Waxing physically and philosically...

After literally years of deliberation, and as a result of some delicate and some less delicate prodding, this blog is my effort to organize - to bring together - my thoughts about my work as a conductor and as a personal trainer, to rant and rave as necessary, to celebrate the little things and the larger moments of brilliance, and to share some conductive magic and life lessons gained through 'waxing physically and philosophically'.

Wednesday, April 27, 2011

More about Seeing and Believing

This speaks for itself


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)

Saturday, April 23, 2011

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

Tuesday, April 19, 2011

In the beginning ...


This promotional video -- just recently posted on a colleague and friend's blog -- was made (gulp) over a decade ago when the Adult Conductive Education Program at Ontario March of Dimes was literally in its infancy, and I was a newly graduated, wet behind the ears conductor.

Ontario March of Dimes continues to run successful Conductive Education programs -- http://www.marchofdimes.ca/EN/programs/CE/Pages/ConductiveEducation.aspx

On a personal note -- fond memories triggered by every face in that video -- the senior conductor AB who took me from student to professional, each person, each story.  If only I'd been blogging then -- what a wealth of untold experiences and stories.  I'd love to know how you all are now, and for you to know how much you have shaped me, how much you still mean to me.

Thanks Susie -- what a fantastic way to start my day!

Here is Susie's blog which recently posted the video, and where you will find a wealth of told conductive experiences:


There are places I remember, in my life, though some have changed
Some forever, not for better.  Some have gone, but some remain
All these places have their moments, 
With lovers and friends, I still can recall
Some are dead and some are living, 
In my life, I've loved them all                                                                 
                                                                  Lennon & McCartney


Monday, April 4, 2011

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