Back at it!

Okay. Seriously, this break from the blog has gone on way too long. Here's the thing though: 

I retired from my job in 2021. 

Yeah, I know. I never would have thought I'd be capable of it either, but here I am. Alive. Retired! And, astonishingly, kind of digging it. So...what the heck am I doing with myself?

I just finished a draft of an article for a special edition of Voices (with huge thanks to my friend, Dr. Henny Kupferstein, who kindly helped me re-organize and finish the thing already, before it ended up becoming a 387 page book). The title is Getting to 'no' you: When nonspeaking autistic people refuse music therapy. Here's the Abstract, in case you're curious:

Nonspeaking autistic people frequently begin music therapy at the request of others. Typically, family or care systems are tasked with making decisions on their behalf and have decided this service will be of benefit. Consequently, music therapy is a given rather than a choice. For this paper I have used my own evolving understanding to explore the complexities and power dynamics related to nonspeaking people being able to say ‘no’ to music therapy. Elements in this discussion include: (a) the ability, and safety, to say 'no' in the context of a culture of compliance (b) the complicated relationship between music therapists and the systems within which they work, and how this affects the therapy relationship, and (c) the role of music therapy practice standards. I advocate the following:  (1) presume competence; (2) enter the therapy space with curiosity and openness, (3) be willing to ‘get to know’, (4) coping skills or communication attempts are not ‘behavior’ in need of correction, and (5) learn how each nonspeaking person communicates ‘no.’ Actively encouraging and respecting treatment refusal goes a long way toward building a respectful music therapy practice/relationship.

 It was, as most things I seem to do are, a complicated topic. Not so much complicated because nonspeaking people should be listened to (that's a given), but more because I wanted to address (in as respectful and calm a way as possible) how many elements stand in the way of nonspeaking autistic people being heard at all, let alone experiencing self-determination. It, um, required a lot of editing before I could submit it. 

I finally finished reading Music heard so deeply: A music therapy memoir, by my colleague, Betsey King, which I quite enjoyed (especially the stories of her work). In fact, as I've discovered, one of the nicest things about being retired is having time to read! 

I've been exploring collage, because...why not? This one was inspired by one of the folx I worked with for a long time. He is a brilliant, curious man, who, besides being a news junkie, wanted to learn about space. 

As you might imagine, I miss the people who I spent so many years with as a music therapist. I suspect you'll be hearing about what it was like to spend my last year or so working, and retiring,  during a pandemic. 

So....you know...welcome back!  

Last chance lost...

I noticed this song- "Last Chance Lost"-  running through my mind over and over again as we struggled to come to some kind of....okay-ness, an okay space today in our session. My client has some very strong feelings toward me, and although he knows "we don't have that kind of relationship" it's hard for him to hear it. Over and over.  

Yes, and it's hard for me to keep having to say it, because I feel cruel. I mean, I realize I'm not being cruel. I'm being truthful (and a therapist), and I know it would be more cruel to lie to him and pretend I don't see how much he wishes this weren't "just music therapy" and it was a better version of his life. 

And I'd be lying to you if I didn't say the rescue fantasies on my end can be intense. If I weren't so used to this happening it would be freaking me out. But this is something I go through, and it's more so with some people than with others. 

But here he was, this man who doesn't use speech, working so hard to be heard- using his voice even (which is rare)- and there I was...rejecting him again. 

When I step away from the session for a while and think about it, I have an idea of how to proceed and what we need to look at: Where are the feelings for me coming from? What might they be helping him to avoid feeling? What relationship(s) might he be trying to create or re-create in our sessions? And so forth. 

But...right there in the session...I feel like such a jerk. 

It's not that I'm afraid he'll be angry with me- although it would mean the beginning of the long period of anger. 

There always seem to be stages in the music therapy process- at least with the folks I work with individually. Initially there's a long period of "I don't trust you." That's usually followed by "okay, maybe you're not so creepy," which eventually works its way into "must we leave now?" Then we get into the "I like you/I can't let you know how much I like you" period which gradually becomes "I love you and you should never leave me!"  

