We sit in the dark and eat, laugh, play piano. Going out to socialise is impossible, but family and friends bring new people to visit. One of the advantages of living without light is you don’t have to worry too much about appearances. They’d forgotten about me.Īt home, I have a cap with a torch attached, which I use for 15 minutes at a time – while preparing food, painting, washing. As soon as I arrive, they put me in a darkened room. When I go to hospital, I wrap up similarly. If I wear a hat, hoodie and gloves, I don’t burn so much. I refuse to live without fresh air, so I go for a walk at 5am each morning, as the streetlamps are going off but before the sun has risen. There are times when exposing myself to light is unavoidable, of course. I spend 18 hours a day in total darkness.
I bought a small laptop to watch TV – even with that, I have to wrap up in blankets before I switch it on. Friends brought weekly groceries and essentials.
I took out most of the lightbulbs and blocked the oven glass with tinfoil. We blacked out the windows with paper and cloth. My friends and two grown-up children helped me arrange everything. I had an art studio in the bowels of an old building in San Francisco and the owner let me convert storage space there into an apartment, where I’ve been since. But I also knew I wasn’t going to let this beat me.Ĭarrying on living where I was wasn’t practical: I needed somewhere with fewer windows and closer to hospital. I was an artist but I couldn’t switch on the lights to work. Even opening the fridge would set my body tingling.
I kept the curtains drawn, but just the light seeping in at the edges caused irritation. Includes unlimited streaming of Living In Darkness via the free Bandcamp app, plus high-quality download in MP3, FLAC and more.
Exposure to light on any part of my body caused the skin on my neck, face and torso to burn. I told my doctor and, after tests, I was diagnosed as photosensitive. I thought about the choir and how we stood under bright lights, and something clicked. I felt a tingling on my ankles and noticed my neck blistering. Then, one afternoon, I was outside in the shade with just my feet in the sun. I used to sing in a choir and I noticed the rash would be most severe in the days after practice.