Eight million things I love about Em

One of the most wonderful ways to mark time in this profession and on this planet surely must be the pleasure of seeing kids that you conduct evolve and grow into wonderful young people.  Last week I had the pleasure of indulging in this experience for an entire week, when ES decided to hop on a plane from Sydney to Auckland for a visit and a good old fashioned CE kick in the butt.

You can know she is working on her second university degree, you can see her driving around the neighbourhood in her own car, you can go to her 21st birthday.  But suddenly there she is, in another time and another place, confidently introducing herself to a class full of adults, talking about her disability like it is the weather or the cricket, self motivated and focused during the program like all of the other, well, adults.  Suddenly there she is sorting herself out, getting up and dressed on her own and going to bed later than me, ordering cocktails or coffees or whatever she wants, checking to make sure I'm okay after a hectic day, and holding her own in conversations about educational psychology and disability reform and politics. There she is at the airport patiently explaining to the desk staff that she is a person requiring assistance and that no she did not require me to accompany her to the departure lounge (!).



It is hard to describe the way I feel about ES.  There is respect and awe; respect for the journey (which I hope one day she will write about) that she has taken to get to this stage in her life and awe that despite it all she has turned out so wonderfully.  There is pride and gratitude; pride as in I'm so proud to know this person and to introduce her as a friend, pride around seeing what she has become and what she has yet to become and gratitude for what I have learned and experienced by getting to be a part of her journey for the last decade.  There is fierce big sister style protectiveness that has pretty much been outgrown and has been replace by friendship. There is the dance that has to be done whenever a relationship grows and changes which can be disconcerting until you remember that this is what people who see each other through life's transitions have to do to move into the next chapters together.

I see her fall on the beach at Takapuna - the first time she has fallen with me in all of our years of walking together - and see her stand up and brush the sand off of her jeans and laugh about getting wet.  Years ago falling would have devastated her but now this young woman has learned how to fall without falling to pieces and knows how to bounce instead of break.  I find myself wanting to write about her transition, realising that it is not my story to write, and hoping that one day she will tell the world how a fragile and emotionally wrought teenager psychologically trapped by her cerebral palsy finds her way into resiliency and rationality and confidence in adulthood.  I listen to how she talks about how she thinks and feels, about the ups and downs of life in the last few months, and can't help but be amazed at how she now rolls with the punches instead of letting them knock her out, how she gives as good as she gets, and how she now understands her own self worth and is willing to fight for it.



She leaves, and the house is quiet, and I settle back into my routines wishing that I'd had a bit more time to talk to her and that work and life weren't so hectic.  She leaves but isn't gone, like those wonderful people that dance in and out of your life over years and decades, and I realize that we have both watched each other grow up - and that kind of scares me, and I start to think about all of those other wonderful 'kids' making their way in the world of adults as wonderful young people.  I am reminded again how lucky I am to be in a profession that allows me to be on or at least bear witness to these journeys, how lucky I am to be in a profession that allows me to get to know and love so many wonderful people, how lucky I am to be a conductor.

ES, 'I hope you don't mind, that I wrote down in words, how wonderful life is, with you in the world!'



Dodging raindrops and finding my feet...

I know I've gone quiet lately.  The past several months have been tumultuous -- I've effectively shut down a business and a chapter of my life, moved country and started a new challenging job, and I guess it is hard to find your voice when you are busy trying to find your feet.  And no, this is not the first time I've jumped from one life chapter to the next, but for many reasons it has been the hardest.  I realise now that part of why this transition has been so challenging is that I underestimated how tenacious the personal and conductive roots that connect me to Sydney have become.

It was heart wrenching closing down Transformations.  It is always hard to say goodbye, and even though I know that friends and clients who over the last decade have become mentors and friends will stay in touch as many from other chapter have done, the nature and consistency of relationships must change.  We always talk about how two way conductive relationships are, and it was very hard to step away from people who have supported me and everything I've done personally and professionally over the last decade.

To add insult to injury, I spent the better part of the last three months in Sydney desperately looking for appropriate people in the rehabilitation and fitness industry to hand my regular clients over to.  I brought carefully considered hand selected trusted colleagues and professionals I respected to meet my clients, hoping they would carry on my work, and many of them balked.  I found myself having those conversations, the ones where people tell you that they could never do what I do, with trusted friends and colleagues and I felt like they were rejecting a part of me when they said they didn't think they could take on one of my clients for an hour a week.  I was reminded of a challenging discussion that Andrew Sutton, back in my student days in Birmingham, lead us as first year students through about understanding that in a profession like the one we had chosen, we were choosing to have disability in our lives, but that we had to have compassion and awareness that it was not something our clients and their families actively chose.  I guess I forgot that the world that is so normal to me, filled with people I value and hold so dear, is such a strange and scary world to so many other people, and I took it really personally that even as a favour to me, let alone the gift of regular client into someone's business, respected professionals would not choose to be involved in my world.

In Conductive Education we have always heard about families who have travelled halfway around the world and disrupted their lives and families so that they would access Conductive Education for their child.  We also need to talk about the wildness of being a part of a profession where the only opportunities for employment in your field often necessitates disrupting your life and family and moving to another corner of the world.  I love, and am grateful for the opportunities and adventures that  a career in Conductive Education has afforded me - but this time I didn't just follow my whim and do what suited me in the moment.  I uprooted a wonderful husband, a person whose happiness and well-being I feel inherently responsible for, a person willing to leave a life that he loved to support me on a journey that I wanted to take, and have watched him struggle to settle in and find his feet and his happiness.  I romanticised the adventure we were going to have together, and actually assumed it would be easier to jump chapters with him instead of on my own and didn't prepare either of us for the roller-coaster ride and bumps along the way.

