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  • 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’

    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

  • More about Seeing and Believing

  • 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