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'.
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...