I think my client and I are in that latter period right now. And I'm in the complicated "be firm but kind and figure out a way to reject without being rejecting/remember you're trying to help him realize how he's relating to people that's not really working for him/come on, Roia, you can do this" part of the work. 

And I know. The big anger is coming. Okay, so maybe I'm a little afraid. It's hard to give up being loved. Not that the anger indicates an absence of love. It's just easier, I'm sure you'll agree, when your client is in the "you totally rock" phase versus the "you rejected me and you are horrible and cruel" phase. 

Anyway. We struggled. He was sad. I was sad on his behalf. 

It was hard for him to return his instrument at the end of the session, and he insisted on carrying it back with him to his cottage- where he finally gave it back to me after a brief, gentle tug to make sure I understood he wasn't happy about relinquishing me or the instrument. 

The only part of the song I remembered as we worked through this session was "last chance lost". When I read the lyrics I was fascinated (for the hundredth time) by how our minds create musical connections with people, with moments and experiences. 

Last Chance Lost

by Joni Mitchell

Last chance lost

In the tyranny of a long good-bye
Last chance lost
We talk of us with deadly earnest eyes
Last chance lost
We talk of love in terms of sacrifice and compromise
Last chance
Last chance lost

Last chance lost
The hero cannot make the change
Last chance lost
The shrew will not be tamed
Last chance lost
They bicker on the rifle range
Blame takes aim
Last chance
Last chance lost


© 1994; Crazy Crow Music 

Reflecting on feelings of powerlessness (a video blog)

I didn't say it specifically in the video, but I think my whole countertransference reaction was very much about feeling a sense of powerlessness - my own ("I can't fix it for you, and I hate that.") as well as what I believe was my client's experience ("I feel abandoned and forgotten and unable to change my life."). 

"I want to be here."

I noticed the word "here" came into my mind rather loudly as I accompanied W's breathing on the piano. Then..."I want to be here."


He was sitting in his usual partially reclined position on the couch and staring straight ahead. No eye-contact. Ignoring the instruments (although I think he tossed a mallet on the floor at one point). 


Just. Sat. 


I knew he was still not feeling all that well. We both had colds this past week. But he had been very clear that he wanted to come to his session.


"Breathe in; breathe out." I sang quietly, accompanying myself on the piano.


He waited until I was finished, and then he quickly tossed the maraca and the bells in rapid succession. 


Obviously something was bothering W. And as I watched him the song "Wish You Were Here" came to my mind. I found it in my folder, and I was all set to start playing when he stopped me, pushing my music folder to the floor.


Okay then. Kill the music. Better stick to just listening. 


"I'm wondering what's upsetting you so much today." 


W pushed the rest of the instruments off the bench next to his seat, making sure to send them into the distant regions of the Music Room. He watched them as they rolled off in various directions. He turned to me and tried to make sound with his voice. It came out as a quiet, brief hum. He waved his arms in frustration, unable to make me understand.


"I can't imagine how frustrating it must be for you to have so much to say and so few ways to say it. Can you go back to the music and use the instruments?" 


W got up and gave a few of the closer instruments, the ones he'd already sent to the floor, a shove with his foot, pushing them even farther away.


I looked at the clock and realized we only had five minutes left before the session ended. I let him know we would have to end shortly. 


I knew he wasn't finished. 


I recalled our previous session in which he kept picking up the bells when it was time to go (seemingly to let me know he wanted to take the instrument back to his cottage with him- like a transitional object). He didn't seem to feel finished then either. 


I asked him if perhaps his current upset was related to not wanting to let go of the bells and leave last time.


Eye-contact. Bingo!


"It is hard to leave a place where it's quiet and where you've developed a sense of safety. I know how much it means to you to be here."


Because I felt his helplessness, I went on and on. 


I reminded him that his worth does not come from me. That music therapy helps him remember and recognize his worth and value as a person. That we work toward his being able to go out in the world with the awareness that he is a worthy and valuable human being. 


I added that I realized this wasn't an easy task. We all struggle with it. "But, W, you have survived living in an institution for over 25 years. And you still care about people. Relationships still matter to you. That's a miracle!" 


He thought about this for a while. 


I gently noted again, "W, we need to stop for today." I got my coat on, brought his coat and hat over and began helping him get into his outer gear.


