Today is

 

Story 1 - The Accident

This short background comes from an interview which I recorded with Barry and his mother, Margaret, in October 1998. It formed part of a conference presentation where Margaret and Barry told their story to a group of Occupational Therapists. It is significant because this was the first time that Barry came out in public and told his story. It is included here to give a flavour of their voices and to provide a context for the story about the work that Barry and I did, which forms the body of the thesis. It is intended that this background information will tell the reader just how Barry’s need for occupation has arisen. His need was not a simple product of the head injury, but came about also because of where he was in his life when he had the injury and also what has happened to him in the years since.

The cast referred to here includes Barry; his mother, Margaret; his sister, Brenda; and David, the principal of the polytechnic at the time of this story. The words in italics here are direct quotes from the video made of this presentation, with the permission of Barry and Margaret.

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In December 1991 Barry had just finished school, he was 18 years old and he lived in a small rural community

It’s a hole.....a very small town about half an hour inland from Ashford. The only thing we have is a flour mill (Barry).

He comes from a well educated middle class family and Barry is the oldest of 2 children, a genial, teasing brother to his sister who was 5 years younger than him. Both of them were adopted, and they also had a sibling who had died. Barry enjoyed music and had the kind of personality which did not lend itself to getting into a passionate affiliation with sports or other activities. His strengths were his sense of humour and his laid back attitude to life. He loved pottering around in the shed, putting things together and tearing around on the farm bike. Knowing that he would not naturally come forward in a group setting his mother had ensured that he received speech and drama training throughout his schooling.

Traumatic brain injury

He had his accident on 27th December 1991.

I just remember what I’ve been told. I was at a friend’s place and we were planning the big New Year’s event for ‘91. Everyone thought of going to KFC, when we only had a KFC at Ashford. I thought I’d stay behind with my girlfriend and I borrowed my mate’s motorbike. We went for a ride, a rather short-lived ride. We went up a rather large bank and sort of stayed right about there (Barry).

They went up a track, unfamiliar to Barry and little used by anybody.

Barry was not found for several hours and no one knew where he was. People don’t go up that road for a very good reason. You go straight up a hill and you think that the road continues, but it doesn’t, it stops in a 10 meter gulley. So, he flew over the top and ended up in this 10m gulley. He wasn’t found for about 2 hours (Margaret).

Neither of them were wearing helmets and when they went over the top Barry had no idea of what was about to happen. It was over in an instant, his girlfriend broke her nose and Barry sustained a severe traumatic brain injury. She walked to the nearest farmhouse, but she was totally shocked and could not remember where she had come from, where Barry was still lying unconscious. Neighbours a couple of miles away, who had no idea what had happened, remember hearing his name being called for hours that evening as dusk was setting in. It took several hours to find him, critical time in the case of brain injury, when early intervention can reduce the amount of long term damage.

Then the ambulance came and took him to hospital. He was x-rayed at Ashford hospital and they just put a drip in and sent him to Rathnew hospital. There was no mannitol given, the diuretic that would reduce the swelling of the brain. In the meantime his brain continue to swell. He was in a deep coma for about 2-3 weeks (Margaret).

Rehabilitation

His family practically lived with him in the hospital, his sister Brenda was still just a young girl and she used to curl up on the end of this bed. He had to learn everything again - talking, walking, eating, dressing, everything.

He used to wander and we used to find him in the neonatal unit. We’d ask him what he was looking at and he would say ‘the blobs’. We used to just steer him back out. We used to have to find him all the time, he used to keep getting lost. He used to wander and wander. He would go round and round. He just couldn’t stop walking (Margaret).

When he was discharged after 4 months there was a further period of intense rehabilitation, which lasted for 16 months.

He came down as an outpatient to Physiotherapy, Occupational Therapy and Speech Therapy three times a week. The journey down would take about 2 hours and it was exhausting for him. By the time we hit the motorway on the way home he was asleep. On the way down I would give him a series of chores. He had to say two of the times tables and read 5 road signs and some number plates before I would let him off (Margaret).

