I suffer from a rare congenital disease, the scientific name is epidermolysis bullosa, also referred to as "baby butterfly", because our skin is as fragile as butterfly wings. Due to congenital genetic defects, the adhesion between epidermis and dermis is very loose. Any slight bump and friction will cause the skin to rupture and fall off, even the esophageal mucosa and internal organs will not be spared, thus leading to various complications. With the increase of age, the skin is repeatedly damaged and ulcerated, and the incidence of skin cancer is much higher than that of ordinary people.
Because my hands are atrophied and deformed, I used to like walking with my hands in my pockets. Exposing them will inevitably attract curious onlookers. When shopping in the supermarket, the little girl at the cashier will be too scared to take the coins in my hand because of my hand; It's even more embarrassing if the coin falls to the ground. I couldn't lift my fingers and didn't dare to ask others for help, so I had to squat there for half a day. On the bus, someone's father will take his daughter away from me; On various occasions, I will meet all kinds of people who "care" and ask me if my hand is burnt; When I went to college, I was afraid to pursue the girl I liked. Who would want to hold such a hand and put themselves in others' shoes? How much courage does it take for a girl to hold such a hand?
Because the wounds are all over the trunk and the neck is clearly visible, I only dare to wear a shirt since I was a child, because the collar of the shirt is high and can cover part of it. When I was a child, I had to twist my buttons to the top, even if the weather was hot enough to suffocate me. On various occasions, you will still encounter all kinds of "concerns" and questions, such as "Are you contagious?" "Are you burned?" "Are you poisonous?" "Why don't your parents take you to see it?" "Your mother must have eaten something bad when she was pregnant with you." I can accept some questions and I will try my best to explain my illness to them, but I can only draw some conclusions.
Because of complications, the teeth are basically necrotic and the esophagus is atrophied and narrow. You can't eat like a normal person. You often have to eat for an hour. So for four years in college, I always ordered a bowl of noodles by myself. After waiting for half an hour, all the noodles were soaked, and I spent another hour sitting in the most remote position and eating slowly. You can't ignore the strange eyes of your classmates. They don't understand that simple eating is so difficult for me. So falling in love? I'm kidding. Do you want a girl to have dinner with you for an hour? Because eating is difficult, I can't even go out to work, and I can't pursue my dreams freely, because I can't eat hard meals, and even the noodles in restaurants are too hard for me.
When I was growing up, I felt inferior not only because of other people's strange and curious eyes, but also because of my physical defects, which restricted you from doing many things. For example, I envy people who can drive, but I can't get a driver's license in my hand; I envy people who can eat and drink as much as they like when they see delicious food, and I can only watch; I envy those who can run, jump and dance freely, but I can't do anything, because my skin breaks when I touch it.
These simple things in normal people are impossible in me, which is the biggest inferiority complex in my heart. When I grow up, I can basically ignore other people's eyes. I won't walk with my hands in my pockets, and I won't twist the buttons on my shirt to the top. I'm not afraid of being asked anymore. When others make me unhappy, I will turn around. I can clap my hands generously, because this is the real me.
However, the limitations of physical defects always remind me of the huge gap between you and normal people. Illness makes me like a bird with broken wings, unable to fly freely. Illness makes me like wearing a pair of shackles and unable to move freely; Illness makes me like a butterfly. When it is folded, its wings are broken.
Do you like watching Hong Kong dramas?
Do you know who else is the big brother besides him?