The first time Luke tried to walk outside on his own he was about seven. It had been his favourite threat for a couple of years; the most effective way of blackmailing his mother and making her buy him more books and magazines. Buy Whizzer and Chips for me, Mum. ‘No, Luke, you had two books yesterday.’ I’ll walk outside. ‘Don’t do this to me, Luke.’ I’ll walk outside and I’ll die and you’ll wish you’d bought it for me. ‘Please, Luke, don’t.’ His mother always had a squeaky voice, pleading and whiny. And her hands always shook, even when there was nothing to be nervous about.
Eventually, of course, she knew she would have to call his bluff. She phoned a radio phone-in show for advice. ‘Your son is spoilt,’ the agony aunt told her firmly. ‘Stand up to him. Show him who’s in control.’ So she did. On a sunny day in spring 1982, after one tantrum too many, she said, ‘OK, then, walk outside if you want to.’
The argument took place in the kitchen on a weekday when Luke’s father was in Yorkshire. Luke’s mother called his bluff in the dark, orange kitchen, the morning sun turning everything orange through the heavy curtains, the dust hanging in the air, orange, like everything else.
Luke’s small body felt even smaller.
His mother said, ‘Go on, then, kill yourself. See if I care.’
He started to cry. He felt alone and cold; still in his Batman pyjamas, because he’d refused to get dressed. His mother pointed to the back door. Her hand shook. She repeated her words but they didn’t come out properly and she started to cry too. Luke didn’t want to upset her, and really wanted a cuddle, not a fight. But he couldn’t change his mind now. He would rather have died than let his mother win and have this control over him forever. He felt sick and small, as if he was shrinking. He had to do something before he disappeared altogether. He knew this was his moment of eternity. Nothing mattered beyond this moment; not today or yesterday or his life or anyone else’s. He dimly remembered what today had been like before this moment and he wished he was back there but he wasn’t. He felt even smaller. Everything around him seemed bigger. He ran the few steps to the back door.
At first it wouldn’t open. He pulled at the handle and kicked at the door.
It must have been at the moment his mother realised that he was actually going to do it that she screamed No! and started moving towards him. The door opened before she reached him and Luke stumbled out into the spring morning, the air intriguingly cold and fresh, the gravel drive stinging his bare feet. As his mother reached to grab him they both fell. The last thing Luke saw was the amazing blue of the sky, purer than any colour he’d ever seen.
He was unconscious for half an hour. When he woke up in his bedroom, the doctor was there.
It was really crap being seven, wanting to go out and explore and make friends but actually being stuck in a dark, hot house instead. The only friend Luke had – and he was only a half-friend, really, because Luke didn’t really like him, and he didn’t really like Luke – was Mark Davies from across the road. Mark would come over sometimes with his dad. While Mark’s dad and Luke’s mum talked downstairs, Mark and Luke would play with the toys Mark brought with him – trucks and cars, mainly – and Mark would fantasise about owning a Scalextric and Luke would find him slightly boring, but less so than his normal life. So Luke played along with Mark’s fantasies, and was Robin while Mark was Batman, and explained time and time again why he couldn’t go outside.
Luke spent a lot of time naked, especially during the long, hot, early-eighties summers when it was mainly just him and his mother in the house during the week and some weekends when Bill was at work. It bothered his mother, which was one of the reasons he did it, but she didn’t challenge him very much after the kitchen-door incident. Luke hated his nylon and polyester clothes, even if he could make fireworks from them in the dark. It hurt, anyway, when he did that.
All Luke wanted were books and magazines. He needed lots of reading material, typically getting through six or so books a day, but of course he couldn’t go to the library to choose his own books, so he had to try to explain to his mother what to get – and then threw tantrums when she failed. He became pretty resourceful. At six, he’d worked out how to phone children’s publishers to get their catalogues, so at least he knew which books were coming out. He sometimes told the people who answered the phone (nice ladies, mainly) about not being able to go out, and sometimes they sent him free books, which was brilliant. His mother didn’t believe he could read at such a great speed but he didn’t care what she thought.
When Luke’s dad came home on weekends, Luke would sit on his knee and tell him about the worlds he’d travelled to that week – the Faraway Tree, Narnia, Kirrin Island and all the others. At that age it was easy to travel to the completely imaginary worlds in children’s books – it simply became harder as the books became more realistic. By the time they invented issues-based ‘teen’ fiction, Luke was watching TV more than he was reading anyway. He tried a couple of titles that one of the publishers sent him, but could find no way of understanding the broken families, bully-infested schools and general misery in the books. But when he was seven, books like that didn’t exist and Luke had no TV. His world was full of magic.
On Friday nights, Luke’s dad would drink a glass of Scotch or two, and the more of the dark-orange liquid he drank, the more interested he’d become in Luke’s other worlds.
‘You went through a wardrobe?’ he’d say. ‘Heh heh. Hear that, Jean?’
Luke’s mother would sigh and ask when Luke’s dad would be ready for his dinner.
The rest of the weekend, Luke would barely see his father, as he’d be busy working on the car, fixing things on the outside of the house or shopping in town with Luke’s mother.
‘He’ll probably grow out of it,’ the doctor said to Luke’s mother.
‘I didn’t think people grew out of XP,’ said Luke’s mother.
‘It’s not necessarily XP,’ he said. ‘Remember, we talked about this.’
Luke was listening to the conversation with his eyes shut, pretending not to have come round yet. He didn’t want to open his eyes and lose the incredible image of the blue sky he half-saw.
‘Yes, but . . .’ Jean stammered.
‘We just have to wait and see. It could just be childhood allergies.’
Luke never saw that doctor again but for years he couldn’t shake the hope that the doctor was right and he’d be able to go out one day. The next doctor he saw, when he was about eleven or so, was a friend of his parents’ – Dr Mackay. He seemed excited to have a patient with XP and wrote a paper about Luke which none of the medical or scientific journals published even though he’d been sure they would.
Dr Mackay was still conducting allergen tests when the social worker, Mrs Murray, started visiting. Luke remembers her being a well-meaning lady with a sourness he later realised was just a lack of humour. She asked him questions about his friends, his home tutor, and his hobbies, and Luke said everything was fine because he’d got it into his head that he’d be sent to a home if he didn’t say the right thing. Eventually the doctor and the social worker both stopped coming, satisfied that Luke’s disease was incurable, that he was comfortable and, crucially for the social worker, that he wasn’t likely to commit suicide or go mad.
At sixteen, there was one more doctor’s visit, and after a brief examination of Luke’s medical records, the doctor signed some forms that meant that Luke started receiving some sort of sickness benefit which he never understood. His mother applied for it, and she still collects it and puts half in the bank for Luke, and takes the rest for rent and food and bills. Occasionally she asks Luke to sign forms that always seem to come in the same A5 brown envelopes.
Luke hasn’t seen his father for years. He’s not even entirely sure what happened between his parents; all he knows is that one Sunday evening his dad went to Yorkshire and it was a few months before everyone realised he was never coming home again.
And apart from XP, and a couple of colds, Luke has never been ill in his life.