An extra 15 years

Twenty years ago, she was diagnosed with bass. Tatyana decided that no matter how much she remains, she will enjoy life every day. Now she experienced the most optimistic forecasts of doctors for 15 years. The disease has not gone anywhere. But Tatyana is still alive and rejoices in life. And only sometimes he sighs heavily, remembering his son

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Tatyana’s room is very cold, the window is always open here, otherwise it begins to choke. She has a bass - lateral amyotrophic sclerosis. With such a disease, people die in people of the brain and spinal cord, and gradually paralyze the limbs and vocal cords. The person first loses the ability to move, then speak, then breathe .

Tatyana was diagnosed in 1998, she was thirty -five years old, she alone raised her little son. For a year, no one could understand what was happening to her, why a young woman had problems with speech and legs. When they understood, the doctor called the standard “three to five years” and left it alone with this. At that time, there was nowhere to read about the bass, it was impossible to find any research, find out statistics, understand what would happen to you in the near future. Only a dry diagnosis and a hard forecast of a doctor. Tatyana decided to devote all the remaining time to her son. Anton was three years old. “When they diagnosed, I hid,” Tatyana recalls. - Then I only divorced, did not communicate with anyone. Only one friend remained. Those who learned about the disease themselves disappeared. "

Tatyana photo: Pavel Volkov for TD Valentine's girlfriend helps Tatyana photo: Pavel Volkov for TD

“My son and I walked on the river in our strogin, someone gave me a newspaper. There was an article about Stephen Hawking, then there was still little about him. I already knew that I was sick, but I still did not know what exactly. I thought, suddenly I have the same as he. I was horrified! " - Laughs, recalling, Tatyana.

The bass has not yet been fully studied. It is not known why the disease begins, whether it is inherited, how it will flow, and how much time does a person have before he loses the opportunity to communicate with others. The bass progresses very quickly, usually from the appearance of the first signs to death passes from three to five years. But Tatyana has been living with illness for twenty years.

Today, its pages in social networks are filled with photos from travel: Lebanon, Australia, Spain. On some - old ones - she stands a photo. In the comments they write that they admire her optimism. During the conversation, she smiles all the time, even when he speaks of sad. She travels, goes to the Bolshoi Theater and to concerts, is engaged in mathematics with children.

Tatyana and her mother Lyudmila Mikhailovna. In the background Anna, daughter of Valentina's girlfriend photo: Pavel Volkov for TD

Before the illness, she taught in college, now she works as a tutor - schoolchildren go to her from the fifth to the tenth grade. He is engaged in some students for free. “There are, of course, favorites, we are people. Here is one, Vanya, so assembled, so smart and fast, and is engaged in, because he himself is interested in - this is immediately visible, ”says Tatyana.

Tatyana worked out tutoring skills in her own son. Twenty years ago, when they only diagnosed, she threw all her strength to the education of Anton - she was afraid not to be in time. Until the ninth grade, she was additionally engaged with him herself. Anton won the Olympiads in chemistry, physics and mathematics, studied at the chemical lyceum, played the piano and the accordion, danced, played sports, wrote poetry, traveled half the world with UNESCO, he was accepted into all the universities in which he submitted the documents. He chose the faculty of international economy.

“Anton finished the eleventh grade,” says Tatyana. - And such a moment came when he said that I need to think about my life. And I suddenly realized that I did not like anything. I began to work, look for a taste for life. New interest. "

Tatyana at work photo: Pavel Volkov for TD Tatyana at work photo: Pavel Volkov for TD

Now Tatyana lives together with her mother, Lyudmila Mikhailovna. After graduation, Anton went to work, began to rent an apartment and stopped coming.

He almost does not communicate with his mother and grandmother. Tatyana gives me his phone number, really wants me to talk to him, because her story is he. While I am trying to get through to Anton, Tatyana and Lyudmila Mikhailovna ask me not to say right away that they gave me the number, otherwise he will not talk. “I raised vanity in my son,” Tatyana says with despair. It is not possible to get through, a little later I write off with Anton, but he still refuses to talk.

In addition to students and mom, today the circle of Tatyana’s communication is the employees and wards of the “Live Now” fund, which helps people with the bass. Tatyana visits the conferences organized by the Fund, they travel together. Recently they were in Spain: “This is such a happiness - to visit there! We have disabled people sit more and more at home, but life does not end there. We must visit everywhere, see everything, at least rejoice. ”

Tatyana and her mother Lyudmila Mikhailovna Photo: Pavel Volkov for TD

Twenty years ago, Tatyana said that she would die soon, and she decided that she had to live a full life, and every day tries to follow this decision. Of course, there are moments of despair, but they pass.

At some point, people with the BAS have the opportunity to speak. The Foundation "Live Now" has developed special phrasebooks, with the help of which you can continue to communicate even without a voice. The fund remains to collect only one hundred and forty thousand rubles - not such a huge amount, but it will help two -hundred families communicate with their native person. And even with all the Tatyana's will to life, such an alphabet will soon need to communicate with Lyudmila Mikhailovna. And - let's hope - with Anton.