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'.

Thursday, February 16, 2012

Is it CE? YOU tell ME! - the long awaited sequel part 1

In my last posting I wrote about working conductively with LE, an adult with autism. In this post I want to share some thoughts and experiences about working with SJ, a 63 year old woman with severe depression and a pervasive personality disorder presenting as complete disconnect from everyone and everything.

I have been trying to write this posting for a long time -- I actually have several months worth of jumbled thoughts and notes that I have been keeping for when I was ready to write this, and in fact thinking about writing this has made it impossible for me to write anything else.  In a nutshell that is what it is like to work with SJ -- she is an energy vampire who on a bad day sucks me dry rendering me emotionally spent and making it hard for me to do anything else, and even days that are good by her standards are still very draining.  Working with SJ makes me doubt myself and what I have to offer personally and professionally.  Many of my sessions with her are complete disasters with no discernable positive outcome or flicker of success.  Even on our better days I have this overwhelming feeling of losing the war despite winning a battle, a feeling I have not had professionally since working with a close family friend with ALS in her miserable last stages of rapid deterioration.

SJ started working with me several months ago through the Enable Me program and has since chosen to work with me privately, twice weekly -- this is an important detail as it is a very full on and intensive way to work with somebody.  She demands a lot of my mental and emotional energy.  I'm sure she will tell you it is no picnic having me turn up at her door twice weekly with my high expectations, positive determinism, hope, and cheer in the face of this terrible illness that has made the thought of getting out of bed let alone participate in normal activities of daily life seem impossible for SJ.  She might not have a physical or neurological disability but she is one of the most impaired people I have ever worked with - and that again is a big statement coming from me.

I should add that I like SJ -- I like her a lot.  In the moments when the real SJ claws past the depression and de-personalization she is intelligent, witty, engaging, has a sense of humour, takes an interest in me and my other clients and my life, shows me photos and tells me about her life before this.  My main purpose most sessions is to help create enough of a gap in or a distraction from the black cloud so that the real SJ can claw her way out, even if it is only for that hour or a small part of it.  There are often days, and recently weeks where I have only seen the depressed and depersonalized SJ.

I don't know if SJ believes I can help her, but she would rather have me there than to get through her week on her own.  She has tried everything else -- every medication, several hospitalizations, several rounds of shock therapy -- and I guess my cheer and bossy insistance that she participate in life seems the lessor of such evils.  I don't know if I believe that I can help her.  I believe that supporting her physical health can only help her mental and emotional health, and we try to do this through basic activities like getting out of bed and moving, participating in anything regardless of how minute her participation is, having a shower and taking care of basic hygiene,  taking part in simple healthy cooking and eating something nutritious, and getting outside even for a few minutes.  SJ feels that she cannot do any of these things on her own, and there are many days even with me there that they remain impossible for her.

I don't know if I believe that I can help her, but I know that I believe it is worth trying.  Her case manager believes that she will not get better and that I should brace for the worst -- he told me that there was nothing that could be done and that I could at best hope to make a moment better.  The mental health team feels that she is not responding to their intervention and the other day they said that they were supporting my work with her because it was the first time in a long time she had been willing to engage with someone even though they thought nothing would come out of it because nothing could be done.  My blood boils when I talk to these people -- how dare they write off a person, SJ, my client?  How dare they tell me that there is nothing that can be done just because they have run out of ideas? How dare they judge her potential based on their failure? How dare they pat me on the head when I'm excited about a tiny step forward or try to placate me by reminding me that this is how it is for SJ when I'm worried about a step in the wrong direction?  If they think I'm that silly and naive why the hell would the chuck me in on my own to work with her?  They have no hope for this woman, they do not believe that she can be helped or that it is worth trying, they 'gave her to me' as a way of clearing out their 'too-hard basket', and have stopped trying because she has not yet responded to their best shots.

I believe that 'they' are wrong.  There -- I said it out loud.  Yes I'm 'just a conductor / personal trainer and they are 'the mental health team', and what do I know, but I believe that they are wrong.  I believe that they are blaming her for their failure and lack of solution options.  Even after awful sessions on very bad days for SJ I believe it is worth trying; and on days when I've failed to make a dent in her black cloud I leave wondering what else I could have done or said.  I certainly question what I have to offer her, and I'm not sure that I believe that I can help her, but that is not the same as not believing that she is help-able.  And I hear my mentor AB's voice in my head - 'if something doesn't work we find something else to try or another way to try the same thing - this is what conductors do'.

