"Banner" 2011, No. 5

non-fiction

Irina Yasina

Disease history

about the author| Irina Yasina was born in 1964 in Moscow. In 1986 she graduated from the Faculty of Economics of Moscow State University. Lomonosov. Journalist by profession. Author of the book "A Man with Human Potentials", published in children's project Ludmila Ulitskaya.

Irina Yasina

Disease history

1999 - the end of my youth

How hard to get started! Although in conversations with close friends, with my daughter, with myself, I said all this many times. But the written text is different, I'm a journalist, I know. The truth is, it's quite easy to give an interview when you are asked questions. And you will see a transcript of what has been said, and you have to edit, cross out, add on. Written text requires more responsibility. In relation to itself, first of all.

When did she come? She is my illness, a being that has changed my life, not distorted, not robbed, but slowly and steadily knocked out old habits, established interests, changed tastes and attitudes: to home, to things, to love, to other people's weaknesses. Taking away one, always generously gave another.

The disease has several birthdays. The first is when you start to feel it. The second is when they make a diagnosis and you understand that it is forever. And the third - when you realize that it, your illness, has been with you for a very long time. You just got introduced recently.

But I really realized that I was not just getting tired quickly, but something was seriously wrong, in May 1999. All the symptoms appeared before: lead fatigue rolled in (but if you lay down, it quickly passed), the left leg tucked up too often (maybe the shoes were uncomfortable or the ligament pulled earlier, but now it comes out), the fingers went numb (you should have smoked less in your youth )... But in May 1999, when my parents and I went to London and Edinburgh, something big, global and unknown fell upon me. I was frightened and decided to surrender to the doctors upon my return. But other problems appeared at home, and I reached the doctors only in the middle of summer.

Doctors, in my then understanding, had an innate presumption of guilt. They definitely wanted to heal me, rob me and make me their slave. Therefore, when, after being stuffed with tranquilizers for a month, I was sent to the optometrist, I was terribly indignant.

To hell with all this medical examination! I check my myopia when I order new glasses with fashionable frames, I dusted.

And for some reason, a young oculist girl got worried and drove me to do a nuclear magnetic resonance.

An hour later, the result was ready. The doctors had no doubts - multiple sclerosis. I don't think they said those words to me at first. And if they did, I wouldn't be scared. I didn't know what it was.

Where I began to learn the details - I do not remember. There were no medical reference books in my house. I was afraid to talk about the terrible phrase with someone (I was afraid to pronounce it). At home there was a Big Encyclopedic Dictionary. Probably from there. The worst thing I could ever learn about the disease is that it is incurable. From there, about disability, difficulty walking, imbalance and a couple more paragraphs of nightmares. But the main thing is that it is incurable.

Can a young woman (thirty-five years old!), Relatively healthy, accustomed to not paying attention to her body, understand the meaning of this word at all? I didn’t particularly care about him, I didn’t like exercise, or a pool, or other fitness since childhood, but my body, sometimes playing pranks, did not prevent me from living an active life. Accustomed to success, dancing well, adoring off-road biking and high heels? I could read the description of the disease with horror, admit that such a thing could happen in principle - I could. To understand, and even more so to try on yourself - no! Moreover, while I was only tired and stumbling. No, not only! It's getting hard to walk down the stairs. Need a railing or someone's hand.

“I don’t remember where I began to learn the details ... At home there was a Big Encyclopedic Dictionary. Probably from there. The worst thing I could ever find out about the disease is that it is incurable. From there, about disability, walking difficulties, imbalance and more a couple of paragraphs of nightmares. But the main thing is that it is incurable."

The author of these lines is Irina Yasina, a member of the President's Council for the Development of Civil Society and Human Rights, a columnist for RIA Novosti, the daughter of Evgeny Yasin, the research director of the National Research University-Higher School of Economics. The lines are from her new autobiographical book, Case History.

A terrible diagnosis, melancholy and loneliness, the betrayal of her husband, a wheelchair... A difficult book. It's one thing to savor the details of fictitious novels and betrayals, but it's quite another to read about how the disease eats away at the usual life day after day ... "Case History" is an anti-gloss, where the incident is told without the help of an internal photoshop. How, with such a somersault of fate, to remain charming, cheerful, amazingly efficient, our conversation with Irina Yasina.

"Tell an anecdote obscene, in the end!"

Russian newspaper: Unfortunately, our usual reaction to great misfortune or serious illness is to drink bitter. Some people go to church for the same reasons. You have found some other way, or even your own religion, which helped to keep a very active person in yourself, not to sleep, not to sink, not to be sad. Was this optimistic attitude born out of spite of the diagnosis, or has it always been there?

Irina Yasina: This is what distinguishes any adult from a child, a teenager or an old man who has lost his mind. How can you start drinking? You have a family, you owe someone to be in shape, and this form is not necessarily physical, this also needs to be understood. A sense of responsibility, firstly, to the parents, and secondly, to the daughter, in this sequence, in fact, is my "anchor".

RG: It often happens that it is the most loving and close people who, unable to cope with the grief that has fallen on them, complicate the life of a sick person. We will not talk about the reaction of her husband yet, how did the parents react? Who helped whom?

Yasina: Although the parents are very close to each other, they love each other very much, but they behaved differently. I knew that my mother would cry and suffer. Not with me, of course, she is a reserved person. But I realized that it is much harder for her than for me. You know that feeling a mother gets when a baby just coughs? You immediately forget about all your affairs and think only about this cough. And this is such a big problem. Mom, in turn, realized that a person with my character cannot simply be advised - lie down, and everything will pass. Moreover, we knew that it would not work.