He paused midway through the process, flapping his left arm in his coat sleeve, not quite finished putting it on. In a second, he took off the coat, took off the hat, handed them back to me and pushed me gently backward in a clear gesture of "No."


He was staying "here". "I want to be here, Roia!" was what he seemed to clearly be stating with his actions.


I sat with him. 


"What do you think is making it particularly difficult for you to leave today? Is it that it's the holidays? Is this an anniversary date for you that I'm unaware of?" He paused and looked up and to the side to consider this.


"Perhaps you're feeling particularly lonely." Eye-contact.


We sat quietly, breathing together. "Loneliness is hard."


After a while he got up to push my tissue box off the piano. I brought him his coat again, and I let him know I thought he'd be okay. He is, after all, a survivor.


He hesitated, but he finally put on his coat and we walked out. 


Here is the song, "Wish You Were Here", that I would have sung for him in our session- mistakes, clunky piano keys and all. 

"I need to be still"

Today, at a little after 5 PM, Mn died. 

I met Mn back in 1988 when I started working at the developmental center. She was a teeny little woman who didn't use speech. When she was feeling better (she died of cancer), she used to come and sit on my music book while I was playing music in her group. It always made me chuckle.

Mn was surrounded by Mg, Ib, Dn, the nurse who turned off her vent, and me. 

The nurse and chaplain at the hospital told us to let them know when we were ready, and they would ask us to step outside while they removed the machines which were keeping her alive, and then we would be allowed to come back in and be with her as she died.

Before we called the nurse to disconnect her ventilator and prepare her, Mg, Ib, and Dn gathered around her, each holding her hand, rubbing her leg, and touching her long hair, crying. I sang:

I need to be stiIl and let God love me
I need to be still and let God love me
When this old world starts to push and shove me
I need to be still and let God love me

I need to relax and let God take over
I need to relax and let God take over
He'll take this load off my shoulders
I need to relax and let God take over

