The Million-Rand Teaspoon

by Nikki Ridley

  However, we could see that at best it was a fun exercise, and it was soon evident that that avenue was a dead end for Paul.

  In an attempt to try to improve Paul’s ability to transfer tactile sense into something meaningful in his brain, he was encouraged to participate in art and pottery classes.

  However, one swirl of a paint-loaded brush was the sum total of what Paul was able to conjure up to paint. He was also unable to visualise even the simplest of shapes, such as ‘ball’ or ‘sausage’, and so he quickly lost interest in the pottery.

  This was unfortunate, because we thought that the pottery would be easier for him and more likely to bring about some improvement, as it is very much a craft where tactile sense, more than any other, is stimulated – invaluable for someone who is blind.

  Paul nevertheless participated well and enthusiastically in many of the other activities on offer.

  There were regular sessions on improving cognitive functions and memory, anger management (many brain-injured people have difficulty in regulating emotion and display aggression), and how to cope from day to day with the limitations and difficulties arising from brain injury. There was a lot of emphasis placed on the so-called ‘executive functions’ that underpin successful social and life skills, which include the ability to make judgements, the ability to make connections between events, past and present, the ability to read nuance in a person’s face (or voice, in Paul’s case), and the ability to understand complexities. There were also sessions on how to have a conversation, how to make a cup of tea, and so on. There was music therapy, which Paul particularly enjoyed, and Trivial Pursuit, at which he shone, because his ability to recall factual information from before his overdose was still good.

  Paul also enjoyed cookery classes, and, as he made slow progress with the life skills, he was encouraged to participate in the preparation of meals. He was given jobs such as stirring and mixing. Chopping and slicing were a little more problematic, though!

  We also discovered that Paul had not lost any of his rhythm, after we took him to a big band evening held by the Durban Rotary Club to raise funds for a number of organisations, including Headway. Each group had to choose a theme, and ours was the Wild West. We all went appropriately dressed, with picnic baskets, and the mood was high. The band was fantastic and we danced the night away. Even those in wheelchairs spun them around on the dance floor and the ones on crutches boogied until they were exhausted! In the playful and exuberant atmosphere, Paul showed a side of himself we hadn’t seen before. He did not sit down the entire evening and he danced like a dream. He was so happy and carefree. Part of the fun was helping him to creep back into the hostel after midnight – like Cinderella coming back from the Ball.

  There was no doubt that there were many areas of Paul’s brain that were no longer, or barely, functioning, and that the damage was extensive and permanent. There was also no doubt that Paul had a long and difficult road ahead of him, and that ‘normal life’ and independence were out of reach.

  At least, there was no doubt in our minds. Not in Paul’s, however.

  It became increasingly clear to me that Paul’s blindness and lack of spatial awareness were, if not the least of his problems, certainly not the sum of them. I also began to learn a great deal more about the behavioural and psychological consequences of brain trauma, and I was able to recognise many of them in Paul, and see them for what they were, and as distinct from his inherent character.

  Paul’s overriding inherent qualities were his optimism and cheeriness, and his perseverance in the face of slow or, in some cases, no progress.

  What wasn’t inherent was his tendency to lose all sight of reality and become obsessed with ideas and desires that were completely impossible for him. My daily involvement with Paul meant that I had to deal with this constantly, and it could be utterly maddening.

  This tendency or behaviour has a name in psychology terms. It is called ‘perseveration’, but it is not to be confused with ‘perseverance’ – an admirable trait in most people and in most situations.

  Perseveration is a typical feature of post-brain-trauma behaviour, but the fact that it is fairly common does not make it any easier to cope with.

  When Paul exhibited this behaviour, he would become absolutely fixated on an idea and he would not for love or money let it alone. It would drive me crazy, as a lot of the thinking was ‘pie in the sky’, and I would get exasperated with him.

  For example, at one point I mentioned (foolishly, I realised soon after, but not at the time) that my son was working in London and doing some travelling, and in so doing triggered a major bout of Paul building castles in the air. He began to hold forth at length about how he was going to go overseas and do some travelling and … why shouldn’t he?

  I put up every argument, and there were plenty to put up, but he was not to be diverted.

  He would get a job – why shouldn’t he? – and he would buy a car – why shouldn’t he? – and he would pay someone to drive him around. On and on and on he went. I eventually had to ask our psychotherapist to have a chat with him to try to direct him back to reality.

  This happened with many things. Most of us are able to divert our thoughts, particularly if they are unrealistic, but Paul’s brain injury made it impossible until the ‘feeling’ eventually passed.

  ‘Get real, Paul!’ I would say, and his reply would often be a quote from his little nephew: ‘Can’t want to!’ – which, when you think about it, put his experience of it in a nutshell.

  I wanted Paul to have goals and I wanted to encourage ambition in him, but to do so was to tread a fine line through a minefield of extreme idealism and impracticality. If you stepped on one of those mines, it triggered another few days or weeks of Paul grabbing on to an idea and not letting go. He was like a pit bull with its jaws locked on to a dream, thinking that it was something real.

