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From Music Therapy – Intimate Notes – case studies compiled by Mercedes Pavlicevic

Based on an interview with Cathy Durham who works in Bristol helping those in the community and those who have learning difficulties

There is a woman I worked with for two and a half years in a neurological hospital in London. I will call her Shireen. She had a severe brain haemorrhage while she was seven months pregnant - she had very high blood pressure and this extreme hypertension caused a cerebral haematoma, a bleeding in her brain. The baby was delivered normally, while Shireen was in a coma. What a start to life! How could Shireen hold the baby, communicate with him the way a mother does?. . .

She was in coma for about four weeks after her haematoma: it is very rare for anyone to be in a full coma for more than six weeks. She was in what we would call a 'waking' coma - she was showing sleep-wake cycle patterns, but was so unresponsive that her level of consciousness was unclear. I started seeing her about six months after her haemorrhage, to assess her for music therapy. Her brain was so severely damaged that there was no indication that she could make any purposeful movement at all. Shireen was in her thirties. She had two other young children.

Shireen was in a wheelchair and was fed through her stomach by a gastrostomy tube. She also had a tracheotomy to help her breathe... she had become blind. . . she moved her head from side to side, which indicated that she might be trying to pick up sounds. She could occasionally move her right hand to grab things, sometimes she tried to pull the tubes out. Often she would hold something but then didn't seem to know what to do with it…..

If I went up to the ward and spoke to her, her head movement increased. But there was no way she could look at me, she was quite clearly blind. And because she didn't respond to any kind of visual stimulation, she scored very low on all kinds of occupational therapy tests. The tests were to try and gauge what level of functioning she was operating on, or how aware she was of the environment. A large part of those tests are to do with visual responses, tracking an object, responding to light.. . she didn't respond. She didn't cry, she didn't ever make any vocal sounds, never had tears, but I suspect that if she was in pain she thrashed about a bit more. I began to find her head movements expressive.

I found it hard at times to go on the ward and see her, because she was just so unreachable. I sometimes saw her relatives visiting her, touching her hand. They often seemed lost and unsure how to be with her. When nurses approached her, it was often to attend to her tubes or adjust her posture. Often people didn't know what to say. Her loneliness must have been unbelievable.... It was obvious.... Was she lonely? Did she know she was lonely?... I don't know.

I had quite a strong emotional sense about Shireen, whereas with some of the others on the ward it was quite different - it is difficult to admit this, but I would feel a sense of boredom, or a sense of being cut-off. At the same time, I felt a strong determination to 'find a way through' to reach them, although I must admit I almost despaired at times. But with Shireen, there seemed to be a lot going on inside her, and at the same time it seemed impossible for her to communicate it in any sort of meaningful way. I felt she was quite often in distress – her blindness bothered me - I wanted to touch her and give her some sense that I was there, and I didn't feel afraid to do that, although I'd usually tell her that I was going to touch her. I felt quite drawn to her.... With some people on the same ward I would be more careful of touching because they might experience this as quite startling. There was something about her that was warm....

It seems fairly likely that Shireen didn't understand language – I tried saying things that might be meaningful to her, like 'I saw your children came in yesterday' ... and she didn't seem to show any change in response. But when she started coming to music therapy, she seemed to be listening! It was something to do with her head: that she was holding it very still, or that she was turning it towards the sound. Her face remained immobile... there was no change of expression.

I saw Shireen in a music therapy group once a week for one hour, for two and a half years. There were three people in this group, and they were in quite a similar neurological state - and somehow working with three people seemed easier than working with one. It meant that in each group I needed to focus on one person for a certain amount of time, before moving on to the next. Then each person had some 'quality' time focused on them, but also some time when there was less focus, to listen and respond freely. I found that singing each person's name over and over again felt supportive and immediate. I would do this while improvising chords on the guitar.

I had a co-worker with me in the group, who was an occupational therapist. Each week, we would start the session by saying who we were, the date, the place, the time and even the year. Some group members might have impaired short-term memories, so it was important to give a sense of orientation. Then we would begin the musical greeting, which was always the same, to provide a sense of familiarity and also a sense of safety. The music would have spaces in it, to allow for people to respond, and it would focus very much on individual names, at that point in the session.

I would base the tempo of my guitar-playing and singing very much on the speed of someone's breathing pattern. So for example, in the greeting song, each verse would be absolutely related to something that this person was doing physically. If Shireen was moving her foot, then I would relate the speed of my playing to that, rather than to her breathing. What was strange was that I started to relate to her foot rather than to her whole body, and I almost started to put her personality into her foot! That was disconcerting and I'm glad I noticed it soon. The important thing was to take her in as a whole person - and this is difficult when you are sitting opposite someone who is in a tank of a wheelchair. Well, of course she needed something of that size and structure to support her posture and hold up her head. Because of her brain damage, her body was quite loose and floppy.

There were all sorts of instruments which I could put on her tray: the tray was part of her wheelchair, and it supported her arms. She responded a lot to a calabash - a light gourd about thirty centimetres high, with loosely tied beads around it. She would finger the beads and I would improvise something very quiet around that. I would play when she was playing, stop when she was stopping, just to try and make that contact with her.

