The Museum of Modern Love(19)

Levin had been too numb to reply.

Out on the street, he said to Alice, ‘I have to see her.’

‘Dad, you can’t. She doesn’t want that. Weren’t you listening?’

‘How can you be sure?’

‘I’m not going to get in the middle of you two. I told you that in there. But you have to listen to what she wants.’

‘What about what I want? You all seem to have decided everything without any concern for me or how I might feel. She’s my wife. We’ve been married almost twenty-four years.’

‘Dad, what’s her condition called?’

‘TTP.’

‘What does it stand for?’

‘Thrombo-something. It’s unpronounceable.’

‘Thrombotic thrombocytopenic purpura, Dad. It’s not so hard.’ She said it kindly.

‘I guess that’s why you’re going to be the doctor in the family.’

Levin didn’t want to think about how Lydia looked. Was her head lolling? Did she make those terrible sounds he’d seen stroke victims make as they tried to talk? Did she dribble?

If Lydia came home, Kawa might be his last score. New York was no place for walking sticks or wheelchairs. They’d have to go somewhere suburban. To some place called Sunshine Gardens or The Evergreens. They’d never travel. They’d need to live somewhere with tepid summers and flaccid winters. To live that way would be like being dead, Levin thought. She had saved him from nursing staff coming and going. From a house with railings in the hallways, handholds by the toilet and rubber mats in the bath. She had saved him from a plastic chair in the shower. She had saved him ramps and mushy food and the smell that sickness and decay brought with it.

He had found it difficult enough when she got ill to catch the smell of her. He didn’t like what their bedroom became or how the malaise of her illness seemed to sap him of creative energy. Suddenly he was meant to tiptoe in his own house. Had to share the kitchen with medical staff he didn’t know and would never remember. He couldn’t stay up late playing the piano because she needed to sleep. He had to work on his keyboard under headphones.

There was no Lydia to go out with. Meals became some arrangement on trays like old people. And he would order exactly what she’d wanted, only to have her eat barely a mouthful. Or be too tired to eat at all by the time he got back from buying takeout. And if he went out with friends while Lydia was sick, it put a pall on the whole evening. He quite liked it when she went to hospital for transfusions because at least that way he could imagine she was travelling. He could watch the season reruns and stay up as late as he liked, turn the music up, sleep in their bed instead of in the guest room, which was always depressing to wake up in.

He hated how the whole world seemed to be set up for two things: illness and death. Lydia’s mother had died of the same condition when Lydia was a child. Her father had ensured Lydia had the best of everything—schools, specialists. New York was good for that. And then Lydia became an architect and her work was extraordinary, despite everything. She might have had her mother’s physiology, but in other ways she was her father’s daughter.

Once Alice was in her teens, she did the runs to hospital with things Lydia needed. But Lydia’s absences, knowing she was in hospital, watching the increasing frequency of attacks, the complication of medications, had always been terrible for Levin. It wasn’t how he’d imagined life would go. He had thought of them as they got older taking walks, seeing movies. Spending summers in Europe. He wanted to go back to Vienna with her, to London, to Spain. He wanted to have her beside him when they heard the Berlin Philharmonic again.

Was he really meant to give up his own life to care for her every hour of the day? Had he really signed up for that? She didn’t want him to. That was why she’d done what she’d done. She’d given him his freedom. Something better for both of them. Wasn’t he doing just what she had prescribed? That’s what she’d said. Go and write. Make wonderful music. Know that I love you. Have no regrets.

She might live another five years in her current state. Or another two. He had no idea. But she wanted to do it without him. She hadn’t asked for a divorce; she’d simply ensured he could not come and visit. Alice could visit. But Levin was freed from the obligation to spoon wet goo into her mouth or help her to the toilet. Maybe now she wore diapers. This was a hideous thought and he put it away again immediately. For better or worse? It was old-fashioned, he decided. Worse could be dealt with in a modern way. Care could be bought. Services could be acquired. Science, technology, it had all created options. If there was money, then why should anyone lose dignity? He did not have to see Lydia when nothing about her now was the woman he loved. And he could continue his life. It was tragic to lose her, but it would have been more tragic for them both to be prisoners to the one fate. Surely.

Unbridled selfishness. The words came back again to haunt him. Was living his life selfish? Was his one quiet life really doing harm to anyone else? Lydia was looked after. She had the best care money could buy. Science might yet save her. Alice visited. Alice was her medical power of attorney. Alice would know if there was anything that wasn’t being done properly.

‘She’ll really never walk again?’ he had asked Alice, during one of the rare meals they’d shared after Lydia’s stroke.

‘They say not. I mean, they have to help her sit up. They strap her into her wheelchair because she likes to . . . Are you okay? You must have imagined that one day it would come to this.’