And then any adult young man is still stronger than the elderly. Even if he is sick. Just because he still has some time ahead to correct mistakes, to take care of something. And the old people have very little time. Therefore, they are more vulnerable. There should be mutual guardianship, not in the sense of "uti-way", but somewhere to remain silent, somewhere to shake hands, somewhere to cry together, somewhere to say: okay, we'll break through. To tell an obscene anecdote in the end.

RG: Have you ever had to lie to your parents, to hide something?

Yasina: Primarily, yes. I was embarrassed by the disease, pretended that everything was fine with me. Mentally, it was the hardest time.

RG: You write that you were able to collect yourself, to come into balance in six months.

Yasina: No, longer. Six months was "completely on guard" when I did not want to leave the house. And the feeling of the future appeared, some kind of life began, probably in two years. At some point, I realized that one and a half to two years is the period of adaptation that any person needs after global changes take place. I talked with some of my acquaintances who were forced to immigrate. So the sense of temporality passes somewhere through this period. Then people, relatively speaking, unpack their suitcases. And it's the same with illness.

"Dad, what if I were your wife?" - "I would have killed you!"

RG: Are you disappointed by your friends?

Yasina: Yes, disappointed. Especially those who are successful. I got the feeling that many of them simply cast away someone else's grief, as if it were contagious. They may not even say it. But my youthful friends have practically all disappeared. But what new ones have appeared! It's just happiness.

RG: And in psychological trainings It often sounds like failure is contagious...

Yasina: I know for sure it's not. Moreover, I can say a paradoxical thing: I'm just happy that something happened in my life that led me to meet the people with whom I communicate now.

RG: At the onset of the illness, you were 35 years old and married. Here, write in the "History of the disease": "... After a few nights of my tantrums with shouts:" What will happen to me! "My husband said that he wants to live alone, but he will always help me financially ..." The men who surrounded you , apparently, turned out to be not a very strong sex?

Yasina: My husband left, but I have a dad, who for me is the absolute ideal of a man, so I cannot be disappointed in men.

RG: When a woman has such a father, it is difficult for her to find a spouse who could match ...

Yasina: Yes, there is such a problem. One of my friends, an aged woman who admired her own father all her life, once said: "You and I are women hit by our own fathers." And dad? He is wonderful, strong, humorous, generous, cheerful. Of course, finding "something similar" is very difficult. I had a wonderful conversation with my father. Something was especially bad for me, he wanted to support me, began to praise, say how wonderful I am, what a comrade-in-arms, fighting girlfriend and stuff like that. And I asked: "Dad, what if I were your wife?" - "I would have killed you!" Dad answered candidly.

Men are weak, it's true. There are wonderful people among them, but I wish there were more of them. Women, as my story has shown, are more frank, kinder, more resolute. They are easier to help, easier to donate. Money, time, energy, yourself. I am for matriarchy.

RG: But the nature of male betrayal, how it manifested itself in your case, where does it take its roots from?

Yasina: This is a very deep problem. Boys are raised by mothers who inspire them: dear, think only of yourself, do not pay attention to anyone, the main thing is that you succeed. Their mothers love them so much that they are unable to love and respect even their own wives.

RG: But they fall in love because they themselves were little loved ...

Yasina: Yes, such a vicious circle.

"Do you want me to sit at home and look my husband in the mouth?"

RG: And the claims of men to modern careerists are legal?

Yasina: The role of a woman in society is changing, so the question is quite legitimate: “If you want me to stay at home, give birth to four children, cook dinner and look into my husband’s mouth, then why am I a doctor of philosophy? No, there are happy wives who manage to combine home and work, but this is very rare.Men brought up by their mothers in the spirit that "a woman should serve the family."But, in fact, we have equal rights.Of course, we are not equal, but a woman can achieve the same , which is a man.

RG: But if everyone pulls the blanket over himself, if traditional family roles are so shifted, is happiness in marriage hardly possible?

Yasina: I know several happy families in which women work hard and earn well, and men, let's say, are on the hook. This does not prevent them from raising happy children and living together for 25 years. Happiness is generally possible in any situation. Who earns money is an external question. What is more important is what happens inside human relations: whether people are able to adapt, adapt, change. If you live your whole life with your youthful ideal of happiness, nothing good will come of it.

RG: Why, is it bad not to abandon the ideals of youth?

Yasina: This ideal is beautiful, but it is primitive and the same for everyone. And life is full of surprises. Well, we will rest and say, happiness is this, and not another: happiness, when I can dance all night, walk all day in high heels or ride a bicycle 20 kilometers. And if I can’t do all this, then there is no happiness anymore, and in FIG I have such a life? What nonsense. It's just that happiness is really very diverse. You just have to give yourself the trouble to adjust.

"For me, the 90s is a time of endless creation"

RG: A beautiful woman in a wheelchair is an "outlandish little animal" on our streets. Have you ever seen curious looks on yourself?

Yasina: Of course it happened. It hurts at first, but then you get used to it. You have to smile. A smile is an absolute weapon. There is no other way out. Well, what can you do, there is a person without an arm, without a leg, but there is without a soul. You can attach a prosthetic leg, but not a prosthetic soul.

RG: Ira, you and I studied at the university almost simultaneously, we are one generation, which, after graduating from high school, immediately plunged into the 1990s. Several people didn’t make it out of my course: someone was killed, someone drank himself. And for you, is this a glorious or dashing time?

Yasina: There are probably the same number of people strong and weak, confused and collected, in any generation. For me, the 90s is a time of endless creation, creativity, growth. What we have experienced is not for everyone. I don’t even remember our student youth very well, because then there were the 90s: an incredible volcano, a cataclysm of change.