  I knew that it was a consequence of his brain injury, but it would often test my patience to its limits when he walked into my office to tell me of his latest plans. We banged heads on many occasions over his unrealistic expectations of life and his sense of entitlement to whatever it was he was after. Why shouldn’t he do this? Why couldn’t he have this?

  Because it is impossible, Paul. Because you are not able to do this, Paul. Because other people won’t do that for you, Paul. But he did not understand. He ‘couldn’t want to’.

  Reality did eventually creep into Paul’s consciousness, though, after he tried to follow through with one of his plans – and we let him.

  Paul’s parents had been living nearby, and providing a certain amount of support and contact with the world outside of the Hostel for the Blind and Headway. After they left to resettle in Plettenberg Bay, Paul got it into his head that he was going to leave the hostel and live in the real world. Despite much resistance and many tempering arguments, Paul would not leave it alone. Eventually his urge to be independent became unavoidably strong and he insisted that he wanted to share a flat with a friend who had previously lived at the hostel. The fact that his friend was also totally blind was no deterrent for him, and he steadfastly refused to listen to any and all arguments against this move. There was no way that two totally blind men would be able to live together and make it work. It would have been difficult enough if Paul was only blind, but considering his other disabilities, the idea was ludicrous. Paul’s friend was very well rehabilitated, and was already running his own basket-weaving business, but the logistics of him trying to cope with Paul without a sighted person to assist were impossible to comprehend.

  Nevertheless Paul insisted, and his friend did not deter him, so the hostel let him go. There was nothing we could do.

  As expected, it did not work out, and Paul had to return to the hostel with assurances from all that it was no loss of face that it hadn’t worked out.

  Paul became a little depressed for the first time after this. His parents were no longer always on hand to provide the support and attention he had reli
ed on, and he was very disappointed that his bid for independence had failed. He began making excuses not to come to Headway, and preferred to lie on his bed and listen to music. We were not going to let him wallow, however, and a concerted period of nagging by those of us who cared for him at both the hostel and at Headway eventually got him back on track.

  He had bumped his head, but perhaps it had been a good thing …

  Paul had regular sessions with the psychologist, dealing with his unrealistic expectations, and also with what had happened to him and how he was going to accept it and move on with his life.

  They discussed how drugs can affect a person’s personality, and how Paul’s drug use and overdose had affected his family. They delved into his childhood and school experiences and tried to identify anything that could have been contributing factors. They discussed his vulnerability and his predisposition to becoming drug dependent, his experiences during his drug-dependent years and his feelings about his prison terms.

  Paul could remember much of his former life, and the psych ology sessions were aimed at helping him to accept the consequences of his actions and to integrate it all into his present life, with a focus on what he still had and not on what he had lost.

  Other sessions revolved around cognitive rehabilitation, and the psychologist read to Paul from a book written by a woman who had gone blind as a result of a suicide attempt, and the coping mechanisms that she had employed to go on with her life.

  At Headway every attempt is made to make the brain-injured person feel validated, as many lose their jobs and the majority of them are unable to find employment again. If there is a window of opportunity for a person to be able to do something or find employment, Headway encourages them to take it. Still, it is rare to find such windows, and the changes in a person’s personality and abilities have to be taken into account when trying to match them to a new occupation.

  Fortunately for Paul, such a window existed, and it was during one of these sessions with the psychologist that the suggestion was made for Paul to go out and tell his story. Paul’s verbal abilities were still good, and this would be a way for him not only to build on that capability, but to also consolidate his experiences and derive some kind of meaning and positive outcome from them. We also hoped that he might be able to earn a small income from it, although that was never the primary motivation. Paul needed purpose, and he had a naturally positive outlook that made him an ideal candidate to reach out to others.

  His blindness and often confused thinking were fairly big obstacles, but not so big that they couldn’t at least be worked around. He was articulate, and he certainly had a story to tell. He was alive and kicking. He was one of the lucky ones. He could have been dead, and if you look at the statistics for the survival rate among Wellconal addicts, you could quite justifiably say that he should have been dead. He was around to tell the tale, and he was capable of it. That was the most important thing.

  The rest could be dealt with.

  We prepared Paul for his talks by asking him questions to try to force him to remember what had happened during all those years of drug addiction. Paul remembered a lot – but not enough, and not enough in sequence, to sit down and tell his story without gaps and confusion. It wasn’t just a matter of lost pieces of information – it was getting him to open up to things that he was ashamed of, and that he didn’t necessarily want to remember.

  We all took turns at ‘grilling’ him until, slowly, piece by piece, the story began to unfold. At first it was a shambles, but he persevered and it began ‘coming together’ a little more each day. Paul had to lay bare his soul, and his willingness to do that – to stand in front of an audience of strangers and do that – was, to me, highly admirable. I also admired him for his honesty and his perseverance in his efforts to unscramble and make sense of the jumble of memories that comprised his former life. There was nothing for him to be proud of, but he was willing to tell his story anyway.

