Is it CE? YOU tell ME! The long awaited sequel - part 2

This posting is a continuation from my last blog entry.  Now where did I leave off ... insights gained, and lessons learned and reinforced from working conductively with SJ, a woman aged 63 with severe depression and a pervasive personality disorder presenting as extreme de-personalization.  I will set the scene by saying that in minute but significant ways I have had at least comparative success working with SJ - on days when nothing works, I have to remind myself about things like even if I couldn't get her into the shower today, the showers she has most days that I am there are the only showers that she has been able to have in months; that sitting on a chair beside the dishwasher loading dishes that I rinse and hand to her one by one might be the only way that she participates in normal daily life that week; and that the handful of times I have been able to help her feel safe enough to risk going outside of her house are the only outings she has had in months.  I'm not claiming that I have solved this -- not in any way.  I want to articulate how coming in conductively has been helpful when working with SJ and to write about other things relative to the practice of CE that working with SJ makes me think about.  So -- in no particular order other than as they appear in my jumbled notes here are some points to ponder.

I miss having a team of conductors, or a team full stop, around me to problem solve with and to debrief with.  I've been working on my own for a long time but I have been lucky in my years to have worked with some amazing conductors in amazing teams.  We often talk about the group as essential to CE -- it is not just the group of people participating that is important, but the group of conductors, with their different strengths and personalities and ideas.  People other than my fiance AR to share my moments of brilliance, my tiny successes, my catastrophic failures; people with like-minded approaches to talk it out with, so I don't take it home with me; people other than me to wind me up and give me the strength to go in there for one more round.  I am so grateful for my network of conductor colleagues all over the world -- your cyber support, ideas, and emails sometimes literally keep me afloat

It is such a basic thing -- we find a way for our clients to do for themselves instead of be done to.  There are carers who come in and help SJ out with shopping and cleaning and fetching her medications from the pharmacy but when I am there she participates; she does; she is active not passive.  Yes I help her, but only when she can participate, and if she is not able to participate I leave.  The motivating factor might in this instance be that she doesn't want to be alone, but she participates in some way every time I am there.  When she says it doesn't seem real, I reassure her that it is real and that it needs to be done.  The carers tidy around her and she hardly notices -- it further de-personalizes her to be cared for.  When she is involved and active in her own care she becomes more engaged
    I give her choices.  I always phone when I'm on the way to make sure she is expecting me and wanting me to come -- a note in her diary is as good as a wink to a blind man.  She chooses to let me in (or not to), she chooses to continue having me come, and she has a contract with me that says that if she chooses to have me there she is choosing to participate.  She understands that I only expect her to be the best that she can be in a particular minute (ie orthofunctional) and she trusts that I will adapt the task to suit her particular minute and thus enable her participation and engagement.  I remember in first year university we had a lecturer (Jayne Titchener) who explained the difference between forward chaining (starting a task from the beginning and learning each bit until you get to the end which might mean never seeing the end or having the success) and backward chaining (learning the last bit first to give the experience of success and completion of the task).  She gave the example of a child with minimal motor control learning to do laundry -- having to sort the clothes by colour and by fabric, then getting the clothes and the powder into the machine -- tasks some of the children we were learning about would not ever be able to do -- vs starting the teaching process by getting the child to push the button so that the machine starts.  I think about this when working with SJ -- what bits of whatever we are doing will she be able to do today, that will give her a sense of participation and achievement?  

    I know to start with what she can do and build from there instead of focussing on what she can't do; I know to play to her strengths.  I also know to have back up plans for my back up plans and to be able to adapt to her mood and moment.
      We work with the whole person -- when I first started I had case managers saying that I wasn't to engage in conversations about how SJ was feeling or about her depression -- I was just to go in there and promote exercise and activity.  Which really didn't work -- she already has this surreal feeling of disconnect and non-existence.  Imagine me going in there and saying never mind how you feel, today we are going to do 5 sun salutes.  Imagine me going in there and not ever finding out that the only thing that keeps her going is the hope that one day she will be well enough to be a good grandmother to the grandchildren she isn't well enough to see.  We know that you can't separate a person's physical self from their emotional self from their psychological self -- we approach people holistically - which should be wholistically.  We understand that the what of a goal is not motivating without the why of a goal and that good conduction relies on connecting to the why.