I don’t suffer from amnesia, I remember very well the Soviet times with queues and a ban on reading Doctor Zhivago in the metro ... I remember how in the seventh grade I saw a photograph of the Chambord castle on the Loire near Paris - shortly before that, like all children, I read novels Dumas "Three Musketeers", "Queen Margot", was impressed by the description of the romantic Middle Ages. And now I look at the castle and understand that I will never see it. And at the age of 13, we should dream and believe that the world is open to us. Instead, we know that if you do not join the party, then you will definitely not see anything in the world. And if you join, maybe you will go on an excursion as part of an organized delegation. I had no illusions about the beauty of the Soviet Union. And now no. Moreover, it has become even smaller. Because I learned more. The 1990s are a great time. Very heavy, but creative. What we experienced in 10 years, England experienced for centuries, remember, in textbooks - "the period of primitive accumulation of capital, fencing: the 15th-18th centuries."

RG: Have you ever wanted to leave the country?

Yasina: Once I even tried to do it: in the 90th year, my then husband and I left to study in America. In August 1991 they were in Moscow. After that, I returned to the USA, where I worked, collapsed on my knees in front of my boss and begged: "Please let me go home! I want to build a new life." Americans are patriots best sense this word, so I was escorted like a heroine.

There were moments when it was quite easy to leave. It didn't work out, and I don't regret it at all. Firstly, I am a person of the Russian language. I can't express myself in any other language: neither English nor Polish, although I know these languages. Needed where was born. Why am I somewhere else? And further. I love Russian nature very much. There is a city apartment, it is exactly five minutes from my work, but I drive every day for an hour and a half to a country house to see my trees, flowers, squirrels, cats, hares - everything is there. Living in nature, you feel the change of seasons. The leaves begin to turn yellow, the buds appear. I can't do without it.

"I accidentally found out that I was baptized at the age of two"

RG: You are a smart person and will not be offended by the question: is society always to blame for a misunderstanding of people with disabilities? Do you need indulgence, attitude as if you were weak?

Yasina: On the one hand, of course, I am weak, I need help. And I have to ask for it...

RG: But we don't know how to ask with dignity... Have you asked God for help?

Yasina: I am a non-religious person, I never was, I grew up in an absolutely atheistic family. I accidentally found out that I was baptized at the age of two by my grandmother and godmother. Everything was like that. Even before the illness, in 1996, my daughter and I almost got into a car accident. I was driving, the child was sleeping, winter, Moscow region, white snow fell on thin ice, and the fool Ira wanted to switch the music ... We skidded, it began to turn, if there were oncoming cars, it would have ended badly, but it was night, there was no one on the highway, we were thrown sideways into a snowdrift, the car stalled, and we stopped wonderfully ... A "nine" braked nearby, three shaved fellows got out of it, I once again said goodbye to life, and the guys kindly asked: "Girl , push you out?" And pushed out. In the morning I called my aunt: "Aunt Gal, go to church for me, light a candle. The Lord God saved me twice in one evening." She: "Why don't you go yourself? Go. We baptized you with your grandmother ..." - in general, she told me everything. I ask, do the parents know? She with such a Vladimir accent: "Why do they, the Communists, know?" After it turned out that I was a baptized person, I immediately baptized my daughter - not for religious reasons, but for reasons of historical continuity: if all my ancestors were baptized for hundreds of years, then I cannot take responsibility and interrupt this line . Well, if Varya decides that she will not baptize her children, this is her choice.

I tried to contact one of the Moscow churches near my house. The aunts, very concerned about cleaning the temple, simply drove me away, no one was interested in what the young confused and frightened woman was looking for, why she was asking about Panteleimon the healer. However, I still had a happy meeting: in 2003, I met my father Georgy Chistyakov. From him came a light that was impossible to simply transfer, you feel it with your skin, but, unfortunately, he died very quickly ... I was ready to go to him and talk about my trouble, and I'm sure he would have heard me.

"Elite" is a livestock term"

RG: Irina, why did you decide to write about yourself with such a degree of frankness?

Yasina: First, I was 100% sure that it was necessary. The number of unhealthy people with sick relatives and friends is gigantic. In addition, there are healthy people who think about the soul.

My mother was very worried about my story: that I open up so much. No, we love gossip, especially when they concern glamorous characters. But speaking frankly about yourself is not our style. And he is very close to me. I didn't make an effort. Then, when the story was already published, my mother told me: "You were right, but you are a man of the new time, you understand that people will help, and I expect something else, because I grew up in Stalin's times." My grandmother, my mother's mother, lost her husband in the war. In the first weeks of the war, he went missing. She remained a 30-year-old widow with two children, with three years of education, a girl from the village. She sewed on the neighbors to feed the kids. They “knocked” on her, sent a financial inspector. Grandmother was afraid - the neighbors would see that she was working at home, they would notice some threads, pieces of fabric, so she forbade her mother to invite guests to her place, she asked: "Lidochka, don't open the door for anyone!" Hence the habit of secrecy. To be closed meant to be protected. But I have a different approach. As long as you are open, you are free. As long as you are free, you are protected. I am not afraid of the future, despite the fact that science still does not know how to cure my illness.

"As long as you are unhappy with life, it passes!"

RG: About the grandfather, who went missing, so nothing was found out?

Yasina: You will not believe it, but just on the eve of the 70th anniversary of the Great Patriotic War, we found his grave. For the first time in my life, I not only felt the beginning of the war with my soul, I was carried away, I wanted to cry, I could not think about anything. He was buried near Hanover, on the territory of the Bergen-Belsen concentration camp, where he ended up in November 1941. And on January 23, 1942, at the age of 35, he died of sepsis. Apparently he was injured. Grandfather was taken prisoner on July 12, having been called up on June 26. They just drove with their regiment to the city of Sebezh, Pskov region, and were surrounded. I imagined how his grandmother saw him off, how she cried. She left a 7-year-old son and a 2-year-old daughter, my mother.

The grandfather, who was a legend, suddenly became alive, warm, 35 years old. In the autumn we will go to Hannover, take a handful of earth from the cemetery and bury it in my grandmother's grave, write: "Fedulov Alexei Stepanovich, born then, died then."

