Beginner's Luck

"My younger brother and sister died when I was a child." For 45 years this was all that I would ever really say about it. Until my parents died.

This project is about survivor’s guilt and the catharsis that can come with grieving. It is also about releasing a long-held burden. Only later in life did I understand that I’d not dealt with my own grief from this traumatic period. After my parents died I finally felt that I had a voice in this story.

When my parents got married in 1967, neither of them knew that they were both carriers of an ultra-rare genetic condition. They both had one faulty gene each, and because both of them were carriers a genetic lottery started when they began a family. I am the eldest, born in 1970. My genes are totally unaffected. However, my younger brother and sister both inherited two faulty sets of genes, which was to prove fatal. Only when I began this project did I discover where the fault lay: a missing enzyme on chromosome 17.

My brother Rupert was born in 1973 and my sister Caroline was born in 1974. They were both under a year old when they died, and neither child was alive at the same time. Back then their deaths were unexplained. As a family we became a kind of 'medical curiosity', as my dad used to say. Eventually we were given a name for this fatal genetic condition: Pompe disease. Due to its rarity, diagnosing it is difficult. Recent estimates (Emory University School of Medicine, Georgia) suggest only 5,000 - 10,000 people in world have Pompe.

In 2017 my mum died, followed three years later by my dad. Now I had the task of clearing the family home in the village of Burnham, near Slough. My parents had moved into the house in 1967 and they’d never left. It was crammed full of possessions.

Between 2021 and 2023 I photographed the house and its contents as I brought it to a state of emptiness. In the house I worked entirely on my own. The project is in part a record of clearing the family home, and uncovering the stories it contained. I documented the spaces on 5X4 film. I became fascinated by the changing light, the clutter, the objects and the dirt. I placed individual objects on a plain white paper background and I photographed them digitally using overhead natural light from the conservatory roof. I wanted these objects to speak for themselves. In particular I wanted to tell my family story and to explore my own feelings through photography. The pictures shown here are a small selection of a much wider edit encompassing different lens-based media. The photography part of the project is now finished, and I am working towards both a book and an exhibition. I have also worked with others to produce some of the images in this series. These include the two X-ray images shown here, which were commissioned and produced in collaboration with photographer Hugh Turvey who specialises in X-ray imagery.

Above all I wanted to find pictures for places and things where there were no pictures. I wanted to show what was missing and what remained. It has been a strange form of inheritance.