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Story 3 - Putting up the CD rack

Topographical disorientation in the person with brain injury

When he moved to the city of Rathnew Barry was lost, which was a classic case of topographical disorientation caused by brain injury. Surrounded by space, he confined himself to his bed, since this was the one thing that he understood. This was his place, the one place where he felt warm and cosy and safe. Everywhere else confronted him with the evidence of his brain injury. So he tried to tie space and time down in this one place, turning them into something static. There is little dynamic sense of space from the perspective of the bed. When he went out he was completely lost. He had the courage to wander, but he remained lost, because his ability to lay down familiar patterns was reduced. But he was also lost because there was no place for him to go and nothing for him to do.

Examples of frontal lobe deficits in concrete rigid kind of thinking

Suddenly he had a care package and he was surrounded by different people all day long. It was at this stage that the rigid, concrete (frontal lobe deficits) kind of thinking became evident. Now there were signs of him protecting his space, of setting up rules for where people were and were not allowed to be, where things were supposed to be, where the car was to be parked (precisely). The house that had been bought for him had a workshop, this was the focus of the whole house for Barry and it was what he always talked about when asked about the house. At the beginning of this time a number of different facilitators were allowed into his workshop. This became more and more restricted over time and gradually it came about that only his workmate was allowed to share this space. After a year of working together even this was restricted.

Places for various things have been sorted out over time and these are rigidly held to, because Barry gets upset if they are not in the places where they are supposed to be. Some of these rules are very sensible, while others are less so. It is useful to always be able to find the telephone directory, but the piles of junkmail on the table tend to get messy. It is good to be able to find the teaspoons, but puzzling to have to leave the kettle filled to the exact same spot at all times. It is a house where things tend to stay put. It is not a messy house.

On my very first day with Barry in February 1998 we went off to Hardware Galore together. He loves tools and Hardware Galore is his favourite shop. He had not bought any tools before this time and he was clearly anxious to begin. The men who work in Hardware Galore are particularly amenable to talking about all the different kinds of tools and are willing to make recommendations. Barry always wants the best when it comes to electrical tools and this day he was interested in drills. The salesman showed him a ‘variable speed Bosch’, with a hammer drill, reversible speed and a cord. It was particularly good value, he said, at just $99. Barry would have got it immediately, but I had no idea about what he could or could not afford and insisted that he go away and think about it. Next day he went back with his facilitator to buy it.

The cues used by a person with brain injury

He seemed to be really taken with the image of himself manfully drilling at something in his workshop, he was not exactly sure what that thing would be. He was collecting them to fill the space that had been given to him and called a workshop. In fact the transformation of the space of the 'workshop' into a real workshop could only happen if there were tools in it. A drill is something that you put in a workshop, and he was very appropriate in getting one.

On this return visit, the day after I had been there with him, they had a bit of a problem finding Hardware Galore. Barry insisted that he knew where it was and Susha trusted him since she knew that he had been there the day before.

In the early stages of moving to Rathnew he expected to get lost whenever he went out by himself and he would avoid this as much as possible, by always going with a facilitator. As long as he was being driven everywhere he was not picking up adequate cues to allow himself to become independent in navigation. Many permanent passengers in a car have difficulty with navigation, it is part of the nature of their passive role in the experience that they will not 'know' the route adequately. Being driven in the car, addition to his problems with topographical orientation was something which disconnected Barry from really getting to know Rathnew. But without the car, he would have never gone anywhere, because of his difficulty with managing time.

Ever since he moved into Friars Hill there has been this beautifully crafted metal cd rack lying around, shaped like a lizard. It was a birthday present from his parents, to tidy away his fairly large collection of cds. It was one of those elegant black things that fit with Barry's sense of style and there was no doubt that it had been chosen with care.

Clearly there was a sense of agreement within the family about what was ‘right’. Margaret went on to interpret that sense of taste throughout the house, since it was evident that Barry would never get to this point. She painted the kitchen and the bedrooms, put in curtains and ceiling lights and much more. It made it hard for Barry to really take possession, although he never seemed to mind anything that she did. It meant that he was living in a tastefully furnished house, which was easy to live in. This was really important in terms of supporting him, but it did nothing to help him feel connected.

I phoned him the night before I was due on again and he talked about putting it up. Moreover, he remembered this conversation when I came in, which was unusual. We prepared for the job all morning and he was reasonably clear about where he wanted to put it - it was to look as though it was walking up the space on the wall which you see as you walk in from the workshop. He tidied up and he practiced making holes in odd bits of wood with his new drill and we both tried out Uncle Sid's stud finder. We pottered around and investigated the space under the house, which you could reach from the workshop. There were lots of interesting things there. We wondered whether it might be a good idea to cover up those gaps in the wall with doors.

