The gene that had been handed down from parent to child in Huddie’s case caused his disease. Muscular dystrophy comes through the female line, but it is boys who are affected. The problem was a mutation of our mother’s X chromosome, so that was one more thing we had to blame her for.
I had read that sometimes, when there was a disease in the family, people felt that they should become experts on it, as if understanding the disease could help fight it. Nobody else in our family had tried to learn much: they did not travel the world looking for the radical doctor with the unconventional treatment. They did not trawl the internet for glimmers of hope from other sufferers. They did not have coffee mornings or carboot sales to raise money for research. Iz had never given a benefit concert for muscular dystrophy, although he would give one for the victims of oppressive regimes. As regimes went, I thought, Duchenne was a pretty oppressive one.
Despite the research I had done, all you really needed to know about the disease was that there was no cure and it killed you. It was not one of those conditions like multiple sclerosis where you could survive for many years. I knew that the chances of Huddie living beyond his teens were slim. I did not have much faith in hope. Hope did not alter the course of events. People sometimes said things to me like, “He’s strong. He can beat this,” but as far as I was concerned, muscular dystrophy was not an arm-wrestling competition. Anyway, Huddie was not strong, he never had been.
Over the years, many people had asked me what the symptoms of the disease were. I explained it like this: there are more muscles in the body than you might think and muscular dystrophy makes them gradually deteriorate. The heart is a muscle. Chest muscles make your lungs work. Even eyelids have muscles. What happens is that finally you are unable to use the organs that your muscles control. There is an inexorable logic to muscular dystrophy: one muscle after another fails, like fuses tripping, and then you die.
Maybe I painted too bleak a picture sometimes, but I did not want people to be unrealistic about Huddie’s chances. He was in a wheelchair now because his leg muscles were completely gone. He did not have much power in his hands, but there was still a little in his fingers. If I placed them on the computer keyboard, he could type a little, but that, too, seemed to be getting harder for him now. For the time being, Huddie still had some power in his chest muscles to get rid of the fluid on his lungs, but his throat muscles were not in good shape and he found it difficult to swallow his saliva. When I was with him, I kept a hanky to wipe his mouth. He would pause while he was talking and I would lean over so he could dribble into the hanky. Spitting requires muscles.
I was surprised that Huddie could be as cheerful as he was. When we played Monopoly, even though I had to move the pieces for him, he laughed gleefully if he was the first one to get a hotel on his property. If he lost the game he sulked. Someone once said that they hoped Huddie was “hanging in there”; I presumed that one of the things they were asking was if he still had the ability to move up and down the spectrum of feelings from happiness to sadness, from laugh to sulk, rather than just flatlining into depression. Yes, I said, for what it’s worth, he is hanging in there but that will not extend his life. I did not want people to underestimate the logic in the disease. I did not want them to talk about the power of positive thought.
It would be unfair to say that nobody in our house apart from me took much notice of Huddie, but it sometimes felt like that. Maybe Iz would have done stuff with him if he hadn’t been old and ill, but maybe not. He certainly hadn’t spent much time with us when we were children. There were several different carers who came in every day and did the practical stuff like the loo and washing him and putting him on the respirator which he often needed, and the doctor came about every ten days to examine him.
It wasn’t really much of a life for Huddie but together we got as close to creating one as we could. I didn’t have much of a life either and he did as much for me as I did for him. He wanted to hear about what I had been doing at school and what I did when I wasn’t with him. I had to exaggerate a little because if you have to live vicariously you want to live through someone who at least has some good stories to tell. I made out to Huddie that I lived a life full of teenage activity — gossip with friends, boys I fancied, school trips I took. But I didn’t really gossip and there weren’t any boys I fancied much. School trips were to places like the Science Museum, where I had been far more often and knew far more than any of my teachers. I found a lot of them rather limited. I liked learning on my own — my pace was faster than theirs.
I was not solitary by choice. At school I tried to be friendly. There were girls I could pass the time of day with but I knew they would have preferred someone else to sit next to them at lunch. They did not invite me to their birthday parties or to go outside the school gates to smoke with them. It was lucky I had Huddie. He was all I really needed. He was so bright and funny even though nobody except me really got his sense of humor. He knew so much about so many things. If he had not been dying, I think he could have achieved anything.
The school holidays had begun, so I could spend more time with Huddie. On that day, as usual, I gave him his breakfast — mostly liquid — which always took a while to do. Then it was time for his teeth. I bent his fingers around the toothbrush and helped him raise his hand to his mouth. He was not going to win any teeth cleaning competitions, but what did it matter if he needed a few fillings?
I helped him with deodorant. He used a roll-on one because he could not press the button on a spray so I put it in his hand and then raised his arm so he could rub it on. I wanted him to do as many things as he could, while he still could. Next, even though he did not need to shave every day, he jerkily raised his chin and I sprayed a little aftershave on his neck. We had almost finished the bottle of CK One and we had talked about moving on to something else so I had got him some little sample bottles to choose from. Then we did his trousers. Huddie was very particular about cleanliness: because of the food stains he liked his loose tracksuit bottoms to be changed several times a day. That was easier said than done because it was hard to pull them off without him raising his backside. He had perfected a little squirm which normally helped get the job done. Our morning routine was easy and unself-conscious. We were like a couple who did ballroom dancing — we knew each other’s moves by heart.
