Find Meaning by Losing Everything
Find Meaning by Losing Everything
Наталья Кремнёва

Наталья Кремнёва

Журналист, редактор. Родилась в 1950 году в Москве. Окончила истфак МГУ им. М.В. Ломоносова, работала 15 лет старшим методистом в ЦДК ВОГ (общество глухих). После ухудшения зрения и получения группы инвалидности перешла на работу в систему ВОС. Сотрудничала с журналами «В едином строю», «Наша жизнь» в качестве внештатного корреспондента. В 2003 году с группой слепоглухих людей стала выпускать журнал для инвалидов с одновременным нарушением слуха и зрения. За работу в СМИ в 2010 г. получила грамоту мэра Москвы. Главный редактор журнала для слепоглухих «Ваш собеседник». Живёт в Москве и Московской области.

Find Meaning by Losing Everything

Natalia Kremneva told about a happy childhood, studying at Moscow State University, complete vision and hearing loss, the organization Usher-Forum, and the magazine Vash sobesednik (Your Interlocutor).

We have been in touch with this amazing woman for several years. I am always astounded by her tact, intelligence, kindness, and filigree literacy, the special style of each of her texts, whether it is a simple letter or an article.

At the same time, Natalia Kremneva is totally deafblind. Usher syndrome did the trick in her life: by the age of 40, she has sequentially lost hearing, and then vision. Natalia Borisovna still wonders how she survived then, how could she make it through the despair, fear, and the unwillingness to fight further.

Family and friends literally dragged her back into life. And soon she found a new purpose, becoming the world’s only totally deafblind Editor-In-Chief of the magazine. It is the magazine of friendly communication, a bridge between those people to whose lives the darkness and silence came. The magazine of multiple hands holding on to each other.

In December 2020, Natalia Borisovna turned 70 years old. So, we interviewed her about life and time, which flows away from us, but remains in such texts, where the whole life is hidden in the words and between them (especially between them).

— Natalia Borisovna, I would like to start the interview with a question about your family. Who were your parents?

— I was born and raised in a very cultured, educated family, and this had an impact on my upbringing and the environment that surrounded me since childhood.

My mother, Nina A. Tsetkina (1919-1976), taught German at the Institute of Foreign Languages named after M. Torez, which is now called the Moscow State Linguistic University (MSLU). The father, Boris G. Kremnev (1914-1990), was an amazing man — a self-made cultured person, who achieved everything on his own. By education he was a journalist and theater critic. He passed the World War II as an editor of an army newspaper. Writer (wrote biographies of Mozart, Beethoven, Schubert for the series The Lives of Wonderful People), translator of a play and a novel by Remarque: the play was called The Last Stop, the novel was The Arc de Triomphe (translated together with Isaac Schreiber). For almost thirty years of his life before retirement he worked as the Editor-In-Chief of creative associations at the Mosfilm studio.

— That’s amazing! And what was your childhood like?

— I had a happy childhood! Despite the endless illnesses: when I was six years old, I noticed a slight decrease in hearing after the flu, and talking about the sight, I could never see in the evening… But I was brought up as an ordinary child, practically nothing was forbidden, I played with my peers in the yard… In those times we lived in the center of Moscow, and there was a beautiful courtyard and friends, with whom I played. I wasn’t bullied or teased.

My father taught me to ride a bicycle in the summer, and I drove around the country village. In winter, I used to go skating, my father insisted on teaching me, too. And it was the favorite winter hobby for many, many years! Also, l used to go to theaters with my mother. The most favorite performance, which I could watch endlessly, was The Blue Bird in the Moscow Art Theater. Later, The Minor and especially The Government Inspector. And my dad and I often went to the opera. It was difficult to get tickets to the Bolshoi Theater, so we went to the opera studio.

Also, there were trips to different towns and cities. Dad had business trips, and he used to take me with him. And with my mother, we went to the doctors: to Odessa, Minsk… And after treatment courses we always went around the city, to museums. In Moscow, too. But before she took me anywhere, my mother wondered if there would be enough light, if I could see everything there. And before going to the theater, she gave me a play to read. So I read, and then watched Bulgakov’s The Days of the Turbins (not once).

— You have got an excellent education (though, we’ll talk about it further). But usually, everything begins in childhood. How did your family stimulate your thirst for knowledge?

— Indeed, everything begins in childhood. In my preschool childhood, the main person was my dad. I never went to kindergarten, I was a homegrown child. And dad wasn’t officially working anywhere at that time. He translated Remarque and led a literature club at the House of Pioneers. And he was very much engaged in my development. It is thanks to him that I have a good, and most importantly, correct Russian speech: he kept a check on it very closely. I learned the letters early, but I had to work hard to put them into syllables and read.

