The light seeping in at the edges of the curtains caused irritation. Watching TV became painful. Even opening the fridge would set my body tingling

In 1987 I was diagnosed with HIV. Back then, it was a death sentence. I watched friends and loved ones dying around me. I’d served in Vietnam and it felt like something similar: one amazing person after another falling away. All still young. All still with so much to live for. Somehow, I survived both, and since the 90s have constantly been on different medication that has kept me alive. But 10 years ago, one of these drugs – or some combination – wrecked my body in a way doctors still don’t understand. Aged 53, over a period of three or four months, I became allergic to light. I have had to live in pitch black ever since.

It was 2007 when I started breaking out in an itchy, burning rash. It would start suddenly on my neck, then spread to my face, chest, shoulders and back. Doctors assumed it was a medical allergy and changed my prescription. But it got worse until at times my whole body felt on fire. It was as if my skin was being held against a flame, searing for days on end.

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