If the student fails to learn, the tendency, says Feuerstein, is to blame the child: 
'We have a stiff finger that goes only in one direction...  One of the great problems is to make this stiff finger more flexible so that it turns towards oneself, toward the teacher'.  
The teacher has to ask himself, 'have I done all I needed in order to change this child?
--Florence Minnis in The Transformers: The Art of Inspired Teaching (1990)

I needed to get that out of my head so that I can write about the actual insights I've gained and lessons learned and reinforced from working conductively with SJ.  To be continued...


  1. I love your insights Lisa. I love the way you articulate CE in relation to non-typical CE scenarios. I especially like your statement, "How dare they judge her potential based on their failure?" My family has come come across that so many times with my little brother, that frustratingly prevailing attitude that if "their" approach hasn't worked, nothing will. You are such an inspirational person, thanks for keeping us updated!


  2. Thanks Jalyss -- hope your studies are going well and looking forward to more of your posts on CE and your professional and sister insights


  3. lisa, i'm interested in knowing which 'tools' of CE you use with this lady. From reading your posts i can see you definitely are conductive with your 'non-typical' clients but i am just nosey and wondered how much you are simply thinking like a conductor or actually using the conductors toolkit (rhythm, intention, facilitation etc...). I sense from your previous post about the autistic client that you used lots of those tools with him, is it the same in this case?

    Thanks for your articulate and interesting posts about what we are all doing in such different contexts!


  4. Thanks Jules -- you are absolutely right that with SJ a lot of the 'conducting' happens in my head -- in my thinking and in my general approach to people as people who can learn and to disability as problems to be solved vs 'coped with'.

    But there are some specific things from our 'toolkit' that I use. I work with her a lot on intentions - and I cross over a lot here into the world of 'affirmations'. For example one of the pervasive things that SJ says and feels is that ' nothing looks / feels real' -- even though she 'knows' that they are real. So when she notices something - 'i'm thirsty' or 'i'm hot' I try to connect them to a statement that reminds her that things are real and that she is there; and I get her to say it out loud. So 'I'm thirsty' -- might become "I feel thirsty, that's a real feeling' and 'I'm hot' might become 'I feel the sun on my skin'. I know it is not intending an action but it is replacing a self defeating thought pattern with one that I can work with. I can't do anything with 'I'm thirsty and I'm hot but can't be bothered to get up and get a drink, but I can work with I feel thirsty and I feel hot, and I know I'll feel better if I get myself a drink. I'm trying to help her be able to initiate action with intention -- she is able bodied and capable of getting the drink but stumbles on getting herself to do things because the usual thinking pattern is what's the point or when I get up it doesn't feel real.. I'm trying to have her be conscious of what she does feel and to connect actions to those feelings.

    Rhythm -- not at all -- many of our 'CE typical clients' find the counting and rhythmic movement surreal until they realize how much it helps them so I figure not to bring additional absurdity in to her life

    Facilitation -- often - SJ has a history of back problems and combined with her current status of nearly complete inactivity (beyond sedentary) -- so things like getting out of bed or standing up from a chair are getting harder (this doesn't help her sense of well being). So I'm teaching her the basic tricks for changing position etc -- and I definitely don't give her more support than she needs or help more than is necessary, and she knows that I'll help her if she needs help but that my expectation is that anything she can she has to keep doing.

    1. I have explicitly taught her what 'orthofunction' means - at least how I use it. SJ knows that I don't expect her to be perfect, but that my expectation is that she is the best SJ she can be in that particular moment. She also understands that my expectations might be a tiny bit more than what she can do ('zone of next potential?') and that she is expected to try to do a tiny bit more than she thinks she can do and I will meet her there.

      In my first year at NICE we had to do a paper on 'rewarding effort' and 'least necessary help for success' as key psychological tools in our kit - these are guiding principals for me in virtually everything I do. I might have anted to get SJ out for a walk and only ben able to get her to get out of bed to play cards with me. I can genuinely tell SJ that I'm really happy with what she did on a day and she might say it's nothing, all I did was have a shower and play cards with you, and I know how much effort went into her getting out of bed and getting dressed and dealing the cards and concentrating on the game and can help her see her efforts as achievements that matter as she fights her battles instead of letting her dismis her efforts as nothing or being disappointed that she couldn't do what we had planned to do.

      And I tell her why I'm doing what I'm doing or saying what I'm saying -- SJ is certainly very depressed and her personality and thinking is totally disordered but she is interested and able to understand and I am hopeful that if she can learn to apply some of these techniques they will one day become part of her personal toolbox.

      Does that kind of make sense?

      Cheers -- Lisa