He also constantly developed my memory: we learned children’s poems. And then I read them with pleasure in the House of Pioneers at kids’ parties: I liked to perform together with other children.

It was my father who tried to make sure that I was not diffident, he developed confidence in me. He convinced my mother that I should go to school alone when I went to the first grade to a common public school. It was located across the street, trolleybuses and buses ran along, and there were not so many cars in the late 50s. My mother was afraid to let me go alone. But my father insisted. He explained all the rules to me, and — go ahead! Every morning I walked alone, not feeling even the slightest fear. Many years later, my father confessed: he let me go, but for the first few months he insured me, walked behind me unnoticed. Everyone calmed down when they were sure that I was really attentive walking down the streets. This habit of walking and riding around the city on my own has helped me a lot in my life.

As a pre-school child, I had a strong fear of darkness. It was impossible to persuade me to take a walk in the evening, even taking me by the hand. But one day when I was about six years old, my father suggested going to the skating rink in the evening, where we used to walk in the afternoon. He had been trying to persuade me for a long time, promised to tell me various funny stories, and I agreed. The park was in 15-20 minutes. But we had to go through a dark alley with a single lamp burning and the dark temple. I was terribly afraid, but we ran through it imperceptibly thanks to funny stories and reached the park. Even from a distance, I saw the Skating Rink sign shimmering with colorful lights, and then I heard music, a skating rink flooded with light, and beautiful couples whirling in a dance. It was so great! Since then, I have not even thought about my fears! And I used to whine, «Let’s go to the skating rink, let’s go…» I wanted it exactly in the evening.

— And what kind of books did you prefer? Can you remember your favorite ones?

— For me, reading was rather haphazard and, as I now understand, scatterbrained. Of course, as a child, I loved fairy tales and all the books by Korney Chukovsky.

Dad read a lot of books out loud to me, and he obviously liked it. He wasn’t just reading, he was playing! I listened with bated breath. Like that I listened to The Minor, The Government Inspector, and The Treasure Island. At home there was a huge library, I read everything. There has been, however, some embarrassment. I read War and Peace when I was about 12 years old. But only the part about peace. I carefully skipped the war part. And in the first year of the History Department in the group there was a dispute about how Tolstoy described the war. I was silent. They asked my opinion, and I honestly admitted that I have read selected parts, but not the whole novel.

— Usher syndrome is a genetic disease and does not manifest itself immediately. I read that you had problems with vision and hearing since childhood. In everyday life, did this cause a lot of inconveniences?

— This diagnosis was made to me quite late, at the age of 26. And before that, they wrote separately: retinitis pigmentosa and auditory neuropathy. Just because nobody knew the Usher syndrome in the 50-60s of the last century in our country. But this does not change the fact of the disease.

The field of vision gradually narrowed, and visual acuity began to deteriorate very early. I adapted myself. For example, once I ran into a bucket left by a cleaner in the school corridor, I began to walk carefully, did not run, learned not to drop things on the street, in the subway, knowing that I could not immediately see them and pick them up.

Until my 15th birthday, we lived in a communal apartment, in a beautiful house in the center of Moscow. We had the smallest room in a 3-room apartment. The only way I could read was by sitting in the corner of the sofa and putting a desk lamp on the back of it. I was not allowed to turn on the gas heater in the bathroom, nor I was allowed to light the stove in the kitchen.

But as a child, the field of view was still sufficient: I played with the children, there were no special difficulties. It has been gradual: the older I grew, the more problems I had. I started to spill the tea out the cup. Then I adapted to do this by holding the cup upon the sink in my left hand, hanging it in the air, and almost never spilling it. No one taught me: I tried to come up with a solution myself. I learned Braille early, aware that I would need it. Hearing was easier, because in the last year of school I got a very good Danish hearing aid: with it, I could hear almost 90%.

— Did you have many friends then?

— As I already mentioned, in childhood, my social circle was the kids of Moscow courtyard. Typically developing children about my age, with whom I played all the children’s games. When we lived in the summer house (Russian dacha), there were friends in the village, my parents were friends with their parents. We had such a «dacha society»: we gathered in the evenings in someone’s garden or on the veranda, drinking tea; the adults talked a lot about politics, literature, new films, performances, and we, the children, about something of our own… In the winter we did not meet often. But we always invited each other to the birthdays.

