What is the hardest thing that has happened to you, and what did you carry out of it?

To so many people, I am no longer just myself. I am a reminder of a thought that is difficult for the rational brain to accept: that the elements that constitute our bodies might fail at any moment. When I originally got my diagnosis at age 35, all I could think to say was, “But I have a son.” It was the best argument I had. I can’t end. This world can’t end. It had just begun. A tragedy is like a fault line. A life is split into a before and an after, and most of the time, the before was better.

It went past being hungry; it was actually painful in your stomach. I could feel my intestines twisting in the middle of the night. I would scream to my grandmother and she would get me sugar water and it would settle it down. A lot of my values come from being resilient. The people from my community might be poor financially but they are happy, proud and resilient people.

For me, school was probably the most traumatising and most difficult part of my life. I already was being bullied at the age of six. I think at the time, (at) that particular school, I was probably one of three kids of colour and just bigger, stronger, bullying kids were throwing me around a lot of the time.