Goldenhar syndrome is a genetic condition, which is characterized by abnormal development of face features.
The right side of my body is underdeveloped. Apart from a visible facial asymmetry, my rib and shoulder are also disproportionate. Since childhood I also have been having a squint, which comes and goes.
I realized something was wrong with me early in my childhood, in the playground. And this “wrong” can cause aggression towards me.
Now my memory is blocking the traumatic experience — I remember only some moments. How I was cornered by a group of people, who would curse and taunt me, some of them spat in me. It was very scary. I was barely 13.
do remember going to school fully realizing that I would have to go through
hell and back, and I would agree on anything — even the comet falling right on
me — anything, just no to take another step towards school.
It’s still a struggle to remember all this — a kind of mixture of shame, hatred and hurt. These are feelings that have become a part of you, you can’t eradicate it, especially hurt. Unfortunately, these things leave lasting marks.
Obviously, it affects your self-esteem. Back then I just didn’t react. I chose not to let it get me and pretended it didn’t. They would throw a cloth at me — I would pick it up and pretend nothing happened, but I was screaming inside. Finally, I just really closed up.
it affects the way I express my emotions and thoughts. It still scared me to
speak publicly or do something a lot of people will see, because the memory of
being humiliated for mistakes is still alive. Luckily, I found a way out by doing
once someone commented on my drawing with “you have such a beautiful world
inside”, I ugly cried. Because that’s exactly how I always felt. What
difference does my appearance make? I am a good person; I mean no harm. Why do
people insult me?
What I should do with these waves of hurt, I
still don’t know. I know this feeling destroys me, but it’s so deep inside, I
can’t get rid of it.
No one has ever tried to apologize for what they’ve done to me.
These people don’t even remember being cruel, I think.
In Moscow there’s this project called “That’s not me”. It’s an interactive show, based on real stories of bullying, both from the side of the victims and the bullies. This show goes to school, and the bullying rate is gradually dropping. I think these things are very important.
It’s not just the victim that bullying harms, it harms the bully and the viewers.
Everyone is traumatized by the experience. The desire to attack is a weakness, too. It leaves a mark on all parties concerned, and this mark is impossible to get rid of. That’s what my therapist says.
What advice would I give? I think I would advise parents to create a safe environment at home, and also to listen to their kids and provide support. A lot of suicides or mass-shootings happen not only because of bullying, but also because of unhealthy environment at home.
I thought of a suicide, too. I hated myself and how I looked so much, that I wanted to stop existing, stop being physically in this world. Luckily, I was aa coward enough not to do it. And also I was really scared to leave mum alone.
Now I am happily married. My husband realized something was “wrong” with me only when I told him. Before that he didn’t notice anything unusual.
Love heals. Art heals.
I didn’t quite accept how I look, but I got used to it, I got my bangs to cover part of my face. In the gym I sometimes spot curious looks, some people can just stare at you. At moments like this I want the ground to swallow me whole, but then I tell myself that the reason they are staring is just my exceptional beauty.
This experience made me a fighter. It’s really difficult to get me with an insult now. I just don’t know how to get offended anymore. But also this experience made me kinder and more sympathetic.