Musa Zulufrom THE LANGUAGE OF MEPARALYSIS... I WAS paralysed! It was a devastating realisation. It is hard to describ the feelings that went through me, the depth of my despair, : and alone I felt. I did not want to believe that such a thing had d to me. Young as I was, I had already accomplished so much in nd was looking forward to achieving so much more. I was at the my potential, in the process of spreading my wings for still greater My goal was to vault into the skies and shine up there with all r stars. It was a crushing blow to realise that those big ambitions in the wreck along with the person I used to be. 'What about us - is this where the road ends for me?' was all I could think of. d questions, but no solutions, nor any sense of direction to guide me out of my present crisis. I suppose I was just reeling from the Now, g in the pool of my own fears. It's not every day that you are :h change on such a scale and it's hard to maintain equilibrium and an optimistic outlook under such circumstances. I used to cry a lot during those early days - most of the time alone, so as to hide my pain from others. It was all so strange and confusing. I could not feel my lower body at all. My legs were numb and cold ad no control over my bladder and bowels. I was on a permanent catheter and had to wear a nappy - I was torn apart by the indignity of my condition and the helplessness I felt. There was a button next to bed that I had to press to summon a staff member when I had myself, and every time it happened, I just could not bring myself to m the move. Finally, I would find the courage and with quaking hands pres for help. Every time the nurses came to change my nappy and bedding, I would lie there frozen and wish for the moment to pass quickly. The nurses were always kind, but I couldn't deal with the fact that my privacy was suddenly invaded and my pride shattered. I would lie in my shame and wonder if that's the way a child feels every time he or she messes up- except that I was 23 years old! Every minute of every day I was confronted by some new and traumatic revelation. I was devastated to learn that I had also lost my erection in the accident. Short of a miracle, it was another loss I was going to have to live with for the rest of my life, and the pain of that realisation was not easy to take. Early morning bed-baths, physiotherapists, occupational therapists, psychologists, neurologists, medical specialists and their assistants; white walls and ever-clean lab coats, flit-tables and parallel bars, catheters and suppositories, X-rays and thermometers, multiple scans and timed visits …persistent wails and death in the ward. These were the elements that made up my days - not my version of an ideal world! Nobody wants to live in a place where death and life are continually balanced on the scales, and that has been my experience of what defines a hospital. In that place, there was constant pain and uncertainty, and the only thing that ever seemed to make any of the patients smile from the heart was the moment when they were discharged. I am scared of hospitals. I hate the way that control is taken away from you there. In that world, not much seems to be perceived as a positive sign. You wake up sad one morning and they say you are depressed; you wake up feeling more cheerful the following day and somebody says you are exhibiting signs of schizophrenia- you can almost hear their minds whispering 'denial' .You are constantly labelled and tagged. I hated living as a 'case': 'Sister, how is he today?' You become a third person in your very presence. 'Tell him such and such and make sure he takes this medication once in the morning and once before he sleeps.' My life was suddenly placed in someone else's hands in the name 0fcare, my independence taken away from me. I felt I had lost myself. I was half out of my mind with fury at my situation, carried through the days on the waves of my frustration. I have never been one for confines - the outside world is my home, my space. Now, day after day, I was in bed, inside a ward with virtually no colour, no visual stimulation, where almost everything was white, from the ceiling above my head to the tiles on the floor below the white bed -all much too clean and antiseptic for an outdoors boy like me. All I wanted was to walk out that door back to my familiar 'pig-sty' at home. Even the food was very different from what I was used to in taste and appearance.The mood and the air were always cold. I take my hat offto the healthcare workers of the world for the hard work they put into trying to make those places a normal environment, where people can embrace the hope that they will live to see the next day in. Not that I was even in a bad hospital. Since I was fortunate enough to be on medical aid when the accident happened, the ambulance crew took me straight to a private health facility.This was Entabeni, a private hospital of world-class standard, where everything possible is done to ensure the highest levels of health and recovery. All the facilities were there to give a solid foundation to the long-term rehabilitation programme that would be implemented in the days ahead. I remember my reaction when the wheelchair first came - I cried my soul out. 'God, why have you forsaken me?' Questions and endless tears! The nursing staff helped me up and placed me on this 'object'. I hated it with all my heart - to me it represented my helplessness. My pride made it difficult for me to accept. I could not deal with the prospect of being seen riding on that thing by people who had known me during my able- bodied days. I kept being told everything would be 'fine'-but to me, that wheelchair tolled the bells of my final moment. I was so traumatised by the thought of lifelong paralysis that I believed I was literally going to die. At night, I had recurring bad dreams where I was drowning in the bathtub. My legs were paralysed and my arms too weak to pull me up and save me from the danger- I would actually see myself slipping away underwater. It was a terrible nightmare. When I woke up there would be beads of sweat running down my forehead. I know now that the dream represented the helplessness I was feeling, but at the time, it all seemed terribly real. I would lie there dead scared- convinced it could really happen and that it would be the end of me. I longed to go home where I knew I would be safe with the people that loved me. I was very lonely in that hospital ward, a stranger in a strange world - isolated from my own identity and the vital energy of society. 1 admit I wasn't an ideal patient. I threw a few tantrums and boycotted meals in protest. It was the only way I could express my frustration at the situation in which I found myself. In a short space of time, my temper had created bad blood between me and some of the nursing staff. One of the most devastating things about paralysis is the way it impacts on normal bodily functions. Because I could no longer urinate in the normal way, I had to use a catheter to empty my bladder. The first few days, I was hooked up to a permanent tube. Then I graduated to the disposable kind, which I was supposed to insert myself. I hated that bloody catheter. It became my worst enemy. I found it completely humiliating to have to fiddle with myself, poking about in my penis, trying to insert the tube into the right channel. It was like puncturing the very essence of your manhood, tampering with the core of you. I made up my mind to boycott it, convinced there had to be another way. With my very limited understanding of human anatomy, it seemed to me that if water could pass into my bladder unaided, it must eventually, by the sheer pressure of its own gravity, expel itself unaided. I decided to conduct a little experiment to prove my theory. After two days of not urinating, my bladder till I looked like someone in the early stages of pregnancy. My doctor wasn't happy with what I was doing, warning me that I was creating serious risk of infection, with all the complications this would bring. But I stubbornly persevered. On the third day, I woke up to find the bed wet and my bladder blissfully empty. I lay there laughing in joy. My small triumph over the catheter signalled a much bigger victory in ways. The lesson it taught me was to work with and listen to my body. After three months of battling through this messy procedure of my bladder to fill naturally and then pressurise itself to empty naturally, I began to get control over the process. I started to feel the subtle that warned me my bladder needed to empty itself. Through experience, my mind learnt to attune itself to other signals too, the in the legs, the tingling sensations in the feet that indicated all was not as it should be. In this way, I developed a much more relationship with my body in general, and my capacity for has come back to an amazing degree.
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