“Mom, stop crying!”: I was born without fingers on my hand
I was born in Ufa in 1988 - not the best time for people with disabilities. On ultrasound during pregnancy, my mother did not notice anything, she was told that everything is in order - but I was born without fingers on my right hand. First of all, Mom was offered: "Let us drown or strangle her? Let's say that there was a cord entanglement, you will not be tormented." In the hospital, the children slept separately from their mothers, but my mother took me away because she was afraid that they would strangle me at night.
Relatives met me badly too. Mom said: "Hide, let him sit at home. Never show it to anyone." Nobody showed participation, said that everything will be fine and they will help. One grandmother was crying, the other was all the same. Dad didn’t particularly participate either: he never asked anything about disability or how I lived. My elder brother was then five years old, and most of all he helped my mother.
Mom cried every night after putting me to bed. She says that at the age of two, when I started to say something, one night I got out of the cot, went up to her kitchen, put my hands on my shoulders and said: “Mom, stop crying! I was born to live. You will proud of me. " Mom says that I uttered absolutely grown-ups, serious words - then I took her hand and led her to sleep. She says that after that I did not speak so meaningfully for a long time - it was some kind of inexplicable moment of magic.
I developed like other children. When I was three years old, I was taken to a kindergarten, although my mother was very afraid and at first she remained with me. Then she began to say: "And you do not want to go somewhere? Maybe leave it for a quiet hour?" I was very lucky with the teachers - I was never offended in the garden. But in the courtyard - yes, children and adults also called them "handless". Already by the age of four, my mother and I read the children's Bible in pictures, and I really liked Jesus as a superhero - I thought he was a cool guy. I told my mother: "Jesus said they do not know what they are doing." Well, I, in principle, was active - I could answer, if they called me names, stand up for myself, despite my hand.
"She will still play the violin"
My dad is a surgeon, and somehow he found out that he has surgery on his hand. The doctors said that the little fingers would be transplanted onto the arm, then they would grow up and work, they promised: "You will still play the violin player." I am not a surgeon, but I roughly imagine the anatomy and I think that cutting my toes from my feet and sewing them on my arm is complete nonsense. It seems to me that they still will not be able to grab objects: I am not a lizard, I cannot grow fingers so that they are the same length as on the other hand. But for some reason dad believed it. He did not participate in the family life, my mother pulled me with my brother. She was very difficult - and, of course, I wanted to believe that she could somehow help the child. I understand her, dad - no (operations on the transplantation of toes to the place of missing or lost fingers are actually carried out, and their main goal is to at least slightly improve the function of the hand. Technologies are improving, which increases the likelihood of success - although no specialist will give advance guarantees of a positive outcome. - Approx. Ed.).
I was four years old. It was a very expensive operation: we sold some kind of SuperTelevision, it was then possible to buy an apartment for that amount. The hospital was located in Pushkin, near St. Petersburg, it was very dirty there, cockroaches crawled, my parents had nowhere to sleep - when I was discharged from intensive care, my mother slept on the floor nearby. I do not remember how I was prepared for surgery. I remember that I had with me a red pot and my favorite toy, Timoschka's yellow-brown dog. Before the operation, I gave concerts in the hospital: I played what I could, told some fairy tales, the children gathered around me. I remember the injection before anesthesia, I remember an enema before the operation. I did not understand what was happening.
But the most vivid emotions were after. First, it was very hard: the operation was experimental, lasted eight to nine hours and the body had a hard time with anesthesia. I was in reanimation with droppers, my mother thought that everything — I ran to the church to put candles. I do not know how miraculously I survived. I remember how I woke up: the arm and both legs were suspended, there was a catheter around the neck. I can not move, all in dressing. I turned my head - next to the girl who had her fingers torn off: a leash was wound around her arm, the dog ran into the elevator, the doors closed and he went. She was older - she was about seven years old. I had an operation on my right arm, and on her left. I remember it was terribly boring, and we exchanged candies over the table.
Mom says that I uttered absolutely grown-ups, serious words - then I took her hand and led her to sleep
Parents were not allowed into the intensive care unit, but mom somehow managed to get through. It is hard for me to remember this, my memory was clouded due to anesthesia. But I remember well the dressing, I was not so much concerned about the hand (it always was), how many legs: they remove the dressing - and they are all covered in blood. I was sewn with horsehair, a bunch of threads stuck out of the flesh. Mom at the first dressing fainted from fear. I was afraid that my legs would spread in half due to the fact that they were sewn up with hair.
Then I returned to Ufa. Rehabilitation was long: massaged the whole body - you do lie all the time. On my hand and both legs my mother made paraffin-clay masks. Feet had to develop: roll the ball, draw with pencils. I started to walk, but slowly - thank God, my legs recovered, but it took several months. Mom somehow coped with everything (and she had one more child), I don't remember papa’s help.
