DB and we started working feverishly and determinedly towards this, eventually achieving it.  I asked him why after all of these years this was suddenly so important to him, what had changed?  

His answer was mind blowing and humbling.  DB remembered how happy it made his mom when he learned to stand after years of hard work with an incredibly uncooperative body.  He knew she was dying, and was respectful of her choice to have no further treatment after a long and difficult battle.  He felt that if he could stand at church he could make her happy.  It was his way to offer a living tribute, to honour her, to do something positive for her in her final days.  

I have told this story previously in public presentation under the context of understanding the  motivation behind a goal, the why behind the what, looking at the bigger life needs and individual reasons that something might be important to somebody.  And I recognized DB's why in the fundraising my friend MC was doing -- the need to do something positive, to honour, to pay tribute when helplessness was not a satisfactory response.

I was thinking about DB and about MC was inspired and moved by their ability to turn sad situations into something positive, to lift people when they needed it most, and to serve the people they love instead of being trapped in their own grief and helplessness.  I hope that if there is ever a need for me to be that person, I can find the strength to get past my own issues and find focus on doing something that will honour and lift, or bring happiness to someone who needs it.

MC is still fundraising for Cure Cancer Australia - to donate and help him continue to honour his beloved, please follow this link:

Help MC raise money for Cure Cancer Australia

MC - this your beloved's favourite song was so beautifully performed at your beloved's funeral; I hope you don't mind me sharing it here.  My thoughts are with you friend.

Chasing Cars

When conducting is Trying...

I have been working with Miss M for almost two years now; she is a young adult who had a terrible fall while overseas a few years ago, and she has been left with a rather nasty brain injury.  Miss M is one of the most personally and professionally challenging people I have had the privilege to conduct, and even in a month where we have had some ridiculously incredible functional breakthroughs I find myself unsure of where I am with her and having internal conflict after virtually every session.

Miss M has an incredible full-time carer, L, who Miss M and I are extremely lucky with.  L is fantastic with Miss M - she has a very close and loving relationship with her that I am able to work through, yet is able to be objective, firm, and work with 'tough love' where Miss M's parents can't.  L problem-solves with me and and reinforces the work done in CE sessions -- and when things don't go well, we help pull each other through the muck.

There is no getting around it; acquired brain injury is complicated -- especially when physical disability is accompanied by impairment to behaviour, personality, memory and other cognitive functions.  When I first started working with Miss M, I saw so much potential for regaining functional mobility but was not sure if I was going to be able to work around her behavioural and cognitive impairment.  I was not sure to what extent the behaviour was a result of the brain injury or was something that she had learned to use manipulate and control her circumstances and the people around her since the brain injury.  The behaviour drastically impacted the presentation of the disability, so much that the physical impairment and the physical disability were incredibly mismatched.  She yodelled and shouted jibberish as her main source of communication; otherwise she just parroted what was said.  She cried and shrieked with 'pain' when anyone even mentioned touching or moving her hands, feet, or legs, so no therapy or splinting happened, and as a result her hands and feet are amazingly contracted and deformed.  She had a very violent and aggressive streak that had required no provocation.  She was not interested in actively participating in CE or therapy; not motivated, and refused to take part.

And yet she knew every word to every song, including recent pop music from after her brain injury, and we could sing together.  Once I got over my own hang ups about what is appropriate when working with adults I found that through children's song and play I could interact with her and sometimes get her to do things with me; I frantically went through my notes from my student years in nursery and school groups looking for appropriate songs, added in 'camp songs' and pop songs and other movement games and suddenly there was a relationship.  And with that relationship came my expectations around behaviour - not just with Miss M, but with her amazing family and wonderful carer as well - and with expectations and goals around behaviour came change - both good and bad -- think of a full strength adult hitting the 'terrible twos'.