After we had finished all the early morning stuff, I pushed Huddie to his desk and turned the computer on for him. Just then, the door opened abruptly. It was Joan.
“Could I have a word?” she said.
I exchanged a glance with Huddie and went out into the kitchen with her.
Neither Huddie nor I had really taken to Joan. For one thing, we thought she looked like a witch. She always took her shoes off and glided silently round the house. You never knew when she might appear. I was cross with her now.
“You know, Joan, maybe you should knock when you come into Huddie’s room.”
Joan looked taken aback. “Well, I’m sorry,” she said in an insincere voice.
“I’d knock if I came into Carla’s study.”
“Well, we’re working. We don’t want our concentration broken.”
“Huddie’s working.”
“Oh, I thought he was just listening to music on his iPod.”
“Actually, I download talking books onto it for him,” I said coldly. “He’s listening to Thomas Hardy. I’m the only person who reads to him now, but I can’t do it all the time. Everybody else is too busy these days.”
Joan ignored that. “Oh, Thomas Hardy,” she said scornfully. “All those downtrodden women up to their knees in Wessex mud.”
I did not want to go on with this. “Was there something you wanted?” I said as politely as I could manage.
“Carla and I need the kitchen and dining room tonight from about six. Our group is coming round and we’ve got to do food for them.”
“What group?”
“Carla and I are planning a concert at the Magpie’s Nest. W
e’ve got an advisory group together. We’re calling it ‘An Evening of Sister Songs.’ ”
“I didn’t know you sang.”
“I don’t,” Joan said. “I’m Carla’s manager.”
“Since when? She’s never needed a manager before.”
“That’s because she’s had to be a housewife up to now. Her singing career is going up a notch or two. It’s her turn.”
I laughed. “Carla’s never been a housewife! She’s never done any cleaning. The only thing she can cook apart from toast is Boston baked beans.”
“And why should she cook, young lady?”
“I’m not saying she should. I’m just saying she doesn’t.”
“Anyway, maybe it’s time you looked after yourselves.”
“Huddie can’t look after himself. Nor can Iz.”
“Actually, we’re thinking about getting a professional carer for Iz. It’s too much for Carla.”
“Lally does most of the caring for Iz.”
“A medically trained carer.”
“Huddie has a carer. Now Iz is going to have one, too? Are we going to have one each?”
“Very funny.”
“Why are you involved?” I said.
“Carla’s got so much on her plate. I’m just trying to help.”
“I can’t just not use the kitchen tonight. I need to do Huddie’s food at eight.”
“Can’t he eat earlier?”
“He has to eat at regular times.”
“You know, Rose — of course Huddie’s got problems but maybe it would give him more self-respect if everyone didn’t treat him like an invalid.”
“He doesn’t need lessons in self-respect from you, Joan. Or anyone.” I left the kitchen and went up to my room and slammed the door.
Within a few minutes, I could hear Carla come downstairs. I knew that Joan had sneaked on me. “Rose?” she called. “Where are you?”
I came out of my room and stood in the doorway with my arms folded. Carla came forward and took me in her arms.
“Oh, Rose,” she said. “Please help me.”
Carla was still attractive. She had a lovely voice, still American but softened by her years in England. Her hair was hardly gray at all. She pinned it up so loosely that it gradually fell down as the day went on. Her skin was unlined and she never wore makeup, which everybody else her age seemed to do.
She did not sound cross, but then she was never cross. She seemed to glide through life unaware of other people. Obviously, Joan was an exception.
“Joan can be awkward, Rose. Things don’t always come out the right way,” she said.
“No,” I said.
“People sometimes hide their vulnerabilities.”
I did not understand why someone would want to hide their vulnerability under a layer of rudeness and aggression. It might be better to do it the other way round.
“She doesn’t care about Huddie.”
“We all care about Huddie, Rose.”
“But nobody spends any time with him.”
Carla gave a sigh. “You know, if anyone had asked me when I was twenty what it would be like in my fifties, I would have said they would be the serene years, but they’re not. There’s so little time — everything is so difficult.”
“If someone had asked Huddie when he was twelve what it would be like when he was fifteen, I don’t think he would have said anything about serenity.”
“Oh, Rose, everything’s so black and white for you. You’ll…”
“Please don’t tell me I’ll understand when I’m older.”
Carla took my hand. “All I want to do is to sing again, do some little concerts. I think I’m owed that, aren’t I?”
“When you used to do them, Iz would come on and sing at the end with you. That’s not going to happen anymore.”
“Rose — I loved singing with Iz. He taught me everything. But when I did concerts on my own I knew everyone was waiting for him to come on at the end. I was like the salad course. That didn’t feel so great.”
I hadn’t thought of that. “Of course you should do some concerts. But why does Joan say she’s your manager?”
