In the weeks that follow the spare-room revelation, darkness rushes towards me, as the shadow of the moon rushed over the sea.
Outside the house I no longer leave, summer opens its jaws wider each day, revealing more of its teeth. With each rotation of the earth, the sun bounces up earlier in the morning, arcs higher, lingers longer around the shrinking pool of night. I have to keep the curtains closed, at first only halfway, then fully; at first only to keep out direct rays, then against the mere glare of the day, while the sun itself is busy round another part of the house.
Pete searches the Internet on my behalf. He finds a support group for people living with light sensitivity—part of the charity Lupus UK, but including members whose light sensitivity arises from some other source.
The name of the group is Eclipse.
There is a list on their website of products that might prove useful. We throw money at the problem—it seems rational to try everything.
A man comes with a squeegee, a spray gun and a large roll of clear film. He spends a morning filming most of the windows of the house. The film stops the transmission of UV light, the highest and most damaging frequency.
I order UV-protective clothing from a specialist company. It is made of densely knitted nylon and Lycra, slightly stretchy, not very aesthetic. I have a hooded top and loose trousers in pale blue, plus grey socks; I feel like an extra from a science-fiction film.
For a few days, inside my new packaging, I have some relief. I seem to have found a plateau of stability where, if I live within certain parameters, my skin will not burn. I relax, even become cheerful, joking about my new suit.
But the stability is an illusion, the sensitivity soon on the march once more.
The experience is like falling over a cliff in slow motion. After each lurch downwards I think I’ve found a toehold, or a shrub to grasp to break my fall. I’m sure, each time, I must have reached a stable place, a place where, despite my undignified position, I can at least not slip further, can start to consider the options for climbing back to the top.
The ledge crumbles, the shrub rips from the cliff face, every, every time.
I lose myself in thick absorbent books. On Pete’s bookshelves I find the complete works of Jane Austen in a single volume, leather-bound in red. I start Sense and Sensibility sitting at a table in the living room with the curtain slightly open, but my posture becomes increasingly bizarre. After a few days I am crouched on the floor, screened by a wall and an armchair, hunched over to catch the faintest flicker of print.
A few days later, Pete comes in from the local summer fete, carrying a big bag of books. He had been helping as usual on the second-hand book stall and has not been able to resist purchasing some of its wares. He finds me cross-legged on the sofa, in a curtained room, most of my body under a thick black padded anorak, wrapped around like a blanket, and I am reading Persuasion, by the indirect light that comes through the kitchen door.
“This seems to work,” I say to him, indicating the anorak, and I even smile. “Let’s see what you got.”
I think he is appalled, but he does not let it show. We look at the books he has bought. I am burying my head in alternative realities, forcing it out of my own.
SOME TIME IN the middle of all this is my follow-up appointment at the hospital. The idea that I could leave the house, let alone get to London, is laughable. I phone the photobiology clinic and explain my situation to the medical secretary. “OK, I’ll cancel that for you,” she says. “Give us a ring when you’re feeling better.”
I am not in a fit state fully to appreciate the irony of that response.