by Nikki Ridley
Earlier in my story I used the analogy of a puzzle, with pieces missing. Staying with that, in trying to assemble that puzzle over the years, I started, as one does, with the outside border and the corner pieces, gradually finding places for each of the inside pieces. Five years down the line, I have found a place for many of them, but there are still pieces missing, and some others that may or may not be in the right place. I don’t know, because I haven’t got all the pieces, and a puzzle piece only fits when it hooks into the other pieces around it.
More and more pieces have appeared, though, over the years – especially in the last year – and it is gratifying when the reappearance of one lets me place a whole lot of others correctly for the first time. It’s a work in progress.
For a long time, I didn’t want to think about certain things because I felt ashamed of what I’d put my family through, but I have had to in order to tell my story. The years of thieving. Going into gyms and scaling gym bags. For some reason, maybe because it was my favourite employment at the time, that sticks in my head when I think of the things that should shame me now. Pretty much all of it is nothing to be proud of, but I was a drug addict and everything, my actions and their consequences, were a product of that. It can’t be undone, and rather than feel the need to hide what I find when I dig into the past, I lately feel uplifted. It has been a huge boost to my self-confidence to be able to tell my story, and each new recollection, however tiny or indistinct, adds to that feeling of confidence. I want to remember now, because it has become a good thing to do so. I have had to push myself mentally to tell my story to schoolchildren and on tape, so that it can be written. I have had to challenge myself to put my memories in order and to translate them into words that can capture and convey them.
And I am getting better and better. Remembering has helped lead me back to the self that was gone for so long. That’s what’s important, and remembering new things feels great. I can even laugh at myself at times.
Then there is reality. My head over the past few years has been a jumble of what was and what is – like most people’s heads, I suppose – except that my ‘was’ and my ‘is’ have always combined to make ‘what cannot be’.
Independence. Living on my own and supporting myself. That is what cannot be.
I’d tried – once. It was an ill-fated attempt at getting back on my feet that left me sorely disappointed when I moved into a flat with another blind man in Durban. Suffice to say it didn’t work out.
The thing that I remember the most about that was the loneliness. My flatmate had a sighted girlfriend, and he would be out with her all day, or at the gym, and doing all sorts of things because she could drive a car. I, on the other hand, went nowhere, literally. I’d sit in the flat and listen to the sounds of a busy city outside. The sounds of a world I was not participating in, a world I could not participate in. It was awful.
The loneliness was killing me. I couldn’t do much for myself. I was no less dependent than I had been before. He cooked. He cleaned. He did things. I sat, listened to music, admired him for the way he got on with his life, and gradually, through the lonely hours, lost my arrogant attitude that I had the right to try to do the same no matter what difficulties I might face – and consequently no matter how many extra responsibilities I placed on others. I was therefore relieved when the time came to call it quits and go back to the hostel, where life was, at the very least, entertaining, thanks to the variety of characters living there. There was the blind Casanova who ran after the staff, and the man who spent his time breaking his radios. (He fiddled with them constantly, and broke them quickly – one after another.) There was the elderly lady who loved her vodka and got rollicking every evening at supper, the deaf and poorly sighted woman who’d lost her sight at the age of thirteen, just when she should have been starting her life. (And her sighted boyfriend who I thought was demented, and who assaulted me with a chisel over an incident with her as a result of her attempts to teach me Braille.)
Then there were the tragic – the quiet nice man who was both totally deaf and blind, and the man who had been sighted but had gone blind in a car accident.
Some made me laugh, some inspired tenderness, some made me raise my eyebrows, some disturbed me, but all in all I was in good company for the three years I lived there.
Everyone had a story to tell, and mine was no worse than anyone else’s. Moreover, my blindness was self-inflicted, if not intentioned. There was no room for self-pity while I was living there, and not just because I was forced to see my situation in perspective, but because of the fact that the others there had to do the same. There was no room for self-pity for anyone, and the general mood was good. The place was like a Chumbawamba song, and it exuded the kind of life force that comes from a pool of individual strengths.
We were all restricted through our blindness, but we were not isolated. There was always a member of a church group popping in to help with activities, and a woman whom I could not see but remember as being beautiful because her voice, the way she spoke with her Irish lilt, was beautiful. She’d come twice a week to read the papers to us and help us do crossword puzzles.
Through my failed attempt to fly, I learnt, among many things, that I had a place and that I didn’t have to prove anything to my detriment.
It brought me back down to earth a little, and I look upon that as less of a failure than a step in my progression.
I don’t think that full independence is absolutely impossible. It is now, but I have never really let go of my so-called ‘unrealistic’ ideas of living on my own. I will continue to work towards independence, however painfully slowly it goes.
The world is changing. There are so many new technologies to assist people with disabilities.
I am very aware, though, that unless I fully regain my sight, I will always need assistance to some degree, especially if I want to go anywhere. I have never had a guide dog, because I couldn’t look after myself, let alone a dog, and one is not permitted to keep dogs in the complex where I have lived for the last five years, but there is scope for that in the future.
