The despair.

   It's impossible to find a human being who never was in despair. May be it wouldn't be a big mistake to say that disabled persons more often have hard moments. Perhaps I'm making a wrong step touching this subject but it's a part of my life, too. Once I have started to describe my memories, the picture must be complete to be true.

The Boarding School.

    When I was 12 years old my mother had to leave her work at the restaurant where she was a chef cook. It was necessary to take me to school and meet after lessons, an arm was needed to hold during walking. She went to the factory where my father worked and they went to work such way that at least one of them was with me. One day one worked from 8 o'clock in the morning till 8 o'clock in the evening, the next was night  shift and afterwards two free days. It was very comfortable but soon I've become too weak for running from the one school floor to the other between the lessons. My four-storey school gave big problems to my slow legs. So my parents started looking for something more suitable.

The Winter

Saratov winter streets

The winter. This word makes me feel shiver. It isn't by association of ideas with the cold, sometimes really hard frosts and snowstorms. I clearly remember my eternal fear of falling walking the slippery road. In winter all roads are slippery. By sure there were some pleasant moments connected with this season but that image is the brightest of all. The short way up to school became impassable after a warm day and a cold night. Ice-covered ground made every one look like a clown, if it would be as funny as in the circus. After climbing the school hill poor creatures were tired and glad, a kind of alpinist's happiness. Every day's little victory didn't fill me with the joy, there was only constant fear of the falling and grave consequences. I couldn't allow myself "the luxury" to have the fracture. It could stay me without moving and my muscles would die forever. So many people have come to the wheel chairs thanks to the consequence of their fallings. Even an ordinary cold or flu could kill a person with such disease. 

The sanatorium

It happened that four early springs I met far from my home town in Caucasus. The sanatorium (health centre) stood at the edge of the huge forest, that covered the Mashuk mountain. It was 5 stored new building that has appeared among very old, or it's better to say antique buildings few years ago. Children from all parts of the Soviet Union came there and were provided with all the possible facilities. There was the myopathy health center on the second floor. I think, it was the only one in the USSR. There was enough place for 35-40 children from 6 to 16 years old. Can you imagine what an exploit should parents do to give their beloved child the chance to get that place 4 times? When I heart about going to the sanatorium for the first time, I was 7 years old, and hadn't an idea what did this word mean. Most of all I was afraid of operations, which I never had, and injections, which were made in plenty. I was told that nothing of those things threatened me. A little lie of grown-ups, like usually.

My answers.

May 2005. Freedom by lake.

When did you know that you aren’t quite healthy? – Just before going to school doctors said to my parents I have an incurable illness.


Did doctors give you the right diagnosis at once or after several false tries? – During 4 years the doctors tried different forms of myopathy on me. At age of 11 I was taken to Moscow where I’ve been given SMA III.

How old were you when started using your wheelchair? – For the very first time I used my wheelchair outdoors, when I was 30 y.o. It could happen earlier but during 6 years (before that date) I stayed at home without any possibility to get downstairs from the 4th floor. At home I use my home made wheelchair since 2005. A normal wheelchair doesn't go through the doors of my flat. I use an office arm-chair for sitting during my lessons.

Do you get any medical treatment? Did you feel better after some of them?- Yes, some medicine helps to feel stronger but every country has different names.