I began the first round of visiting doctors and taking tests. They started with the simple things: blood and urine. They moved on to general X-rays. From there, I was treated to the science fiction experience of sliding into what looked like a futuristic iron lung for an MRI. After studying the results—with me sitting in a chair across the desk in an office so richly panelled it looked like a movie set and Chris waiting in reception because I didn’t want him to be there when I heard the worst—the doctor said only, “We’re going to have to do a spinal tap. When shall I arrange it?”
“Why? Why don’t you know now? Why can’t you tell me? I don’t want any more tests. And least of all that. It’s horrible, isn’t it? I know what it’s like. The needles and the fluid. I don’t want it. Nothing more.”
He tapped his fingers together, resting his hands on the ever-growing file of my test results. “I’m sorry,” he said. “It’s necessary.”
“But what do you think?”
“That you’re going to have to have this test. And then we’ll see how everything adds up.”
People with money probably have this sort of test in some posh private hospital with flowers in the corridors, carpet on the floor, and music playing. I had it courtesy of the National Health. A medical student performed it, which didn’t give me a lot of confidence perhaps because of the fact that his supervisor was standing over him issuing instructions in medical mumbo jumbo that included incisive questions such as, “Excuse me, but exactly which lumbar vertebra are you targetting there, Harris?” Afterwards, I lay in the required position—flat on my back, head downwards—and tried to ignore the rapid pulse that seemed to beat along my spine, and tried to ignore the sense of foreboding I’d had in bed this very morning when the muscles in my right leg had begun to vibrate as if they had a will of their own.
I put it down to nerves.
The final test occurred several days later, in the doctor’s examining room. There, seating me on a table that was covered with leather as soft as the centre of a baby’s palm, he put his hand on the ball of my right foot.
“Push,” he said.
I did what I could.
“Push again.”
I did.
He held out his hands for my own. “Push.”
“This isn’t about my hands.”
“Push.”
I did.
He nodded, made some notations on the papers in my file, nodded again. He said, “Come with me,” and took me back to his office. He disappeared. He returned with Chris.
I felt my hackles rise and said, “What’s this?” but instead of answering, he gestured not to the chairs opposite his desk but to a sofa that stood beneath a darkly hued painting of a country scene: enormous hills, a river, hulking trees, and a girl with a leafy switch herding cows. Among all the details of that late morning in Harley Street, how odd it is that I still remember that painting. I only glanced at it once.
He drew a wingback chair over to join us. He brought along my file although he didn’t refer to it. He sat, placed the file on his lap, and poured some water from a decanter on the coffee table between us. He held the decanter up, offering. Chris said no. I was parched and said yes.
“It appears to be a disorder called amyotrophic lateral sclerosis,” the doctor said.
Tension left me like water breaking through a dike. A disorder. Hallelujah. A disorder. A disorder. No disease after all. Not a tumour. Not a cancer. Thank God. Thank God.
Next to me on the sofa, Chris stirred and leaned forward. “Amyo—what?”
“Amyotrophic lateral sclerosis. It’s a disorder affecting the motor neurons. It’s usually shortened to ALS.”
“What do I take for it?” I asked.
“Nothing.”
“Nothing?”
“There are no drugs available, I’m afraid.”
“Oh. Well, I s’pose there wouldn’t be. Not for a disorder. What do I do to take care of it, then? Exercise? Physical therapy?”
The doctor ran his fingers along the edge of the file as if to straighten papers inside that were already perfectly lined up together. “Actually, there is nothing you can do,” he said.
“You mean I’m going to limp and twitch for the rest of my life.”
“No,” he said, “you won’t do that.”
There was something in his voice that made my stomach push my breakfast in the direction of my throat. I tasted the nasty flavour of bile. There was a window just next to the sofa, and through the translucent curtains I could see the shape of a tree, still bare-branched although it was late April. Plane tree, I thought needlessly, they always take the longest to leaf, no abandoned bird nests in it, how nice it would be to climb in summer, I never had a tree house, I remember the conkers growing at the side of the stream in Kent…and playing conkers, with the chestnut whistling like a cowboy’s lariat above my head.