We are working teach Miss M that being violent and aggressive is not acceptable -- she is strong, has good motor control, and is unpredictable and dangerous.  At first this behaviour seemed random - no provocation required.  A previous therapist had in fact capitalized on it early on -- rough play and play fighting was the only activity she would take part in and that was how he helped her find her body and movement after the accident.  Now, by holding her down, restricting her movement, repeatedly telling her that she was hurting me (and yes I have had my share of bruises and scratches and bites and hair pulling and pinching courtesy of Miss M) I've started to see that she can stop being agressive if there is consistency around this.  But more, I saw that she could learn - when I intercepted her aggression she would burst into apology and tears.  I also confirmed that she could be manipulative - while she was apologetic and teary I would drop my guard and she would attack again.  I also started to see that the violent behaviour was not random - frustration, confusion, pain, being frightened, being over something, needing some physical space were all triggers.  Miss M has a very short fuse; and when she loses control she can't yet reel it in.

Now we are working to teach her that saying sorry and crying isn't enough, she has to choose not to repeat the behaviour -- and we are making progress.  However, in some ways these improvements have made the behaviour harder to manage.  We have seen intention and purpose in her rage -- this is incredibly hard to work with because we know that it is not just random brain injury lability, but directed violent anger -- very different.  There are good days, days when we work well and have no fighting.  I know that once Miss M loses her temper she is out of control, but because I feel that Miss M understands what she is doing and that she knows she is not behaving nicely, I feel my own anger rise when dealing with hers.  It is very hard to physically restrain somebody who is attacking you when you are also managing your own anger and trying to be professional and appropriate.  If she is on the floor or in her wheelchair I can move away; if we are in the pool or balanced on the edge of a plinth, my duty of care doesn't allow me to step away and I have to restrain her to protect myself while keeping her safe and managing my own temper.  And I'll be honest -- I sit in the car and cry after these days.

When I say we have seen ridiculously incredible functional breakthroughs I am not exaggerating; in the last few months we have seen exponential improvements in spontaneous communication and vocabulary; we see memory and refection where previously there was none; we see the beginning of an ability to understand that there was an accident, that there has been a brain injury, that we are trying to help her get better.  Miss M has gone from from swimming only with floaties and someone right beside her to independent swimming on her front and back.  She has learned to roll onto her stomach (or more precisely to tolerate being there) and from rolling onto her stomach in a matter of a week has learned to get up onto her knees and to crawl, and from there to pull herself up into high kneeling and onto a plinth or the lounge.  The other day she was in high kneeling and tried to put her foot on the floor as if to stand (if only her feet and ankles weren't so terribly contracted!!!).  Her body is remembering what she used to be able to do and latent abilities are presenting gob-smackingly rapidly and spontaneously -- it is like watching normal deelopment in fast foward.  And when these things happen we celebrate  - Miss M's parents, L, and I all shocked and amazed, ecstatic to the point of tears, and Miss M caught up in the excitement of the moment.

And then I show up the next day, expecting to reinforce and repeat what we have achieved and Miss M will be in a mood, refusing to participate, crying, being aggressive.  When this was what I arrived expecting it was hard, but I was prepared, and it was what was expected.  But now I don't know what to expect, and I excitedly arrive, still on yesterday's high; we review videos so Miss M remembers and we get excited watching them. Then we try to do something and I get behaviour and refusal to try.  And I am heartbroken and disappointed even though I know that this is the nature of this brain injury and that this is a part of the process for Miss M.  And even though I know that any confusion, disappointment, frustration I feel is minute in comparison to the complex emotions that Miss M feels and has no real way of expressing.  My disappointment and frustration sometimes clouds my thinking, it feels personal -- we have a relationship that has allowed her to develop and exceed everyone's expectations; I'm putting everything I have into these sessions, and she can't be bothered to try.  And only hours later while debriefing with L, am I able to appreciate and understand and deconstruct what is happening, and to remember how far we have come, and to find energy to keep trying.

You've got to try...

Or perhaps this is more inspiring...  Try, just a little bit harder

Sink or Swim... How does one conduct one's self in the ocean?

I have been meaning to resume blogging for a while, but needless to say these intentions were thwarted by an all-consuming personal challenge I undertook over the past few months. I have been training for an open ocean swim in support of Cure Cancer Australia. What I thought was going to be a fitness and fundraising challenge ended up also being a battle with myself and with my deep-seated anxiety over a fear of the ocean that I didn't know I was housing.