Generally, the issue of friends of a child with special needs is very important, but for some reason, no one really devotes efforts to it. While children are small, they play hopscotch and ball, so there are a lot of friends. As they get older, typically developing peers become distant towards a child with special needs. This is an unavoidable pattern. But this is also sad: empty spaces can appear. Therefore, it is very important to create a social circle for a child like that, to select friends who will be close to him in adulthood. This is very difficult, but necessary! I didn’t have that as a kid.

— Did you graduate from a public school or did you have to go to a special needs school?

— Of course, I started first grade at a public school. Forty kids to a class. I was the only girl who had disabilities. I used to sit at the first desk. However, I did not write a single dictation as the teacher uttered it, standing next to me: I couldn’t hear that well. I wrote my own text, but it was more complicated. Only my teacher and my mother knew that I wrote something completely different. The teacher checked me, gave me grades for my work, and always praised me. She did everything to make my classmates help me.

But in high school, the teachers changed, it became difficult for me. Moreover, I appeared inclined towards the humanities. Math, physics, and chemistry were completely beyond me, I didn’t understand anything. And our class began to fall apart: the families of my classmates started getting new apartments, move out of basements and barracks. Our co-op house was also being built, and we were going to move. And then my parents decided to switch schools. They chose the school for hard-of-hearing children in Sokolniki in hopes that it would be easier for me to study there and I would have my own social circle.

   I was accepted. But the relationship with the Deputy Head Teacher and with some other teachers was not so good. In addition, just in those years, my vision quickly decreased, I was withdrawn. In all the exact subjects, the grades were bad, and I was scolded for them in front of the class. That made me even angrier. In a word, only the lessons of literature, Russian, German, and a couple of other subjects somehow heartened me.  Psychologically, it was an extremely uncomfortable thing. At home, I was a smart, intelligent, cheerful, sociable girl with a sense of humor. Once inside the school, I was becoming gloomy, sulky, always waiting for a trick and ready to snap, be rude, or cry, such a resentful girl waiting for ridicule and disregard.

  I just wanted to say goodbye to school as soon as possible.  The school provided an excellent education, but regarding morals, humanism, charity, tolerance — alas… Then all these values were left behind the scenes.

— How did you choose the History Department of Moscow State University?

— I wasn’t going to go to the History Department. I wanted to be just a journalist and nothing else.   For some time, I even used to visit seminars at the Central House of Journalists (my father arranged it): I liked them very much.

But when I graduated from school and announced that I would enter the faculty of journalism, my father said categorically, “No, you can’t be a journalist, you can’t go on business trips, meet, communicate with a lot of people. They just won’t accept your documents. You need to choose something else”.

 Perhaps for the first time in my life, I was told directly and firmly: this is not available to you. And, what was especially offensive at that time, it was said by my father, whom I loved endlessly, idolized, and used to believe every word he said… Later, I realized that he was right, he did not want any unnecessary emotional scars.  I gathered everything I wrote, put it in two bags and threw it in the trash! No spells no!

We decided that I would enter the History Department: that year there was the smallest number of students competing for each place.

— How did you spend your student years at Moscow State University?

— It was very difficult to study at Moscow State University. Having realized that I couldn’t listen and take notes at the same time, I decided to listen and remember. This was possible thanks to an excellent memory. I took lectures from my classmates and copied them. 

It was difficult to participate in seminars when several people were talking at the same time, interrupting each other, arguing. With a hearing aid, it was difficult to catch and understand the essence, there was noise.

But honestly the biggest problems I caused myself. All my youth was unspeakable self-doubt. The only thing I did was trying to hide my impaired hearing and vision. I was scolded for it, but it was useless.  Sometimes I got into dangerous situations. I was afraid to cross the wide Leninsky Prospekt without a traffic light, where I often went to the store, but I could not ask anyone for help. I just waited for someone to cross, and I ran across with him, attaching beside. 

At MSU, problems with vision manifested themselves more often than problems with hearing, and they were not always resolved immediately and painlessly. I remember when I had the test in German. We had to read and translate the newspaper article into Russian. And I didn’t see the newspaper font, it was too small. I asked the teacher to give me this text typed on a typewriter or write it by hand. She refused and did not accept the test. I visited her twice more. The same thing: read the newspaper! And without this test, I was not allowed to take exams. I cried, but I didn’t tell my parents.

