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My life’s story begins in 1985. I was the only child of the family with no siblings. It was those early childhood days when I realized that I got a very big challenge in my life: My face looked so different than all my friends. But still I wasn’t aware what a catastrophe it was going to be, still, everything seemed fine. Until the day I had to go to school for the first time: For two years no school accepted me. My mom and I both have this issue: This is a genetic disorder that occurs in 1 out of 50,000 kids, it’s so rare that many doctors had no clue what was wrong with me. It was passed to me through my Mom. It affects the facial muscles only, nothing else, it just leads one’s face parts to form incompletely. I have no other issues except for my face looking different from others.
After a while searching for a school, my mom was forced to get a letter signed by the doctor for me to be able to study in a school since they told my mom that I have to go to a special needs school. Also, my mom was told that other kids would be frightened by me. They told me: “What’s your classmates’ fault to be forced to see your face every day?!” Those two years were such a great challenge in my life. I even remember that when for the second year in a row, schools avoided to accept me, my mom applied for homeschooling for me instead. But still, I would go out to play with other kids. Mostly with our neighbors. They never treated me badly, but my worst days began as soon as I entered the school. Their reactions were so negative. Other kids would fear me and even made fun of me. I used to be asked: “What are you?! Why do you look like this? Are you really a human?” I got a funny memory from those days. One day when I was studying third grade, I was walking around the schoolyard that one of the kids came close to me and began staring at me curiously. He was wondering who I am! I went close to him and said: “You know why I look like this?” “No!” He replied. He was frightened. I told him I come from the space, I am an alien! He was no more afraid of me because now he knew the reason why I look like that. He touched my face and said: “Wow, so interesting!” That was the first time in my life that someone was not afraid of me. I met him again the next day, and we became closer friends as time passed. He was the only close friend I had in that school. Now my face is even better since I have gone through many surgeries on my nose and jaw. Back then, even I myself believed that I am really a weird and scary person.
After that incident, other kids accepted me a bit more. I was not expecting that much either. Just to have one or two friends would make me so happy. I didn’t expect anything more, and I was lucky to find that one friend. No matter how difficult, I finally completed my primary school. Still, I was not aware of how terrible my situation was. It was only when I entered high school that I just came to know how catastrophic my situation is. Now I had to appear more in society. My childhood was over. Now I was seeking an answer: “Why do I look like this? Why everyone looks good but me?” My brain was bombarded with questions. Nobody would ever understand what difficult days they were for me.
Gradually I believed that it’s only me and my mom who looks like this in the world. One day we went to see a doctor, I finally asked him: “Why nobody looks like me? You always condole with me, telling me that many others look like me, just show me one of those many!” That day the doctor told me: “Could you stay here for two hours? I’m going to show you one of them!” I agreed and waited at his clinic. A Couple of hours later I was called by his secretary that the doctor wants to see me. I entered his office and saw a man standing there. I was surprised. He was just like me. He had the same genetic disorder. But there was a big difference: He was way older than me, and that’s when I realized what a disaster is going to be since I could simply see my future.
There were some days I used to ask my mom: “Why did you give birth to me knowing the fact that your disorder might be passed to me?!” The only thing that could make me satisfied was the fact that my mom was just similar to me. She has gone through its difficulties already. She didn’t treat me the same way her own parents treated her. I remember one day I took a taxi, I was sitting on the backseat. In the middle of the way two other girls wanted to get on the car, but as soon as they saw me they got off and shut the car’s door. They whispered something to the driver, then he turned his head back and looked at me. “May I ask you to get off, please? These two ladies want to get on but they are afraid of you!” That day I had to stand next to the street for an hour until I could take another taxi.
I almost got used to being treated like that. I got used to being discriminated for my differences with others, differences in which I didn’t play any role. Long time passed since then. Now I was a grown up and wanted to make money, just like anyone else. I was looking for a job just like any other human. I was really just a human similar to others: my head, my mind, all of me was just like other individuals. But I was not treated the same as others. Back then I was so into graphic designing since I was always on my own I got so interested in art and designing. I even learnt four different instruments. I was so connected to my instruments. I lacked excitement in my life, art and music could make me excited. I learnt all those instruments on my own, without any teacher. I even learnt graphic design on my own since my mom was a painter herself. I remember the first things I have ever painted were my mom and dad’s faces. I painted my mom’s face exactly as it was. To me she never looked ugly or weird, instead, she looked like an angel to me.
I used to look for vacancies every single day, I would email them my work samples. Everyone was so satisfied that I would receive a call right away that I was hired and could begin my work from the next morning. But whenever I showed up at their offices and as soon as they would see my face, they would apologize to me and say that there is no job for me to do anymore. Now I knew that my problem was getting more serious. I was 20 back then. I thought to myself: “Oh, so far it was like this, most probably it’s going to get worse after this”.
