by Nikki Ridley
He was withdrawing.
I stayed there for little over a week after he came out of his coma. After that I had a life to get back to, and I couldn’t take much more anyhow. We were told that, if he even lived, he was going to be a vegetable, that there was no point in looking forward to anything else. It was over.
I thought he should rather die. I couldn’t stand seeing him like that. It was unimaginable. Pointless.
But he did live, and the unimaginable continued.
After the hospital, my parents, unable to look after him (no one could at that stage), put him in a government-funded psychiatric hospital. It was a true archetypical state mental asylum, and he was placed in the lock-down ward for the criminally insane. Level One. What a peach.
I remember the palms of my hands turning icy cold when I went to visit him there. There were truly mad people in that place. You could look into their eyes and see the insanity. Young people too. Good-looking young people, but when they looked at you … you could see it. Psychotics. There was no bright future in store for them. They were gone, and Paul, blind and confused, was placed in among them. He could see nothing, nothing, nothing, and they would attack him because he was so vulnerable. After the hospital, it was just more hell for him.
It was unbearable for him. It was unbearable to see him in there. He didn’t know what was going on. When my parents visited him, my father would hold his hand and Paul would just cry and cry and cry.
He begged us all to help him. ‘Please,’ he would say, ‘please help me. Please get me out of here. I don’t know what is going on. I can’t see. Just take me away. Please!’
He was very, very scared, and always crying. It was rough for all of us to deal with his emotions and the place he was in, what had happened … what was going to happen, but it was especially hard for my parents.
It was some measure of relief to me, however, when, after an assessment, they moved him from Level One to Level Two in the asylum. He was at the very least no longer at the mercy of the completely and criminally insane inmates against whom he could not defend himself.
There was just nowhere else for him to go. He needed the intense care that Townhill could provide. He had to be left there.
After a year he had improved enough to be taken out, but things were hardly much better.
My parents were unable to place him in the home for the blind in Durban because he was still quite severely incapacitated. He was utterly unable to dress himself, brush his teeth, or even feed himself. They had tried, but he had been sent home after the caretakers there had said they couldn’t cope with him. He’d get out of the shower and just stand there, and they had too many people to take care of to be able to dress him day in and day out.
He did not have the necessary motor co-ordination to do even the most basic things, and as a result he needed more intensive care than could be provided for him at such a home. Everything he did had to be supervised and assisted.
The only other option seemed to be a home for the mentally disabled. Stunning old building, but that’s where it ended. It would have been a sad place for Paul to be in. It was also run by the mentally disabled, and not to make light of their efforts and dignity, it was no place for my little brother. These people had very low ceilings on their lives, and the place seemed to me to be permeated by a lack of hope that would not do Paul any good. He had no hope of recovery if he was going to be there.
I could not bear the thought of him having to live like that, and so I told my parents that I would take him. He would live with me in Plett.
Paul was still a very frightened kid. He had also put on an incredible amount of weight. He had not been active for months, being blind, unable to move around much, and heavily medicated for much of that time. He had ‘blown up’. He was a big, big boy. From heroin chic to tick. With a horrible state haircut above his little round face.
It was probably the medication more than anything that made him so big. It was so disconcerting seeing him like that. He had been absolutely stunning – really ‘out there’. Hot. He’d had a huge personality, and now it was replaced by a huge body. His mind … well, he just wasn’t the same person. He was only capable of very childlike conversation – very simple and very innocent. I felt so much heartache for him and for what was gone.
In general there was a lot of sympathy and heartache for him, but I knew that he needed more than that if he was ever going to enjoy any quality of life. He needed to be pushed, or he was never going to improve. Softness and ‘ag shame, just try your best’ were not going to get results. I was determined to do the pushing, and to do it till I got results.
My son, Daniel, was two years old when Paul came to live with us. I’d had one child to look after. Now I had two. Much of a muchness. He couldn’t dress himself, so I would teach him, just as I was teaching Daniel. It would be a process that would take a little time, but I didn’t think that it would be all that difficult.
It was absolutely impossible.
I had to teach him to take basic care of himself, so I started with trying to get him to take his toothpaste, toothbrush and soap with him to the shower. That’s all he had to do – then come back, washed and brushed, and put his clothes on.
I didn’t think it was much to ask, but for Paul it was an enormous task.
Sometimes he would just sit on the step outside the shower, and I would say ‘Pauly, what have you forgotten now? Where is your soap?’ Then he would go back to the shower and get his soap. He couldn’t remember it all. Then he would come back and I’d tell him to put his clothes on, and he couldn’t. I got so frustrated with him that I took to prodding him with a coat hanger to jolt him into action, so he wouldn’t just sit there or not respond to directions. As for initiative, there wasn’t any. Trying to get him to do things was worse than trying to get a two-year-old to follow instructions. Pauly, get this. Where’s that? Do this. What have you forgotten now? The same thing every day! Pauly, here comes the coat hanger! Where’s your soap? Where’s your toothpaste?
