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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