Many people come out of it not being able to live independently. Encephalitis tends to change you socially, intellectually, emotionally and physically. They have had two lives, before enceph and after. I’ve been an ambassador of the Encephalitis Society for many years, and everybody I’ve spoken to who’s had it says the same thing.

My brain made a good recovery, but I came out of it a very different person. But it couldn’t have felt less low-grade. They labelled it “low-grade” chronic viral encephalitis because if it had been anything more I couldn’t have survived over that period of time. The experts didn’t know how I’d had encephalitis for so long without popping my clogs. When I eventually returned to a regular school three years later, I was regarded as a bit of a miracle child in medical circles. Having said that, given how I was feeling at the time, I might well have begged them to chop out the whole lot. I guess if they’d told me they were going to cut a little bit of brain out it might have put me off. At the time I was told by the doctors that they were going to have “a little look inside”. My head was opened and a biopsy was taken of my brain that showed I had encephalitis. Photograph: Courtesy of Simon Hattenstone ‘I’m one of the lucky ones’ … Simon at home in Manchester, aged 11. One in 10 people are still estimated to die from it, and back then misdiagnosis was common. It was the best part of a year before I was diagnosed with encephalitis – inflammation of the brain – a relatively rare but dangerous condition. I felt as if my head had caved in, that I was detached from my body, and regressed to a little boy who just wanted to play with baby toys. I lived much of the next two years in darkness. Then one day I woke up with a burning headache, high temperature, and an aversion to light and noise (actually pretty much all sound). Bury Old Road in Salford was my Route 66 – I’d fly down it on my Chopper, wind in my hair, embracing the freedom. At the age of nine, I was racing around the neighbourhood on my bike delivering messages and cakes for my mum. I had been an A1 swot until then – loved school, was a quick learner, and was super independent. When I was a young boy, my brain took a beating. And now, at the age of 60, those doubts are increasing. I’ve had doubts about the old grey matter for a long time.

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