“I’m terribly sorry to tell you this,” the doctor said, “but it’s—”
“I don’t want to know.”
“Livie.” Chris reached for my hand. I pushed him off.
“I’m afraid it’s progressive,” the doctor said.
I could tell he was watching me, but I was watching the tree.
It’s a disorder that affects the spinal cord, he said slowly so that I would understand, and the lower brain stem, and the large motor neurons of the cerebral cortex. It results in the progressive degeneration of motor neurons as well as the progressive weakening and ultimate wasting of muscles.
“You don’t know I’ve got it,” I said. “You can’t be sure.”
I could seek a second opinion, he told me. In fact, he suggested I do so. He went on to talk about the evidence he’d gathered: the results of the spinal tap, the general loss of muscle tone, the weakness of my muscular response. He said the disorder usually affects the hands first, moving up the forearms and the shoulders and attacking the lower extremities later. In my case, however, it seemed to be proceeding in the opposite direction.
“So I could have something else,” I pointed out. “So you can’t be sure, can you?”
He agreed that no medical science was ever exact. But then he said, “Let me ask you this. Have you had any fibrillation of the muscles in your leg?”
“Fib—what?”
“Rapid twitching. Vibrations.”
I turned back to the window. We’d put the conkers on strings, we’d swung them in the air, the sound they’d made was whssst…whssst…whssst, we’d pretended to be American cowboys, we’d lassoed calves with conkers instead of with ropes.
“Livie?” Chris said. “Have your muscles—”
“It doesn’t mean anything. And anyway, I can beat it. I can get cured. I need to exercise more.”
So that’s what I did at first. Rapid walking, climbing stairs, lifting weights. I thought, Muscular weakness is all it is. I’ll pull through this. I’ve pulled through everything else, haven’t I? Nothing’s got me down for long, and this won’t, either.
I continued to go on assaults, fired by fear and anger. I would prove them wrong, I told myself. I would make my body perform like a machine.
For five months Chris allowed me to maintain my position as a liberator until the first night I slowed the unit down. Then he moved me to sentry, saying, “No arguments, Livie,” when I shouted, “You can’t! You’re making me a laughing stock! You aren’t giving me a chance to build back my strength. I want to be in, with you, with the rest. Chris!” He said I needed to face the facts. I said I’d show him facts, I would, and I took myself off to the teaching hospital to gather them through another round of tests.
The results were the same. The atmosphere in which I received them was different. No posh office this time, but a cubicle off a busy corridor down which trolleys were rolled with grim-reaper frequency. When the doctor shut the door, turned her chair to face me, and sat with her knees practically touching mine, I knew.
She dwelt upon what bright spots there were, although she called ALS a disease an
d did not use the more palatable word, disorder. She said my condition would worsen steadily, but slowly, slowly, she stressed. My muscles would first become weak, then they would atrophy. As the nerve cells in the brain and spinal cord degenerated, they would begin sending irregular impulses to the muscles in my arms and legs, which would fibrillate. The disease would progress from my feet and legs, from my hands and arms, inward, until I was completely paralysed. However, she stressed in her motherly voice, I would always keep control of my bladder and sphincter. And my intelligence and awareness would never be affected, even in the terminal stages of the disease when it advanced to my lungs and caused them to atrophy as well.
“You mean I’ll know exactly how disgusting I am,” I said.
She said, placing the tips of her fingers on my kneecap, “You know, Olivia, I seriously doubt Stephen Hawking thinks of himself as disgusting. You know who he is, don’t you?”
“Stephen Hawking? What’s he got to do with…” I backed my chair away. I’d seen him in newspapers. I’d seen him on the telly. The electric wheelchair, the attendants, the computerised voice. “That’s ALS?” I said.
