Irina Yasina: “My most important victory is the boy Alyosha”

“If I said that I know how to live with the disease for the rest of my life, I would be very cunning. I don’t know how a helpless person should live the rest of his life. Despite the fact that modern medicine cannot cure you, but it can support you – some things, knead, rub, massage. Most likely, you will live as long as you were allowed, the only question is – how? Because the quality of life, in principle, is terrible – because what does a person who is lying down need? Good TV, and, by and large, everything. Because if your hands don’t work, you can’t work at the computer yourself, you can’t read a book yourself, you can’t hold it and turn the page. So what? TV and radio.

You can try to find yourself – in principle, any book is at your disposal, and even if you cannot buy it yourself, you can ask someone to download it on the Web and read it aloud. You will lie and think about it. You will look out the window and see all sorts of wonderful leaves and the change of seasons. But at the thought that twenty years is so … I get scared.

When you are in a wheelchair, the trees get bigger. Hearing becomes worse – if people speak in a low voice at the height of a human voice, you do not hear them. You have to reach out, ask again, ask: “Bend over, please.” And sitting with your head up and looking into someone’s mouth is terribly hard.

The world is changing. This flower behind you – is it taller than human height, or lower? I don’t know anymore, I’ve been in a wheelchair for ten years. If you get up from the sofa and stand next to a flower, then I will understand whether it is higher or lower than you. But when I drive up to him in a wheelchair, I don’t know if he is taller than me, standing, or lower? And that’s all.

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• What my illness has taught me

To fight this state, you need a thirst for life. Not an empty faith in a miracle, not a hope, God forbid. Hope in general is a very harmful thing. Once upon a time, my, let’s say, first husband told me: “There was hope at the bottom of Pandora’s box. It was the worst evil.” At first I was stunned by such an interpretation, and then I thought – “yes.” Because hope disorients you. It deprives you of the ability to act, and you stupidly hope that a miracle will happen and something will suddenly happen. How would it happen to everyone besides you. Hope does not even deprive you of the ability to search for some kind of panacea – no, you will be looking for it. It deprives you of the need for self-improvement. Accepting what is ahead of you is the most terrible work, the most difficult. No matter how smart and reasonable you are, everything still rebels inside: “I don’t want to, I’m young, I’m so-and-so, I still have so many all sorts of ideas in my head,” but that’s it, you can’t. All goodbye. And hope in this sense is a very bad thing. There is no need to hope. They say: “Rely on yourself.” Also stupid words, because if you agree with yourself, you will do it, if you don’t agree, no.

There are things that I force myself to do physically. I ask my assistant to lift me up, put me in a chair, make up my face, dress me, take me to work. Go to some meeting or event. And sometimes it happens so sucks that you don’t want anything at all. Here my friends are sitting, talking, conditionally, about Putin and Medvedev, and I’m sitting and thinking: “What are they talking about? What does this have to do with me?” And yet I – and this is perhaps the most important thing – force myself to be interested in something other than my own health. and moreover, I want to lie down and stare stupidly at the ceiling and at the TV. Five years ago, it seemed to me that I would never like the Discovery Channel, because I want to see it live. And now – nothing, everything is fine. Priorities have shifted, because to see it live… Even for a lot of money, you can’t buy yourself the absence of inconvenience to enjoy this action. And you turn on the Discovery TV channel and watch it without any inconvenience. And you start to convince yourself that it’s the same thing. So, the work consists in not being satisfied with the conditional Discovery channel and trying to perceive something on your own for the time being, although this is becoming increasingly difficult.

It is natural for every person to ask the question: “Why?”. Why does no one else have the disease, but I do? This is a terribly unproductive question that cannot be answered. For what? For stealing a doll you like from a friend as a child and throwing it in the trash? You were five years old, you are trying to remember what a monstrous thing you did at that age, and you understand that these are things that are not correlated with the disease.

Sometimes they also like to invent karmic tricks – for example, I pay for the atrocities that my grandfather did … Thank God, I didn’t have such a grandfather, but he could well have been. And what, I pay with my illness for some magical grandfather? No, of course not. Then, it is enough to look: some bastard lives perfectly, there is nowhere to put samples – a scoundrel, a bastard, a thief – it is enough to look at many people who are shown on TV. Nevertheless, everything is “in chocolate” with him: both successful children and good, pink grandchildren. But sometimes you want to think about it – as a kind of excuse: “Now I will pay, and then all my grandchildren will live well and easily.” Good for believers. They know that it is impossible to commit suicide, it is a terrible sin. But I am a non-believer. Another thing is that I can’t even commit suicide myself, because I need to get pills, and my hands don’t work well, which means you need to call someone, and this someone will refuse you. And hang yourself – do not hang yourself.