“Oh, Joan — she just wants to be involved.” Carla smiled as if it was an amusing little quirk.
“Why can’t she be involved in her own life?”
“She’s my friend, Rose. I’d be welcoming to any of your friends who came over.”
“But none of my friends do come over,” I said. I didn’t want to say that I had no real friends to invite over.
“There are so many rare songs that my father collected on his trips. People haven’t heard them. Joan’s helping me sort them out. The concert’s a kind of tribute to him.”
“Then why don’t you call it ‘An Evening of Father Songs’ instead of ‘Sister Songs’?” I instantly wished I hadn’t said that.
Carla looked hurt. “Our work is important to me, Rose. I don’t want everyone to just think of me as Iz Herzl’s wife. Joan is very dear to me. She helps me in so many ways.”
“With folk songs?” I said doubtfully.
“She’s an historian. She’s finding linking passages to put between the songs so they’re in some kind of historical context.”
“If she wants to come here all the time, she should have some consideration for Huddie.”
“I know,” she said. “And I should do more.”
“Why don’t you spend some time with him this afternoon? I’ve got to go to the library.”
She sighed. “Oh, Rose — I just can’t today. Joan and I have got an action group.”
“For what?”
“We’re trying to force the council to do an eco-audit.”
I just looked at her. “Is that it? An eco-audit?”
“It’s important,” she said.
“Maybe I’ll understand when I’m older. Maybe I’ll understand everything then.”
Shirley
SHIRLEY TRIED to have as much faith as she could when she thought about Sally, but it might have been easier if she had a different faith than the Jewish one, in which life after death and reincarnation were mired in endless theological disputes. In their version, after all that agony, Jesus did not even get resurrected.
Alan had no faith at all. She was sad that he had closed off Sally in his mind. To him, she was simply dead. His family were from Hampstead, more assimilated than Shirley’s, intellectual Jews who scorned any traditions or sentimentality. Alan’s parents were the first people she had met who were prepared to express some small doubt about the State of Israel, to enter into the kind of debate which, in their house, with the smart Italian furniture and abstract art, could turn terrifyingly lively.
Down the hill, in the less rarefied climes of the Garden Suburb, there seemed to be no skepticism at all. Unlike Alan’s family hers certainly believed in Israel. During the Six-Day War and the 1973 one, she remembered her mother listening to the radio for hours. When Shirley’s father returned from work she would bring him up to speed after they had stopped arguing with each other about their interpretation of key events on the front line as if they even knew one end of the Golan Heights from the other.
As a child, her parents had often played Iz Herzl’s children’s songs and now from some distant recess of a cupboard one of his old albums, The Hope —And Other Songs of Zion, was dredged out to scratch its way round the turntable. The song they listened to most was “The Hope,” a slowed-down version of “Hatikvah,” the Israeli national anthem, which Iz Herzl had translated into English. He was a hero to her parents and their friends. They went to his concerts. He was a big figure then but Shirley had always felt ambivalent about him. Although he did not generally talk about it, Joseph had told her and Alan years ago that Iz Herzl was his father. She could not believe a father would want to have no contact with his son. What else was there in your life other than your children?
For a year now, Shirley had been busy with the Group on Tuesday nights but now, unexpectedly, they had become
free, which meant she could go up to Manchester with Alan and Joseph. She knew they needed protection. The rehearsals in London had been a viper’s nest and it would be worse up there. They were clueless together. They knew how people were in musicals, just not how they were in real life.
Anyway she did not want to be alone in London without Alan or the Group. She did not want to be alone in the house with too much time to think. She did not want to go into Sally’s room and see all her things, still there after fifteen years. She had grown to rely on the Group and, until now, she had never missed a meeting.
There had been the same number of members for a long time. It wasn’t that they didn’t want new people; it was just a question of getting used to one another’s energies. It was important to have an air of calm in the room. Strangers tended to jangle that up. The group was a collective, but somebody had to step forward to make the decisions and it tended to be Shirley — she took the subscriptions and organized the bank account from which the rent was paid and circulated the little newsletter.
The hall was pleasant in the summer. Then they had the big windows open, even though the curtains suddenly billowing out as if there was someone behind them could make the less experienced of the group over-excited. It was cold in the winter and they sometimes discussed moving somewhere else but Shirley worried that a new location might dissipate any ground they had gained. It could take months to get back up to speed.
They were a mixed group, around twelve, but some people did not come every week. Alan did not come at all. He had never come. People say that men are more skeptical and less emotional than women, but Shirley was not convinced. The two men who were regulars often seemed to her to be very vulnerable. One of them had broken down and wept in front of them more than once.
The members of the Group did not hang around afterwards. They washed up the coffee mugs, stacked the chairs against the wall and then went out to the little car park behind the hall. Two weeks ago Shirley had found a long, deep scratch along the side of her car which had not been there before. Of course, she knew that accidents happen, but she felt betrayed. She would not have called the people in the Group friends exactly but they did have a strong bond. If someone had owned up Shirley wouldn’t have minded: they would have exchanged details calmly and let the insurers sort it out.
The Songs Page 6
