Psychotic discourse – reflections on Kate’s story

Peggy Sax: January 4, 2011

Several years have now gone by since I/we wrote this chapter. Over the recent holidays, I got together at the local coffee shop with Kate. Often when she comes to town, she contacts me to catch up on developments in her life since her experiences with psychotic depression and mania. I am grateful for this opportunity and it is akin to seeing an old friend.

Kate has now graduated from college/undergrad. university. Among other things, she shared with me a compelling piece of writing from her senior year for the assignment “The story I can’t tell.” After reading this piece, I asked her “Can you let me know if you have any recommendations for others (friends, family  and/or health care professionals) who might one day find themselves in the position of supporting someone through an experience akin to your experience?”

Here is Kate’s response:

The most important thing for people to remember when trying to support someone going through that sort of thing is that no matter how much the manic/depressive/psychotic person seems out of it, confused, or crazy, they are still experiencing the world in such a way that love and kindness is the most healing factor.  I think people have a tendency to want to distance themselves as much as possible from someone who isn’t making sense because of their psychosis,  for their own psychological safety or perhaps out of fear or just being freaked out by it.  That’s fine, but its important to remember how that psychotic person is still human and in need of love especially in the state they’re in.  When I experienced that mania I remember how some people just gave me looks like I’m crazy (even if its true that what I’m saying isn’t making sense)  while other people expressed care and kindness.  When people treated me like I was crazy, I became more crazy. But when people treated me with care and love, they were better able to connect with me and it helped me get better.I hope that answers you question.

Words of wisdom, and such a good reminder. I will add here some reflections from NPCI Study Group members. I am happy to add to these, and of course, to pass onto Kate any further reflections.

Margaret Wells: February 16, 2011

Peggy, If you still have contact with Kate, would you let her know how important this work is.  I was mesmerised reading this lived experience of depression.  It made me see it, I felt like I could almost understand how it might be, to be caught in that web.  It helped me to understand when I work with really depressed people that this might be like, what it means.  It made me appreciate that awful conflict of wanting to be engaged and being unable to.  Thanks for helping me to understand the need to stay in touch, sometimes I’ve felt a bit like a stalker when depressed clients haven’t turned up for a session and I contact them, and write to them to let them know I have them in my mind.  I feel better about being a bit persistent about not colluding with the tricks of depression that encourage isolation and separateness.  I’ve had a number of thoughts about the use of this work.  I have a client who wonders about her experience with depression – she wonders if what she’s got is the “Right type of depression” for her situation.  Her descriptons reminded me of some of Kate’s.  I thought I might share some of them with my client and see what she thinks.  I’m hoping she might feel validated with her experience.  The other thought I have involves sharing this work with a colleague who is a Consumer Consultant (a person with a lived experience of mental illness who works to advocate and support consumers of tertiary mental health services).  I would be interested to learn how she connects to Kate’s writing of this experience.  I’m going to give this some more thought and get back to you and how these thoughts I’m having develop and how I progress the use of this valuable piece.  Many thanks.

Peggy: February 17, 2011

Thanks, Margaret. I will definitely pass on your words to Kate. She will be so pleased to hear that her words are useful to others. Yes, keep us informed about any ideas you might have.

I think so often after writing something it’s hard to remember that people will actually READ it. I’ve been surprised by how infrequently I hear from anyone having read Kate’s story or the other firsthand accounts in the Re-authoring Teaching book (such as Nicole’s story in http://reauthoringteaching.com/community/index.php?topic=552.0). I find these stories not only incredibly moving but very helpful in shaping my work as a practitioner. Your post reminds me that the power of hearing from “experience consultants” (or “consumer consultant”) is indeed strong. I actually never doubted this…something else must be getting in the way. Busyness in people’s lives is certainly one factor. I wonder if there is something else.

I’m going to send your response to Kate right now…Peggy

Margaret, I wrote to Kate this morning, and she immediately sent me back the following:

Thanks so much!  I’m really glad that that writing helps people so much. It reminds me that it wasn’t all for naught.

Cate Ryan: September 10, 2012

Hello Kate, Peggy and Margaret…hello other who may join in later,

Peggy, I’m not sure if you are still in touch with Kate, though as away to participate in this conversation and reflection, I am going to propose some thoughts and questions after reading this chapter. If there isn’t a way to share these with Kate, I understand, and also feel this may also help shape what I’ve been thinking to talk about for the colab chat.

Kate, I came to these pages looking to possibly find a little more insight into ways I might be able to meet with a young woman who I know, who is currently hospitialised after experiencing sympotms that could fit into a description of psychosis. When meeting her, I’ve felt at best, a caring person looking in from the outside and at worst, completly inadequate and up agaisnt a world of not know, not understanding and feeling uncertain what ways to take steps in any direction. this feel has left me with a feeling of perhpas resigning to the ‘expertese’ of the hospital staff and their strategies, however, then left with doubt about how these ways ignore the young freedom she and I used to get in our conversations before she became so unwell. Reading your words in Peggy’s chapter, I’ve found more than I could have asked…a description that enabled me to perhaps, just see, maybe even just for a moment what it might be like on the other side of the glass as you named it. Though I realise the experience for the young woman I know will be her’s and may not necessarily mirror yours, I feel from witnessing the experiences and the many chats she and I’ve had that there are some openings to what it’s been like for her.

I was wondering Kate, if you might be able to help me understand some possible ways that people either side of the glass can do to counter act the feeling of hopelessness that the depression bullies us into feeling?

In piecing this experience back together to be visible for us all, you spoke about the experience of feeling like you were dying…if living in this hell, can you remember any expressions, verbal or non-verbal that cut through this deep fear so even a glimmer of life on the other side could be seen? If I wanted to offer comfort, hope or care is there a way to do so that may not simply be batted away by the depression?
You spoke about not being able to speak up for your needs and letting people know that “I can’t handle responsibility right now”, is there some way you can suggest that could mean we can check in about offering responsibility/activity vs. isolation and not collude with the depression yet, not add pressure?

Finally Kate, I also read about the inadequacy of biological explanations of what was going on physically for your body and again was left thinking, how else might can the cloak of confusion be sliced to reveal the care, concern and hope others are holding for the future?

Thank you for teaching us from your intimate experience with this hell and then life again. I move on still holding my breath a little, however with many, many more windows that were previously available to me and connect with the young woman in her experience.

Yours in debt
Cate

Peggy: September 10, 2012

Cate,

I will definitely pass on your words to Kate. It’s been more than 5 years since her experience of psychosis that she wrote about in that chapter. Kate  graduated a couple of years ago from college (undergrad university); since then, she has lived with others in co-housing, experienced a long term relationship, and worked at least a couple of human service jobs. About a month ago, Kate contacted me to see if I would write her a reference “as a family friend” for a new job, working with people with disabilities. She is a terrific human being. I believe we will be connected for life.

Kate taught me a lot – and continues to be my teacher. I think anti-psychotic medication acted as a life-saver to bring her back from a very catatonic state. She continues on meds, although she has also worked hard with psychiatrist(s) to decrease the dosage. However, tending to the biological side of her illness (she has been diagnosed with manic-depressive illness) is only part of her commitment to healing. Kate’s spiritual life is also very important to her. She carries an abiding commitment to social justice and to doing good work in the world. For good reasons, her family is very proud of her. Peggy