Day: July 26, 2018

I was standing at the side of the court watching, as best I could, my brother and two of my cousins play basketball. It was easier to keep track of the game by listening to their talk.

‘Na man, that was travel!’ one of them shouted.

‘Two points! Yeah, suck it!’ another exclaimed.

Three of them played with the ball while I stood at the side of the court and played with my fingers. I enjoyed listening to them play, hearing their excitement when they got a swish and listening to their banter on the court. But my smile slowly disappeared when I heard a voice that I didn’t recognise.

‘How about you three versus us two?’ the voice said. It was a guy. His voice was deep and confident and he had a wog accent, but I could tell he wasn’t an adult.

I could see that the two…

‘I hate you.’

That was always my first thought when she spoke to me – my geneticist, Dr Agatha. My hate piqued not when my mum drove me to her appointments or when I stepped into her office, but when words emerged from her mouth.

‘Emil,’ she continued, ‘if your mum and I both stepped on these scales we would weigh the same as you.’ She stood atop the scales in her office. I eyed those scales with dread. At 14 scales embodied my fears. I still don’t like them.

I couldn’t look at them any longer. I turned my attention to the other side of the room, bypassing her qualifications hanging on the wall and the ugly painting of a field.

These appointments were always so negative. I tried especially hard today to pretend I was too sick to come but it wasn’t enough. My mum saw through my…

The dim features of a dejected face stared back at me from the mirror; a face covered in bandages, looping from chin to scalp. The shape of my face had changed after the jaw surgery. Even with the bandages holding my jaw in place I could tell its structure was different – and not any more comfortable like it was supposed to be. The discomfort cam from surgery to fix my overbite.

Toothpaste sat glued to the bristles of my toothbrush. It was going to be another day eating and drinking through straws. I couldn’t wait to have my mum’s roast chicken and roast potatoes again. That was the worst thing about jaw surgery – not being able to eat my favourite food. Well not even my favourite food, just food altogether.

Brushing teeth was a mundane task any day of the week, but brushing teeth with a strapped jaw…

The door was closed for a long time. I sat in the waiting room of The Doctor’s office and stared at it from across the room. I waited as my mum instructed me to wait while she talked to him. On this occasion I didn’t understand why I couldn’t be with her in the appointment like I normally was. But I also didn’t mind waiting outside his office; I hated doctors at that age. So I sat quietly and stared at the closed door, wondering when it might open.

‘He’s going to lose his sight in his 30s, Elham,’ The Doctor said. ‘That’s the norm for sufferers of Bardet-Biedl Syndrome.’

My mum sat silently opposite The Doctor as he said this. Her expression was strong and still. There were no tears left in her eyes. She sat opposite The Doctor and listened silently to his diagnosis.

‘I’m afraid he won’t…