RG: How did you find out the details about the death of Alexei Fedulov?

Yasina:

Through Memorial. Americans or British handed over to Soviet Union all concentration camp archives back in 1953. And no one told the widow that her husband was dead. Although the documents contained his home address, the surname, first name and patronymic of his grandmother, the names of his father and mother, the place of birth was the village of Dobrynskoye, Vladimir Region. And grandmother until the end of her days, until her death in 1988, was waiting for her Alyosha. Nobody threw a note in the mailbox, it cost two kopecks to send a letter! But that's okay, the main thing is that the grandfather was found.

RG: You wrote in the book that you are happy now. Few people can say this about themselves.

Yasina: We love to snuggle. Meanwhile, as my dad says, as long as you are unhappy with life, it passes. This is what I repeat to myself all the time. Often it happens - you feel bad, trouble at work, you don’t know what to do, someone betrays, someone doesn’t call - life.

key question

Russian newspaper: Our society hardly perceives "others". The lack of a comfortable environment for the life of people with disabilities - what is it, if not an attempt to remove dissimilar away from sight, so that they sit at home, do not upset the townsfolk ...

Irina Yasina: Everything is changing for the better. We just have such a problem: we compare ourselves with the best examples. Let's say we look at America and envy. But one of my friends, having had polio at the age of two, could not go to school, because in Washington, the capital of the USA, in the mid-50s there was not a single school where a wheelchair could enter. Her mother went to demonstrations with her friends, and they got two schools equipped with lifts. Immediately, as in America, we will not have, but everything is changing very quickly. Progress, as they say, is evident. And not only in Moscow. Recently I was in Plyos, Ivanovo region: no one looks at you there as an exotic creature, everyone helps, everyone is kind. A ramp is being built at the railway station in Vladimir. And five years ago, at Sheremetyevo-2 International Airport, I was on strike in order to be given a special device with which a person in a wheelchair could board an aircraft. The flight was delayed, but I got my way.

I must say that I was supported by everyone who was around. I also learned to ask for help. I constantly ask my colleagues, girlfriends. At work, everyone helps me, they know what needs to be pushed aside so that the wheelchair can pass, how to put the leg so that there are no spastic reactions. It's not shameful. And the people who helped you feel good. People love to be nice. It is unpleasant for them to know that they are disorganized, callous.

But disabled people should be able to ask, not be ashamed of it. Sometimes they complain to me: we sit at home, we don’t go out anywhere, no one helps us. And I say: hello, how do people know that you need help? I know such cases when a disabled person is comfortable from the fact that no one touches him. No one will be forced. A person with a problem should at least articulate their problem. Say: I'm not happy with this, come up with something, help me come up with ...

There is one common and dubious truth, which was formulated in the twentieth century by the great proletarian writer Maxim Gorky - "Man is born for happiness, like a bird for flight." A seductive thought, with great and grave consequences: when there is no happiness in life, but, on the contrary, difficulties, misfortunes, cruel trials and a lot of joyless work are offered, a person experiences great disappointment. I much more like the idea that a person has the potential to become happy. It is connected with overcoming the difficulties and complexities of life, with opposition to misfortunes and unchosen circumstances. Let us leave aside the very content of this indefinite concept - happiness. I have long ago come to the conclusion that the moments of happiness that every person sometimes experiences do not make him happy at all. Each of us goes through his own path from birth to death, and within each human life there is a high task. Some people are doing great, realizing their potential, others are toiling and yearning, avoiding or failing to cope with their unique life task.

Ira Yasina is one of those people who fulfills her task, despite difficult circumstances that would interfere with another person, unsettle, turn into an egocentric, whose entire life is reduced to discontent, complaints and depression.

Gone are the days when we chose our teachers among older, highly educated, outstanding people. Today, our friends turn out to be the best teachers, and not necessarily the oldest, and not necessarily the most authoritative. Ira Yasina is my friend. I appreciate those qualities that have always been characteristic of her: intelligence, honesty, high professionalism.

She is younger than me in age, but older in experience. The test that befell her, a severe and so far incurable illness, brought up an outstanding personality from a good, but ordinary woman. It was the disease that opened in her soul such reserves of courage and courage that today she has become a teacher for many people, healthy and sick. In difficult moments of my life, I turn my gaze to her. And it's not just the war she wages so successfully against her disease. She knows how to look into the eyes of fear and defeats it. A bad mood, fatigue, self-pity, maybe despair wins. I can only guess about this. And I would like to learn it too. The proposed book is a textbook for those who find it difficult, who do not yet know how to cope with the cruel blows of life, and I am grateful to Ira for her sincerity, for her high ruthlessness towards herself and mercy to others.

Ludmila Ulitskaya

When my father turned 70, my friend called me with congratulations and said: “You, Yasina, don’t go to the casino. You've been lucky once in your life."

Lucky? Certainly lucky. This is for you, for everyone, he is Evgeny Grigorievich, but for me - a folder, daddy.

I never called him father. Father is not an affectionate word, almost harsh. And dad was and is always warm and affectionate.

When did I discover that I have such a dad? Probably at the time from which I remember myself more or less coherently. That is, from the age of eight. Before this, memories are like flashes, little legends, either it was or it wasn’t. For example, there is a family legend about how Yasin raised me by locking me in the toilet. Mom says that we were walking in the park and, at the age of three, I passionately wanted a balloon. There were no balls, of course. I moaned for a while, and then lay down on the ground, apparently trying to visually portray the legitimacy and validity of my claims. The argument did not convince the pope. Legend has it that he grabbed me in his arms and rushed home in bounds. Where he locked me screaming in the toilet. And turned off the light. But I don't remember it. My first distinct, broken down by day, memory is the summer of 1972, we are at our grandfather's dacha near Odessa, dad in shorts, carries melons-collective farmers in a backpack from Zatoka. He teaches me to swim, saves me from huge jellyfish, draws funny pictures about Indians on the plank wall of the toilet in the area. Teaches me how to play badminton. And we also go to the opposite bank of the Dniester, to Belgorod-Dnestrovsky, the Akkerman fortress in Suvorov times, and dad gets nervous when we constantly stumble upon heaps of human feces under each heroic loophole.