Sometimes I think I would love to lie down and not wake up. One shot in the vein and that’s it. Then you realize that the fear of death is there, it is strong.

For example, I always thought that I was not afraid to fly, because this play would not end so easily. It would be such a highly artistic end to a story that is not the most pleasant for me … And here I recently flew on an airplane, and my daughter and son-in-law were sitting next to me. And the plane suddenly shook so that everyone screamed. It was an awesome air pocket, and it was really very scary! And I thought, “This is it.” And at that very moment: “I don’t want to. Lord, not now, my children are sitting here!”

The last time I was in Nyuta’s hospice, I said that I envy cancer patients who have such a house. But patients with neurological diseases have nowhere to go. And this is a terrible life. I have friends. So there is money. It is clear that after the closure of RIA Novosti, I will not earn anything and will not be able to be useful. But when a person lies and torments his relatives for years… No, they can love you, because a sick person is someone’s mother, someone’s grandmother, someone’s grandfather… But they are also tired. And it’s good if there is an extra room. Through the window you can see nothing but the gray sky. It’s good if there are trees under the window, and you see – here is winter, here is spring, here is summer, the bird has flown by. And if only the sky is gray?

When my mother died a year ago, I began to constantly think about what it was like for her to see me. Here I have a child coughing – and this girl is already twenty-five years old – I’m worried. And my mother saw how I couldn’t get up, I couldn’t get through, but my hands began to tremble … And I noticed how painfully she looked at me. She burned out, she had a hurricane cancer. When she fell ill, I went to Lisa Glinka to get a correspondence consultation on an already diagnosed diagnosis. Lisa said: “From nine months to two and a half years. Nothing will help.” Mom left after two and a half years, day after day. There is a lot of horror – to see how your loved one suffers. That’s why I live alone. No, my daughter comes to me, she comes all the time. But I don’t want her life to be locked in with me.

Of course, you can enjoy everything: I have a cat, I got two squirrels. They live on the site, in an aviary. I look at them through the window. Squirrels are terribly funny. I have an aquarium. The funniest thing is the snails. They quickly crawl up, then fall, then immediately begin to crawl back.

I manage to do some local things that I naturally enjoy more than cats and squirrels. Recently – about two years ago – girls met me and told me about their girlfriend named Lena, from Samara, who is studying in graduate school. Lena’s mother recently died, her mother left a fifteen-year-old cat, her name is Barsik. My mother did not have a husband, her parents died. And now her daughter brings Barsik to Moscow, because he has nowhere to go, and the ordeals begin: Lena lives in a hostel, her roommate is allergic to cats, other potential neighbors do not want to live with a cat, and now she sits with a cat in the middle of Moscow and does not knows what to do. Everyone says to her: “Put the cat to sleep, he is already fifteen years old, he has lived enough.” But it’s not about the cat, but about the mother – this cat is the only thing left of the mother. We managed to find an apartment with a neighbor who did not mind the cat. I gave her some money for the first time. But the main thing is not in this, but in the fact that the cat is alive, the cat is seventeen and a half years old. Lena is happy because she did something very important for her mother, and I helped her.

They sent me a wonderful manuscript by Nelli Gubochkina – she lives in Tula, originally from Ukraine. She got married in Tula, gave birth to a boy, about whom she was told that this is a vegetable, he will drool all his life and he needs to be given to a shelter. Nelly refused, didn’t give him to anyone: the boy has grown up, he’s not a vegetable at all. He walks, talks, arm wrestling, finished school! Nelly wrote a book, a very good one, which, of course, would never have been published. This is such an example of resistance, which is terribly needed. I managed to persuade one publishing house, which published the book.

My most important victory is the boy Alyosha. He is a double refusenik, this is some kind of cosmic disaster story. One guy, Kirill, who lives in Khimki, wrote to me on LiveJournal. About the fact that he takes his daughter to kindergarten, and the boy Alyosha, four years old, began to go to their group. Alyosha did not speak well, but he folded legos remarkably, and puzzles were the fastest. And then Alyosha disappeared. The woman who accompanied him – apparently his mother – stopped bringing him. Kirill turned out to be a caring person, he began to ask questions: “Where is Alyosha, where did he disappear to?” He was told that Alyosha was an orphanage boy who was taken from an orphanage by a woman and returned when she found out he was ill. He was diagnosed with Duchenne muscular dystrophy: this is an incurable disease, in any, the most civilized state, he will live no more than fifteen years. But here we return to where we started – the quality of life. In what conditions will he live? In a shelter where no one will need him, or in a family where he will have a dad, mom, birthdays? I wrote on Facebook and LiveJournal. A terrible storm arose, three families were found, one of them took Alyosha in May. The boy is sick, of course. But he has parents, toys. He will have a New Year, he went to the sea, went to Yakitoria. Whatever happens next, he has a happy childhood. And this is the main point.