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He took another sheet of paper from his notebook, ran his eyes down it.
‘It says that your brother Charlie was diagnosed with Batten disease at the age of five and that his
condition began to deteriorate rapidly after that. His diagnosis came about a year after you were born,
Rachel, at around the time that this picture was taken, but he was already experiencing some of the
symptoms.’
‘He looks OK in the photo,’ I said. He did. He was lovely: sunny-looking, vibrant, snug in his
family’s embrace.
‘He’s not,’ said Nicky. ‘He was beginning to lose his sight. Look at the photo. You’ll see that he’s
not looking at the camera properly. He’s looking above it. It’s because he only had peripheral vision
when that was taken. He had to look out of the bottom of his eye to see anything.’
She was right. The little boy was staring at a point that was above the camera.
‘He was totally blind soon after that,’ Nicky said. ‘And then he stopped being able to walk and
stopped being able to talk, and he had to be fed with a tube because he couldn’t swallow and he had
epileptic fits. The disease took him away from us piece by piece.’
‘You loved him.’
‘I worshipped him.’
Her words seemed to hang for a moment between us, and when she spoke again it was hushed.
‘He didn’t deserve it. I would’ve helped them. I would’ve helped them to look after him until the
end, but they couldn’t stand his suffering. Mum blamed herself.’
‘Why?’
‘It’s an inherited condition.’
‘But we don’t have it.’ I was struggling to understand.
‘Not every child gets it. It’s a matter of luck.’
‘So they jumped off a cliff with him? That’s so extreme.’
Nicky simply nodded. She’d turned her head away now, and I could only see her profile, as she
looked fixedly towards the dim winter light that filtered through the kitchen window, washing her
features with grey.
‘But why would you do that if you had two other children?’ I asked.
Clemo replied, ‘The coroner’s report does shed a bit of light on that. Apparently, because the
condition was inheritable, they had had you tested. They were waiting for the results when they took
their lives.’
‘But I’m fine,’ I said. ‘Why didn’t they wait for the results?’
‘Your mother had convinced herself, and your father, that you would not be fine. By then she was,
as far as we can gather, extremely depressed and unstable. She told her sister, your aunt Esther, that
she would not be able to cope any longer if you were also diagnosed with Batten disease, and your
father had never coped well. The report mentions that she spoke of feeling very isolated. There was a
stigma to mental and physical disability in those days and your mother was not very emotionally
strong. The coroner concluded that the strain of caring for Charlie had affected your parents
profoundly. They felt that they had no option.’
‘It makes no sense.’
‘Things don’t always make sense,’ said Clemo, ‘especially when people are under duress. We see
things you wouldn’t believe.’
I resented the way he was trying to reassure me, as if he hadn’t just turned my world upside down,
and I didn’t want his words to distract me, because there was something else I needed to ask.
‘Why did our names get changed?’