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Story 7 - the Letterbox

‘A sense of time’

Severe brain injury burden on carers

The above stories tell of a few small jobs which Barry did which I was getting to know him. I had a much better idea at the end of this period of just what I would need to do with him next. I was a therapist, with a minimum of carpentry skills. I knew that I needed to somehow combine my knowledge of what he needed with someone who had the right kind of skills to ensure that he did the things he needed to do. I began to introduce the idea of a workmate, someone who had specialist skills in carpentry, who would work alongside Barry. The supervision and training needed for this position was extensive, but at first it was not possible to find anyone who had both the skills and the time to do the job.

One of the consequences of Barry’s severe brain injury is that his sense of time was different to that experienced by others in our culture. It is impossible to say how much of it was a neural consequence and how much of it was a consequence of removing him from the dominant rhythm of society for all those years since his brain injury. We say things about him such as ‘he has no idea of the passing of time’, ‘that was in Barry time’, ‘he was so slow’, ‘he just sat there doing nothing’. The average person recognises there is a time relation between his actions and that of his family's. The average person would get up when they are called, would not keep you waiting for an hour while they hunted for their bag, would meet you at the time that they said they would, would be on time for most appointments. None of these things are true of Barry, he keeps people waiting on him a great deal. There is a close connection between time and mood in our culture and so his facilitators respond with varying degrees of patience to the above manifestations of time disorder. They say things like ‘it’s hard to be hanging around when I’ve got so much to do in other parts of my life’, ‘he makes me so mad’, ‘he’s just into control and power’, ‘I sometimes feel like going in there and giving him another brain injury’. These reponses, from people who are employed to ensure that he does keep moving, indicate the strength of feeling that this chronic lateness can evoke, and show that everyone must learn that his movements in time are connected with other people's feelings.

Barry has no consideration for the time and feelings are connected. This lack of empathy places a huge emotional burden on those who care for him. Our relations with others are largely determined by how we pass our time and as long as Barry is unable to share time with others he will remain isolated. This was not always the case. Before his brain injury Barry as the most laid back person imaginable, but he was also very popular. Before his injury he knew deeply and intuitively the way of staying on track. Even if he had decided to 'drop out' of the dominant culture for a while, there is no doubt that he would have been able to find his way back. He is after all a well brought up intelligent young man. But now he has 'dropped out' and his brain has tuned out too.

I have talked about the way that Barry does not respect the time of others when I described the difficulty that people have in getting him out of bed. There are many other examples, too numerous to mention, but I describe one such incident here:

One day when he was visiting an acquaintance on the way home from the Polytech, he went to the toilet and took out his diary to have a look at it. This was excellent, exactly what I have been training him to do. He realised that he had arranged to meet a facilitator at his house and that he was already late. He left immediately to make the appointment, but on the way home he passed the house of another facilitator. He normally calls in on her, so he did so this day also. There was no good reason to have called in here, and of course, he was exceedingly late for his appointment with the other facilitator.

In Barry's case his facilitators have had to learn that his lateness does not arise from a disregard from their feelings, but from a disordered perception of time which has come about because of the brain injury. They will 'know' this, yet also see him keeping the appointments which are really important to him and in their knowing comes an element of exasperation with his behaviour. It is only human. Barry cannot expect this level of empathy from others outside his care package. Indeed he is unlikely to be able to submit to the temporal framework of the rest of society without a similar kind of exacting training that can only come about through belonging fully within a culture.

It is not all negative. I love the sense of time which I have with him as we sit under the eaves while he has a smoke and we are relaxing and chatting. But, like everyone else who shares his life, I find the effort to be with him through the rest of the day excruciatingly tiresome. One of the things that is puzzling about Barry is how incredibly wise he can sound when we are having our long morning conversations, after he has got out of bed. It is one of the times when he simply does not seem to be brain injured, everything is right about him. It is a period of grace, when his flow of time coincides with mine. This time is a given, the boundaries are made by the length of time it takes to drink a cup of coffee and have a couple of smokes. About three quarters of an hour feels comfortable, after that I start to feel that he is pushing the boundaries out. He has always managed to preserve this time and it allows me to enter into his world for a while. It is during this time that we plan and talk about what he will be doing. If he seems self absorbed, it is perfectly acceptable since the time is best used for reflection. It is not just that he says all the right things, but that he is also wise and his wit is relaxed and precise. The images that he uses are poetic and original. For example, talking of a relationship with a young woman which did not feel quite right, he explained it to me by saying: 'it's like we are two pieces of a jigsaw which fit together, but when you look at the picture you realise that the pieces do not match'. I love this time, when I can sense every nuance and inflection and know what it means. I can push him very hard during this time, but, as long as his feet are resting on that post it all feels playful and unthreatening. We are passing the time together, chewing the fat and having a great old time. This is something that we share and which he is capable of sharing with not just me, but with virtually everyone who comes into his life.

