[A story by Lee-Anne a friend of mine who is blind.]
Intro: People often feel uncomfortable around those with a disability. Leigh-Anne Groeneweg tells us what it’s like without sight and why it should not worry us
Even though I don’t remember my parents’ or sister’s faces, I can still recall what colours look like. I close my curtains and switch on the lights at night because I know what cosy feels like.
At 13-months-old, when my Mom was pregnant with my sister, Candice, I was diagnosed with retinoblastoma (cancer of the retina) in my left and right eye.
My left eye was removed and my right eye was treated. Four years later the disease returned in my remaining eye and, to prevent it spreading along the
optic nerve to the brain, my remaining eye was removed. I not only lost all of my sight but my hair too for the third time due to the Chemotherapy.
A clear memory of that time is whenever I went into theatre (which was on 6 weekly basis) for an examination under anaesthetic my Dad would carry me and when the gas mask was brought closer, I would hide my face under his arm.
It all happened at an age when dealing with new experiences was part of everyday life, so I don’t have any melodramatic sob-stories to tell you, just that I remember waking up one morning not able to see anymore. At a young age like that, a person learns to adapt much quicker to changes in one’s life.
Because my Dad had his own business in Durban and my Mom worked with him we travelled between Cape Town and home for all my treatments. now that I was completely blind, my parents sold up everything in Durban and we moved to Worcester where I could attend the Pioneer School for the Blind.
It is here I learned to rely on my senses, especially my hearing, to such an extent that after I matriculated and went to Stellenbosch University, I could tell who was outside my dorm room just by the knock on my door – I still recognise people by their individual footsteps.
My orientation of my surroundings and where I am is very good and it has been like that since I was small. I just need to be shown a place once and the next time I will know where I am and find my own way around. I walk with confidence, so if I walk into something, so be it. Next time I will know it is there.
Eight months after completing a diploma in computer programming at a college in Durbanville I started work at Norwich Life on the IT support desk where
I stayed for three-and-a-half years. I then moved to the Pick ‘n Pay support desk where I have been ever since.
A big plus there is the extensive canteen. I try to eat my main meal of the day here during lunch. I really don’t like using a stove – and my worst fear is biting into a piece of raw Chicken – so for supper I usually have those frozen pre-packed meals one can re-heat in a microwave.
NOT ONLY THE SIDELINES
A large part of my life is taken up with my love of sport. I follow rugby, swimming, athletics, tennis and cricket with great enthusiasm. When there is a rugby or cricket game at Newlands, I am one of the supporters at the grounds. I take along a little radio to listen to the commentary and so become part of the atmosphere. Often people sitting around me, ask me “what was that penalty for?”
In 1995 after South Africa won the World Cup Rugby, I won a competition on 5FM and went to London to support South Africa against England at Twickenham and had the privilege of sitting next to Nick Farr-Jones (Australia ex-scrumhalf and captain). What an amazing experience!
I don’t just sit on the sidelines either. I am a keen swimmer and represented Western Province four times as a junior and 11 times as a senior at the annual swimming nationals where I also hold various South African records in the B1 class (totally blind class). I also represented South Africa at the World
Swimming Championships in Malta 1994, which was where I received my Springbok colours.
You might be wondering how I know when to stop or turn around. I have a basic idea of the length of the pool, so I slow down towards the end during training.
In competitions where time is essential, my coach taps me on the head with a rubber ball connected to a pole when I’m one stroke away from the edge, so
I can do a tumbleturn.
I am very determined and if I put my mind to something, I’ll do it. I have learnt to water-ski, finished the Argus cycle tour on a tandem, participate in
biathlons regularly and have twice completed the Fishhoek Mile.
How did I do the latter without going out to sea? We took a long piece of rope and tied the one end around my waist and the other around my sighted partner’s waist – there had to be enough distance between us so our arms did not clash. And when I started heading in the wrong direction, my partner would tug on the rope and point me in the right direction.
Besides being a complete sports fanatic I also knit jerseys out of my head, read novels (in Braille or with the help of audiotapes) and listen to various types of music.
I live in a flat on my own, very close to work. I have to cross a very busy road to get there and, as I would rather be safe than sorry, one of my colleagues fetches me in the mornings and drops me off in the late afternoon. I do not use a white cane, nor do I have a dog. Straight from work I go to swimming training, so it would not be fair to an animal that needs regular walks.
In the evenings when it starts getting dark I close my curtains and switch on my lights – it is more inviting for someone who comes and visits me to walk into a place that has lights on, instead of walking into utter darkness.