        I have earned SJ's trust.  This is invaluable.  I think back to those moments when a child takes their first unaided steps with you in the classroom, or when that adult agrees to get down on to the floor for the first time so that you can teach them how to get up, or when that person with MS stays back to tell you what they are most afraid of -- those moments when you realize that the person you are working with you trusts you and you feel the weight of that responsibility as well as the gift of that responsibility.  And you invest further in that teacher-student relationship because they have given you this trust and it enables you to give more when you are working with them -- to push them that bit further; you are in it with them for the long haul, you are no longer just someone that they pass on their journey.  It is terrifying; it is humbling; it makes me work harder and helps me get in there and try again

        I cannot imagine what it would feel like to feel disconnected and de-personalized all of the time.  SJ says she looks at things and they don't look real, they seem flat, she feels nothing for them.  I look for proof that she is real, that I am real, that things around her are real so that I can present them in a multi-sensory way.  I plan activities that have sound and taste and smell and touch.  Things don't look real but if we get outside to her garden and she feels the soil or the overgrown grass and weeds the tactile stimulation sometimes grounds her
          I know to reward effort not just the end result.  I know to notice and celebrate tiny successes and achievements.  Over and over again my mainstream personal training clients ask me if I always get so excited about tiny things -- and I think about some of the people I have worked with over the years for whom the tiniest achievement was actually monumental and how glad I am that I was taught by other conductors how to notice and celebrate these things.  It is something special that we as conductors do; it helps our participants see value in their efforts and personal achievements large and small, and a day full of celebrating every tiny achievement certainly makes my days a lot more exciting and wonderful

          I choose not to give up on people, and even when I'm disappointed in the session or in myself, I try not to be disappointed in them.  With SJ sometimes we need to acknowledge how things went in a previous session so that we can move on, but she knows that each session we have a choice; we either build on the success we had in the last session or we wipe the slate clean and move on.  There is no judgement -- the expectation is that she is the best that she can be in that moment and some moments are bloody awful for her.  We wipe the slate clean and move on.  I can think of children that screamed the roof off of buildings for the first week of CE intensive camps that ended up being the kid who made the most progress by the end of the program.  We don't stop working with somebody because they are difficult, or because they fail, because we know that all it takes is the right thing said or taught int he right way at the right moment that can turn things around for that person

          Be prepared to be a learner, not just a teacher -- the teacher and the taught together create the teaching -- I admit I'm not an expert in depression and depersonalization; I challenge her to teach me about it and to share her experiences so that I can learn to conduct her better.  Condutor SM encouraged me to get involved with a craft project that SJ had mentioned -- I was worried that I couldn't lead it if I couldn't do it and SM told me to let SJ lead, to give her something concrete that she could teach me as part of her session and watch her thrive.  We learn to listen to our clients, to let them lead the way.  It always made me crazy to work with strict data collection tools that rated the success of CE based on whether a participant worked towards their goal as you predicted they would -- because we know that learning can take any number of paths, and that when somebody learns something the potential for what they can learn next expands exponentially.  With SJ I don't have a specific goal or agenda other than active participation and engagement -- and I let her lead the way and travel with her, and we both learn along the way.

          I am hopeful that things can get better for SJ -- she despairs that there is nothing can be done.  This is the message she has been given from the medical establishment who have tried to do things that haven't worked and have told her that they have nothing left to try.  I am hopeful because I believe that there are things that perhaps can change within SJ, tricks she can learn to manage her disability, skills or strategies or ways that she can personally and actively be involved in fighting this disease versus letting it completely envelop her, problems to be solved versus coped with, something that she can personally do to make things better for herself versus lying in bed waiting for a magic pill to be prescribed.  I am hopeful because I have seen these transformations happen with other people I have conducted -- it isn't about the diagnosis, it is about the transformation of that person from one who is done to to one who does.  SJ despairs that there is nothing that can be done.  I am hopeful that things can get better, and that my hopefulness is just contagious enough that she gets a bit hopeful too -- because then I'll really be able to work with her