I have learned some important lessons about myself – and about the way that I conduct and teach - along the way, and will use my foray back into the CE blogosphere to reflect on these lessons.

I started struggling early on.  Despite being a strong swimmer I started having panic attacks in the ocean, and on occasion having to be rescued and brought back to the beach on a surfboard.  And then I started to panic on the way to ocean swimming training, or when just being near the beach and thinking about swimming in the ocean.  Anyone who has struggled with panic and anxiety can tell you that the anxiety about the anxiety is the worst part of anxiety because that is what stops you from doing things, and makes the anxiety spiral beyond a particular situation or circumstance. 

I started to feel disappointed in myself and beating myself up over this anxiety which was quickly consuming me and spilling over into everything else; I started feeling like it was too much, like I was in over my head (literally and figuratively), and I started thinking of pulling out.  I was disappointed in myself, as worried about failing as I was about drowning, plus worried that I was letting my team and my family and friends who were supporting me down.

I shared my anxiety with CW and MD – wise women who I am lucky enough to conduct and to have as friends.  Both encouraged me by telling me to ‘conduct’ myself.  And in my anxious state I thought that if I failed I was going to be letting them, and all of my other participants, and all of Conductive Education down too -- if I couldn’t ‘conduct’ myself, how could I imagine I could conduct others?  Very unhelpful headspace; not at all in the positive and be kind to yourself approach I would like to think I encourage my participants to use when they are trying to work through something difficult.

However, within the brilliant advice ‘conduct yourself’ was the answer – it enabled me to change my thinking and headspace.  I had to step back and remind myself what was important in CE as I tried to figure out how to ‘conduct myself’.  Conductive Education is not a judgement on success or failure but about trying, and then trying again, and then trying something different, and continuously seeing new solutions when one doesn’t work. It is about rewarding effort so that our fragile egos are not defeated by failure.  It is about not giving up because something is not working or going to plan, being willing to have another go. 

I had to remind myself to value and celebrate small achievements and steps along the way to the bigger goal.  I had to remind myself to focus on what was going well and on building on that instead of dwelling on what was not working.  I had coaches and mentors believing, I could do it even when I didn't believe I could - how powerful to accept their vision instead of letting my own disbelief hold me back!  I didn’t always believe I was going to be able to do it but knowing that someone else believed in me made me think that it was going to be possible. 

I was training with a group but so caught up in my own anxiety that I thought I was the only one struggling – I had to look beyond myself and connect to the journey and struggles of the others I was training with, to learn from them, to let them teach, inspire, and help me, and to accept their encouragement; to let them lift me.  I also had to remember that I was doing this for them – someone actually told me that the reason they came back after they had a rough ocean training session was that they saw me keep coming back and trying, knowing how frightened I was.  Who would think that watching me struggle with my anxiety could inspire someone else? I stayed with it because of the support of this group and our shared goal, because people kept supporting me when I was struggling - even more so in fact.  The shared goal was bigger than the physical challenge – we were all there with personal reasons for wanting to fundraise for cancer research and this made for a powerfully connected group, a group of individuals prepared to put their own personal glory aside for the benefit of a teammate and friend.  I nearly missed out on being a part of this group because I couldn’t see beyond myself, and I think back to some of the amazing groups I have conducted over the years and remember times when my participants have surpassed expectations because they were lifted and inspired by the group they were working with.

I stayed with it because of the amazing support and encouragement from people around me beyond my training squad - family, friends, clients, and especially my husband Alexander and his constant, quiet, non judgemental support and ability to stand by me on this self imposed personal hell.  During the worst of the anxiety I was feeling more anxious with every new donation or encouraging message because I was worried I’d be letting everyone down.  I had to step back to realize that people were supporting me unconditionally, supporting that I was even trying, and applauding how hard I was trying.  I had to stop feeling like I was failing so I could remember to be grateful for the people around me supporting me.   And remember to be grateful that I was able to take part in something like this, and be grateful for the health and wellness of the people around me, and be grateful that I live in such a beautiful place and that I had the opportunity to be doing something like this somewhere so wonderful for a cause I am passionate about.