People often remark on how neat my flat is, but it saves me from falling over things. My cupboard, however is tidy but not colour co-ordinated. A common question is: how do blind people co-ordinate their clothes? It’s simple: all I do is take someone with me when I shop to help me with the colours and sizes.
I don’t worry too much about the different fashions for the different seasons, but it is important to me that I look nice.
I differentiate by buying different colours in different textures and styles. So when feeling through my closet, I know my cotton V-neck T-shirt is black or the fluffy socks are blue. The same goes for my shoes. Needless to say my fingertips are obviously softer and more sensitive than those of a seeing person’s.
I am not someone who wears makeup, but do wear lipstick now and then, especially if I go out at night.
THE NUMBERS GAME
According to other people my memory is excellent. I have the ability to remember a large amount of telephone numbers, dates and so on – I think the reason is because I can’t grab a pen and write down the details. Rather I am forced to remember, which is a great gift!
Dealing with money is not as big a problem as some people believe. How do I tell the difference between notes? When they are still new it’s easy. If you feel the bottom left hand corner of a crisp note, the R10 has one dot and the R20 has two dots and so on. As soon as the money gets older however, the dots wear down a little and aren’t as easy to differentiate any more, so then I go by length. A R10 is the shortest and as the money’s value increases, so does the length.
The coins are far easier, because apart from the size difference between the various coins, their edges have different textures.
I have a very positive outlook on life and I do not allow many things to get me down, because, I believe to be successful in life, a person must be positive.
Positive thoughts make for positive living.
I see myself as an independent person and will rather try and do something on my own, before asking for assistance. I try and live my life as “normally” as possible, to the extent that some people only realise after a while that I cannot see!
But I am human and there are occasions I feel down. There have been times when I have travelled to beautiful places, like Zimbabwe, Spain, the United Kingdom and Switzerland, where I wish I could have seen. Even in summer when I go to the beach with some friends for sundowners and they say “what a beautiful sunset”.
When I was young and everyone played games, like rounders or any running game which I could not play, it did make me sad, but I told myself I had to accept it, because if I was going to allow something trivial like that to upset me, then life ahead would be miserable.
Often I have moments when I would love to just go somewhere on my own, like walk along the beach or jump in a car and go and visit someone or go shopping.
But then I realise there are people who do not mind helping me and that I need to put my pride in my pocket. One day I hope to be in a position to be able to own a vehicle and employ a chauffeur.
I must say thank you to everyone who helped me become the person I am today. My parents, sister and friends have kept me positive and made me believe there is no such word as “cannot”!
So just why do we feel awkward around those with a disability? Psychotherapist and trainer at the South African College for Applied Psychology, Paddy Pampallis, explains:
“We are dealing here with that which is familiar to us and that which is not. This “not me” scenario is something that is split off and feared from the “me”; it is those parts of us that we can’t take into ourselves and we become scared of it. The thought of how we would cope with blindness is just too scary for us, so it becomes something awkward and difficult to work with.
“On a simpler level we don’t want to hurt other people’s feelings. This comes down to knowledge: the more we know about people and their condition the more we would understand.”
So how should we react?
“One should take the cue from that person, but generally we find that people would like to be acknowledged and not avoided or pitied.”
Ophthalmic surgeon, Dr Carol Willies, who regularly sees children with retinoblastomas, was greatly moved by Leigh-Anne’s story. “We, as doctors, don’t often get that close to our patients to feel how it feels to be blind.”
She urged parents to be responsible about looking for symptoms in the children’s’ eyes.
“Retinoblastomas represent about two percent of childhood cancers and usually manifest at about 18-months,” she said. But huge advances in treatment have meant more children’s eyes and lives can be saved. “However, early diagnosis is essential.
Symptoms include a white pupil and, at times, a squint. Less obvious signs would a dull or swollen cornea. If it is only recognised very late the child can get a large mass pushing the eye forward and distorting and disfiguring the face.
The prevalence is about 1: 20 000 in the normal population, but with a much higher incidence if there is a family history.
If the child’s parent has a retinoblastoma in one eye there is a 3 % chance of that parent having a child affected it. If the parent, such as in the case of Leigh-Anne, has bilateral retinoblastoma, the risk rises to about 50%.
Special microsurgical techniques and combination therapy would be used to save the eye or eyes, if possible. If, however, this is unavoidable, then prostheses can be fitted for aesthetic reasons.