From Sydney with Love

I have always said how lucky I am that in my work as a conductor I have met some of the most wonderful people.  Today I received a letter from one of those wonderful people - someone who trusted me as a conductor, someone who has gone on to become a much cherished friend, someone who has taught me more than I could ever hope to teach her, someone I hope to make proud as I start again again in my new venture in Conductive Education.  

Maria has spoken at an international conference about how CE has benefitted her as an adult with cerebral palsy, has travelled the world competing with Sailability and more recently just for pleasure, and is working on an autobiography.  

But today she took the time to write these words, which I am humbled to share with you:

Maria writes...

My sincere congratulations to Lisa for launching her new business,Transformations: Movement for EVERY Body.  I wish Lisa every success in her new venture.

I met Lisa in 2003 when my husband and I were invited to take part in a pilot program of Conductive Education.  This program was aimed at adults with Cerebral Palsy, and was the first of its kind for adults in Australia.

I had heard about Conductive Education but really did not know what to expect or how the treatment could help me, but at the age of 48, I was willing to try anything that might help me to keep my mobility and independence. Despite being born with Cerebral Palsy, I have always taken great pride in my independence but as I age, my independence has become slowly increasingly difficult to maintain.

It was mid way through my second term of Conductive Education that I began to understand the fundamentals of the treatment.  I started to implement much of what I had learnt in Conductive Education to help me in my everyday life. I found myself using controlled breathing and counting in my head when I had difficulty in doing simple tasks.  It always works for me.

In December 2010 I made a submission to present a paper at the 7th World Congress on Conductive Education in Hong Kong.  My submission titled “Conductive Education Is Not Only For The Young” was accepted and with the support of Lisa and Alexander I travelled to Hong Kong and presented my paper.  I was very proud to present my paper and I enjoyed listening to other presenters speaking about the many aspects of Conductive Education.

Unfortunately I do not have access to Conductive Education any longer. I now attend a main stream gym and work out in the swimming pool weekly. In many ways both are similar to Conductive Education but they don’t teach me the tasks I need to remain independent.

I often wonder how different my life would have been if I had access to Conductive Education at a young age

Maria Dalmon.

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!'

Your Song 

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

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

Seeing is believing -- and believing is seeing

We often say seeing is believing -- and this is taken to mean that whatever we it is that we want to believe must first be demonstrated, must be proved, must exist, and must be objectively true.  Skepticism is considered healthy - be critical, suspend judgment, just the facts ma'am.  Our society values evidence over experience and intuition, and faith and hope are considered charlatan.  Conductive Education has been ridiculed and denounced and disregarded -- we haven't figured out how to quantify and clearly articulate what it is that we do; nor have external researchers, and why should they -- it is their job to be critical and objective.   And we, the 'global conductive community' -- for lack of a better way of describing the flotsam of people around the world working in the field of Conductive Education, supporting and fighting for Conductive Education, and benefitting from experiencing Conductive Education -- don't help the situation.  We talk about the intangible and psychosocial defining elements of Conductive Education and then try to find a tangible and objective way to be measured and defined so that we can fit in to wherever it is we are trying to eek out an existence.  Or we quietly do what we do and hope to remain unnoticed and therefore unscrutinized but never actually articulate what it is that we are so passionate about and protective of.

Where am I going with this ranting raving opening to this first blog, you ask?  I don't pretend to have the answers, just my experience, my stories, and my thoughts.  In this blog I plan to write about some of the unmeasurable and intangible conductive magic underlying the practice -- because it is important, because it is what makes us different, and because it is what makes me and many of the others that I have conducted love Conductive Education.  And I will start today with some thoughts inspired by KD about seeing and believing.

