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, October 26, 2011

Conducting when it's Confronting

I try not to roll my eyes when talking to some well meaning person about 'what I do for a living' and 'whom I do it with', when with their hand on their heart and their eyes welling up with tears, they tell me what an angel I am, express marvel at my patience, or assert that they themselves could never do it though they know it must be incredibly rewarding.  It angers, frustrates, and outright amazes me that when people see the people whom I work with, they see my humanity and not my client's, as if my client's humanity is shrouded by their disability.  But I try not to roll my eyes.  I try to respond in a way that is not pedantic or condescending because for whatever reason it is human nature for people to be frightened by those who are different, to prefer not to deal with the reality of their own mortality, to be generally uncomfortable in their own skins, and to feel confronted by the very physical world of disability.  I understand that for the most part people mean well but feel confronted.  And yes, disability can be very confrontational - even for people with disabilities, caring for people with disabilities, or working with people with disabilities.

Today I sat in my car sobbing after my initial consultation with KH because his story and his circumstances were confronting; because I already cared and wanted to help him but didn't know if I could, or where I would start.  I'm telling you this because though I love what I do, sometimes it is hard and sometimes it is confronting because life and disability and disability services can be unfair, awful, and heart breaking.  I've never really been good at the whole 'professional objectivity keep people at arms length thing' - and I accept that sometimes that means having very human, emotional gut responses to people that I meet, or things that happen in the lives of people I work with and genuinely care about.

On days like this I miss working with my very good friend and conductive mentor AB because we talked about this stuff; she validated my feelings of confrontation and was not afraid to show me hers - such a precious rarity in a senior professional and so important to my professional development.  On days like these I think about how AB mentored me - no actually, how she conducted me - from these moments of professional despair back into our classroom refocussed and ready to confront what had confronted me.

I often try to imagine what AB would tell me in moments like those after I met KH today.  AB would say "we have to try" no matter how impossible something seemed. If something we tried didn't work she would say "we have to keep trying until we find a way".  Today when I told KH that I didn't know how far we would get but that I wanted to try, he typed out that he was expecting me to tell him that there was nothing that I could do, like everybody else told him and that he was happy to try.

If I told AB I wasn't sure if I could help someone, she would say "of course you don't know, you have't tried.  But you are a conductor", she would say with pride, "we try, this is what we do".  She is so right - though there may be similarities from one person to another, each person, each body, each disability is different.  We improvise, we think on the fly, we make it up as we go along, and over time and with experience start to refine this 'trying'.

If I told AB I didn't know where to start, she would ask me about what KH could do, and would remind me to start there.  Though I'm still not sure exactly how or where I will start with KH, I am amazed that in his 50 plus years of living with his brain injury he has found ways to manage as much as he has, and trust that he will show me where to start.  AB would say "conductors don't have every answer, but that's ok if we keep looking -- this is what we have to teach the participants".  Thinking about KH again, I remind myself that sometimes this is also what they teach us.

Today after I met KH, I sat in the car and sobbed -- it was confrontational and I was upset and I wanted to help but was scared.  I think that we need to talk to each other about these feelings -- I believe that they are a very real part of being a conductor.  I hope to be able to write something motivational and exciting about what conductive education has helped KH achieve sometime soon.  But today I'm writing to tell you that though meeting KH was confrontational, upsetting, and caused me to doubt what I had to offer through conductive education, after my imaginary debrief with AB this afternoon I am ready, willing, and excited about the opportunity to try.

Monday, October 17, 2011

A Little Hope Goes a Long Way

"For the first time in years I have hope" MR said this morning, after gliding beautifully up and down her hallway several times , swinging her arms and counting 1-2 as she stepped, stopping, correcting herself and starting again with control when she lost balance or stumbled. "I feel like I don't just have to cope with it by myself in my head, that there is something that I can do for myself and that I know what I can do instead of wondering if I can do this or should do that".  MR is a single mom with multiple sclerosis (MS) whom I have been working with intensively with over the past several weeks through Phase 2 of the Enable Me Project. When I met her she was beside herself with depression and fear about her worsening walking and balance and not psychologically ready to look at a walking aid.  She was completely isolated, only leaving the house to get her son to school and do the groceries because it was easier not to go anywhere than to risk falling.