Dad remembers himself from about the same age, from the age of seven. The war began, and the children's picture memory “I remember how my mother and I took pictures in the yard” turned into a connected line of hasty evacuation from Odessa, loading onto a train in Znamenka, bombing near Dnepropetrovsk. Dad remembers that he got up from the floor and stood near the window of the car and saw the low-flying flight of the Messerschmitts, while mom and other people were hiding under the shelves at that time. Then there was life in Northern Kazakhstan, first in Aktobe, and then in Akmolinsk, then Upper Ufaley in the Urals. Grandfather, Grigory Lvovich, worked for railway, was engaged, as they would say now, in supplying the front. When the front began to move west, dad began to move west. He remembers the completely destroyed, just liberated Kharkov and the Lozovaya station, where they lived for almost a year in hunger and in lice. Dad had typhus.

His memory of the famine is very strong to this day. In the summer of 1942, when they lived in Kazakhstan, his mother sent him to, as they would now say, “pioneer camp” in the village of Shchuchye. In the morning, the children went for mushrooms, then they boiled the mushrooms, and this was their food for the day. Maybe since then Yasin has left nothing on the plate and eats everything with bread. Even porridge and pasta.

In the family archive, one of the favorite photographs from around the time when we became friends with dad. I am eight years old, and Yasin, respectively, is about forty. Dad with a beautiful beard. Apparently, that's why I liked bearded men all my life. These are those years of stagnation, talking about which, the father will say: “It seemed to me that they had already buried me.”

What was such a restless and thinking person like dad to do in the sluggish seventies? I remember that he worked hard. He came home from work late, and on weekends he always wrote something at the desk in his parents' room. In his office, combined with their bedroom. When dad worked, the door to the parent's room was closed, my grandmother walked quietly around the house and cursed at me when I made noise. The pen with which Yasin wrote was strictly forbidden to touch. It was a Chinese fountain pen, the nib of which was sharply beveled to the right. It seemed to me uncomfortable to write with it, but Yasin claimed that he got inspiration from this green pen. Then Yasin smoked. I don't remember when he switched from cigarettes to pipes, but I always associate the smell of sweet pipe tobacco with my dad's workplace.

Dad came home from work, had dinner, and we went for a walk. Yasin generally always kept himself in good physical shape. I did exercises, ran, at one time even swam. Walking with dad after his work was incredibly interesting - he always had something to say. Not about politics and economics, I was not interested then, but about musketeers, pirates, great geographical discoveries and historical battles - that's it! Interest in history and geography has always lived in him. Once in Odessa, he wanted to enter the geographical faculty of the university, but because of the fifth point, he did not dare. Above my child's bed there was always a geographical map. Therefore, I know the geography of the southern regions of the USSR especially well. Tajik Khorog and Turkmen Kushka were right in front of my nose. Well, if you sit in bed, then here it is, Transbaikalia.

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Irina Yasina
Disease history. Trying to be happy

Happy Ira

There is one common and dubious truth, which was formulated in the twentieth century by the great proletarian writer Maxim Gorky - "Man is born for happiness, like a bird for flight." A seductive thought, with great and grave consequences: when there is no happiness in life, but, on the contrary, difficulties, misfortunes, cruel trials and a lot of joyless work are offered, a person experiences great disappointment. I much more like the idea that a person has the potential to become happy. It is connected with overcoming the difficulties and complexities of life, with opposition to misfortunes and unchosen circumstances. Let us leave aside the very content of this indefinite concept - happiness. I have long ago come to the conclusion that the moments of happiness that every person sometimes experiences do not make him happy at all. Each of us goes through his own path from birth to death, and within each human life there is a high task. Some people are doing great, realizing their potential, others are toiling and yearning, avoiding or failing to cope with their unique life task.

Ira Yasina is one of those people who fulfills her task, despite difficult circumstances that would interfere with another person, unsettle, turn into an egocentric, whose entire life is reduced to discontent, complaints and depression.

Gone are the days when we chose our teachers among older, highly educated, outstanding people. Today, our friends turn out to be the best teachers, and not necessarily the oldest, and not necessarily the most authoritative. Ira Yasina is my friend. I appreciate those qualities that have always been characteristic of her: intelligence, honesty, high professionalism.

She is younger than me in age, but older in experience. The test that befell her, a severe and so far incurable illness, brought up an outstanding personality from a good, but ordinary woman. It was the disease that opened in her soul such reserves of courage and courage that today she has become a teacher for many people, healthy and sick. In difficult moments of my life, I turn my gaze to her. And it's not just the war she wages so successfully against her disease. She knows how to look into the eyes of fear and defeats it. A bad mood, fatigue, self-pity, maybe despair wins. I can only guess about this. And I would like to learn it too. The proposed book is a textbook for those who find it difficult, who do not yet know how to cope with the cruel blows of life, and I am grateful to Ira for her sincerity, for her high ruthlessness towards herself and mercy to others.

Ludmila Ulitskaya

dedication

I"ve loved, I"ve laughed and cried.
I "ve had my fill; my share of losing.
And now, as tears subside,
I find it all so amusing. 1
"I I loved, I laughed, I cried, I received in full and experienced many defeats, but now that the tears have dried, I am pleased to remember this too ” (English)- a line from a song my way Frank Sinatra with lyrics by Paul Anck.