Severe brain injury deficits

However, I know that no matter how much agreement we reach when we are together under the verandah it will make little difference to what he actually does when he gets moving again. It seems to be a situation when 'knowing that' is quite distinct from 'knowing how', which is classic deficit with severe brain injury. So he might know that it is wise and good to get a present for his sister, but he does not know how to go about it. He might agree for the umpteenth time that being on time for work is worthwhile, but he has very little inking of the steps that go into making that come about.

I experience these times with him in the morning, while other facilitators talk about similar times when they are having a cup of coffee with him, playing pool, or watching a video in the evening. These are the times when he is on ‘cruisey’ mode, when he is doing something with others which does not challenge him in any way, and there is a ‘level playing field’. This expression, borrowed from games, is a good way of seeing what happens when he is doing things which coincide with the rhythm of others. Nobody has a problem going slowly when they are doing these things, they are seen as our ‘time out’ and they are not boundaried by time in quite the same way. Of course, they are not completely unboundaried either, and getting Barry into and out of these activities that he so enjoys can still be a struggle. Barry needs a lot of this time, when he can relate to people at the same level, because there is so little of his life that is a ‘level playing field’. When he came to Rathnew first, in 1997, these activities were basically all that he engaged in and this was precisely what he needed at this time.

However, a life which is lived only at this pace has its own problems, given that it is impossible to completely remove oneself from the dominant culture. If everyone simply did as Barry did there would not be so much of a problem. But after a while his facilitators feel a desperate need to move out of this way of being. Some of them have more tolerance for it than others, but for all of them endless cups of coffee and pool games eventually become boring and they want to do other things. Barry seems to have an endless capacity to just hang out, never seems to reach that stage where boredom reaches a critical level and bounces back as motivation to move on and do something. It is hard to recognise when that moment comes in anyone but ourselves, but we all know that moment when we suddenly get up with renewed vigour to start again. These kind of activities are rightly called recreation, since they give us the time to reflect the rest of our existence in a way that feels less time pressured and we come out of them as a new person, a re-creation.

Barry rarely uses the word ‘bored’, and at some level he does not seem to experience boredom in the normal way. But he certainly can experience a sense of pointlessness/depression, and he verbalised this frequently at the beginning of 1998 and much less often by the end of the year. This was one thing which indicated to me that he needed things to do which organised time into the dominant rhythm of our culture, he needed to do things that looked like work. But this work needed to be something real, and at first this point was not clear among the facilitators who were working with him. One of them wrote the following:

I understand that because Barry had no time in the work force before his accident it will be hard but not impossible for him to get some really good work ethics going. It doesn't matter that his hard work will be different to other people's. If he can be successful in getting up every morning regardless of how he feels, have breakfast, have a shower and get dressed, then I believe he has already achieved part of that days hard work.

This was the honest opinion of a facilitator who had cared very much for Barry and was explaining her reasons for wanting to leave her employment. She is simply saying what is one of the most significant beliefs in our society about people with disability. The most admirable person is that one who can maintain their independence, at all costs. Yet most of us can only maintain ourselves in an interdependent context, within the discipline of reciprocity. Where the person is not capable of reciprocating, there is a withdrawal of the notion of interdependence and a reversion to a primitive independence. One of the most obvious things about self maintenance activities is that they are urgently necessary and take up a huge amount of our energy, but that they are not hugely valued in our lives for the meaning they give. Many of them are done in a semi-automatic way, such as showering and dressing, which is not suggestive of engagement in occupation. They can be occupation , but even within the wider range of possible associations with these self maintenance activities, they are still quite different to making the world visible through your work.