I also romanticised the job I was coming into, an established adult CE centre, working with two conductors I liked and respected, in a place that I have always wanted the opportunity to explore.  I didn't allow myself to think about things like the subtle but very relevant distinctions between Kiwi and Aussie culture, let alone the culture shock of jumping into established groups that have been running very well without me for years thank you very much, or about having clients who have had years of conductive experience that hasn't included me.  Some of the adults here have been around CE longer than I have - in my professional experience, every group I've run, every client I've had since my student days and other than during my hiatus in Norway, has been a person I've introduced to CE and a group that I have set up and run (with mentorship and guidance) my way.  I have had to learn, adjust, adapt - as have my new clients and colleagues and it has not been an easy ride.

I've also come into an organisation going through change - in fact I am part of that change and the associated discomfort, and worse yet I'm causing some of that discomfort.  I now understand that part of my roll is actually going to be conducting this organisation through change and I am going to have to work hard to learn how to do that.  In other jobs and in other organisations where there has been change, I've had to learn to roll with the punches and have had to learn to fight back where necessary.  I've learned that if change is a wave crashing over you it is hard, so you have to either learn to ride the wave or to choose to get out of the water, but now I'm part of the wave instead of the surfer and to be honest it is really hard to learn how to be a more gentle wave -- it has never been my style and it will have to be my style if I'm going to be any good at my job here.  And that, in itself, is overwhelming, and I hope I am mature and ready enough to change myself.

So three months in to this new chapter I'm still settling in.  But I notice myself composing blog posts in my head, on the train as I head home from work, on my notepad and emailed to myself as reminders of things I want to think about and write about.  I'm trying to keep my head up, to be excited instead of overwhelmed, to count gratitudes instead of raindrops, and to find my feet -- and hopefully my voice too.

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

Pounding the Pavement and other Life Lessons

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

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

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

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



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

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

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

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

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

Saying goodbye to MrsVB

One of my long standing pet peeves about telling people what I do for a living is the sigh, head shake, and smile that come before the standard stereotypical comment about how "wonderful/patient/special/angelic I must be" to do "such hard work" that "they would never be able to do", but "how rewarding it must be". The comment is always well intentioned, and the moment is never right for a rant and a rave about seeing the person instead of the disability, and my awkward response is almost always something equally standard about being lucky enough to find value in my work or to do work that I love.

I wish that more often there were moments when I could gush exuberantly about the amazing people I work with and amazing little things that these people say and do; to explain that I never have to look far for everyday heroes and inspiration and simple pleasures and joy. I wish that the moment was appropriate to talk about the genuine relationships and friendships that I have developed with participants and clients over years, based on mutual trust and respect, based on shared experiences of battles won and lost and overcome and worked through over hours, weeks, years of working closely together. Shhhhh -- I know -- I'm supposed to be all professional and objective, to keep a professional distance -- don't tell anyone, but I often find myself really caring about, really loving the people that I am lucky enough to work with. In fact, even the ones that drive me bonkers have this amazingly special place in my heart.

One of the big challenges for me personally with the Enable Me project is that the clients are in the program for only 9 weeks -- in other words the relationships have a pre-determined end date. My other clients and participants drift in and out or fade away, and often stay in touch by email or facebook when they aren't actually seeing me, but the Enable Me bunch are literally discharged from the program. We have a running joke at my gym that when a training relationship ends it feels a bit like breaking up -- with the Enable Me project it feels like I'm breaking up with people every few weeks.

Mrs VB is in her mid 80s and for 2 months we worked hard to find ways for her to use exercise to manage her back and sciatic nerve pain while learning strategies to move and function with as little pain or aggravation of pain as possible. It was very hard work for both of us -- learning to manage inoperable and untreatable chronic severe pain can never be anything else. There was tears, exhaustion, frustration -- much more often than moments of joy or relief. While we worked she told me stories of her late husband and of her life, her passions, her hobbies which included volunteering at a museum and genealogy. She lent me her Leonard Cohen box set when she noticed me noticing it.

On the day of her last session (her 'discharge'), Mrs VB invited me to stay for coffee and a chat. Though I didn't really have time, I stayed back, and looked at wedding and antique photos. I stayed because I recognized that the gesture wasn't about saying thank you, but about acknowledging the end of the relationship, and more importantly acknowledging that something 'magic' had happened in the exchange that had meant something to us both, that wasn't tied up in whether or not the goal of pain management had been achieved, but in the gruelling experience of working on it together. I knew that if I didn't stay, I wouldn't have honoured the fact that we hadn't just worked together, but that she had let me in, had exposed so much of her fear and her pain to me. I wasn't done; I really wanted to be able to keep working with her -- I felt that if only I had a bit more time I might be able to find something that worked, or worked a bit better. I left feeling sad about the end of the relationship, and sadder that I had not been able to help her, and that I was leaving her with the same pain that I found her with.

I have just had an email from the case manager saying that in the post intervention interview Mrs VB reported feeling more positive and in control of her life, and that even though the pain was still there she had more things she could do that provided her with some relief, and that trying to remember and do the exercises distracted her from the pain for a few minutes. And she said that she didn't feel as alone in the whole thing, and that she was going out with her daughter and volunteering more often even when she was in a lot of pain, because she knew that having a laugh was better than sitting at home in pain.

And I can't even remember what exercises I left her with. But I can remember the green coffee beans that were too hard for her to grind so we drank instant, the wedding dress that she made herself, the pictures of her grandmother as a baby, and the Leonard Cohen dvds.

"I did my best, it wasn't much
I couldn't feel, so I tried to touch
I've told the truth, I didn't come to fool you
And even though it all went wrong
I'll stand before the Lord of Song
With nothing on my tongue but Hallelujah"
                                         Leonard Cohen