When my father turned 70, my friend called me with congratulations and said: “You, Yasina, don’t go to the casino. You've been lucky once in your life."

Lucky? Certainly lucky. This is for you, for everyone, he is Evgeny Grigorievich, but for me - a folder, daddy.

I never called him father. Father is not an affectionate word, almost harsh. And dad was and is always warm and affectionate.

When did I discover that I have such a dad? Probably at the time from which I remember myself more or less coherently. That is, from the age of eight. Before this, memories are like flashes, little legends, either it was or it wasn’t. For example, there is a family legend about how Yasin raised me by locking me in the toilet. Mom says that we were walking in the park and, at the age of three, I passionately wanted a balloon. There were no balls, of course. I moaned for a while, and then lay down on the ground, apparently trying to visually portray the legitimacy and validity of my claims. The argument did not convince the pope. Legend has it that he grabbed me in his arms and rushed home in bounds. Where he locked me screaming in the toilet. And turned off the light. But I don't remember it. My first distinct, broken down by day, memory is the summer of 1972, we are at our grandfather's dacha near Odessa, dad in shorts, carries melons-collective farmers in a backpack from Zatoka. He teaches me to swim, saves me from huge jellyfish, draws funny pictures about Indians on the plank wall of the toilet in the area. Teaches me how to play badminton. And we also go to the opposite bank of the Dniester, to Belgorod-Dnestrovsky, the Akkerman fortress in Suvorov times, and dad gets nervous when we constantly stumble upon heaps of human feces under each heroic loophole.

Dad remembers himself from about the same age, from the age of seven. The war began, and the children's picture memory “I remember how my mother and I took pictures in the yard” turned into a connected line of hasty evacuation from Odessa, loading onto a train in Znamenka, bombing near Dnepropetrovsk. Dad remembers that he got up from the floor and stood near the window of the car and saw the low-flying flight of the Messerschmitts, while mom and other people were hiding under the shelves at that time. Then there was life in Northern Kazakhstan, first in Aktobe, and then in Akmolinsk, then Upper Ufaley in the Urals. Grandfather, Grigory Lvovich, worked on the railway, was engaged, as they would say now, in supplying the front. When the front began to move west, dad began to move west. He remembers the completely destroyed, just liberated Kharkov and the Lozovaya station, where they lived for almost a year in hunger and in lice. Dad had typhus.

His memory of the famine is very strong to this day. In the summer of 1942, when they lived in Kazakhstan, his mother sent him to, as they would now say, “pioneer camp” in the village of Shchuchye. In the morning, the children went for mushrooms, then they boiled the mushrooms, and this was their food for the day. Maybe since then Yasin has left nothing on the plate and eats everything with bread. Even porridge and pasta.

In the family archive, one of the favorite photographs from around the time when we became friends with dad. I am eight years old, and Yasin, respectively, is about forty. Dad with a beautiful beard. Apparently, that's why I liked bearded men all my life. These are those years of stagnation, talking about which, the father will say: “It seemed to me that they had already buried me.”

What was such a restless and thinking person like dad to do in the sluggish seventies? I remember that he worked hard. He came home from work late, and on weekends he always wrote something at the desk in his parents' room. In his office, combined with their bedroom. When dad worked, the door to the parent's room was closed, my grandmother walked quietly around the house and cursed at me when I made noise. The pen with which Yasin wrote was strictly forbidden to touch. It was a Chinese fountain pen, the nib of which was sharply beveled to the right. It seemed to me uncomfortable to write with it, but Yasin claimed that he got inspiration from this green pen. Then Yasin smoked. I don't remember when he switched from cigarettes to pipes, but I always associate the smell of sweet pipe tobacco with my dad's workplace.

Dad came home from work, had dinner, and we went for a walk. Yasin generally always kept himself in good physical shape. I did exercises, ran, at one time even swam. Walking with dad after his work was incredibly interesting - he always had something to say. Not about politics and economics, I was not interested then, but about musketeers, pirates, great geographical discoveries and historical battles - that's it! Interest in history and geography has always lived in him. Once in Odessa, he wanted to enter the geographical faculty of the university, but because of the fifth point, he did not dare. Above my child's bed there was always a geographical map. Therefore, I know the geography of the southern regions of the USSR especially well. Tajik Khorog and Turkmen Kushka were right in front of my nose. Well, if you sit in bed, then here it is, Transbaikalia.

We also have a collection. Old folders with yellowed sheets, on which black-and-white photographs of cities and monuments of inaccessible foreign countries are pasted, stand in a closet. Dad subscribed to “Around the World”, Czech and Polish travel magazines, cut out pictures with scissors, came up with captions, formed folders. Czechoslovakia, East Germany, Bulgaria, and then the churches of France, Ravenna, the Great Wall of China, Indian Ajarta and Madagascar. He went everywhere without leaving his room. And I'm with him. My father taught me to distinguish Romanesque from Gothic, to draw on the map the travel routes of Bartolomeo Dias and Vasco da Gama. We played cities, for hours, in the evenings, and it was indecent not to know what the capital of Antananarivo was.

I didn't know what my dad did. Only by the spines of the books with which the shelving, hand-knitted by one of the distant relatives, was crammed, could she understand - statistics, automated control systems, economics. No, not the economy - a planned economy. The names of the authors were also very beautiful - Kantorovich, Urlanis. Volumes of the collected works of Marx and Engels hung from the top shelves.

When I began to understand that dad is conspicuous and significant person? Definitely not before I went to university. Of course, in our entrance to Perovo, everyone respected him. He didn't drink, he regularly picked up neighbors who were overbooked and carried them to their apartments, and he never lent them a drink. And at the university they suddenly began to ask me - what are you, the daughter of Evgeny Grigorievich? Ah, then it's understandable.