It will come. There will be something. I can’t see it yet, but I am the eternal optimist. I have a great deal of confidence in a fundamental truth of life. Things change. That is the only thing that is sure. Life goes on and things change. I know that only too well, but that is what keeps me going.
I hope more than I believe that I will fully regain my sight.
I get depressed sometimes, in measures, but never to the point where I am totally hopeless. I’ve never been ready to give up. When I get depressed, it is more a case of thinking, ‘Whoa, what’s happened? How did things get so crazy so fast?’ Time seems condensed, and it also seems to rocket past me. The present seems to move so slowly … and yet the years have gone by and I’m not sure where they went. What happened? Was I there? I feel at times that life has ‘happened’ to me in the blink of an eye, and here I sit, reeling.
At these times I get a little nostalgic for a time before, when everything was okay. I still wish sometimes that I could take drugs, but it is not a wish for the substance. It is a wish for the time of my life when I could do it.
The temptation to smoke a dube is strong, but I know what it means to me. I’m tempted by it to use it to take back the control I lost. Dope is not pinks, but it is a gateway to an altered state of mind. Part of me wants to go through it, armed to the teeth with experience and vanquish my demons. Be the Master.
Then I remember that I thought I could control it once before. It was just dope after all. But I didn’t. I walked through that gateway and kept going. Why would things be different now?
No – it’s not really that. It’s that that part of my life is over. Sad. Who doesn’t think of being able to live their life over again and have a chance to do things differently?
Who doesn’t daydream of a time when they were carefree and life was all fun?
Wouldn’t it be great to taste a little of that past?
/> I am afraid of that innocuous little joint. I am afraid that, for me, it might be the devil dressed in lamb’s clothing.
I can’t go back.
I run every day on the beach. Until recently, my mother would drive me the short distance from our house to Robberg Beach – a stretch of golden sand several kilometres long and spanning about a third of the bay’s shoreline. She’d leave me there, and I’d run the length of the beach and back, tracing my way along a difference in colour that marked the waterline.
She’d be waiting for me on my return.
In the last year my eyesight has improved sufficiently (though very slightly) for me to walk to the beach myself – a small measure of independence, but an important one. I can cross the road at the traffic circle without getting run over or causing a pile-up … and this, along with a number of other improvements, has given my parents some freedom to move on and live their own lives without having to be on hand for me all day every day.
Actually, let me revise that last statement about the traffic circle. Truth is … it scared the hell out of my parents when I insisted on taking myself off to the beach. They were not happy about it at all, and for good reason.
I can see shapes, colour and movement, but not details – particularly when I try to look closely at something. When I eat or drink, I have to feel around for everything, and I walk around the house slowly, feeling my way from item of furniture to item of furniture. Things are a bit more than just blurry.
(When I get hold of cigarettes, I rely on our housekeeper to tell me when I need to kill my smoke because I can’t see when it is done. ‘Can I switch off the cigarette for you now, Paul?’ she asks.)
My vision fluctuates considerably from day to day. A lot depends on the light. In bright sunshine I can distinguish between objects of different colour, or light and dark. In the dark, I can’t see anything, but I can ‘sense’ movement.
I can see the cars because they are big, car-sized shapes, but I suspect that distance is more of a problem because I’ve heard car horns and screeching tyres. I actually hear that all the time. In fact, I heard that a couple of days ago. I walk with a cane, or I’ll bump into things. The cane helps me find the edge of the pavement.
Still, I haven’t been run over, or caused an accident, in a whole year, and it is important for me to do this. My parents recognise this, and that in order for me to continue improving I need to take every opportunity to be independent. It’s not just a case of practicalities. Suffice to say that there’s a minefield of dependency issues that go along with years of living like this, being taken care of by family members.
I need to try to do things by myself, and they also need me to try.
It’s working too. I have learnt, in the last year, to make myself a snack if I am hungry. I had tried in the past, but it was always a disaster. There’d be flames and … never mind.
I can wash up. I can make myself tea. I can make other people tea. I can dial numbers on the phone, and I can feel for and identify objects in drawers and in the fridge. I can do a lot of things I couldn’t do before, because I have had to.
I won’t say I don’t leave a bit of a mess behind when I do stuff in the kitchen. But I can’t see it, so it’s okay.
I often ‘watch’ movies or sports matches on TV, and, understandably, it puzzles people when I tell them I am off to watch a video or the cricket. I do watch it. I look at the TV screen, but I watch it in my head. Having been sighted before, I am able to, almost subconsciously, integrate the sound and the vague movement and shapes from the screen to form a picture in my mind. Yet, unless I am really on top of the TV I don’t see much at all, so I am mainly listening to it. I don’t strain too much to understand what I do see then, because the constant movement makes it very difficult to consciously interpret the images. I can’t see any specifics. So it’s easier to listen, and imagine.
