Sunday, February 17, 2013

Fifty shades of "no"

I've been sitting and stewing over the fact that one of my clients decided not to come to his session yesterday. Obviously, it's not the end of the world, and it's mostly likely he'll be back. But I know he's upset with me and he's struggling with a lot of feelings because of the difficult work we're doing right now.

Occasionally, clients with whom I've developed a fairly stable relationship (and I can tell you, that has usually come after quite a long time of working together- usually years), who I can almost always count on to be there for their sessions, refuse to come to music therapy. 

And  when I say "refuse to come to music therapy" I mean I've walked over to their building, signed them out, collected their outer gear, walked in to the group where they spend their days (along with the rest of the people who live with them and along with their staff people), and asked, "would you like to come to music therapy today?" 


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I'd like to pause here to say what a vulnerable moment this is- for me anyway- as a music therapist. I mean, I'm standing there, exposed, and, honestly, it's like inviting someone out on a date in front of their entire family. Only it's therapy (which is just as intimate as a date, if not more so at times) and the other people in their group may have feelings about this particular person being invited to go to music therapy (when they themselves are not being invited) and their support staff who usually have their own feelings about the person who's scheduled for music therapy as well as a series of opinions about me and what I represent (sometimes good and sometimes not so much). Additionally, support staff have a series of beliefs and understandings (usually passed down from their supervisors) about their role in clients heading out to programs (such as music therapy). Commonly, those beliefs and understandings involve making sure the person is clean and tidy and goes and does what s/he is supposed to be doing. 


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Now, most of the time, the folks I've worked with for a long time jump up and come over on their own and then pull me to the door. Others go and sit in their wheelchairs, waiting for me to take them out. Some people who have a harder time initiating actions or simply have a lot of physical involvement making it more difficult for them to stand and greet me, wait for me to approach them and let me know they want music therapy that day by making an effort to get up and go with me.

Over the years I've discovered a large (and important) part of my work is figuring out how my clients (most of whom don't use speech) communicate "no".  Some people (the ones who usually hop up to meet me) simply don't get up when I appear and remain seated. Some (who need more physical assistance) let me know by not allowing me- or just not helping me- to put on their coats. Others avoid going toward the door, and I've had a couple folks  pretend (vigorously) to be asleep. A few of my clients will come part of the way with me and then stop repeatedly or keep going in the "wrong" direction, and still others come to the session, wet themselves and have to return to their buildings to get their clothing changed. 

The gentleman I went to pick up yesterday is someone who usually gets up the minute he sees me and comes quickly over to take me by the wrist and pulls me toward the door. His "no" came after a particularly hard series of sessions in which I've been challenging his way of thinking about me and about the role of music therapy. 

His "no" started when he stayed seated, looking at me with a rather unhappy face, leaning his head on his hand. I wondered (out loud to him) if he had a headache (it was pretty loud) or if he was tired (sometimes he doesn't sleep too well). I waited a short time and then I told him I'd go out for a few minutes, come back and check again with him. "If you still don't want to come, that's fine, and I'll check in with you again next week."

So I went and stood in the hallway for three or four minutes and then tromped back in with my armload of sweatshirt, coat, gloves and a hat for him. He still didn't move. 

Mercifully, his support staff didn't tell him to "get up" (which is what usually happens, and, when they do that, he usually stands up and comes with me, but I'm well aware the entire time that he would not have been there had they not told him to be, which, I think we'd agree, is an awful feeling- for both of us). 

I offered to sit with him for a bit, because sometimes he actually needs some more transition time (or to just think about whether he really wants to skip music therapy that day- and it's very rare that he does), but he still didn't get up. 

Just as I was about to turn and leave, he got up and walked past me to the table (where there was more space for me to sit with him and also plastic blocks he likes to hold). He couldn't find any blocks (they were all zipped into a bag, and I guess he didn't want to mess with it just then), and he went to sit down in another chair. This time there was space next to him, so I sat down and pulled off my hat. 

I invited him to let me know if he wanted me to leave by looking toward me and if he wanted me to sit with him to indicate this by tapping my arm. He glanced my way, fleetingly, twice and made no move to grab my hand (which is what he generally does). 

"Okay then. I'll check in with you next week. I'm glad you let me know you didn't want to come today, and I'm glad you let me know you'd rather I don't sit with you right now."  