(Written by: Archie P. Jordan and Naomi Martin)

~~~~~~~~~~~~~~~~~~~~

We were all set to go back in the room when the nurse told us it was okay (we'd gotten rid of our dirty gowns and put on new ones in anticipation).  There was a lot of crying. Even the nurse was sniffing as she watched. 

I mostly stood at the foot of the bed, and I alternated between watching Mn take her last breaths and watching the machine register "0".  

It wasn't that I didn't want to touch Mn. It just seemed important that the people who had taken care of her should have the physical space they needed to say "goodbye". I knew I'd have room when it was time.

When everyone was finished and had begun to wash their hands, I moved closer to her. I took her left hand in mine, and I put my right hand gently on her forehead for a moment, and I wished her well on her journey.

We filed out, thanked the nurses, and left the Intensive Care Unit. 

I was struck by how little I cried, how honored I was to be present for her death, how humbling and quiet it all felt. 

As I drove home, I found myself feeling teary, but it was a gentle tearfulness. To Mn I offer James Dillet Freeman's beautiful "Prayer for Protection":

The light of God surrounds you

The love of God enfolds you

The power of God protects you

The presence of God watches over you

Wherever you are God is.

Death, Loss, Love

We held K's memorial service this past Wednesday.

His morning shift staff asked me to sing "I'll Fly Away", "Amazing Grace" and "The Wind Beneath My Wings". I made it through without crying, which surprised me, because the staff had put up a big collage of pictures of K.

At his service, I learned that K was abandoned by his family at a hospital when he was four months old. He was in his early 60s when he died. Wow. That's a long time to live in an institution.

Toward the end of the memorial, A, the minister said to us,

You're going to go about your daily business, and then some time, maybe in the coming weeks, maybe a couple of years from now, you're going to think of K. When you do, thank him. And remember him, not as a body and not in the form he took when he was alive. Remember him as his true self. As a spirit connected to you.

Yes, just as I remember R, I'll remember K. A lovely smiling spirit for whom I had the privilege of being music therapist.

"I'll Fly Away"

The last thing I remember about K is how worried I was about his health. He had been coming to music therapy and literally crying, "ow, ow, ow". I'd gone straight to the nurses and told them (again), "there's something very wrong with K. I've known him for 20 years, and this is not a sound I have ever heard him make." They assured me they were looking into it.

It was heart-breaking to listen to him. It was difficult to focus when I knew something was wrong. I felt powerless to help him and angry because I had been expressing concern about his health for at least a year.

When I got back to work last Wednesday after a week-long vacation, I heard he was in the Intensive Care Unit at the local hospital. I made plans to go and visit him on Thursday.  

It was too late.  K died Wednesday night.

Alone.

P, one of his regular support staff, also devastated, asked if I would sing the song "I'll Fly Away" for his memorial service. I didn't know the song, but I found the music and started to learn it.

***************************

D was a bit draggy when I went to pick him up for his session this past Saturday. But he got right up to come with me. 

As soon as we got to the Music Room he moved all the instruments off the couch and parked himself there, in a reclining position, facing me. 

He looked sort of glum as I sang a greeting to him, and we spent some time just breathing quietly together. D stared out the window, as he often does, and as I watched him, my mind started to sing, "I'll Fly Away".

I played it for him- painstakingly, since I had only barely begun to learn the song. It seemed to offer a powerful message for him.  He turned to look my way, and he listened intently as I sang.

Some glad morning when this life is o'er,
I'll fly away;
To a home on God's celestial shore,
I'll fly away.

[Chorus]
I'll fly away, Oh Glory
I'll fly away; 
When I die, Hallelujah, by and by,
I'll fly away.

When the shadows of this life have gone,
I'll fly away;
Like a bird from prison bars has flown,
I'll fly away

[Chorus]
I'll fly away, Oh Glory
I'll fly away; 
When I die, Hallelujah, by and by,
I'll fly away.

Just a few more weary days and then,
I'll fly away;
To a land where joy shall never end,
I'll fly away

[Chorus]
I'll fly away, Oh Glory
I'll fly away; 
When I die, Hallelujah, by and by,
I'll fly away.

(written in 1929 by Albert E. Brumley)

The best way I can think of to describe it is that it seemed as if D's eyes, gazing out the window, were singing this song.

A thought crossed my mind as I shared "I'll Fly Away" with D- a song I will be singing for K's memorial service in a couple of weeks. K taught me, as well as many of my practicum students, about being a music therapist (he was a part of the "Sick and Tired" crew I described in my last post). As a result of his death, I've now had occasion to learn this powerful song, and what's more, to share it with another of the people I support.

So, in a way, K remains present, and he continues to share his gift. 

I hope it's true for you, K, wherever you are...that "like a bird from prison bars [you have] flown" and that you're in a state of being in which "joy shall never end".