There were various drums with different surfaces a lovely Moroccan drum was very tautly stretched, and a tiny tap would produce ringing harmonics; a shaker made of Brazil nut shells, which she would feel and she could pick up. There were wind chimes which I positioned on a long boom stand - and very soon I started to position them by her left foot, right down in front of her toes, so that if she did move her foot, then she would get feedback immediately from their ringing sound.

And every week she did make some sounds - it took two or three months before I had any sense that she was doing it purposefully....

And then over the weeks, she started to do things like playing only when I was singing, and when the singing stopped she would put her foot back on her footplate. Then she started doing things like moving her foot right along the wind chimes and then kicking out as well. She was really experimenting!

By this time our department had purchased another set of wind chimes. It seemed so important than she could have those down by her foot all the time in the sessions. We needed another set for other group members to play if they chose.

What started to happen over two years of work was that she was getting more and more involved; she was finding more ways of playing with her foot, and relating to the music in a different way. She started to link up musically with another person in the group, Paul. He had some kind of cerebellar degeneration and was slowly losing his cognitive and physical skills. But he had reliable movement with his elbow: he was able to move from his shoulder, move it up and down. The co-worker would hold a keyboard underneath his elbow and he would play on the keyboard, able to control the music quite well. Paul was a very emotional person and cried and laughed a lot - he was very expressive considering his very limiting cognitive and physical disabilities. Although Shireen couldn't see him, she must have been able to hear where he was.

In the group improvisations, I would generally play something quite continuous so that the music kept going. The people in the group couldn't necessarily aim to play at a particular point, as they didn't have that physical control, but they could join in at any time.

They had very distinctive sounding instruments so that it was noticeable who was playing at any one time. What started to happen was that Shireen would play and then Paul, then Shireen again, and so on. I didn't notice this during the session, but noticed it when I was listening to the tapes of sessions. It began to happen too much for it to be a coincidence.

What I had not expected was that there was a group awareness.

These were three very cut-off people who were beginning to communicate with each other! This was, of course, the purpose of the group, but at first it felt that I was working with three individuals, and there was little sense of a group feeling. The third member, Frank, was nearly always asleep. Because of his brain damage he could not always remain alert. But when he was awake he was fantastic! He had quite a lot of movement with his hands and used to play the autoharp beautifully, with long strums and little ones and amazing musical intelligence. It was always worth having him in the group, though, giving him that opportunity just in case he was awake... so in a way he was an absent member of the group. But Paul and Shireen became increasingly interactive. It must have been the first relationship that Shireen developed after her brain injury....

She would have nurses dressing and undressing her, removing tubes - and they would talk her through every procedure. But we had this feeling that she didn't understand... we all kept talking to her but it was easy to lack conviction because there really was no evidence that she understood. At times I lacked conviction too, but I didn't have any doubt about the importance of the music. I felt that my music was communicating with her. In speaking with her I used to think, why am I saying this - there is a value in her hearing my voice, and the musical side of my voice... but the actual content of the words I wasn't sure about... she'd never done anything I'd asked her to do like 'could you squeeze my hand?' Perhaps she didn't understand, or perhaps she did but was unable to act on the suggestion. Then again, perhaps she didn't want to. There is always the power one has by refusing - and why should she want to do that, squeeze my hand?

And yet, I had a sense of her personality.  I really noticed her absence if she wasn’t there – in fact she hardly ever missed a session, only once she was ill, and once when her family visited.  I felt that she got a deep sense of peace from the music, her breathing was often more relaxed at the end of the sessions……………………..

At times I wondered whether Shireen wanted to be alive - and I don't know how aware she was. I was not always sure whether she was there, present in the sessions. But she always came - for two and a half years, for an hour every week. What I noticed was that she started to show increased facial expression. The change in her was so incredibly gradual. .. it took two years before I'd say she'd smiled - but there were hints of a smile for quite a long time before.... On the whole, the hardest thing was having to cope with not knowing, not being sure of what was going on for her, in her mind, in the sessions.

After the group had been running for two years, I decided to move to another part of the country. I managed to negotiate a ten-week leaving period - although four weeks is the usual length of time to give notice.

This gave me more time to say goodbye to the group - I felt that I couldn't possibly wind up in four weeks! I found the ending especially difficult for this group - we had been together for such a long time! In this session, I told the group that I was going to leave. Paul started crying. The music was so much more charged than usual- I want to play you the tape of this session.

Cathy's playing on the guitar is firm and steady, and Shireen sounds strong on the wind chimes. Cathy is singing non-verbally, accompanied by a guitar chord sequence. I hear Paul on the cymbal... he starts to sing... the music is filled with emotion, the sound is full... and then a high-pitched sound seems to come from nowhere. It is a long sound, an arc, an aaaaaaeaaaaaaaahhh! over the music, over everything else.

That cry! That is Shireen! And she'd never made a sound before, never in our whole two years of working! She just cried out... I was so thrown that I hit a wrong note on the guitar. In that moment, I suddenly knew that she had some sense of something... it was too much of a coincidence... the fact that she cried, the way that she was playing... we all carried on playing, on and on, we didn't want the music to stop.

After that, it was time for the goodbye song and neither of them would play.