Finally, after another useless pleading, my indignant friends went to the dean. The dean was a good man, a war veteran (he had no arm), he called the teacher and told her to take the test. She put the pass in my credit book without testing me, flung it to me, and we parted.  But this was probably the only case of straightforward ill-will. Generally, everyone was very attentive. My most favorite young teacher of the ancient history of the East taking the exam, offered to read aloud herself the questions of the ticket.

— We are coming to the critical point that has divided your life. I mean 1990 when Usher syndrome did its thing, and you first completely lost your hearing, and then your vision. How can a person get used to this, when the light and sound were “turned off”?

— Total deafblindness, that is, the complete loss of both vision and hearing, is a grievous tragedy. In my opinion, the most important thing is the support, the help of loved ones. Their attitude and ability to rebuild the life of a deafblind person so that he continues to feel love, his need for loved ones. It is impossible to get used to deafblindness. It is necessary to accept it, to adapt to live in new conditions!

I always knew that my vision would deteriorate, although the doctors in those years did not tell anything.  But I was completely unprepared for the fact that my hearing would suddenly and irrevocably decrease and no device would help me. And that’s exactly what happened: one morning I habitually put on the device… I heard the usual mumble of the radio in the kitchen. I heard the sound of running water. But when all this was “turned off”, I could not understand the question addressed to me… I heard the voice and did not understand the speech… No matter how I turned the volume of the device, it gave nothing but a whistle.

  It was my huge mistake: the hearing aid helped well, and I did not make an audiogram. Later I found out that neither did many of my friends with Usher syndrome. And this is dangerous because you miss the moment when your hearing begins to decrease. I didn’t want to believe that the problem was not the hearing aid, but me. I got a new Danish device, but it almost didn’t help me.

 I still don’t know how I survived then, there was everything: despair, fear, endless tears, just the refusal to live. It didn’t last long, but it was quite intense. And the main question was how to communicate? The main thing was that I worked for many years in the Deaf community, I knew that one can write on the palm of a hand. This became the main way of communication.  Then cheerfulness and optimism defeated. I got a job. I was very tired, but I was among people all day, there was no time for emotions. And it was necessary to earn something. Then I spent a month and a half of rehabilitation in the Volokolamsk Center, in the department for the deafblind, where, without exaggeration, I was returned to active life.

— In the West, deafblind people often talk not about losing vision and hearing, but about finding something new in life. Has there been any gain after the loss in your life?

— I think I had and still have some inner freedom. I somehow imperceptibly got rid of self-doubt. While I was able to hear and had some vision, I constantly tried to hide my problems. And when there was nothing left, there was nothing to hide. And I started to talk about my disability to see and hear.  The only excuse is youth. It is very difficult for a young attractive girl to say, “I can’t hear well, repeat…”. I became myself.

— I want to ask about the Usher Forum that appeared in 1998. You were among its founders. Tell us how and why this organization was created? What did you do in the first years of its existence?

— To answer your question, I will tell you about an event in 1992. Then the international festival of young individuals with disabilities was held in Moscow. And a group of children with Usher syndrome came from England, led by Mary Guest, a very well-known specialist in the world, who was engaged in social support and research on the issues of people with Usher syndrome. As part of the festival, a conference on Usher syndrome was held. We got to know each other, talked about ourselves, our problems, and how these problems are solved. You know, the English were so open, so natural, so frank about everything. It felt like they were used to sharing, talking about what they care about, about their experiences. And we sat uptight, tensed. The organizers took a lot of effort to make us, the Russians, talk. We could not and did not know how to talk about ourselves.

We also learned what they do in England to support the individuals with Usher syndrome, they even have their own organization. They gathered, had fun, communicated, and what’s most important received information about Usher syndrome and psychological help, they had services of interpreters. We could not even think of such a thing in those years.

I managed to attend this festival for one day, but it was enough to get excited about the idea of such an organization for the individuals who have Usher syndrome in Russia. I told Irina Zuckerman about this idea, she supported and introduced me to her colleagues in the laboratory of the Institute of Correctional Pedagogy — Tatyana Aleksandrovna Basilova and Irina Vladimirovna Salomatina. Then we began to look for like-minded people among the people with Usher.

We held the first panel discussion. Irina Salomatina started publishing the newsletter Usher-Forum. The first issue of the thin magazine was published in 1996 and turned out to be so interesting! For the first time, many of us learned about Usher syndrome, got acquainted with the life stories of others. Even before the official registration of the organization, we began to hold events. I still remember the first excursion to the Pushkin memorial flat, where I dusted all the exhibits. We were allowed to examine everything with our own hands! These excursions were arranged in advance: each of us had an interpreter. These were student volunteers, whom Irina and her assistant specially trained. Many of them have become excellent professionals working with the deafblind.