The doctor said, “Yes. Motor Neuron Disease. It’s marvellous to think how he’s defied the odds all these years. Anything’s possible and you mustn’t forget it.”
“Possible? What?”
“To live. The progress of this disease is generally eighteen months to seven years. Tell Hawking that. He’s survived more than thirty.”
“But…like that. In a chair. Hooked up…I can’t. I don’t want—”
“You’ll astonish yourself with what you want and what you can do. Wait and see.”
I had to leave Chris once I knew the worst. I wouldn’t be able to hold my own round the barge, and I didn’t intend to stay on and become a charity case. I went back to Little Venice and starting shoving my things in rucksacks. I’d go back to Earl’s Court and find a bed-sit. I’d keep my job in the zoo as long as I could and once I couldn’t manage that, there’d be something else. Did a bloke care if he was screwing a tart whose legs couldn’t lock round his arse any longer? whose feet couldn’t walk in those five-inch heels? Whatever happened to Archie and his whips and his leather? It’d been several years. Would he still like it if his Mary Immaculate smacked him into an ecstatic frenzy while she was under a sentence of death? Would he like it better, in fact, if he knew? We would see.
I was writing Chris a note at the table in the galley when he came home. He said, “Got a sizable project in Fulham that should set us up properly for a while. One of those mansion flats. You should see the rooms, Livie. They’re…” He paused at the galley door. He lowered a roll of sketches to the table. “What’s this, then?” He straddled a chair and touched his foot to one of my rucksacks. “You taking in laundry or something?”
“I’m clearing off,” I said.
“Why?”
“It’s time. We’re going separate ways. Have been for ages. No use keeping the corpse unburied till it rots. You know.” I stabbed a full stop onto the last sentence I was writing and poked the pencil among the others in their new potatoes tin. I shoved the note his way and pushed myself to my feet.
He said, “So it’s true.”
I jerked the first rucksack onto my shoulders. “What?”
“ALS.”
“What if it is?”
“You must have been told today. That’s why…this.” He read the note. He folded it carefully. “You’ve misspelled inevitable. It’s got an a in it.”
“Whatever.” I scooped up the second rucksack. “A or i don’t change the facts, do they? A bloke and a girl can’t live together like this without things falling apart eventually.”
“Inevitable was what you said in the note.”
“You’ve got your work and I’ve got—”
“ALS. That’s why you’re clearing off.” He put the note in his pocket. “Odd, Livie. I never saw you for a quitter.”
“I’m not quitting anything. I’m just leaving. This isn’t about ALS. It’s about you and me. What I want. What you want. Who I am. Who you are. It’s not going to work.”
“It’s been working for more than four years.”
“Not for me it hasn’t. It’s…” I hooked one arm into the second rucksack and one arm into the third. I caught sight of my reflection in the galley window. I looked like a hunchback with saddlebags. “Listen, it’s not normal, living like this. You and me. It’s freaky. Like being in a sideshow. Come see the celibates. I feel like I’m in a convent or something. It isn’t life, this. I can’t cope with it, okay?”
He used his fingers to count off the points as he responded. “Freaky. Sideshow. Celibate. Convent. Have you ever read Hamlet?”
“What’s Hamlet got to do with the price of cheese?”
“Someone says something about protesting too much.”
“I’m not protesting a flaming thing.”
“Laying out too many arguments or denials,” he explained. “And they don’t make sense. Especially when one considers the fact that you’ve never been celibate for more than a week.”
“That’s a rotten lie!” I dropped the rucksacks from my arms. I heard the click of dog nails against the linoleum as Beans came in from the workroom to give the sacks a sniffover.
“Is it?” Chris reached for an apple from a bowl on the dresser and polished it idly against his worn flannel shirt. “What about the zoo?”
“What about the zoo?”
“You’ve been there—what is it?—nearly two years? How many of those blokes have you done it with?”