Which is understandable? It is clear that they will evaluate me somehow especially, maybe more condescendingly, or maybe vice versa. I came across at the faculty with both. Mathematical departments, in the disciplines of which I clearly did not shine, could give me a decent mark for “hereditary knowledge of subjects”, and the fighters of the ideological front from the department of political economy wanted to find fault, but could not. My humanitarian brain remembered all the socialist crap from one reading. True, after the session, everything cheerfully flew out of my head.

That is, dad was a friend and brother for one part of the faculty, and an adversary for another. Then I asked him many times: at what point did he stop believing in communism? Did you believe it? I could not help but believe, both by upbringing and by education. He always said that the point of no return was 1968, the Soviet invasion of Czechoslovakia. In 1968, my dad learned Czech to read their newspapers, and in 1980, Polish.

Then there was my crazy youth. My father and I were still close. But it's not like that anymore. My loves, growing up, independence without wisdom, marriage alienated me from him. At the same time, life in the country became more and more interesting. And dad is more and more interesting to listen to.

I had no chance to dodge and not be his supporter - a supporter of freedom, the market and the minimum presence of the state in the life of society and every person. He convinces you when you listen to him on the radio, but at home he also talks about everything about this ...

When the folder was a minister, and I was a journalist, I never pestered him, trying to find out what a journalist was not supposed to know ... We never even agreed on this - it was assumed by itself. Like what he said to me as a child: “Do not dishonor the name!”

I tried to. Sometimes I felt embarrassed. All my success was due to the fact that Yasin helped. It's good that I never became an economist. To be an economist with such a name and, to put it mildly, a complete inability to do science, would be ridiculous. I have other advantages: I quickly (but superficially) grasp, I can in simple words explain. But to sit and think for more than a minute... And he - for hours, on abstract topics... I bow.

- Well, of course, with such and such a father ...

Like, you can be a complete fool, and still - success is inevitable.

No matter how!

Dad is that rare person who, having left power, felt relieved. Engaged in university. He loves his HSE - higher school an economy nurtured and inspired by him...

And that's how you all know him. And I hope you do. And I just love it to some kind of quiet purr, to a fade. And my story is dedicated to my father, my teacher and judge.

1999 - the end of my youth

How hard to get started! Although in conversations with close friends, with my daughter, with myself, I said all this many times. But the written text is different, I am a journalist, I know. Really, it's quite easy to give interviews when you're asked questions. And you look at the transcript of what was said, and you have to edit, cross out, add on. Written text requires more responsibility. In front of you first.

When did she come? She is my illness, a being that changed my life, didn’t distort, didn’t steal, but slowly and steadily knocked out old habits, established interests, changed tastes and attitudes towards home, things, love, other people’s weaknesses. Taking away one, always generously gave another.

The disease has several birthdays. The first is when you start to feel it. The second is when they make a diagnosis and you understand that it is forever. And the third - when you realize that it, your illness, has been with you for a very long time. You just got introduced recently.

But in reality, I realized that not only did I quickly get tired, but something was seriously wrong, in May 1999. All the symptoms appeared before: lead fatigue rolled in (but if you lie down, it quickly passed), the left leg tucked up too often (maybe the shoes were uncomfortable or the ligament pulled earlier, but now it got out), the fingers went numb (you should have smoked less in your youth ) ... But in May 1999, when my parents and I went to London and Edinburgh, something big, global and unknown fell upon me. I was frightened and decided to surrender to the doctors upon my return. But other problems appeared at home, and I reached the doctors only in the middle of summer.

Doctors, in my then understanding, had an innate presumption of guilt. They definitely wanted to heal me, rob me and make me their slave. They, it must be said, were identical to such an attitude towards themselves. Without laughing, I cannot remember how, among other experiments, I was sent to be treated with hypnosis. I am generally a slightly suggestible person, which is usually clear from a simple conversation. And when they try to hypnotize you to the accompaniment of a drill working in the corridor!

According to all this, when, after a month of stuffing with tranquilizers, I was sent to an ophthalmologist, I was terribly indignant.

“Fuck all this medical checkup!” I check my myopia when I order new glasses with fashionable frames, I dusted.

I remember this almost hysterical about my vision test (there were even tears!) Very well. Summer, beauty, no premonitions, it seems.

And for some reason, a young oculist girl got worried and drove me to do a nuclear magnetic resonance.

An hour later, the result was ready. The doctors had no doubts - multiple sclerosis. I don't think they said those words to me at first. And if they did, I wouldn't be scared. I didn't know what it was. I remember some vague words like “shadows in the brain”. Why all of a sudden?

How did I get the details? medical literature didn't happen in my house. I was afraid to talk about the terrible phrase with anyone (I was afraid to pronounce it). Home was big encyclopedic Dictionary. His mother-in-law liked to use it when guessing crossword puzzles. Probably from there. I also remember that I was sitting in the office of another doctor, and she left. Like a thief, I quickly pulled a neurological reference book off the shelf. Secretly. I read it. The doctor is back. I didn't ask any questions, as if if I didn't say the word aloud, it wouldn't become a reality. The worst thing I could ever learn about the disease is that it is incurable. And also about disability, difficulty walking, imbalance and a couple more paragraphs of nightmares. But the main thing is that it is incurable.

Can a young woman (35 years old!), Relatively healthy, accustomed to not paying attention to her body, understand the meaning of this word at all? I didn’t really care about him, I didn’t like any exercise-fitness pool since childhood, and the body, sometimes playing pranks, did not prevent me from living an active life. Accustomed to success, dancing well, adoring off-road biking and high heels? I could read the description of the disease with horror, I could admit that such a thing could happen in principle - I could. To understand, and even more so to try on yourself - no! Moreover, while I was only tired and stumbling. No, not only! It's getting hard to walk down the stairs. Need a railing or someone's hand.