"After you've gone and left me crying..."

B jumped up (jumped, I tell you) to come over to me when I showed up in his group (I was feeling guilty, because I was a little bit late). He barely let me get his jacket (um, it's April, and there were snow flurries happening off and on today). Anyway, he barely let me get his jacket out of the closet and on to him before we stopped to get his meds. Then we were on our way.

He got to the Music Room, and somehow we missed the door to actually go in. Don't ask me why. We just kept turning around the corner and walking and heading in the wrong direction. Then when I got him back in the direction of the door, we missed it on the way back again. 

Okay. What?! Already! 

Somehow, I managed to veer him in the direction of "please get in to the Music Room, or I won't be able to pay attention to what you're apparently trying to tell me!" 

Alright. We are now inside the Music Room. Now I can focus. 

B was very upset. To the point where he was actually crying (I think). It was very sad. I decided the best thing I could do was to simply sit with him and wait it out. Try to give him the space to feel lousy, since that seemed to be how he was feeling today.

[Actually, his distress was a continuation of our previous session where there was a lot of instrument throwing, occasionally aimed at me. I reminded him that I would not be able to hear him very well if I was having things hurled at me, so he "agreed" to stop, but made sure to get in an obscene gesture to make his point. Got it. F--- you, Roia!]

When B is upset, there's a lot of moving. When he's more mellow, there's a lot of sitting. Today there was a lot of moving. He speed walked over to the office area, sat in the other music therapist's chair, whimpered, then dashed back over to the music part of the room.

Every so often, after he sat briefly on the couch (his usual hangout), he hopped up and went to look out the window, rocking from side to side as he did so. I noticed his rocking was kind of gentle and not all that fast, but everything else about him seemed to be in high speed.

I tried to figure out whether I should musically reflect the rocking (maybe it was a way for him to self-soothe?) or the agitation or both. I opted for a bit of both, and I think it ended up sounding like a bit of a mish-mosh. 

Even I was up and down a lot. I had decided the guitar was a better option for improvising than the piano, because I could follow him more easily if he happened to run out the door. Also I could turn and see him while holding a guitar.

B was also humming. It was actually a very beautiful and poignant hum, and I tried to follow along with the guitar and, at points, with my own voice. He'd hum at a particular pitch and then drop down an octave as he came to the end of a phrase.

Eventually, his movements came to a gradual settling down, and he (mostly) managed to assemble himself on the couch to catch his breath. I breathed in and out quietly with him.

"I guess underneath all the silence we were exploring two sessions ago you had a lot to say, B."

We sat together, back in the silence, and the lyrics that sang into my mind were: 

"After you've gone, and left me crying

After you've gone, there's no denying..."

I have learned over the years to pay attention to the lyrics that pop into my thoughts when I'm with a client. To me they're like messages sent from their consciousness to mine. 

These were the only lyrics I could remember, and I wondered if he was trying to let me know how hard it is for him to have to wait in between our sessions. 

Now, it may seem as if I came up with this from out of nowhere, but that's actually not the case. He has a very difficult time leaving sessions, and there is usually a lot of dawdling and trips to the bathroom and long pauses before the jacket gets put on when it's time to go. 

Also, as I noted, he had been quite distraught in the previous session as well, and we had explored his frustration with me, because I'm not able to fix his life for him (which, I'm thinking, would take the form of my taking care of him outside of the institution). 

In the past month, we've been talking a lot about feeling abandoned, and I also used the Billie Holiday song "Left Alone" in one session (this version is sung by Abbey Lincoln).

When I commented to him that music therapy can be a mixture of deep gratification (it feels so wonderful to be listened to and acknowledged) and extreme frustration (because it's still therapy- it's not life) he immediately picked up the maraca and tossed it across the room (the maraca is the instrument we've designated to express anger and frustration). Score? I think so.

Heck, I sure wish I could tell you I had some brilliant piece of advice to offer him, but let's face it. The truth is, living in an institution is the pits. He knows it. I know it. I can't fix it for him. And, yes, it is frustrating. Insane-makingly so! On a lot of levels and in painful and never-ending ways. It's frustrating for him, and it's frustrating for me too. 

What to do? What to say?

He'd stopped running around by now, and he only got up every so often to punctuate a point I made (I think that's his way of saying, "you're getting it, Roia," but I'm not 100% sure; I never am). 

