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 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.
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