The pieces of the amber...or living with SMA.

After staying at home during many years I see my life like a  scene from a movie. When someone is falling from a huge cliff and the very last moment has a  luck to catch a dry, dead bush hanging not too far from the edge.  Sure, it isn't very comfortable to hang there as a pear but it's much  better than to lie on the bottom of this abyss. Making a little effort  it's possible to see normal people's life and from time to time  some of them come closer to talk about their problems. They sit down  on the edge dangling their legs down and start telling what a hard life they have. Of course I haven't all diversity of their  problems (love affairs, kids, work, travels), my only one is to be able hold myself hanging.

During the first years of such life, which started when I was about 16 y.o., the inner voice repeated me not once, " let your hands go, put the end to this senseless torment, leave this shaky shelter and you will see that death is kind, it would give you the great relieve and freedom". Well, I'm not a fighter by nature but to go away such way wasn't for me. It's hard to explain why have I stayed on this little piece of branch. Not for others. Not for a slight hope to change the situation to the better one. I just felt from a moment that it would be a big mistake and perhaps I would pay double prize for my desertion. Sure, it is very easy to imagine what will be in several years. Already now the hands have grown into the branches, made as a whole and it's almost impossible to  release  them. 

Looking around at other persons in similar condition, I see how their bodies merge all together with the cliff and with years become like prehistoric insects which sometimes are found in the pieces of the amber. No possibility to move and a lot of free time. At least now I'm able to turn myself from side to side, to look up and down, to talk to my neighbor from the next branch. We can't see each other because of the edge on the cliff but when the wind blows we exchange some news ( by phone of course). I know that she

has the same name like me and almost the same style of life. But her shelter holds her stronger and the amber started the work many yeas ago. It could seem rather strange but being in much worse position the others' Irina more often helps me to save the good mood than I do.

They say that hope dies last. It seems that mine is dead for years. Well, sometimes stupid dreams fly to my head like birds but they don't create their nests here, just few minutes of rest and nothing more. It's quite natural that during such moments I start to dream about someone strong enough to give me the hand and lift me into that wonderful world seen over the edge of my cliff. There were several brave and noble persons who tried to commit an  exploit but every time an obstacle appeared and they should go away staying me their kind wishes to save the hope and wait till better times. Every time it was so painful to watch their torments without having any possibility to help them in that toil. Only thing that I could make for those wonderful people just repeat hundred times," This isn't your fault, there are impossible things in this world."

Being not like others makes you feel an exceptional person sooner or later. It  doesn't mean better or worse, just different. Nobody is able to  avoid such feeling.

In my childhood I was lucky never to be treated as disabled one by my friends  from the yard. If some rules of a game were too difficult  for me physically so as an exception they could be changed such way  that I didn't feel offended. Well, perhaps, it wasn't too difficult  to treat that little girl as equal one. She could run  almost as fast as others, jumped and hopped not very well  but it wasn't so important for being considered a good friend.  There were a lot of games where all these skills  weren't necessary. She had two best friends, who lived the next  flats and grew together since they were 2 years old.