I think that one of the things that Barry needs is to make time more visible in the things that he achieves. Having no concept of time it seems particularly cruel to only surround him with activities which are bound up in their sameness, where time cannot be marked by their passage. It might take him 2 hours to get dressed today and 2 hours to get dressed tomorrow, but he never sees any result from those 2 hours except that he is ready to do something. If he never goes on to do that thing then it is all pointless. The point of self maintenance seems to be to get ready for something. Any society or person who can free themselves of some of the burden of self maintenance will gladly do so.

Making a letterbox might have taken Barry an inordinate amount of time, but at least this time was made visible through his efforts. There was something tangible at the end of it.

Engaging an occupational therapist with work with a person with severe brain injury

It was by chance that at this point I met one of my old students walking up the road and realised that he was a near neighbour of Barry's. Patrick had been a carpenter before he came to do Occupational Therapy, and he was currently not employed as a therapist. He agreed to work with Barry for an hour or two a week. I knew that Barry was ready to be stretched and this was an excellent opportunity to get someone to guide him in the process. I was feeling increasingly uncomfortable pottering around in the workshop, not knowing what to do with myself while Barry was working. I needed to do something and retreated to the kitchen, weaving a ragrug. Francesca set up a loom and she and I started to make a ragrug in the kitchen, it was full of lovely pinks and blues and the plan was that it would go on the kitchen floor when it was finished. In the meantime it gave me a way of passing the time while I waited on Barry to need me.

I found it extraordinarily difficult to be in a situation where I was not working in intense bursts, but was guiding him and providing cues over a whole day. Normally as a therapist your time does not get 'wasted' by your clients, if they start to waste it (i.e. not work hard every moment that they are with you) then the therapy will be stopped. In a good situation you might work with one individual for 2 or 3 hours a week, often it would be less. I was employed for 20 hours a week and of this about 14 hours was spent in direct contact with Barry. In this job one of the biggest issues is the feeling of valuable time being wasted. Having employed a carpenter, even for a few hours I lost the connection which I had formed with him through doing this work with him.

The work with Barry also felt very lonely at this time, it was one-to-one yet there never seemed to come a point where I was valued by him. The job was one of private employment and so there was no sense of a team, except among those working with Barry. However, at about this time also I experienced the difficulty of maintaining staff and the team disintegrated around me. I had the satisfaction of being able to tell myself, 'so this is what it is like to work with someone with brain injury, this is what it is really like......' , but sometimes it did not seem like enough.

Each morning it would take several hours to get him ready and at this time the kitchen was the key position. Patrick would leave him homework to do and I would really press him to get into the workshop while it was still morning. Getting him up was somewhat easier than it had been, but going to bed was the same old problem as always. The dictum that he would ‘get up when he had something to get up for’, seemed to apply to bed too -’he would go to bed, when he had something to get up for....and having something to go to bed for would be helpful too!’. Barry suffers the inordinate fatigue of the brain injured, so he is forced to make this association during his 20s, when everything seems to scream at him that staying up late is the coolest thing to do. That he has not made this association yet is hardly surprising, though I did keep trying.

In order to motivate him and to keep some kind of track of what he was doing I instituted a system whereby he would be paid $2 for every hour's work that he did in the workshop. This money came from the care package. He was effectively clocking in and out of the workshop, and I was trying to create a time that was designated for 'work'. It was all too tempting for him to drift back inside and start to potter around with something else. My role became one of monitoring his time management and trying to manage the tasks that would distract him from a workday. time. Every time he left the workshop there was a huge effort involved in getting him back again.

Sometimes Patrick would come in the afternoon and sometime he was able to pop up fairly late at night and do an hour with him. Their first job was to secure the 4 x 2 to the garage floor. This was an extension of Barry's insistence that the car was always to be parked in precisely the same position. He has the additional justification now that he needed to ensure access to his workbench. Barry was impressive and he persisted until the job was finished that evening. Patrick was duly impressed by Barry's skill level and he continued to be impressed after he left the job.

Patrick, the newly graduated therapist, never quite got the point that that specific skills were not the problem. The perception was that this kind of work was much easier than rehabilitation work which is done in a Rehab Centre. This is the general perception of this type of work in the rehab community. It is low status both with funders and with therapists. It is also to do with the specific impression that Barry succeeds in giving to all therapists. He is completely plausible when all he has to do is to chat for an hour or so, or to do one specific job. In these types of situations his difficulty with knowing how to go on simply does not show itself, yet this was the primary need which I was working with. In spite of my passion for working with brain injury I was feeling very isolated from the community of Occupational Therapists.