People don’t always believe me when I say that I can’t see. I try to explain cortical blindness to them, but sometimes they don’t have the time or patience to listen, and sometimes I don’t have the time or patience to explain – particularly when I go out to the local pub, Flashbacks, which I occasionally do with friends or my cousin. I look right at people because, even though I cannot distinguish features, I can see their shape, and I greet people by name because I can identify them by their voices, even among a crowd of people in a noisy bar. A spin-off of deficient eyesight is extra-efficient hearing.
I am also able to meander my way through a crowd of people without bumping into them, because I have, after nine years, regained some of my self-awareness in relation to what is around me. I am used to it now. A variety of sensory input amalgamates in a split second to help me place myself in such surroundings.
There are a couple of people in Plett who are consequently convinced I am shamming.
It hasn’t all been progress, though. I gained nothing from my attempt to learn Braille. If anything, it set me back, because it knocked my confidence. I just couldn’t do it, and my teacher would shout at me. I may have mistaken her raised voice for something it wasn’t, because she was also deaf, but to this day I have not tried again – though I feel ready for it now.
Trying to do something I couldn’t do made me feel useless. As much of an optimist as I am, the realities of not being able to do the things I’d been able to do before my overdose knocked my self-confidence for a serious loop. Sometimes the effort of trying to cope with what I could do was as hard as not being able to do things at all.
When I first started seeing things – mostly just very vague shapes and movement – in Townhill, I sometimes pretended that I couldn’t see anything. I didn’t have the confidence to be able to see, if that makes any sense. I felt lost in my surroundings, and even more so when the effort of trying to interpret them visually was added to the effort of trying to move around and do things.
I didn’t always know where I fitted in relation to what I’d begun to see, or where to put my feet. It was even more difficult to find my way around the shapes and colours at times than it was to feel my way around in absolute darkness. It was therefore sometimes easier to just withdraw into myself and sit. No one would question my lack of confidence if they thought I was still totally blind, and they wouldn’t expect too much of me too soon. If they knew that I could see some things, they might think that I could see more than I actually could, or, worse, they might think that I understood what I could see.
That is how I thought, but I must clarify that I never shammed or used my blindness as an excuse to not do things for myself. There was, at that stage, little that I could do for myself in any case. I had the memory and concentration of a goldfish, I was drugged and confused and severely disorientated for much of the time. I was also afraid. I was paralysed mentally by a combination of these factors and I reacted the same way anyone would when confronted by an overwhelming situation that they don’t feel able to cope with. I curled up inside myself, and when I did that, I saw less, or nothing. It is amazing what the mind is capable of.
When I was first encouraged to tell my story at Headway – in preparation for the talks – I was very unconfident. I didn’t think anyone would be interested, and I didn’t really feel like I was capable of doing anything like that at that point. I didn’t feel worthy. I felt shamed by, and deeply ashamed of, my disabilities – perhaps because telling my story meant telling people how I had made myself this way.
I know that I came across as confident in my relentless optimism about the future and my dedication to the remedial therapy that I was being given there, but I didn’t want to tell people everything I remembered. I was guarded then – far more than I am now – and I think that a part of that was fear of not being able to handle my own emotions.
Even now, I don’t elaborate too much when people ask me what happened. I am not proud of anything, and I fear condemnation as much as the next person.
I get bored sometimes. Besides running, swimming, listening to music and listening to the
TV, there is not all that much to do, and I have whole days to fill. I do exercises for balance, and I use a squeeze-ball to exercise my left hand, which is still ‘lazy’ and difficult to operate due to muscle deterioration.
When I think of the things I’d like to do, I don’t think so much of reading, or trying to learn Braille again. I think of sports. I was ‘sports mad’.
I would sincerely love to be able to play squash again, particularly as there is a squash court here in the complex. I was a very good squash player once, but I can’t go and whack a squash ball around. People would be ducking and diving and screaming. I’d knock myself unconscious.
I would love to windsurf again, and I don’t think that is outside the realms of possibility. I’d just need to develop a little more confidence, but I think I could do it. If I can navigate my way to the beach and back, I am sure that I’d be able to navigate my way around the lagoon.
We’d have to get new windsurfing gear, though. I sold our boards for drugs years ago.
I attend a Tuesday night religious cell group at the complex, mainly because it is close by, and the people are very nice. I like people and I enjoy the contact. Lately I go out a bit with friends, to supper or even to go dancing at a club. Life is not bad, but nevertheless I feel lonely at times. I don’t always feel accepted, perhaps because the level of socialisation that I enjoy is not what it could be if I wasn’t disabled.
I sometimes think about Savannah and what could have been if I hadn’t gone the way I did. She was my childhood sweetheart. Who knows what the future could have held? There is no way of knowing, but I do know that I lost her far sooner than I ever should have. It makes me sad to think I screwed up something so good.
I threw away a good thing. Twice.