  Paul went off for his first talk after about six weeks of preparation, accompanied by a therapist from Headway, and came back both elated and eager to do more talks. Despite his very limited ability to recall events in any kind of order, and his equally limited capacity to go into things in any kind of depth, it had been a success, and so for the next couple of years we sent off letters to schools in and around Durban requesting that they invite Paul to give a talk. We decided not to charge them, but we did point out that it was the only way that he could earn any money at all, and that if the school would be willing to make a donation to Headway, we would pass on a portion of the donation to Paul.

  There was an enthusiastic response from the schools, and Paul gave lots of talks. He derived enormous pleasure from his new career, and it showed. Somehow it worked. Something about Paul’s manner seemed to reach the kids. His natural eloquence was not well supported by content, until he was asked a question, but I have always thought that the talks were successful because, as simple as his replies might have been, he was so honest and forthright, and he spoke with a notable lack of self-pity.

  He generally came across well. Throughout his life Paul had apparently had the gift of charm, and it was evidently no different now. The teachers loved him.

  I believe that a part of the success of Paul’s talks was the fact that he was clearly no down-and-outer from a messed-up or impoverished background.

  Paul was like them, and the kids could see that. They could see it in his manner and hear it in the way he spoke. They could relate to him, and so his story touched them. He was from a good family. He’d had every possible chance in life, and no reason to fall by the wayside other than his own actions. He had been taken down by addiction, and nothing else. It had been so avoidable, and that is what I believe made his story so relevant for these teenagers.

  Certainly the many letters that Paul received from pupils after his talks backed this up.

  Headway is proud to have been a part of Paul’s life. Paul took his lot and made the effort to do something with it, and that is the best we could ever have hoped for him. That he succeeded to the extent that he did is more than we could have hoped for.

  Time to Think

  Paul

  SINCE MY RETURN FROM HEADWAY I’VE HAD PLENTY OF TIME to think. I haven’t had a job. I am, if not completely blind, highly visually impaired, I haven’t any skills … and the years have rolled by.

  I spend much of my time listening to music. I have always loved music. It takes me to a place outside myself, where I can just be – separate from the self that has concerns and worries.

  I like all music, but am especially fond of listening to songs that take me back to my youth, to the time before it all went bad. I listen to a lot of U2, the Waterboys, The Pogues – all eighties and early nineties stuff that takes me from where I am lying on my bed with my eyes closed, back to Savannah, to my friends, and to all the happy places we were in together. It doesn’t make me sad. It lifts me up. Those times are still a part of me now, whatever may have happened in between.

  Each song seems to have a particular association, but I don’t dwell too much on the past. I just let the associated feelings take me away from the here and now, and I am at peace.

  Images flit through my mind. The Transkei, with Savannah, and another time getting arrested for breaking ‘curfew’ there when I hiked down with a good friend. I think I was still in school then, and we’d hiked down to visit my sister in Port St Johns. The Transkei being the small community that it was, she had ‘connections’, and arranged with ‘Mr Fix-It’ (the local police chief) that we be released into her care so as not to have to spend the rest of the night in a Transkei prison.

  I was so happy then. I was having a good time. Weekends were a ‘jol’, and life was just, well … normal.

  I like to visit that time of my life, but sometimes other images intrude, unbidden, of the other times I was arrested, after things got out of hand, and the shithole prison cells I called home for months at a time. No ‘Mr Fix-Its�
� in sight.

  I remember playing chess with a member of the Wit Wolwe in Kroonstad Prison, and having to endure listening to his racist ideology while I whipped him at the game of all games. That memory brings a pang of loss with it.

  I was good at chess.

  I remember Dale visiting me in prison, and I remember being soooo damn angry with her, but I don’t remember why.

  I remember getting a little flat in Kroonstad, and painting the walls with a fresh coat of paint with a friend. The kind of thing you do when you get a new place and want to make it look nice. The only other memory I have of that place is that there was nothing left in it because I had sold everything, including the door.

  I remember playing frisbee by a dam just outside the town, and I remember hiking all the way to Jo’burg and back on a Friday night so I could score and get back without anyone knowing.

  I don’t remember the Bible study group I attended with Dale, but I remember the pastor’s face, and I remember relieving him of a couple of musical instruments.

  I remember more and more as time goes by, but the fuel for reflection will always be a few sticks short of a log pile.

  My years of introspection started at Headway, where I was encouraged to start organising my thoughts and memories sufficiently to tell my story of drug addiction to schoolchildren.

  There were so many things I couldn’t do, but I was still fairly articulate, so the talks were less of a mission to go out into society and spread a message or a warning than an activity to provide me with a meaningful occupation and short-term purpose. They were also a way for me to contribute by earning some money, so that, while full independence was still far out of reach, I was no longer fully dependent. I was, in a small way, helping to support myself.

  A spin-off of preparing for the talks was that I was forced to look back at my past, and to try to put the memories that I retained in some kind of order. My past was never a blank. In fact, while I did not try to delve into any kind of detail, it seemed to me that I had a full picture, but what I really had was more of an outline – a frame, with the inside of the picture in disarray.