Usher's Syndrome is a fairly rare genetic disease. Every hundredth person has a gene for the syndrome, but only if both parents are carriers of this gene, their child is born completely deaf. Gradually, he loses peripheral peripheral vision, and with age comes complete blindness.
At 34, Lena Kulpina hears nothing and sees almost nothing. Her vision is arranged as if she was looking at the world through a very small hole in a clenched fist. Lena is married, and with her husband Alexei - also deaf - she is familiar from school. Both were born in Moscow, now they live in the Solntsevo district and are raising a completely healthy five-year-old son, Yegor. Lena knows that with time she will become completely blind, but all she can do to make her life easier is to wear lenses with +7 correction and to travel long distances accompanied by.
Life around spent a day with Lena and found out how she lives in Moscow. So that the girl could completely control the conversation, a specially invited translator Larisa explained in detail to her all the questions and what was happening around in sign language. Often it was necessary to select several different formulations and show a gesture so that Lena could understand him correctly, and sometimes - wait until she herself picked the right word.
I do not work, I have a second disability group. They say that at six months old they injected me with an antibiotic, and then I lost my hearing. The terrible thing is antibiotics. Probably, it was possible to pick up another, but it happened. Without medicine, I could die at all. Mom said that at first she did not know about the syndrome, and only then through friends she found out what kind of illness it was.
Usually I get up early - at 06:30 in order to manage to take Yegorok to kindergarten. First, I wash and dress myself, and then I raise my little son. As soon as he wakes up, he asks for something tasty - he loves cookies very much. I begin to explain to him that all this can be eaten in the kindergarten, and he always says: "No, I want you to give me everything, mom." I say that there is nothing, but he does not believe and runs to look at the kitchen. One cookie, I say, I don’t want, I want three at once. Well, a little boy, five years old - what to take from him? He always understands me. If not, I use a program on the phone that voices what I'm writing. Yegor does not know sign language well, but at home we have an ABC reminder.
While I'm going, my son watches cartoons, chews his cookies and plays on the tablet with a talking cat. When we have already put on shoes and got dressed, it begins: "I want to take toys to the kindergarten!" I do not allow to drag the biggest one, the teacher is always surprised why we brought such a huge bear. The child wanted what I can do, how to explain? The teacher does not know sign language well. The son is too lazy to walk to the kindergarten and asks to go by bus, but if you have to wait a long time, we go on foot. It’s more convenient for me, although I move very slowly. The husband cannot take Yegor - he leaves early for work.
After I took my son, I go home. I drink tea and watch the news on Channel One - there are captions. Rtr("Russia-1 ". - Approx. Ed.) Teletext also shows, but I'm interested in what goes on the First. Sometimes I watch Lifenews and Carousel, there is also text there. I’m sitting on VKontakte in deaf groups, on Facebook I read news and watch videos. I often cook at home, this is my hobby. Yesterday, for example, there were pancakes with condensed milk. I come up with recipes myself or find Natasha Koroleva from the First. I used to knit and even roller skate, but my vision has recently started to sit even more.
For a long time I did not get out of the house just like that, so now I am a little uneasy. I don’t feel very confident in the subway, although I have been traveling there since childhood. Riding in old wagons is inconvenient, you can easily get confused in the stations - there are only sound signals and there is no new system when you see which station is passing through. It turns out that for the convenience of the blind, something is arranged, but for me it is not. Control when the exit is necessary, counting the stops. A couple of years ago, the lights were turned off in Moscow, and the metro train stopped in the Paveletskaya roundabout - I was very scared. I remember that we got out of the car in complete darkness, then even a sighted person will be scared. First of all, I thought about the explosion. Other passengers heard that they were announcing over the speakerphone and exchanged information with each other, but I did not understand anything. Everyone came out more or less calmly, but for some reason I ran. The panic was terrible, my mother explained to me at home exactly what had happened.
I go to supermarkets myself, but it’s hard for me to navigate inside and it’s especially difficult with expiration dates, so I never gain a lot. Some of the products I often forget or cannot find a friend, so please go to the store and my husband.
I really love cosmetics, I order Korean and Chinese on the Internet. I’m doing a manicure myself, I dye myself and style my hair. Recently I came to a cosmetics store, explained to the seller that the hair began to flow in, and he helped me very politely and friendly: he explained everything simply and clearly to me as a child. In household purchases, one often has to rely on someone else's opinion - what kind of product they will hand in, I will buy one.
In a cafe, making an order is simple, the waiters understand me, and some even have a Braille menu. I heard that it is very expensive to manufacture. It's really hard for me to talk to doctors. Not everyone agrees to correspond, and there are a lot of strange words. Once a son was treated with a tooth under anesthesia, and it was difficult to understand what the doctor wrote in the explanations. I am an illiterate person, it was not easy for me to even arrange a meeting with you - I had to send some messages to strangers so that they would explain everything to me.
In minibuses, I try not to ride, although it is difficult, because buses run rarely and not everywhere. But how can I ask to stop somewhere or follow the road to press the exit button? In addition, the subway has these huge car barriers. I do not see them and a couple of times I almost broke my legs. Tiles for the blind were made wrong in the city, the workers laid them somehow, without knowledge of the matter, and at dusk I see absolutely nothing. Also, transitions without a traffic light are very poorly arranged. One such is near the store near my house: if I am with a child, I do not have time to look in all directions. Around the road, there are no signs, cars are flying, and it is impossible to cross.
Today, for the first time, I came to drawing classes at the Co-Union Foundation(deaf-blind support fund. - Ed.), I didn’t know about this before. The lesson is called "Chinese painting" U-Sin "", we are taught to draw: something about yin-yang and five elements, I like it. I will continue to study at home - not with this brush, but with an ordinary, but still - beautiful. Usually I only deal with my son in the playground - my whole life is devoted to the child. My son, sometimes, is hiding from me, at two years old he did not fall into his arms at all - I was very worried about the fact that he was constantly breaking out. Yegor still does not like to hold his hand, but how can I still control him, how to catch? I remember once we went to a shopping center, I drove him so that he would hold on to his bag, and then look - let go and disappear. Hooligan - stood and waited for me to catch him.