People continue to search online for something—anything—that could help. Parcels of A4 printouts arrive for me in the post from friends of mine, of Pete’s, and of my mother’s, to whom, in desperation, she has poured out my story. There is a lot of information about photosensitivity, but nothing about photosensitivity as severe and unusual as mine.
Then, suddenly, from two directions, there is news: a scientific paper describing a case like mine in Sweden, and, via another support group, a contact for a real live person, living in the UK.
Somebody else like me.
His name is Jake and he lives in Manchester. He is in his thirties. He is excruciatingly sensitive to all forms of light.
I speak to his partner on the phone. “What he has found,” she says, “is that if he spends time in a completely blacked-out room, his skin builds up a bit of resilience, and he can tolerate some limited light, for a while, when he comes out.”
As soon as she says it, it makes sense to me. Already, in a confused way, I have been groping towards a similar conclusion. Scoured by the sun each day from 4 a.m., I know that normal curtains are no longer an effective bar. Now I have a clear picture of what I need, and, in anticipation, my skin breathes a sigh of relief. I start to yearn for the dark, I want it now, I do not want to wait. A dying traveller in a desert strains to glimpse the saving glint of water; I long for the space before my eyes to void itself of every hint of light.
It is not easily achieved. Materials and fixings must be obtained, and even after they are installed, I have to resort to foil.
When I have finished, I lie exhausted on the bed. I feel as though I have completed a long and arduous operation involving the amputation of one of my own limbs. In fact I have merely hacked away the light from my life, but it has been a procedure equally grisly, complex, necessary, traumatic and appalling. Around me in the darkness the carpet, the walls, the curtains and the bookshelves swim with invisible gore.
I am beyond thinking. I have reached my vanishing point.
AFTER A WHILE I come round, to find strange sounds emanating from the room below. There is jeering and yelling, and the rise—rise—rise—and fall of commentary. Pete’s voice suddenly exclaims, “Oh!… ah …” then “YESSS!”
It is the World Cup of 2006, and somebody has just scored a goal.