Apart from his inability to do simple things like dress himself, he also couldn’t see a thing, and he couldn’t co-ordinate his movements sufficiently to eat without throwing his food all over the place. He would end up feeding the table and the floor more than himself. It was a nightmare.
He had been such an intelligent guy, so it wasn’t just frustrating for us to deal with him the way he was now, but terribly sad. So much of him was lost. Not just his intelligence, but his personality and his spontaneity, his wit and the fire in him. So much of what had made him Paul.
It was emotionally painful, but he was my brother and I could do something this time, so I was happy to have him with me, whatever the practical day-to-day difficulties. I persevered, and I also stopped all the medication he’d been living on because I was sure it was keeping him dulled.
It took eight maddening months, but I did it. I got him to put his clothes on.
Being able to dress himself meant that Paul was then a better candidate for a home for the blind. It was a relief, because he couldn’t stay with me indefinitely. Apart from the fact that I had a child to raise and I needed to work, Paul now needed to learn to cope with his blindness, and the best teachers would be other blind people. The prognosis for his ever regaining his sight was extremely poor, and he would have to learn to live with it to give him the best chance of a fulfilling life.
So after he had been with us in Plett for about a year, we sent him back to Natal to a hostel for the blind. Things were easier on everyone then, and I went to visit him there, spending whole days with him. He was far more able to get on with his life in that environment, not least because he also started attending Headway – a centre for people with brain trauma.
Headway
Veronica Raaf
I FIRST MET PAUL IN 1998 WHILE DOING VOLUNTARY WORK for the Association for the Blind in Durban. They asked me if I would help with transport for a young blind and brain-damaged man between the John Palmer Hostel
for the Blind in Durban and a centre called Headway Natal, situated about twelve kilometres outside of Durban in the suburb of Westville.
I was not familiar at that time with Headway Natal, but soon learnt that it was a centre for people who had suffered brain injury and stroke, and had been opened earlier that year. At the time that I became involved, there were already about twenty attendees – mostly, though not exclusively, young adults with brain trauma from accidents.
Headway South Africa had been started in the early 1980s by a group of parents with brain-injured children to provide support and information, and had developed over the following years. The Headway centres, five across the country, are now places where brain trauma victims can go to receive therapy or just to spend their time in a stimulating environment, with the services of occupational therapists, psychologists and other professionals available to them and their families.
Headway Natal has an activity programme that begins at 8 a.m. and ends at 3 p.m. every weekday, offering pottery, woodwork, art, cookery and music classes, among other ‘diversional activities’, for those who, like Paul, are no longer able to function independently in society.
I warmed to Paul from the minute I met him. He seemed positive and cheerful, despite everything, and in fact would remain so for the most part throughout the period that I was involved with him.
From the time I agreed to begin giving this young man lifts, I had decided not to patronise him, but to treat him with the respect that he deserved as a fellow human being and adult. Yet when I met him, the teacher in me immediately prompted me to try to find ways to help him. I wanted to do my bit to help him improve, even if only during the short time that we spent together in the car.
It was immediately apparent to me that his co-ordination and awareness of himself in space and in relation to what was around him was not too good. I would ask him to do up his seatbelt, and he would clearly have no clue where to begin. He wouldn’t be able to find the clasp for the belt, and when I tried to direct him, for example saying, ‘the clasp is closer to your body’ or ‘the clasp is next to your hand’, he wouldn’t understand what that meant.
The injury to his brain, apart from his blindness, was very apparent. It is hard to imagine how a person would not be able to follow such simple instructions, not understand the concept of closer, and not be able to do the ‘little things’ – the ease of which is something we all take for granted. Yet here he was, in my car, unable to do up his own seatbelt no matter how hard he tried.
Nevertheless, over the months that I ‘lifted’ Paul, he made some improvements in those areas. Improvements that I increasingly viewed as impressive as I came to know him better, and came to know better the difficulties he had to face.
Paul’s blindness was mystifying, and initially a little disconcerting for me until I learnt more about it. There was nothing at all wrong with Paul’s eyes or optic nerves. His blindness was a result of hypoxia and the resultant death of the cells in the part of his brain responsible for interpreting the signals sent from the optic nerves. Yet this area of his brain was clearly not absolutely dead, because Paul could see things – if only sporadically. It could come and go, just like that, and sometimes so quickly that he would ‘know’ things that he was not consciously aware that he had seen.
So I was somewhat startled and intrigued when Paul first commented on the trees and flowering shrubs along the side of the road. How on earth …?
He began to do this fairly frequently, and he would often walk up to me and greet me when I came to pick him up from Headway. I would keep absolutely quiet, to test him, but he was extraordinarily good at ‘knowing’ that I was there. He would look right at me. It was not what I expected from a blind person, but I got used to it after Paul explained it to me. He told me that he could see on occasion – to greatly varying degrees, and that his peripheral vision was often quite good. He was also often able to distinguish movement and the difference between light and dark.