There were other conductive lessons – the personal experience of using breath, rhythm, and movement; counting while moving – counting strokes, counting breaths, guessing how many strokes to the next buoy, singing to myself while swimming – I pulled out many of my favourite tricks of the trade during training. 

I had a real dose of lessons in setting the wrong goal; lessons in having to change the goal along the way; lessons in breaking a large goal into bite sized bits, lessons on working on different segments of the goal, sometimes out of sequence, and letting go of the big goal in order to be able to do what I needed to do to work towards it – seeing the trees not just the forest.  I also had a real dose of what happens when you train the wrong thing --  I was trying to physically out-train anxiety instead of trying to learn how to manage the anxiety.  When I shifted the focus of my training and focussed on the right thing I was able to move forward. 

There were also experiences that really made me relate to what I see with my participants during CE sessions.  For example, sometimes the more you think about something the harder it gets; sometimes fear of failing actually can interfere with trying.  When I was stressed or anxious I had trouble taking in instructions and remembering things and the more information I was being given when I was feeling like that the more frazzled and overloaded I became – and I thought about times when I have overloaded my participants.

I had to learn how to admit I was struggling; I had to ask for help; I had to accept help that was being offered and trust in the people who were helping me.  I had to find a way to be the best that I could be in even the hardest and most frightening moments and to know that I was doing my best and accept that effort, even if it wasn’t as good as someone else’s effort – in other words to judge myself on my best effort in a particular moment, to be orthofunctional.  Such big battles I had with myself over things that I regularly expect of the people I conduct!

I could go on.  But if you’ve read this far you deserve a happy ending already and I hope that this will suffice.  I made friends.  I completed the training program and a 3km swim in an ocean rock pool.  I was part of an immediate team that fundraised nearly $40 000 and our team was a part of a much larger team that has now raised over $500 000 for Cure Cancer Australia.  On the day of the open ocean race mother nature flexed muscles bigger than mine and the swim conditions were too dangerous for many of us – though many in my team did complete the event on the day I did not, but I still felt good about my achievement and effort.  I battled myself on many fronts and won – or at least learned when I couldn’t win.  And I learned to conduct myself in the ocean, the real one and the unpredictable and ever changing ocean of life.

DONATIONS still welcome - click here!

A happy ocean song to make you smile

NICE Conductors need not Apply

This morning Conductive World Market on Facebook let me know about an amazing job opportunity with Move & Walk, a holistic Conductive Education centre in Sweden that I have been following for years. They have programs for babies through to older adults, have found creative and holistic ways to work with the Swedish health care system and with other professionals, have done research and always present well at conferences.  Move and Walk Sweden


Though I'm not presently looking to move across the world for a job, the free spirit in me can't help but be interested... An awesome job opportunity with people I'd love to work with in a place I've never been - very tempting indeed!

In terms of my experience and skill set I am an ideal candidate for this job and have no doubt that I could be an asset to their team; as an added bonus I have have basic Norwegian language skills which would make their requirement of learning Swedish more easily attainable. However, the job posting specifically stipulates that they are looking for "a Petö graduate conductor".

I'm not precious; I'm not offended to the core of my being or anything, and in fact think it is more their loss - there are a lot of excellent and innovative 'non-Petö' conductors out there and I am extremely proud to be a NICE conductor. But this Petö conductor vs non-Petö conductor thing has been a thing since I graduated and it still makes me quite angry. It may not have been meant to be an excluding job post; perhaps I should give the person who posted the job the benefit of the doubt and assume she meant condutors trained in the Petö method vs specifically at the Petö Institute - but as I said, this has been a thing for a long time now. I think that we need to come together as a profession, and learn to judge each other by what we offer as professionals instead of what school we went to. And, I think us non-Petö conductors and our colleagues and the families we have supported over the decade and a half since conductors have been trained outside of the Petö Institute should probably stop being 'NICE' about this.

And the sign said long haired freaky people need not apply...

--The Five Man Electrical Band

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'.

http://www.youtube.com/watch?v=HgzGwKwLmgM&feature=relmfu

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.

http://www.youtube.com/watch?v=-cUaO1P2mfo&feature=related

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