I wished the guys a decent weekend and headed out into the hall, kind of hoping he'd change his mind and come after me. He did not. 

I headed back to the Music Room, pondering the whole thing, reminding myself that he was likely wanting me to feel as rejected as he'd probably felt in our session. 

But then the inevitable worry began: Did I say something in the wrong way in his last session? Did I accidentally offend him? Did I hurt him by saying something he wasn't ready to hear yet? Is it irreparable? Will he give up and stop coming to music therapy? 

As I was pondering these questions, yet again, this morning, I realized, not only is this the usual litany I go through when a client chooses to not come to music therapy on a given day, but my confusion- my wondering what happened, did I do something wrong, will this person leave- probably very much mirrors the feelings my clients have had with regard to their families placing them in an institution.

Perhaps (along with "no") I was "hearing" his (and many of my clients') experience of ambiguous loss,  which is a loss that doesn't have clear closure and around which there are questions and a great deal of uncertainty. It's often thought of in terms of families' feelings regarding a child who is disabled or mentally ill or a parent or spouse who has Alzheimer's (for example), but there is little, if anything, written about the experience of the person whose family sees them as "gone" or "lost" to them because of their disability. 

When I arrived back in the Music Room, I found myself singing the following song, and once again, I felt amazed at the way our minds speak to each other through music.











6 comments:

Rachelle Norman said...

Roia,

I always appreciate your willingness to share your feelings of vulnerability with the rest of us. I can definitely identify with that naked, vulnerable feeling when approaching someone to invite them to music therapy.

Roia Rafieyan said...

Likewise, Rachelle! It really is one of those things they don't tell you about in music therapy school.

Do you find support people in elder care to be rather insistent on folks going to music therapy? Is saying "no" something that is as necessary, do you think, to your crew as it is to the folks I work for?

Emily O. said...

I work in elder care/hospice as Rachelle does, and sometimes you do have to reinforce with support staff, families, or even patients that it's okay to decline a visit and it won't impact the therapeutic relationship. I've had family members try to shout in a peacefully sleeping patient's ear to wake her up for a visit when my usual goal with her is to help reduce her anxiety!

Just like your folks, ours may have a disease or a disability that they didn't choose but strongly impacts their daily lives, so being allowed to make choices and have those choices be respected seems essential to QOL. Patients may be in nursing facilities where they don't have much of a say into their waking/ sleeping times, mealtimes, visiting times and bath times, so having the ability to say no (or yes) to something taking up time in their day is important.

Thanks for your thoughtful blog entries!

Roia Rafieyan said...

Emily, thanks so much for bringing your voice into the conversation. I figured nursing homes were going to be pretty much the same as institutions. It's awful when it seems people are working at cross purposes. And it's odd how easy it is for folks to get into "you must comply" mode. It's as if experiences become rules very quickly and there is a fear the rule will somehow be broken.

I think being in situations such as these with our clients leads to a great deal of countertransference, and there's such a need to monitor our tendency to split (meaning we may inadvertently respond by implying that staff or family aren't being supportive or thoughtful and we are). I try to be mindful of that, but it can be tricky to figure out how to let supporters know it's okay if someone chooses to skip music therapy for a day (or even many days).

Thanks for sharing your experience!

Tamara G. Suttle said...

The power differences between each of you and your clients is so much more palpable than the power differences between me and my clients.

Thank you for reminding me of the many ways clients can be coersed - by therapists and others - and the many lenses / blinders that I wear.

And, Roia, thank you for modeling (again) how empowering it can be just to be willing to listen and hear what our clients are telling us.

Blessings to you on your journey!

Roia said...

Hey, Tamara- Thanks for swinging by again and, as always, for sharing your thoughts! Yes, the power imbalances in an institution are, well, large. It actually goes well beyond the differences between "staff" and "client". Over the years I've been reading (on and off, I mean) an interesting book by R.D. Hinshelwood called "Thinking About Institutions- Milieux and Madness" in which he psychoanalyzes institutions as a whole and looks at how the staff need the clients to behave in a particular way and the clients need the staff to play a specific role and how that all becomes the mess that is an institution.

And, yes, listening is the largest part of my work- for any of us who work as therapists, probably. It does take a very conscious effort to "hear" my clients, but they always have something to say (*if* they think someone is listening).

Be well, my friend!