I was thinking about how I could get a job? How I could marry? I used to cry every day. I used to scream out every single day. I never told my mom what was happening, I didn’t want her to feel broken-heart anymore. I didn’t want her to feel disappointed for me anymore. I would take a pillow in front of my mouth and scream into it so that no one would hear me. It was so torturing for me. I could see one of our neighbor’s son who had been to the guitar classes but he couldn’t even play a single note after 10 sessions, while I learnt guitar by myself but still my talents wouldn’t get me anywhere.
For me, music was a communication channel with others. I could feel that music could distract people’s attention from my face. It could help me have people spend a little bit more time next to me. Back then nobody was willing to talk anything more than a simple greeting to me. I wanted to find a way to attract people’s attention, to be clapped by others. Music could help me. It could help me to have people look at me.
When I would go for a walk outside, I could see people staring at me, and muttered: “Oh thank god we don’t look like him!” Hearing that was destroying my self-esteem. I remember one day my parents came to my room, sat next to my bed and said: “Listen dear, you should accept the truth. You’ll never get any job out there. It’s better for you to continue our family business.” But buying and selling were not in my blood. The worse thing was that I had such low self-confidence, how could I sell something to others while I couldn’t even talk confidently? But my family used to think that I am lazy to work.
Until one day that I thought about portrait photography. As far as I remember, no one has ever asked me to take a photo with them among our relatives, they would only ask me to take a photo from them. I was always expecting them to ask me to take a group photo together but this never happened. That really bothered me. But then I thought to myself that maybe this is a message to me: I didn’t have a beautiful face, but I could see beauties. I could bring others in the photos beautifully. It was still difficult that someone would trust me and agree to let me take his or her photo.
One day that I was walking in a park, everyone was looking at me. One of them mocked me, one of them showed me with fingers. That day I made a decision: I said to myself that I am a superstar, that’s why everyone is looking at me! That encouraged me to go after my passion. Then I applied to study at the university. The first days I was shaking. Now I was an adult and wherever I would go others were staring at me. Until a day that my life was revolutionized: One day in the music class, everyone was asked by the professor on what instruments they can play. He would name each instrument and those who knew it would raise up their hands. He called five or six different instruments and I raised up my hand for all of them. Suddenly he told me – in kind of a rude way: “What’s wrong with you? Why do you raise up your hand for any instrument I say?” “Because I really know how to play all of them sir” I replied. He couldn’t even believe it. He asked me to stand in the middle of the class and play each of them for the rest of the class. That was the point where my life completely changed.
One of the greatest challenges of my life was to marry. First of all, I didn’t dare to talk to any girl. The first time I got rejected, it took me 10 years to dare again to talk to another girl. The First time I liked a girl, his dad told me something I would never forget. He said: “I want to show off to all my relatives with my son-in-law, you got nothing for us to show off with!” He even told me he feels embarrassed to tell others that I am going to marry his daughter. His words had such a negative impact on me that for 10 years after that I didn’t even dare to tell any girl that I love her. But since that day of music class, my life changed dramatically. I felt more confident since then.
The second time I decided to tell a girl that I like her, I just saw a piece of light in the dark. I just asked God to help me that it happens.
Wife: The First time I saw him at the university, he really looked strange to me. He didn’t look scary though, just weird and at the same time interesting. I didn’t want to talk to him at all. Even I had a guard against him
- I noticed this very well, and I just tried not to push her a lot. I didn’t want to be hard to get rid of. I just tried to make her trust me, I tried to make her know that I am good-hearted. After a while that she gradually trusted me, I told her. First time I told her at the café.
Wife: I was really shocked in the beginning, but I tried not to react in a way that upsets him. I told him I’ll think about it, but deep in my heart, I knew that my parents would never accept him as my life partner. I told him that I’ll give him an answer by Monday, but in fact that Monday never came because I assume silence implies consent! (She smiles)
- I am pretty sure she couldn’t accept me in the very beginning either. But she wanted to know me more. I didn’t insist. I would just let her know that I truly love her and then would setback to let her think carefully.
Wife: I saw so many things in him that I never saw in myself. I felt that he makes me feel complete. I saw bravery in him. I saw self-confidence in him. I felt that I can rely on him. That was the point when I began talking to my parents. Obviously, their first answer to me was a big no. They said don’t ever think that we would agree.
- Her sister told me this is impossible, and it’s for my own good to forget her. But I could see miracles throughout all my life. I heard a voice inside me that said: “You could do it so far, so you can after this too” I tried to prove myself to her family as time passed.
Wife: I brought many reasons for my Dad. But the time was so helpful too. It took them a year to finally agree.
- Finally, her dad said if you really want my daughter you got to come and talk face to face with me. I decided to go to their house, even though it was so difficult for me. I could remember all those bad memories from the past once again. But finally, I decided to talk to her dad honestly. As soon as I sat in front of him, I told him frankly: “I know that my face is a big question mark for you!” Then I told him all my life’s story. I told him about my future plans.
Wife: I heard what my friends and relatives said, but I never listened to them. They were no more important to me. I loved him and made my decision already. I emphasize that I never married him because I felt pity for him because I didn’t marry his face, but I married his heart and soul.
- I witnessed God’s miracle in my life for one more time…

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14 May, 2019
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