I first heard the word when I was seven years old. Two girls stood together in the middle of the playground, close enough to whisper. One of them pointed at me, in her unsubtle childish way; I assumed that they were inviting me over to play with them.
Then when I got closer, the one who had pointed panicked. She withdrew her hand as though she had been scolded, and said loudly, ‘Ew, oh no, the monster is coming over!’
I recognised the word in an instant, and a small part of my confidence died right there, on the concrete ground.
When I got home that day, I told Mama what they had said. She grabbed me and hugged me tight, saying, ‘It doesn’t matter what they think. You’re beautiful. You’re my beautiful boy.’
I didn’t feel beautiful, though. When I looked in the bathroom mirror and saw the left side of my face, where my skull and face were disfigured, my ear and eye pulled tightly towards my hairline as though they were drooping, I felt ugly. The empty, lonely stare from my right eye bored into me until I collapsed and retched on the cold tiled floor.
I cried myself to sleep wondering why I had not been born like the other children. The ones who were normal. Back then, the word normal meant nothing more than looking like everybody else, and it was exactly what I wanted to be.
Nobody, not even Mama, could comfort me.
It was a while before I heard the word again, but I knew even as a child that I would not be able to escape it forever. Mama kept calling me her beautiful boy, and after a while I started to believe her.
That was, until one day when I was nine. Mama and I went out shopping for some new school clothes for me, and a boy younger than me spotted me from across the store.
‘Daddy,’ I heard him say slowly, to the man stood next to him, ‘is that a monster?’
The boy pointed at me, and his father looked up from the shoes he had been examining.
They left the store quickly, before Mama could catch up with them. She had defended me, but I was up against it again. Her soothing voice did not convince me that the other boy had been wrong.
It was even harder to forget the second time.
All through school, Mama told me to ignore what the other kids said. She claimed that none of them were special, like me. She said that when I met good people, true friends, they would see me for who I really was: her beautiful boy.
I wondered who these real friends were, where they were, and why I had to wait so long to find them.
The more comments that the other kids made, the less I listened to Mama. They called me every name they could think of, but nothing ever hurt as much as monster hurt.
I was not a monster.
It was not my fault that I had been born this way. It was nobody’s fault. It was just how I had been made. This was the way my face and skull had grown, and it was the way they were always going to be.
School was long and hard. I performed average at best, and would probably have done much better had I not had the added burden of my deformity. Nevertheless, by the time I left, I was proud: I had not pulled out of school to be tutored privately, as several people had suggested, and by then my disfigurement was a part of me.
This newfound feeling of positivity did not last long.
After finishing school, I found it all too easy to retreat, and hid away from the world. I would have stayed indoors forever, had Mama not forced me to go outside and face the real world once more.
Being older, I could stand the stares of children a little more than I had ever been able to do before. They were too innocent to know that the names they were using would hurt me. It was the reactions of adults that now stung.
They were shameless. No apologies were made for the behaviour of their children – or, indeed, of themselves.
Despite all of this, I was stronger than I had ever been. Something about my time locked away had taught me a valuable lesson: I could not pretend that I did not look this way, and there was no shame in who I was or how I looked.
It did not matter that people turned their heads from me. It did not matter that they called me monster to my face. It did not matter, because I was a good person. I did my best to do my best.
That was the only thing that mattered.
You were special. You were beautiful, the perfect bride to Mama’s beautiful boy. You never did anything – intentionally or otherwise – to hurt me, and you only saw the man inside.
All of my strength, I owe to you. My past was only a build up to the moment when I met you, when you made me see all the goodness in the world with new eyes. That is why, though you’re gone, I will remain strong. Everything that I will do from this moment on, I will do for you.
The monster is not I; it is the disease that killed you.