  More and more people with Usher came to our meetings. And in February 1998, we officially created our organization. I have often been asked: why do we need a separate organization for people with Usher, how do their problems differ from other deafblind people? Usher syndrome is one of the main causes of total loss of vision for the deaf, that is, it leads to total deafblindness. And a person needs more support, especially psychological one: they need special services, special events, they need help for families. And, of course, the sooner a deaf person with Usher syndrome begins to adapt, learn tactile sign language, new technical tools, and Braille, the easier it will be later… All this is easier to do if people are united.

Your main creative brainchild, the magazine Vash Sobesednik, appeared in 2003.  Tell us how you managed to make your childhood dream come true.

— When we created the organization Usher-Forum, and I took rehabilitation courses and learned to type on a typewriter by the blind method, I began to write many articles, first of all, for the newspaper Mir Gluhih and the magazine V Edinom Stroyu, as well as in the newsletter Usher-Forum.

But one day I was sent an English magazine Rainbow about the life of the deafblind in the UK. It was printed in Braille in English, and I couldn’t read it. But I sent the magazine to a blind friend, and soon he sent a translation of several articles. It was an extremely interesting magazine! So homely, with simple, even funny stories told by individuals with disabilities themselves. No problematic materials, but a lot of useful information and readers’ letters about their families, hobbies, friends and helpers. A kind, bright, positive publication. I told my friends Elena Volokh and Nina Solovtsova about it and suggested that we try to do something similar.  We had absolutely nothing but desire, no computer equipment, no publishing experience, and (most importantly!) funding.

And then I invited Irina Salomatina to talk.  Irina understood everything and supported us, promising to find volunteers, negotiate with the printing house and find money for publishing expenses.

And work has begun. My kitchen became an editorial office. We all came up with the names of notes and headings. When the work was finished, each received her own homework until the next week. Then Nina rewrote all the texts, and exactly on time I gave Irina Vladimirovna the first issue of our magazine. The volunteers typed, made the layout, and the issue was printed. That’s how our magazine appeared, and it is still alive!

  What a delight it was, how we were thanked for the first number! And readers began to write to us actively. And we, having corrected the letters, published them and put the author’s name. Do you know how it raised their self-esteem? Our readers-authors showed the magazine with their article to the relatives. Here, my article has been printed! So, someone is interested in me! When 5 years later there was no money for the release of the anniversary issue, I was rushing around Moscow in search of the necessary amount of money for the printing house and in despair wrote, “That’s it! I can’t do it anymore, we’re closing the magazine”. In response, pleading letters flew, “Do not close it, this is our bridge to each other!”

Now, many deafblind people have the Internet, but not everyone, and not everyone can use a computer. But even those who can always go online to continue to read the magazine, ask when the next issue will be published, and send interesting notes and links. The magazine is in demand!

 It is read in Moldova, Ukraine, and Kyrgyzstan, moreover, in Braille versions.  Some specialized universities have also signed up, of course, specialists read it, and parents of children who have vision and hearing loss.

In 2014, the Deafblind Support Foundation Con-nection was established, and now Vash Sobesednik is published with the support of the Foundation. Tell us about the magazine’s plans for 2021.

— Yes, with the advent of the Con-nection, the magazine began a new life. Thanks to the support of the Foundation, it has become prettier, up to date, and attractive. But it remained the same kind, positive interlocutor and friend for many.

In each issue, we talk about the activities of the Foundation, and since 2018 about the Association Con-sent, its projects and programs. This will be one of the main topics in 2021.

The pandemic has changed lives, leisure centers are not working at full capacity, there are almost no face-to-face events and meetings. It has become more difficult to get information from the regions. But we will still find it. In the next issue, we will tell you about the online forum of regional activists that took place in December.  

—  It is clear that your editorial work is successful. Can you personally be called a happy person?

— I am a modest person, I do not like loud words about myself. But, I think, yes, you can say so about me — a happy person! I had a happy childhood, wonderful parents who gave me everything they could: a good upbringing and education. I had a wonderful youth: meetings and communication with a huge circle of interesting people, hobbies, love for theater, cinema, travel. There were friends.

And even after a complete loss of hearing and vision, thanks to my friends I found myself in another business, found the meaning of life in new conditions. I had a lot of love, the warmth of a loyal, reliable person. And there is something that I have managed to find meaning, having lost everything: my magazine that gives me the strength to overcome difficulties.

Translated by Lera Dushkina

DBI Review, № 65, 2021

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