I told him I was glad he felt safe expressing his feelings to me, and he was welcome to keep doing so in music therapy. To be honest, I felt very honored and humbled by his trust in me. People don't expose that much emotion and pain in front of just anybody. 

I guess the best description of what I did today was to stick with B. I validated his feelings. I kept caring about him. I invited him to keep using the music as a container. I reminded him of when I'd see him next.

I noticed (in myself) how hard it was to end the session today. I knew we needed to go, but I felt awkward insisting (especially given how much emotion happened in the space), and when I tried to play something quiet about breathing, he started hitting his head. 

"Hurting yourself is not a solution, B. Showing up in music therapy every week [I actually see him twice a week] and using sound and movement to tell me how difficult this is for you is a better alternative."

He didn't look like he was buying it, but I had to get up and get the coats already. It was getting late. 

I put my coat on and held his out to him. He paused as long as he could, and he finally got up, took it from me, and put it on. 

When we got back to the cottage his staff greeting him warmly, and he went to sit down. He watched me as I hung up his coat, left the room to sign him in and then walked back through to wave "goodbye" to him. 

The lyrics were still floating through my mind as I walked back to the Music Room to tidy up and go home: 

"After you've gone, and left me crying

After you've gone, there's no denying..."

Sometimes being a music therapist feels like being one of the meanest people in the world. 

Is failure an option?

Oh. My. God.  Today was long.  It was annoying.  It was frustrating.  It made me wish I did anything but music therapy.  

As guilty as I'm going to feel, I have to say it.  Sometimes I hate my job.  Okay, so now you know. I felt like a complete failure by the end of the day anyway, so I may as well publicly (yes, publicly) admit that sometimes it sucks raw eggs to be a music therapist, and I entertain evil thoughts about some of the guys I see for music therapy.  

Initially, I was just having a boring day, because a lot of my clients seemed to be out and unavailable.  Then, when they were available, they were exhausted (yes, I am rolling my eyes heavenward, why do you ask?).  

Well, okay, the real problem was one particular client who has been challenging me for...let's see how long have I worked with him? Almost five years maybe? Let's just say there has never been a time in our work together that didn't make me wonder "why the hell am I still doing this? Why is he still getting music therapy?" (or, to quote a wonderful bumper sticker I bought many years ago, "where am I going, and why am I in this hand basket?"). 

Yes, there's something wonderful and likable about him, but, for pity's sake!  I am tired of asking him to stop licking the walls, the table, the dirty clothes bins, etc.  I am ready to claw out my own eyeballs from asking him to stop writing all over his face with the ball point pen.  And, for crying out loud, enough with the kicking, punching and pinching at me!  

I think I'm most upset, because I have sincerely tried and tried, and the reality is I can do no more for this man.  I just don't have the energy to keep arguing with him.  If he doesn't want to change, then he doesn't want to change, and I'm wasting both our time trying.  

The distress part for me (until now anyway) has been that, to my way of thinking, I have to keep trying.  See, now this is why I needed to take a break from working for a little while- so I could finally recognize that my thought process was ridiculous.  It is now glaringly obvious to me that "trying" in this case is more about my need to not fail than about his need for music therapy.

I wonder if other music (and non-music) therapists go through this madness.  Or am I just insanely Don Quixotic about it all ("to fight for the right- without question or pause- to be willing to march into hell for a heavenly cause...etc.").  Clinical supervision anyone?

*Heavy sigh.*

 

A visit to the cemetery

On my way to rehearsal last night, I decided to stop at the library.  Well, as it happened, the library had just closed, so I was too late.  While I was waiting to turn out of the library parking lot, it started to occur to me that R was buried in the cemetery across the street.  On a whim I pulled in to visit him.  I couldn't remember whether there was a gravestone, but I had some idea of where he was buried, because he's toward the back by the trees.  

I got out of my car and went to look at the gravestones.  No luck.  I noticed a little metal grave marker, and when I looked closely I saw his name on it.  Then I realized that someone who knew and loved him had placed a little metal smiling bee next to it to mark the space as belonging to R.  I started to cry, because I was very touched.  Back in February I wrote about how R used to come up to me and yell "BEE" at me and want me to yell "BEE" right back to him in his ear.  When he was younger, bees would sit gently on this man's finger- this man who, for a large portion of his life, yelled and slapped and kicked at people (often because he was likely in a lot of pain).  

