Blindness: What I Cannot Do Myself, Time Does
It will soon be thirty years since I started explaining to people around me and to the broader public what blindness is -- what its main characteristics are, how to deal with it, how to live with it. I continuously run into absurdities and senselessness in the media arising from ignorance about the reality of the blind. And I say to myself: What's the point? It doesn't matter how much I talk, write, explain, things are still the same as they were. Prejudices are still here, also stereotypes. Fear of blindness is still invincible, anxiety from being in contact with a blind person still causes cultural shock. I will no longer put an effort into changing the way people think, I will no longer try to show people my point of view and I will no longer mess with other people's beliefs about blind people and blindness. In short, there's no point in it and it is better to leave things the way they are, and life goes on.
I let things go their own way. And I noticed they went at least the same way as my ideals.
But things are changing, slowly but definitely. There are more and more people who are the reason I sit behind the typewriter. I read an article the other day that included the following sentence: "Blindness numbs senses." That is as true as the claim that "a bottle of gin a day improves physiologic potency.". Losing your sight is a process filled with uncertainty, mixed with fear, doubt and despair, despondency and pessimism, but the main feeling is fear of the future. People around you usually don't know what to say. They observe the process of the disease and wait for what will happen. They look at doctors with hope and expect a miracle to happen.
It will soon be thirty years since I started explaining to people around me and to the broader public what blindness is -- what its main characteristics are, how to deal with it, how to live with it.
I continuously run into absurdities and senselessness in the media arising from ignorance about the reality of the blind. And I say to myself: What's the point? It doesn't matter how much I talk, write, explain, things are still the same as they were. Prejudices are still here, also stereotypes. Fear of blindness is still invincible, anxiety from being in contact with a blind person still causes cultural shock. I will no longer put an effort into changing the way people think, I will no longer try to show people my point of view and I will no longer mess with other people's beliefs about blind people and blindness. In short, there's no point in it and it is better to leave things the way they are, and life goes on.
I let things go their own way. And I noticed they went at least the same way as my ideals.
But things are changing, slowly but definitely. There are more and more people who are the reason I sit behind the typewriter.
I read an article the other day that included the following sentence: "Blindness numbs senses." That is as true as the claim that "a bottle of gin a day improves physiologic potency.".
Losing your sight is a process filled with uncertainty, mixed with fear, doubt and despair, despondency and pessimism, but the main feeling is fear of the future. People around you usually don't know what to say. They observe the process of the disease and wait for what will happen. They look at doctors with hope and expect a miracle to happen.
There's a question I have heard numerous times: "What happened to you?" And I have answered the question numerous times. The answer is always followed with a typical, "Oh, oh, if something like that happened to me!". . .
After going blind, one is absolutely disoriented in the physical, psychological and emotional sense. Objects one saw every day and understood are all of a sudden distant in an unknown space, unreachable. It is the same with the apartment, the yard, the block -- they all turn into something unknown. Going to school or work is no longer possible without somebody's help. There's no playing with peers.
Everything has to be done from the beginning.: dressing, undressing, eating, washing, identifying objects, followed by the first uncertain steps into the unknown emptiness. Everyone who goes through this has his or her own story. My first success was to move around the apartment without obstructing anybody or running into objects, then to dress myself, wash myself, to finally realize that I wasn't spilling soup on the table, that I wasn't thrusting my fork in an empty space, that I wasn't spilling glasses anymore, that I was able to put a record on the record player, light a cigarette without burning my eyebrows or hair.
I decided on a new challenge. The goal was a bench in front of our building. Slowly, carefully, step-by-step, from the second floor to the first and ground floor, I listen carefully so as not to run into anybody or to knock over one of the kids and cause an avalanche of hysteria. Only a moment more, three steps into unknown and the bench was mine. I was so overwhelmed with my success that I repeated it several times that day. I was free from the captivity of our apartment!.
When it got dark and the bustle around our building was gone, I started to explore the neighborhood. I try to remember every detail by touching it. It was a building I had been living in for three years, and I knew it in every detail, at least I thought so. Things can be very different to touch than they are to sight!.
I noticed my orientation was getting better. I came to learn where sound was coming from. At the beginning, I found it very embarrassing when I turned my head away from somebody. But I soon learned. I started noticing that sound had different colors. People have red voices, green, brown, black, gray, gold ones. Voice can reveal joy, sadness, fear, uncertainty, lies and love. Shades I had never paid attention to before, so I didn't know they existed -- but they were now my main source of information about my environment and the people which I lived and worked with.
My next goal was to reach the last bus stop for bus number 3 to Litostroj. It was approximately three hundred meters away from my home. I was in a dilemma whether to try by day or by night. I would draw less attention by night, but what if I got lost and lost my bearings? There was a street and a railroad nearby. How could I get help in the middle of the night?
I took the risk and decided to go by daylight -- the first time before noon, the second time in the afternoon and the third time by night. Doing this, I overcame my biggest problem, as now I could get on the bus and go to the center of town anytime I wanted and the connection with the outside world was established. Besides the phone, I now had transportation.
Friends, relatives and neighbors kept asking me why didn't I use a white cane? I shuddered and replied short-temperedly, "What should I do with it? It is something blind people use and I can manage without it!".
But continual bruises to my knees and other bones from hitting flowerpots, piers, trashcans and parked cars made me to do something. As I still refused to use the cane, I used an umbrella. People asked me what was I doing with an umbrella in the middle of a sunny day. I'd reply jokingly, "You can never be too sure without coffee and a gypsy woman!".
I knew I'd had a great memory since my youth; nevertheless, when I started working as a telephonist I was surprised at how many numbers one can remember if you put your mind to it.