Yeah, there you were breaking the 2 second rule (Barry).

Personal care

There was also some personal care which was available while he was living at home.

We came home on 12 hours of attendant care. We were only allowed to use them on Tuesday and Thursday and we weren’t allowed to use them over the weekend. With one of the carers Barry would go through the homework exercises which he had been given by the therapists. For the other day he used to go up to this man’s shed and potter around (Margaret).

I’m a grease monkey at heart. I love getting dirty (Barry).

After 10 months our attendant care was cut to 6 hours and by 1993 we had no help at all (Margaret).

Independent living

By the next year it looked as though the rehab process had run its course. It seemed to be time for Barry to try his wings and move away from home. During 1993 there were a couple of attempts at living independently. They were disasters.

On July 4th, 1993, Independence day, Barry moved into St Anne’s in Rathnew. He spent most of his time in bed and he came home in November. After another 2-3 months at home he went down to stay at the YMCA in Rathnew. It was just too difficult, there was no attendant care. We used to send down food parcels, which would not be opened. Food would be put in the freezer for him with his name on it and it would not be touched. We used to phone constantly and he was usually in bed (Margaret)

I was doing an ACCESS course, but I don’t remember much about it. The brain kind of erases unhappy memories. I used to go on huge missions, wanders.......(Barry).

All this was a severe shock to his system and he went home shattered and depressed at the end of the year.

When we brought Barry home he was very ill. He was very pale, very thin, unwell, unhappy. There was no support (Margaret).

Education and training

Months of hanging around at home had the whole family at the end of their tether. Family dynamics became such that his sister Brenda was sent to boarding school, which had not originally been planned for her. There were no services that were geared for Barry and the family was reaching breaking point.

We were desperate. We didn’t know what to do. Finally I got in contact with Barry’s old art teacher, who was now working at the polytechnic. We wrote to him and went to see him. Ken put together a programme for Barry which he thought he could do. So we went to the insurance corporation and asked them for support and eventually after much toing and froing, they eventually did support it. We got 10 hours a week, but it was always after Polytechnic had finished. There was never anyone else there and they were sent off into a little room at the back. It wasn’t really what I wanted, but it was all I could get. So he only ever really saw one person. That finished at the end of ‘94. So then I went to the head of the Polytechnic. He put together a programme, which Barry’s neuropsychologist cautiously recommended. (Margaret)

David Brock was the principal of the college at that time and he took a very special interest in Barry. A training course was set up which included components from the foundation course for the art students. Barry attended classes in ceramics, printing and photography, but there was a feeling that he was being set up to fail by being put among art students, who would have very little time for him. This is exactly what happened, he managed to do the work at his own pace, but he was very isolated. It was at this point, at the beginning of 1995 when I had just arrived in Rathnew, that I was asked to come along and do my first assessment of Barry, to help tailor a course to his needs.

Disability insurance

It was this year also that the fight for funding really started in earnest.

In September 1995 I made the first approach to the insurance corporation to see if he could be assessed under the new regulations. I was misinformed by a well meaning therapist and withdrew my application, believing that Barry was not eligible. I finally put in the application in December 1995 and it took a year for the assessment process to be completed (Margaret).

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Summary

Barry came from a very normal, loving family. There was a huge amount of energy put into the struggle to rehabilitate him and given the extent of his brain injury these efforts were relatively successful. However, once the rehabilitation phase was over there was a complete impasse and nobody knew what to do with him.

The story indicates that the effort to find a direction for Barry was unceasing, but he was still extremely unhappy during this whole period. There were glimmers of hope and some of the things that were done with him were excellent, but his story only really gets started when adequate funding is finally provided.

Next page: Story 2 - the OT arrives

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Brain damage stories-
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Story 1 - The accident
Story 2 - The OT arrives
Story 3 - The CD rack
Story 4 - The troll
Story 5 - The door
Story 6 - At work
Story 7 - The letterbox
Story 8 - Employment

Occupation in Literature -
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Occupation
Alienation
Being "well occupied"
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The person with brain injury

Discussion -
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