KD is an adult with cerebral palsy -- she attended a CE group I ran here in Sydney a few years ago.  She is also an elite boccia player and has represented her state and her country at major competitions.  KD thrived in the Conductive Education environment -- she came into the classroom with a determination of steel and an attitude that roared "I will until".  And she did, regardless of who told her she shouldn't or couldn't.  I'll never forget the relief and joy she expressed when we first met for our initial consultation when she expressed her goals and her dreams and I said let's give it a shot.  She was amazed that I didn't tell her it was impossible, and I continue to be amazed that there are people out there like KD who despite decades of discouragement still have the guts to have goals and dreams, let alone express them.  Over a few years I watched KD go from a few assisted steps with two conductors and a walker, to practicing with a friend outside the classroom, to walking across a beach promenade with her walker, unassisted, as part of a fundraiser that she organized so that she could afford to travel with the boccia squad to compete overseas.

KD contacted me a few months ago asking if we could get started again.  She said that she had had a rough year -- not just any old rough year; frequent and severe seizures, injuries, hospitalizations, life support; we had nearly lost her on more than one occasion.  KD said that as a result she had lost a lot of motor and sensory function affecting her entire life and well-being and, most importantly to KD, her boccia.

When I met with her for consultation, it was clear that she had not exaggerated any of what she had described.  Her struggle and fatigue were apparent, there was less fire in her eyes -- it still flickered, but it was dim.  I imagine a couple of years of illness, loss, grief, fear, worst case scenarios, and being told that she was lucky to be alive but that no recovery of function could reasonably be expected would extinguish most people's fires -- but KD was still fighting, dragging herself up for the next round.  We struggled through a first session -- very basic movements.  It was challenging for both of us -- because the last time we worked together everything was very different.  KD got teary as we tried movements that she hadn't tried since her down turn, and added more things to the mental list she was keeping of what she could no longer do.  I asked about her goals for our sessions she met my eye (which in itself is a big challenge for KD at present) and said, pleadingly but with determination "I don't care what or how much, I just want to get some of it back".  And I saw the fire -- I stopped seeing all of the deterioration and stopped wondering where we would start -- I saw the fire in her eyes, and I heard myself say "you will".  I couldn't see, but I believed.  And because I believed, KD believed -- without question, without proof, without a promise, without seeing, she believed.

We believed in hope, in possibility, in potential.  I believed in KD -- more importantly, she believed in herself.  And because we believed instead of doubted, the next week when we worked together it was totally different.  Same bedroom, same body, same debilitating last few years.  But it was totally different.  Her ability to initiate and control movement was different; her pain free range of motion was different; her ability to stabilize non moving parts of her body was different; I'm talking about significant, noticable differences in her head, trunk, and limbs -- despite a stressful week of seizures so severe she nearly missed her own 40th birthday party.  I knew it, she knew it.  No miraculous recovery, but certainly some conductive magic.

When I commented (excitedly and amazedly) KD smiled and said she had been practicing.  Practicing basic movements physically when she could, in her mind -- visualizing -- when her body was too tired.  Thinking the movement commands to herself or having a friend repeat them out loud to her over the phone.  I lift my arm; I hold my head up; I move my leg.  There was no reason that this could not have been happening previously -- except that despair and frustration and hopelessness probably made trying and practicing seem futile.  A bit of belief -- an attitude adjustment -- refuelled KD's natural determination of steel -- I can; I will.

We talked that day about the verbal intention used in the CE task series -- not in terms of what rhythm was used or in terms of connecting intention and movement through  external and internal commands and involving higher brain functions.  We talked about the affirming power of the statements in positive present tense expressing and painting a picture in her mind of what she wants.  I lift my arm; I hold my head up; I move my leg -- out loud, in her mind, over and over again stating the goal in present tense as if already achieved, speaking what she wants not what she doesn't, replacing conscious and subconscious I can't with I am; I do; I will until.  Creating an image and holding it firmly in her mind's eye -- believing, seeing; seeing, believing.

We say 'listen, say, do' when explaining verbal intention --
Perhaps we really mean 'listen-say/believe/visualize-do'; perhaps the conductive magic is about what happens mentally in those precious seconds before the 'doing' starts.  There is no shortage on literature about the power of positive thinking, goal setting, and affirmation -- perhaps this should be included in our quest to define and make sense of Conductive Education.

"What the mind can conceive and believe, the mind can achieve"
   ---Napoleon Hill