Many people who go blind ask themselves, why did it happen to me? How can nature be so cruel? What is my faith? Luckily I never did that. I had a life-threatening diagnosis and an amputation of the second eye saved my life. I was eighteen -- an age that does not allow pessimism, depression, black thoughts. Luckily I have an open mind and I was never burdened by the past and I'm not particularly scared of the future. That's why I lived.
It was harder in the emotional sense. It was the time of Beatlemania, it was a time of our first cars, of meetings for the coffee in Koper, or for the famous cream cake on Bled, regular girlfriends. However I sat in the park by the eye clinic struggling with unbearable pains coming from my tumor and trying, by guitar, to invite one of the patients for a walk by the Ljubljanica River.
My main concern was that I would drop out of my peers' activities.
I was always one of the important ones in my group before -- or at least was trying to be -- in both music and in football. The people I knew decided that every fleeting date was my future wife: "Kid, take her, be happy at least one wants you! Grab the opportunity not to hang around your mother's neck for the rest of your life!".
Each woman I dated lacked something. One cursed too much, the other dragged me into church, the third told me she saw me as the father of two or three, taking them to the Roznik hill on Sundays while she is cooking lunch. The fourth offered me mediation, and the fifth told me we could be friends as that is all a women can give a man.
I liked the inaccessible women best. They were a little bit dreamy and complicated. And I had so many plans! Get a band on stage, make a record, sign on with the faculty and get the education I wanted, go to America, meet Lennon, become a manager in a big corporation and drive a Mercedes. I dreamed and dreamed -- but knew they were just illusions. I'll become a grouchy blind man, I thought, monotonous and dull, disagreeable and fed up with an uninteresting wife, who will be bugging me with complexes and reproaches as to how I wasted her best years as she was sacrificing herself for me.
I then let things go their own way. And I noticed they went at least the same way as my ideals. As I started to go to work things got better. I was able to choose the suit I wanted, I bought a guitar and an amplifier, I formed a band and we started performing. One of the girls I was seeing I married. The first and the most important block of problems was overcome.
I can say that the first five years of blindness were terrible, but then things got better. I then faced the comedy of trying to find a good job, writing applications, getting interviews getting rejections. The true picture of our limited reality became obvious, where solidarity crosses the actual interests in attitudes in society toward being different.
I got a haircut, took off the jeans, dissolved the band. After marriage I got an apartment and waited for the right employment. I soon realized I had no chance of a real job. The time for a blind social worker had not yet arrived.
Once again I got together a band, let my hair grow and put on the jeans. I was at the same place as I was three years ago. But I was ready. We established a group of puppeteers with a friend of mine and wandered all over Slovenia. It was a small enterprise. Puppets, tent, light show, van and hiring part time co-workers. We traveled from school to school, from kindergarten to kindergarten. Profitable business, better than the one before with a rock group.
I reached thirty. I got tired of wandering around. Lennon was dead, too. As I looked back on the past, I felt good. If I had survived a dozen years and I was still OK, then I would survive ten or twenty more. Hold my head up and go on!.
I started to write a book. It took me by surprise when the book became a bestseller overnight and I became a famous writer. A blind man writes pornographic books and people are buying it! I laughed when I remembered my father's words some years earlier: he didn't understand why people were paying me to shout down from the stage. Now they were telling me that I was obscene, selling my perverse goods, instead of being ashamed.
I had mixed two taboos, disability and sex. I knew that it would be hard for people to accept one with the other, but the mixture was selling. I must point out that I had a publisher who liked my literature and I guess he liked me too. The former editor of Presernova Druzba was there for me the whole the time with his support and advice. So, first Slovenia, than Yugoslavia and the world, I dreamed; Milos Forman and a movie! My success would be guaranteed till the end of my days.
The first book was followed by a second one and then a third. I flew on the wings of my success and I was full of myself. I refused high politicians with a touch of arrogance when they offered me a job, nice, not too tiring and quite well paid.
But I got disillusioned after a year or so. My literary success was fading away, the financial pipe was closed.
I started to sell the things I had once bought. Some good guitars and at last a piano. I found myself in the situation of wondering in the morning where to go for lunch. There was mother, but it was embarrassing to take a step back. My marriage had become shallow and empty.
So, a second bomb in a short time and without any war declaration. But I'm a lion by my horoscope and I have something catty inside. Once again I landed on my feet, just a little bit harder than before. A new marriage followed, children and a new book. Family demanded a second time, and this time I did not refuse it. I became a public servant, something completely new for me. I fell into my own territory -- changing public opinion about disabled people and the stereotypes about them. I became familiar with different types of disabilities.
It has been 30 years since I lost my sight. Somewhere in the middle of this, I accepted the white cane and discovered its advantages. I also discovered that the world of the blind is as rich as everybody else's world. To those who say that they would hang themselves if something like that happened to them, I tell them that blind people are at the bottom of all the social scales measuring suicides. Very few blind people commit suicide.
When I speak with someone. I clearly imagine his or her face. I'm sure that if I were to see again, I would recognize every one of them without saying a word.
It is funny for me to think about the perceptions that people have about blind people. I have heard, "Oh, poor thing!" many times -- but never from the successful, intelligent people, psychologically mature people, satisfied people. I hear it from unhappy, dull people caught in everyday life. Those are the ones who are carry the kindness too far when they speak to me as if I'm someone to take pity on.
What can I do with pity? It cannot buy me bread, I cannot reach a woman's heart with it and how would my own children look at me if I played that card? That is why I become angry when I read about blindness numbing the senses. On the contrary: it sharpens them, to the extreme.
Slovenian novelist Luj Sprohar, whose works include I See Too and Empty Streets, has written many articles on disability for the Slovenian press. He is Director of Slovenia's Office for the Disabled..
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