As an extension of the work with Rose I asked one of my colleagues, who lives by herself and who mentioned that she would appreciate the services of a handyman, whether she had any projects that she needed to be done. She said she needed a letterbox and this seemed like a good project for him to get started on. On the next day with Patrick he went to visit her house to see where the letterbox would go and as he walked back, he began to observe letterboxes closely to get an idea of design. They drew up a plan together of a very basic letterbox and Patrick told him what wood to go and get.

In developing and deciding on the next activity for Barry there was nothing which was immediately presenting itself to me. I was no longer simply responding to a need which was obvious. I now needed to move to a situation where need was being created for him to respond to. It moved the job closer to something like ‘providing a service’, and this eventually became the model which I used with him. I would organise jobs which he could then do with his workmate. It was essential to start to create a real job for him if he was to be moved from the sense of pointlessness that he was experiencing.

Freddy said at this time: 'Barry felt in a making stuff mood, so they did some things, but he was frustrated that he did not have more things on the go'. The letterbox was something which could be ‘on the go’ for a while. One of the things that Barry said to me was 'when I am busy I always think of all the things that I want to do, but when I have the time to do them I never think of them’. This again made me feel as though I was on the right track.

My job was then to out and get the wood with him on a pouring wet day, when he was utterly exhausted and excruciatingly uncertain about just about everything. Patrick had mentioned one specific place to buy the wood and Barry believed he knew where it was, but we could not find it. We drove around and around in Barry's car till I got impatient and insisted that he buy it at a place that I knew. He didn't want to go there and refused to get out of the car. He was vague about what kind of wood he needed, although he did have the measurements. I made a unilateral decision about what I thought was best. Fortunately, this turned out OK and Patrick was pleased with the purchase. They were able to get started with cutting out the front of the letterbox over the next couple of days.

The following weekend he went away with Magda and her boyfriend, K..., on a camping trip. Nothing went to plan and they didn't actually end up camping, but they had a good time anyway. Normally, he gets upset when things don't go to plan, but his comment after this weekend was: 'the only thing that needs to go to plan is a job' (meaning a job like the letterbox)!

That Monday was one of those vague slow days and it was just about lunch before he got into the workshop. Once in there he made a mistake with cutting out the slot for the front of the letterbox and then he had lunch and went back to bed. When Patrick arrived later, this piece had to be scrapped and Patrick helped him to draw the shape of the letter slot on the next piece. None of this set him back and it seemed as though he was starting to relax a bit and take the ups with the downs.

Over the next two weeks with Patrick he started to plane off the edges of the front section. The sides were also roughly cut out and by the next week he had the side angles cut off the side pieces, so that all these pieces now fitted together. He then stayed up till 1am getting these nailed together. He seemed to be increasingly motivated to keep going with the job and it was moving at quite a pace.

Weekends with Magda were always an event and at about this time Barry went to a party dressed as a woman, which he thoroughly enjoyed. The following Monday was again very slow and we got nowhere near the workshop. I persuaded him to make the final phone call to cut off Sky TV, which I had been trying to persuade him to do for ages. He could not 'afford' it and his flatmates were not interested in it. This made it a cause of antagonism, since he would not let them watch it and suspected them of watching it secretly. I had promised to treat him to a coffee when he came off Sky and this is what we did. We met Magda along the way and we all went for coffee together. That evening he went out to rifle club without eating any dinner and he chose this time to ask out a young woman for a date. She gave him a very gentle 'no', which he must have expected, since he did not grieve as much as he usually would.

Over the next 10 days he cut out the base of the letterbox and fitted the middle shelf. This basic part of the letterbox was made in just a month. There has been a feeling of such finality communicated about it that the next day it was hard to get Barry to remember that there was plenty more work to be done before it is ready to put up. After about a week he did some of the more fiddly finishing off jobs, like putting on the hinges of the door.