I felt the heat surge into my face. “You’ve got some cheek.”
“So you haven’t been celibate. So we can rest that argument. And the one about the convent as well.”
I shook off the third rucksack and dropped it with the others. Beans thrust his nose beneath the rucksack’s flap. He made a sound like blubber-snarf as he found something to his liking. I pushed him away. “You listen,” I began, “and you listen good. There’s nothing wrong with liking sex. There’s nothing wrong with wanting it. I like it and I want it and—”
“Which leaves us with sideshow and freak,” he said.
My mouth gaped. I snapped it shut.
“Don’t you agree?” he asked. “We’re using the process of elimination here, Livie.”
“You calling me a freak?”
“You said celibate, convent, sideshow, and freak. We’ve dismissed the first two. Now we’re examining the others. We’re looking for the truth.”
“Well, I’ll give you truth, Mr. Shrivelcock Faraday. When I meet a bloke who likes it like I do and wants it as well, then we do it. We have a good time. And if you want to condemn me for something as natural as breathing, then go ahead and condemn and enjoy yourself. But you’ll have to do your judging without an audience because I’m sick to death of your holier-than-thou’s, so I’m clearing out.”
“Because you can’t abide living with a freak?”
“Hallelujah. The lad’s finally got it right.”
“Or because you’re afraid that you’ll become one yourself and end up discovering that I can’t abide it?”
I countered with a laugh. “No chance of that. There’s nothing wrong with me. We established that. I’m one hundred percent woman who likes having it off with one hundred percent man. That’s been the case from the first, and I’m not ashamed to admit it to anyone.”
He bit into his apple. Toast showed up and put his nose on Chris’s knee. Beans nudged one of my rucksacks along the floor.
“Good rebuttal if I was referring to sex,” Chris said. “But as I’m not, you’ve lost the advantage.”
“This isn’t about ALS,” I said patiently. “This is you and me. And our differences.”
“Part of which is ALS, as you’ll no doubt agree.”
“Oh balls.” I waved him off. I squatted to fasten the buckle of the rucksack where Beans had done his exploring. “Believe what you want. Whatever goes easier on
your ego, okay?”
“You’re projecting, Livie.”
“What’s that supposed to mean?”
“That it’s a far sight easier on your ego to leave now, rather than run the risk of seeing what happens between us when the disease starts getting worse.”
I leapt, with a stumble, back to my feet. “It’s not a disease. It’s a bloody disorder.”
He turned his apple in his fingers, three bites taken from it. I saw he’d eaten his way into a bruise. The pith was mudcoloured. It looked inedible. He took a bite directly from the damaged spot. I shuddered. He chewed.
“Why don’t you give me a chance?” he asked.
“To what?”
“Prove myself. Be your friend.”
“Oh please. Don’t get smarmy. That makes my skin crawl.” I wrestled into the straps of the rucksacks again. I went to the table where my shoulder bag lay, spilling its contents. I shoved them inside. “Play-act at sainthood with someone else,” I said. “Go back to Earl’s Court. Find yourself another tart. But leave me alone.” I began to pull the shoulder bag from the table. He leaned forward and circled his fingers round my arm.
“You still don’t get it, do you?”
I tried to jerk away but he held me firm. “What?”
“Sometimes people love each other just to love each other, Livie.”
“And sometimes people go parched from spitting at the moon.”
“Hasn’t anyone ever loved you without expectation? Without demanding something in return?”
I pulled away from him but still I couldn’t loosen his grip. My flesh would bruise where his fingers held me. I’d find their marks in the morning.
“I love you,” he said. “I admit it’s not the way you want to be loved. It’s not the way you think of men and women loving and being together. But it’s love all the same. It’s real and it’s there. Most of all, it’s there. And the way I see it, that kind of love is enough to get us through. Which is a far sight more than you can expect to get from some bloke you find on the street.”
Playing for the Ashes Page 52