There is a particular problem with the hand. At the time I read the word "incurable" I had a husband. We lived from our student days, experienced a lot of things, worked a lot (after all, the dashing 90s are our time!), Enjoyed life a lot. He was cheerful, witty, generous, not without complexes and strange habits, but who pays attention to them when you are next to students? As we ourselves joked with him, “we were together even under communism ...”.

The problem is that the husband liked to walk. You know this student joke: “What is a symposium? Drunken orgy involving women.” Exactly. I guessed, of course. But he violated the rules of the hostel once in all the years (he came home in the morning, not in the evening), he lied masterfully, and I, apparently, wanted to believe. For which she paid. After a few nights of my tantrums with cries of “What will happen to me ?!” my husband said that he wanted to live alone, but he would always help me financially.

What it means to “live alone” is understandable even to such a gullible fool as I am. The questions that life posed to me became more and more existential.

What, my life is ending? You can still come to terms with this. Still, I read Remarque in my youth. Instead of fighting the disease in a mountain resort for years, Lilian buys chic dresses from Balenciaga and enjoys life for several months. And then back to the sanatorium, but not for long. What lay ahead of me frightened me more than death. Helplessness. Addiction. Loneliness.

I was scared to wake up. Before waking up and even in the first seconds after it, there was a faint hope that I was dreaming all this. For the first six months, I could not really work, read, or perceive others adequately. I didn’t have an exciting job then - after the Central Bank, from which I left immediately after the August 1998 default, everything was boring. There were not as many job offers as I would like, but I earned money. It was also not possible to perceive cinema or theater.

I understood that for my daughter the atmosphere in the house became simply terrible. Dad left. Mom cries all the time and does not communicate with anyone. In order to somehow protect a ten-year-old girl from what is happening, I got a puppy. The funny little pug we named Leo was a great help. A puppy is a puppy - he plays, gnaws at my flowers in pots, blows on the floor, learns to raise his hind leg. For my daughter, he became a great partner. Leo helped her not even remember those most terrible days for me.

I don't really remember that time. Did I look for someone to blame? Wanted, of course. The husband and his young girlfriend were the first to turn up, about whom, of course, they told me in detail. Katya, lives in Plyushchikha, twenty-two years old. She, however, did not hide - for example, she came to congratulate her husband on his birthday, when we were sitting at the table with the guests. With a bouquet. I kicked her out. She herself, however, after that, too, did not stay too long at the festive table. I asked my husband's friend, who was once a witness at our wedding, to walk me through three streets from the restaurant home.

- Well, guys, you give, - Seryoga muttered.

You? I didn't agree with the plural.

My husband liked the behavior of his girlfriend, such a struggle for him, very much.

With my head, I understood that although they both behave like a pig, they are still not to blame for the fact that I got sick. And the heart ... was torn to pieces. I was 35 and the woman in me was dying. It seemed to me that my husband left because of my illness. He's just unlucky, stupid. His next novel and my illness just coincided in time. Well, yes, and his girlfriend went for broke in the fight for her own future.

My diagnosis did not stop my husband - he left at the most difficult moment. A moment of denial. Mad desire to return the past. But now I say it so calmly ...

This couple made fun of me. The girl Katya could ring the door of the apartment in the morning and hand over the tie that “your husband forgot at night”. Or, on the contrary, show up on the phone after midnight and carefully advise “do not worry, he has already left.” When I complained to my husband, he said that I thought of everything. Nerves were on edge.

And since I am honest by nature, I understood that there would be no other husband in my life. If this one, with whom I lived for fourteen years and gave birth to a daughter, left, then what can we say about someone else. Any man will hear the words "multiple sclerosis" and ...

I didn't dig into myself then. I was hiding ... The most important meaning of life was to pretend that everything was the same. That is the same heels. The same forces. In no case should I let others know that something is happening to my body. To lie that I twisted my leg and therefore I hold on to the railing ... Creating the appearance of the existence of the former Ira Yasina took all my time. There has never been a scarier time in my life.

“Well, you idiot,” I thought, “Now, Mikhal Ivanovich, you said complete nonsense. Life has not ended, it just changed. a man with a very serious illness. Her book is an absolutely amazing reading. Testimony without edification, honest, courageous and very simple. Be able to rejoice and thank; feel less sorry for yourself; help others; always look ahead and ask yourself "why everything turned out this way in my life? "; to love people, to appreciate them, to be seriously interested in them - in the case of the author of the book "Case History" these are not good wishes, but everyday practice, his own recipe for a complete and happy life in difficult circumstances. And on the pages of the book, written easily and with humor, there are a lot of people: ...

“He issued the following: “Just imagine, he lived young, handsome, rich, and then one day he got into a car accident and broke his back. Everything, life is over!" -
“Well, you idiot,” I thought, “Now, Mikhal Ivanovich, you said complete nonsense. Life has not ended, it just changed. a man with a very serious illness. Her book is an absolutely amazing reading. Testimony without edification, honest, courageous and very simple. Be able to rejoice and thank; feel less sorry for yourself; help others; always look ahead and ask yourself "why everything turned out this way in my life? "; to love people, to appreciate them, to be seriously interested in them - in the case of the author of the book" Case History "this is not good wishes, but everyday practice, his own recipe for a full and happy life in difficult circumstances. And also on the pages of a book written easily and with humor - a lot of people: beloved parents and daughter, Lyudmila Ulitskaya and Mikhail Khodorkovsky, all sorts of friends, writer Gallego Gonzalez and President Bush - (plus a number of cats), - and one or more wonderful stories are associated with each. year was not without the participation of Irina Yasina, which she writes about in her diaries, explaining her position. Don't wait, don't be afraid, don't ask, just stop and look at yourself and your life - you already have everything. That's what this book is about .