Patrick noted that his coordination and confidence when nailing is a bit lacking, but that overall he thought that he could make another letterbox with minimal supervision. He was certainly learning things, but the fact that you can do something does not mean that you will do them. I got just as carried away as Patrick and started suggesting that he could make letterboxes to sell, falling into the trap of optimism with Barry. Even his very experienced advocate was filled with hope by what she was seeing, it was like spring for one brief moment. This was the moment in time when Barry became seen as someone who could make a letterbox. But again the reality set in, about what needed to be put in place so that Barry would actually continue to do the work that he was so demonstrably able for. The problem with the letterbox was that it was one thing which was isolated in time. Barry would have been able to make lots of postboxes on an assembly line, in a situation where he was going to make postboxes and where there was a clear need for letterboxes to be made and he was getting an acceptable level of reward for what he was doing. Left in his workshop with a pile of wood he was not going to make any more letterboxes.

He bought some new tools with me including a small plane, which Patrick immediately said was far too small and too expensive. It was taken back and a large second hand one purchased. Much of his working time over the next few weeks was spent cleaning and fixing this up. On a good week at this time he was spending up to 15 hours in the workshop. He had started wearing overalls, which made him look the part. When I commended him on the amount of work that he was doing, he said, "pretty antisocial, eh?" in a pleased kind of way. However, it then took most of the next month to get around to painting the letterbox. He used grey and orange paint, simply because it was lying around in Patrick's workshop. It was not as effective as it might have been and he refused to work out any design, having an obviously strong belief in his artistic ability. I do not think that the belief was warranted here and the end result was disappointing.. Towards the end of July he started to work on developing a template for the flap of the letterbox, which he then intended to make at metalwork class. Unfortunately the first night he was missing one of the measurements and so did nothing at the class. The next week he made the flap at the class, but then left it behind. At this point Patrick was starting to get impatient.

Patrick was working with Barry for such a short time that he never realised that the impatience was at least part of the point!

It was the middle of August before the letterbox finally went up, without the flap. That particular evening he wanted to get the job done quickly so he could get down to the pub with Magda, so he did not have much time to chat with the woman whose letter box it was. This was the awful night when Magda and he had an argument about how and where to park the car and he punched a hole in the windscreen in frustration. Magda left the job after that and I was very sad to see her go, both for Barry's sake and my own.

In his hurry to get to the pub with Magda he did not spend time with the person he was doing the job for. In not giving it this time they never really connected. The letter box, in fact, was created in a vacuum. The potential for relationship which might have come from it was never realised. It was a job done and that was all and it was not even a job which was paid for. It was not at all like working in Rose’s house and beginning to feel some sense of ongoing responsibility. The fact that they did not connect meant that there would be little future connection either. She did not show him around and chat about other jobs that might need to be done in the future. I was really sad about the way that this was handled. It made me realise how much more to the job there was than met the eye. It was very hard to make all of what I wanted to happen explicit, and it therefore did not happen. Yet the kind of person that I want for this job is someone who can spot the potential in every moment.

It was the beginning of September before the flap of the letterbox got added. The whole job had taken over 4 months to complete, many, many man hours, which in dollar terms might have been worth about ....$1 an hour. Patrick had left the job, along with 5 others and it was an ideal opportunity to take the next step in developing a work life for Barry. I was exhausted from trying to organise his work at a distance; it was time to bring in someone who could actually work alongside him in the workshop. So, we employed a real workmate, someone who stayed with him throughout the workday.

With his workmate Barry began the next stage of his story. He finally had someone who could work with him for 12 hours a week, who was skilled in the kind of handyman jobs that Barry needed to do. My job continued to be one of helping to find a direction, within the context which was now created of a ‘workday’. His workmate was able to work with him for 3 days a week from 11am to 3pm and the other two days I was able to obtain supported employment for him at the Polytechnic. The constancy of the workday has been maintained even through many changes of staff, so that Barry is no longer quite so much at the mercy of the individuals who are working with him.

The letterbox was finally finished off, five month after beginning it, with this new workmate when, together they went around and fitted the flap. The catch for the flap did not get fitted for another 18 months when they went back to the same house to do another job. They worked together on a series of small jobs based in the workshop, like making a tidy area for the tools and doing up a couple of sets of drawers. A t the beginning of 1999 they began to work together on making a barbeque area out of the old vegetable patch at Barry’s. This took them the best part of the year and the whole thing was done beautifully. Towards the end of the year they began to do small contracts for other people, e.g. making compost bins at one place and putting up a fence at another. It is intended that this will continue in the follwing years.


Next page: Story 8 - Employment



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