Enable Me Phase 2 is a shorter initiative that was tacked on to the end of the Enable Me Project -- again investigating the same pro-active intervention opportunities but this time for a very different population. Where in Phase 1 the participants were elderly people living independently in the community, the participants in Phase 2 are already 'in the system'.  They are people with disabilities that are already clients of Community Care Northern Beaches (the organization running the research project) either through Community Care's community living program or through their 'older parent carer' program.  At first the case managers were not sure whether it would be appropriate to have a personal trainer involved with this population group, but the case manager that I worked under in Phase 1 argued my case, told them that I was 'specialized' and had experience in disability and told them what she could about Conductive Education.  It helped that of all the clients in Phase 1, the ones who had the most success with 'personal training' were surprisingly the 'frailest' and most 'challenging' (translation - the people with chronic conditions such as stroke and back problems or early stage Parkinson's, or otherwise in the 'too hard' or 'nothing can be done' basket - exactly my cup of tea).

In Phase 2 of Enable Me -- so far -- I have been working with adults with MS, cerebral palsy, stroke, acquired brain injury, intellectual disability, autism, and pervasive anxiety disorder on a range of goals as varied as the individuals and conditions setting them. I am spending much more time as a conductor and continuing to test the boundaries of CE as an approach to working with people with and without motor disorders.

Don't get me wrong -- I'm glad for the tools of my personal training trade; MH has an acquired brain injury but her main goals are around fitness and weight loss; a few minutes of yoga are the difference between LE losing it completely or being able to recover and make it through the session after a massive panic attack; JW certainly has cerebral palsy but wants the strength to swim a lap of an olympic pool.

More importantly, I'm glad for the philosophical tools of my conductor trade from which I approach people.  I'm glad that I can see the person and not just the problem; that I seek the why that underpins the what of their goals and that I value it; that I have the patience to wait for sometimes minute results and that I never get tired of wildly celebrating achievements large and small; that I appreciate the effort and determination it takes to stand up and try again and know to reward effort that when there are not positive results; that I know I need to equip people with flexible and dynamic tools which they can use and modify as and when needed instead of with a list of meaningless exercises to do every morning.

MR really did walk beautifully this morning; it was the best I have seen her walk in the 7 weeks we have been working together. She seemed to glide down her hallway, swinging her arms, stepping evenly while counting 1-2-1-2, stopping to make necessary corrections without me having to say anything. When I told her so she beamed with pride -- which certainly suits her better than the despair she wore when I first met her -- and told me that her daughter and her friend had both said her walking was looking better, and that she had been out to meet her girlfriend for lunch for the first time in months.

I'm glad that I could teach MR some core strengthening exercises that she could practice on the swiss ball.  I'm really glad that because of Conductive Education I knew enough about MS and ataxia to be able to help MR with her walking and could help her make sense of her ataxia.  I'm most glad that because of the way that CE has taught me to approach people I knew that the pride and sense of achievement I saw on MR's face was more important than the fluency of her walking, and that the real achievement was not that she walked well enough that her friend noticed but that she had the confidence to go out and to meet her friend.  And I'm over the moon ecstatic that for the first time in years she has hope because my years in Conductive Education have taught me that hope is transformational; it influences potential and outcome long after a person stops 'doing CE' because that person believes in possibility and in herself again.

MR will be discharged from Enable Me next week. I would worry, but I know that she leaves with a pocketful of tricks and techniques, and enough hope to know that it is worth using them.

“We are all in the gutter, but some of us are looking at the stars.” 
― Oscar Wilde, Lady Windermere's Fan