Sometimes, however, he could see nothing at all. Strangest of all, oftentimes he just ‘knew’ what it was he couldn’t see.
Paul’s ‘blindsightedness’ is a phenomenon about which much has been written, and it is peculiar to those who are cortically blind. The strangeness of it all, for me and for others who have come into contact with Paul, is that until one understands blind-sightedness, one cannot help but suspect that the person is lying about being blind! I would test him all the time. How does a blind man comment on the pretty flowers over there when he cannot see your hand in front of his face? Yet so it was with Paul.
He had been sighted, so his brain sometimes interpreted the blurry shapes and colours he did see into a picture, and sometimes got it right.
Through providing transport for Paul, I got to know the staff at Headway, and they soon asked me if I could find some time to teach at the centre on a voluntary basis.
I began with a class twice a week, teaching two young men how to read and write. They had both been injured in car accidents and had lost these skills. I found it very rewarding work, and I soon began getting more involved in Headway.
In January 1999, I took over as interim administrator at Headway to give the committee time to find someone who could take on the position permanently. My contact and involvement with Paul therefore increased greatly, and it was then that I really began to understand just how extensive his disabilities were.
Paul’s short-term memory was not to be relied upon, and he was unable to write or even conceptualise letters, numbers or their meanings. There was therefore no possibility of him learning a typewriter keyboard or learning to read Braille – skills that could help him connect with and function within the ‘real’ world.
Occupational therapists worked with Paul on life skills – things like making a cup of tea, cutting a slice of bread and so on – but with limited success. All of these skills required spatial awareness, and Paul struggled with them as much as he had struggled with doing up his seatbelt. It was extremely difficult for Paul to do something like put a spoon in a cup of tea, less because he was blind than because he was unable to mentally visualise where the cup was in relation to the spoon and his hand. Most blind people quickly learn such tasks and execute them with ease. Paul struggled to figure out the orientation of one object in relation to another.
He could not be directed easily, either. Behind/in front, forwards/backwards, over/under, near/far – these were now alien concepts to him. I remember that we worked and worked on teaching Paul to tie his shoelaces, as it was something he particularly wanted to be able to do. He was even sent back to his hostel after each day at Headway with a shoe-shaped piece of wood with laces so that he could practise. To this day, I don’t believe he ever got it right, and eventually a pair of ‘self-winding’ laces solved the problem.
Volunteers were also assigned to work on the use of a telephone with Paul – this time with a little more success, but not much. They tried to teach him to learn the pattern of the telephone buttons off by heart, but he had difficulty moving his hand from one direction to another. He tried so hard, and every now and again he would get it right.
‘I’ve got it!’ he would exclaim triumphantly, but the next minute it would be gone. Though Paul’s belief in himself never wavered, he did get frustrated, and I remember that, particularly at this time, he needed a lot of reassurance that he was making progress, however minutely incremental. The efforts of the volunteers paid off with this exercise, because I believe Paul uses a cellphone very effectively these days!
Other exercises were not so successful. Volunteers worked tirelessly with him to try to re-teach him the letters of the alphabet and the meaning of numbers, but ultimately to no avail.
Paul was given sessions on the computer to try to help re-learn letters with screen-sized lettering, as he was often able to just make out the shapes due to the difference between light and dark. This method was, however, not always viable.
One enterprising volunteer also made letter
s out of cardboard so that he could feel them, and another worked with him to actually write the letters down.
It wasn’t as simple as him not remembering letters and numbers or their meanings. If it had been, he would have been as teachable as a child, or as the other young men I had taught. It was a little more complicated with Paul. Because he was blind, he couldn’t be taught visually. He had to feel the letters to re-learn them, and that was where the primary problem came in.
Again related to Paul’s lack of spatial awareness, he was largely unable to interpret the feel or shape of something in his hand.
Volunteers would assemble a collection of familiar objects, such as pens and scissors, and ask Paul to hold them one at a time, describe what each one felt like and then interpret what it was. Yet more often than not, he was utterly unable to do so. He would have no idea at all what he was holding, even if it was something really simple, like a block or a clothes peg.
Over time a certain amount of improvement was made in these areas, but never enough for him to be able to consistently identify a cardboard cut-out of a letter as being what it was, let alone visualise a letter or string them together to make a word. Paul was never going to re-learn the letters of the alphabet or how to count, because the ability to make any real sense of such ‘symbols’ on any level was not there, and didn’t seem like it would ever be.
Nevertheless, Paul responded diligently and enthusiastically to each of the volunteers’ efforts, and he was always gracious and grateful for their help. His attitude throughout was incredible. He never became discouraged, and he never succumbed to hopelessness, nor did he ever appear to feel sorry for himself.
On the contrary, he came away from every session, no matter what it was, feeling very encouraged and firmly stating that he would get it right eventually!