'When in doubt, tidy up' is one of Barry's unspoken mottos. When he goes into the workshop and is not quite clear about what he is to do, he starts to tidy up, so this area is one where everything has its place. However, the process of tidying can ‘capture’ him, so that he finds it hard to move on to doing something else. Tidying is something that is obvious, it is easy to know what to do and there can be no end to it once you start. It can mean that he finds it very difficult to stop tidying and get on with the job, because starting something is more difficult than continuing with tidying. It is a way of claiming space, to ensure that it is tidy and the workshop is a place which he really owns. However, even when he is tidying the workshop, his efforts tend to be focussed in a way which is less than helpful. For instance, he will spend hours ensuring that there is nothing on the floor, which the workbench itself will remain littered.

Keeping things simple is one way of compensating for the head injury.

Throughout the rest of the house his flatmate, Freddy, had introduced various systems for recycling waste and this involved a whole series of labelled boxes and bins in different rooms. This was another way of taking possession, through the way that the house was organised. However, it became clear over time that Barry’s value system did not encompass any of these environmental ideals. Margaret eventually made the decision that this way of organising the house was not what Barry wanted with his head injury, it was too complex. She aimed for simplicity and ease in the way she organised the house.

In general, we did everything that we could to put off that fatal moment of drilling a hole in the immaculate walls of his perfect home, that still feels brand new and not really his. I tried to look competent, giving little taps and knocks on the walls to look for studs. Then we checked and rechecked my findings with the stud finder. Barry was totally engaged with the little red light on the stud finder and there was a pattern to its findings. He also concurred with my finding different noises behind my knocks and agreed that that the duller sounds must be studs. Funnily (and unnervingly) enough, the stud finder and I did not agree about where the studs were. He was not keen to start the job and I never again saw him so keen to have his lunch promptly at 12, nor so determined to have a chill time at 1pm. He was terrified of the job and I was not much better. Prevarication was the tactic. The daybook tells something of it: 'We pottered about the workshop all afternoon: waterproofed the troll, checked the wood under the house, thought about putting in a door where the gap is; then we put up the lizard with much trepidation and success.' This does not tell the story of how I kept on eyeing up that space on his bedroom wall, which you could see through the open door of the workshop. It does not tell about how I finally said, 'let's just do it' and how we charged at it as though we were going into battle (with me in the lead and Barry following up behind).

He drilled the first hole in one of the few places where my knocking and the stud finder seemed to agree. Unfortunately, the stud was not there, which made him panic a little. What would we do, would the rack be held up if the screws went into plaster alone? After the second hole missed the stud I was ready to hand in my notice, this all felt too much. Barry on the other hand had crossed over the thresh hold, from fear into recklessness, and was ready for action. However, I was the responsible adult here and I suddenly felt how accountable I was to his mother if a large chunk was to be carved out of the wall.

The other two holes got drilled into the vacuum behind the plaster, without a stud in sight. We had those sockets, which you use in these circumstances, but I was not at all convinced that I knew how to use them. It was time to put those ghastly yellow holders into holes that were just too small, but how big was big enough? First the holes had to be expanded by rolling the drill around in them and them I hammered those yellow plastic things in. I did these jobs, since, if the whole wall was going to cave in, I wanted to be the person who was holding the hammer or drill as the case may be. Anyway, Barry was fairly tired at this stage and quite willing to hand over. They kind of popped in with a bit of persuasion and a hammer and were ready to do their trick of expanding behind the plaster when we started to do the screwing.

It was hard work putting in the screws. I was surprised to find that I was stronger than Barry, since he looks so well built. We took turns at putting them in and this part was soon done and the rack was up. The job had taken us about 2 hours, but it felt like an eternity. I put the CDs in for him next day, since I had a hunch that he would leave it unused if it were not filled.

He did not seem to care whether the cds went in or not but I could not care about whether he cared. I knew that the purpose of the cd rack had to be honoured if he was going to get any feeling of satisfaction from the job. I only really knew that it had succeeded when he turned around a few weeks later and put up the whiteboard by himself in the kitchen. He was beginning to make his mark on the house, in very small ways.


Next page: The Troll


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Story 3 - The CD rack
Story 4 - The troll
Story 5 - The door
Story 6 - At work
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