The operation.

 The most of people with SMA are operated on the spine during their teenage period. If one still could walk, so after getting the straight back one is unable to stand or make a step. When I was 14 y.o., I was very close to such operation, but it didn't happen. For good or for bad but I was able to walk almost 20 years after that and till now I'm able to stand by pole. To pay for such ability I kept myself from long sitting. So...there is a choice to sit all day long or to save possibility to walk longer but without many hours at your desk. How was it in your case? Would you tell?

From time to time some doctors used to come to the boarding school where I studied for check-up. Once it was a young woman just after the medical university. She had prescribed me some injections and started to wait when I would feel better. During her studies she read in the textbooks that they were supposed to bring relief.. Well, I knew from the long life experience that nothing gave such effect. Meeting me on the stairs or in the canteen she asked every time with imploring look,"Do you feel better?" She was so nice and I felt pity to disappoint her so I always said,"Just a little better. Thank you."  :-)


The visit of an orthopaedist wasn't so pleasant for me. Professor Neyman had told that I had to be operated on the back and next month would be the best time. It sounded fearful and I hoped only that my parents wouldn't let to torment me. But they did. Soon I found myself in the clinic and entered a big room with 11 beds. The ceiling wasn't as high as in my school dormitory and the air was very heavy there. My bed was by the door and I was the only walking person in that room. Other girls and women were after operations and lied in the plasters like mummies.

The long period of check-up and preparations had started for me. An iron stick (distractor) had to be put into my spine to hold my back straighter this way. Usually after such kind of operation one should stay in bed for 2 months, then the plaster had been changed to a new shorter one and it was possible to walk but not to sit for several months. Later the hard leisure corset was put on for a year. If I'm not wrong with dates, everything was finished in 2 years. Well,my muscles didn't let me spend so long time without motion so they wanted to make an experiment and keep me in the bed just two weeks, without the plaster corset.

I thought disspirited about the death during the future operation as a kind of deliverance. While watching the neighbours by the room and listening to their stories I had become calmer and even waited for the D-Day. Meanwhile I helped others to bring some water, open and shut the window, and to make various small things, which gave me feeling that I could be useful. Soon two young women from our room got up and started to walk. They were very communicative and had a lot of amateurs. For a joke they had told a romantic story about me, the detail I never knew unfortunately, and I was surprised to hear strange questions about my husband from the men who always stood smoking in the bathroom where I used to go for the water. For my 14 years I looked quite adult. Funny people, they made me forget my sad thoughts for a while.

In spite of all torments which could be seen around, the atmosphere in the clinic was very optimistic and and every person considered his or her ailment a temporary inconvenience.. With time I felt almost natural such attitude towards me, too. Besides I was as strong as never before thanks to a new medicine. Those injections gave me the power for three to four hours and then the influence finished. Years later I learnt how dangerous was that medicine for me and that is why I had such a big problem as the impossibility to hold my head while walking later. It took my forces and kept me broken down.

A boy from the South who came to the clinic a week later than me and always teased me was already operated but I still had been waiting for my turn. Pasha was a Gipsy, he told me something in his native language and when I asked to translate just smiled. At once after the operation he asked to call me to him and the only thing that I could do was just to take his hand and look at him with tears in my eyes. It was the sorrow to him and the sorrow to myself because that day I was told that I wouldn't be operated at all. The doctors were afraid that my heart and lungs would be unable to stand the strong anaesthetic. During the endless month I was prepared to that operation and when the threat was over there was only bitterness and disappointment.

My dream to make a step towards health people  had been doomed. That experience had made me more adult and more pessimistic. Reading the biography of the famous Russian writer Dostoevsky I thought that we both had gone through the same. At first he was sentenced to the death and just the very last moment it was reported about his pardon. After such sharp change it is impossible to feel happy, believe me. There is only great emptiness.