Almost immediately it became clear that the operation was unsuccessful, and the fingers did not work: they fell, but had to stand straight. When I was six, they decided that I needed to do the second operation - and she broke me much more than the first. I could not go with my mother, my father was carrying me to her. During the second operation I, as I understand it, tightened my nerves and muscles. I didn’t like the children in the hospital, the atmosphere was bad, my father didn’t behave very well - two days after the operation he took me for a walk around Peter, and I got sick. Fingers hopelessly fell. There was talk of doing the third operation, but I was already six, I thought and said: "If you want to operate on someone, then give yourself."
It was easier to recover from the second operation, but I was morally broken. I had no one to support. The operation injured more than a disability - you get used to a disability, you live with it. And the operation was completely superfluous: fingers do not grow, do not work, I can’t even move them. I can stick needles in my finger and feel nothing. More and legs damaged because of this.
"That doesn't work"
I have limitations, I can not do everything. For example, I can not normally push-ups. It is difficult for me to do much at home — say, washing floors, because squeezing a rag is a whole science. I clean the potato with a special device, pressing it to the table, otherwise I can't. I cut food very carefully and use a rag: there is always a risk that I will not hold them with my right hand. I drive the car calmly, I have an automatic transmission - there are no problems. In the subway, if there is something in my left hand, I cannot hold on to the handrails.
The most difficult for me was adolescence. You start to look at the boys and you realize that you are not like everyone else. You start to hide your hand. I have been doing this for a long time, and this is terrible. Nobody says that you can be who you are, you need time to come to this. At the institute, I constantly hid my peculiarity - I could communicate with people for several years, but they might not know what happened to me. I did not wear special clothes, I went with short sleeves, but I always knew how to sit properly, how to speak, when to wave my hand so that they would not be noticed, and to remove.
I am good at following the reactions and I always know at what point a person notices a hand. This is terrible stress. Every time you think: they will find out what I am, they will accept me, and then they will see the hand, and they will not care. But that doesn't work. It happened that people recognized me, and then they saw my hand, thought that I was constantly lying, and disappeared. How many men stopped communicating with me, although at first they liked me while I was embarrassed and hid. We talked with one guy for two months, I already knew his friends, but when he saw my hand, he disappeared - not a word, not a text message. And so with everyone: they could say that I was super cool, ready to marry, and then simply disappeared.
"I would not want to be born with an ordinary hand"
At some point, I realized that it was time for me to admit to myself that I was disabled. It took a lot of time, I came to this only about twenty-five years. Helped drawing. For my birthday, I gave myself a course of meditative drawing zen art and got involved. One of the tasks was to draw a hand - I, of course, planned to draw the left one, and then I realized that I again wanted to hide my peculiarity. I realized that both hands deserve to draw them, because they are different. I sat until three in the morning, since it was important for me not to be interrupted. It turned out cool: I look at the picture and see what a beautiful hand is - in pebbles, in jewels. Then I felt as if I had pushed off from the bottom - I began to draw, to recognize myself, the desire to live, to create, returned. I plunged into drawing and design - I’m doing this now, although I’ve previously managed projects for the development of the advertiser’s brand. In general, the work disability has never bothered me.
I admitted to myself that I have a feature that affects my life and how I am. And I can not say that this is bad - I would not want to go back in time and be born with an ordinary hand. I began to change - to publish photos where my hand is visible, although I could not even think about it before. I used to hide her for a long time reflexively, but now I began to force myself to put it on the table. I am still working on this reflex reaction.
I think that I will never fully accept how people react to my peculiarity for the first time. I noticed this quite recently: there was a case when I had to meet many people, shake hands with them, but because of the loud music, I could not “smooth out” their reaction with communication. I know that for others it is difficult: they do not expect that I have a disability. In that situation, I could not say anything, I just could not be heard - people were shocked, I was embarrassed, I wanted to run away.
They could say that I was super classy, that they were ready to marry, and then they just disappeared.
Everyone reacts differently. Someone will not blink an eye: he noticed - and we communicate further. For some, this is stress: a person twitches, periodically peeks, because he needs to get used to. But then, people no longer fall into my life, who may disappear after learning about the hand - I don’t hide it anymore.
I do not mind the words "disability" or "limited opportunities." What does it matter how to call it? You still can’t actually do anything. It is clear that I will never ride a motorcycle, but I don’t like them - I was lucky. Most importantly, I can and want to live. It’s very hard to hide part of yourself. Although, due to your peculiarity, you perceive life quite differently. Other people don’t understand what it is like to say to yourself: “Thank you for tying my shoelaces! Thank you for not staying at home, but working, I’m trying to achieve something.”
I wrote a post on Facebook about my experience, because I hope that it will help someone to accept and love themselves. I do not know whether these operations on the hand are successful (I did not study the question) - but I think that parents need to think rationally, and not make such decisions on emotions. I do not understand why harm other extremities, try to remake a child and customize to a standard.
