Thirty-nine years ago I was born in a cold, dingy hospital in a west London suburb. According to family lore there was a clash of thunder as I was born. An out of season thunderclap welcomed this sick baby into the world, blue and quivering and too weak to cry. My mother had delivered a science study. Mere hours after my birth she stood shivering, barefoot in the doorway of her hospital room as nurses whisked me away.

I have lived with a truncated future.  In my teens I was told that no one had ever lived with my condition past the age of forty.  At the time, like most young people, I found the idea of my own death abstract and distant. But as is the way with the psyche, the expectation of shortened life was stored away like a shadow.  As I lived on, through sickness and health, relationships and break ups, moves both career and geographical, the shadow grew longer, deeper and more insistent. I could not imagine living past a certain age and thus when my friends were planning their futures I lived only existing within days, weeks and months, rather than years.

Now that I have arrived at what is meant to be my last year, I’m documenting my encounters with wellness and sickness and what it means to live everyday moments while fighting for life.