Now he has a little smiling bee watching over him.  I think the other thing that made me cry was knowing that it meant someone else, probably from the institution, has been visiting him and is missing him. I don't know about anyone else, but I think it's comforting to know that, even when we mess up some things in this life, even if we yell and lash out at people because we're in pain of some sort (emotional, physical, spiritual) or we're scared- there's usually someone (or several someones) who still love us and will miss us when we die.  

Is this the end?

I had a strange experience today.  I actually had to say to one of my clients that we’ve gone about as far as we can go.  I didn’t want to have to say that to him, but it’s true.  We’ve worked together for about 19 years, and there really isn’t much else I can offer him other than my presence.  

It’s not as if he doesn’t have issues (I mean, who doesn’t have issues?).  It’s mostly that he seems to be letting me know that we aren’t going to be doing any more music therapy.  I can’t say I blame the man.  How much therapy can a person stand in his lifetime (well, some of us can stand a lot, I guess)?

I’m not sure whether he’s ready to actually stop coming to sessions.   I’m fairly certain he values our relationship a great deal.  I don’t think I’ve ever seen him rush up to other people and take their elbows and pull them to the door.  And I know I’m not the only person who takes him out of the cottage.  

I’m not sure how I feel about this.    

As it happens I just said “goodbye” to another long-term client (admittedly, since it’s an institution, the majority of my work with people is long-term...VERY long-term) who has been gradually moving toward ending in the past three or four years.  I still run into him regularly, because I work with other people in his cottage (which has to be weird for him- I know it’s weird for me).  In the last month or so, as we’ve gone from sessions to checking in to just saying “hi,” he’s needed to avoid me.  It hurts to be rejected, but I understand that he needs to do that.  

We had an amazing last session.  We didn’t exactly plan for it to be The Last Music Therapy Session, but I think we both knew it was.  It was joyful, it was celebratory, and it was moving.  Considering this particular person has not been feeling physically well for a rather long time, it seemed clear to me that he and I were absolutely in sync on this closing.  He was more animated during this ending session than I’ve seen him be in almost a year.   It felt to me as if he had the kind of goodbye he might have liked to have had when his family sent him off to live at our facility (back when he was a youngster- he’s in his 40s now).  

I so value both of these men.  They have allowed me into their lives, they’ve used the music, they’ve grown, and they are loving, sensitive guys who care about other people.  Both men also enjoy laughter and playfulness.  What wonderful gifts they bring with them (and they have shared with me) as they move on from our time together!  And what a collection of feelings- joy, sadness, pride, excitement, and a bit of nervousness- I feel as I begin to let them go.  

The funeral

It’s not as if funerals are supposed to be great occasions.  But I went to R’s funeral this morning (which, I swear, lasted all of fifteen minutes) and I stood out in the extreme cold with his family and the staff who knew him, and it was...gosh, how to describe it?  Well, it felt completely heartless.  The minister didn’t know him, and he sounded downright triumphant while he talked about R being with God and how we weren’t there to honor R but to honor God. 

Now, I consider myself to be a pretty spiritual person (it’s kind of hard to do this work and not have some kind of spiritual belief, I think), but after about ten seconds of listening to this man, I wanted to loudly yell, “Hey, man!  WHO ARE YOU?  You just sit there quietly, and let us tell you who R was!  You just stop your blather about your fairy tale version of God and how happy we are to send R to him, and you let those of us who spent time with R in his life, who loved him, who cared about him, who walked with him, who got kicked by him and hit by him and still loved him, who are mad as hell that he’s dead...let US do the talking, Mr. Minister!”

When the hearse pulled up, I almost burst into tears.  R was in a gray coffin.  One of my co-workers helped carry him out.  I went to stand nearby, and I noticed his plot overlooked a little stream and a lot of trees.  I know how much he liked being outside, so I was happy to know his body would be lying in a pretty place (even though the highway noise was nearby- but he liked watching the cars on the highway when we sat outside and played music too, so maybe that was okay).  

Even though his family was there we didn’t get to talk to them.  It was good to see so many of his staff people there.  I don’t know how they felt about the service.  I was glad we’ll be doing our own memorial service soon.  To me, our services have a lot more meaning.  We play music, we share our memories, and we gather together at the end, and we chat with each other over snacks.  Some of the guys he lived with will also be there.  Hopefully his family will come to that service too.  Maybe then I can tell his mother that I had such a soft spot in my heart for him. 

I can tell her about the time that he smacked me repeatedly and I cried and told him that he had hurt me.  I wanted him to get that his actions had a consequence.  I told him we’d try again, but that it was going to take some doing for me to trust him or feel safe with him.  The next time I was in his cottage (I had a session with someone else the next day), I walked through his group area, and he got up and followed me to the other area.  He took my wrist and he guided my hand to smack at his face (I resisted, because I didn’t want to hurt him), and he stopped and waited, watching my face expectantly.  My immediate thought was that he was trying to ask for my forgiveness.  He understood he hurt me, felt badly about it, offered me the opportunity to “get him back” and wanted to know “are we okay now, Roia?”

I was so touched.  I smiled and said, “Thanks, R.  Yes, we’re okay, and I’ll be there on Friday for your session.”  Sigh.  Tomorrow is Friday...the day of R’s sessions.  I still have to go over to his cottage, because I get someone else from his group as well.  What a big hole he has left.

When I walked through his group area yesterday afternoon I noticed they’d taken his old leather lounge chair out and put it one of the state issue wood and hard plastic ones instead.  Obviously, the staff couldn’t stand to see it empty either.  

Tonight when I got out of my car at my mailbox I noticed the night was very clear, and the stars and constellations were shining away.  I thought about him by himself in a gray box in a cemetery in New Jersey.  I hoped his soul had moved along so he wouldn’t feel scared lying there by himself. 

"Leaving on a jet plane"

Last week R came up to me when I walked through his group on my way to sign someone else out for his session.  I knew before I walked through that I risked his approaching me and wanting to go out for a walk when I didn’t have time to take him out.  Sure enough, he saw me, got himself up out of his lounge chair and came over, caught my arm and loudly proclaimed “BEE!”  (yes, as in the ones that buzz, fly. sting, and are disappearing from the earth).  He leaned his ear in toward my mouth so I could respond with my own rousing “BEE!”  

I guess it wasn’t rousing enough, because he repeated himself, this time adding a gesture, pointing toward the high ceiling, in order (I presume) to make sure I understood what we were talking about.  

“BEE!” he repeated, looking rather triumphant I’d say, and I smiled, because, even though sometimes I have feared for my life when I’ve worked with this man (he hits hard and kicks very unexpectedly), I am very fond of him.  

Some of the old staff (most of whom have retired in the past five to ten years) told me that, when he was younger, bees used to come and sit on his fingertip.  Apparently, this yelling, kicking, biting, and slapping guy managed to be very gentle with these little buzzing creatures.  By the time I’d met him he’d apparently developed a fear of them.  I’m not sure why.  But “BEE” remained one of his favorite words.  “BAH” (which I’m pretty sure was meant as “BYE”) and “GO BACK”(an exclamation he usually made when he was done with me for the day) also figured prominently in his small verbal repertoire. 

Another of his favorite words was “AIRPLANE!” (R would never be described as a quiet man).  He often loudly pronounced this word, while, again, gesturing toward the sky, pulling my arm to look with him out the window.

As it turned out, last Wednesday, he did want to go for a walk, but I had to get to my other session.  I explained that I’d see him on Friday, and his staff person convinced him to wait until then.

It turned out that it was icy and snowy on Friday, so I didn’t even go in to work.  I checked in with him on Saturday to see if he’d like to walk then.  His staff said he wasn’t feeling well.  

I went over to him and he looked up at me from his curled up position on his lounge chair.  He looked rather glum.  I wished him well, and I told him I’d see him the following Friday.  “Hopefully, the weather will be good, and we can take our walk.”

On Monday I heard R had died that Saturday evening.

Last night I woke up after a somewhat disturbing dream, and I thought a lot about R and how he had spent much of his life with physical discomfort of one sort or another.  I was sad thinking that he probably died in pain.

As I was lying there, not sleeping, the following song floated through my tired head.  It felt like something R might have said to me about his death:

All my bags are packed

I’m ready to go

I’m standing here outside your door

I hate to wake you up to say “goodbye”

But the dawn is breaking

It’s early morn

The taxi’s waiting

He’s blowing his horn

Already I’m so lonesome

I could die

So kiss me and smile for me

Tell me that you’ll wait for me

Hold me like you’ll never let me go

‘Cause I’m leaving on a jet plane

I don’t know when I’ll be back again

Oh, babe, I hate to go.

There’s so many times I’ve let you down

So many times I’ve played around

I tell you now

They don’t mean a thing...

So kiss me and smile for me

Tell me that you’ll wait for me

Hold me like you’ll never let me go

‘Cause I’m leaving on a jet plane

I don’t know when I’ll be back again

Oh, babe, I hate to go.

Now the time has come to leave you

One more time, let me kiss you

Then close your eyes

I’ll be on my way

Dream about the days to come

When I won’t have to leave alone

About the time I won’t have to say

Kiss me and smile for me

Tell me that you’ll wait for me

Hold me like you’ll never let me go

‘Cause I’m leaving on a jet plane

I don’t know when I’ll be back again

Oh, babe, I hate to go.

©1967 John Denver

The song made me cry...which I kind of needed to do.