1
It was 8.15 am. Alex sat back in the driver’s seat of his parked car, looking out at the rain-blurred view of the stark grey hospital building where he was about to write an exam. His fingers drummed incessantly on the steering wheel; his jaw was tense and his brow furrowed. His dark hair was tousled and his eyes were heavy and bloodshot after a night of very little sleep. Every now and then he would turn his hands over, palms up, then make fists to flex his forearm muscles, watching the tendons contract and expand in his wrists. Other students started to arrive, dashing through the heavy rain towards the tall glass doors of the concrete building. He had been sitting behind the wheel of his sleek white 4x4 for a while already, he wasn’t sure how long, trying to calm himself enough to go inside. Just breathe, he told himself. He closed his eyes and concentrated hard, but his breaths were ragged and uneven. You are not having a panic attack, he told himself. You are not. You can do this. Breathe.
He knew he had to get out of the car at some point and go inside. He had to pull himself together, sit down and write that exam. Exams had never been especially stressful for Alex – remembering facts was easier for him than for most, and he had always been prepared and confident in the past. He was half way through his fifth year of studying medicine and he had written plenty of exams, but he had never felt like this before. This time was different.
“Why yesterday?” he said out loud. “Why did all this have to happen yesterday, of all days?” He closed his eyes and clutched the steering wheel tightly, trying again to gather enough composure to go inside. But behind his closed eyes was the unwelcome vision he could not shake – the YouTube video he had seen on his phone after he had returned from the doctor’s rooms the afternoon before. The emaciated man sat in a wheelchair, his mouth open, his eyes on the ceiling, his arms flying uncontrollably across his body every few seconds. Incomprehensible, animal-like sounds came out of his mouth, and a single tear trailed slowly down his face. And beneath this video, a hundred more videos waited, of a hundred more human beings slowly losing everything.
No. No! This time he smacked the steering wheel and picked up his keys. You have to do this, he told himself. Push it out of your mind. Push it away. Later. You can think about it later. You can face it later. He grabbed his bag, pulled his hood over his head and opened the door.
Through the rain, down the stairs, put down the bag, get a pen, find a desk. The noise of the other students was strangely muted in his ears, which seemed to be filled with the beat of his pulse. He managed a few howzits, back slaps, a few nods at the others he had written exams with so many times before. He hoped the expression on his face didn’t look as fake as it felt. There was Nick now, coming over to him.
“Hey Alex. Saw you sitting in your car. You okay?”
“Sure, I’m fine,” said Alex, trying to look as if he was. “Didn’t sleep much.” Avoid questions, he thought.
“How’s your dad? Any news yet?”
He shoved his hands into his pockets, feeling a wave of nausea come over him. “Yeah, there’s news. I’ll tell you about it later. You ready for this?”
He managed to get through another minute or two of exam talk, and the nausea subsided a little. Nick asked him a question about neurology. Alex had studied so much for this exam; he felt he should know the answer, but his mind was blank. He mumbled something, trying to access that part of his memory, but the effort it required was enormous.
Eventually he was seated and the paper was in front of him. It was time to start. It was time to pick up that pen and show that he knew what he needed to know. It was time to prove he had what it took to be a doctor. He turned over the paper and stared at the first question. I know this, he thought. I can do this. I can focus. I can fight this panic. I can do this. Breathe.
The first question – what was it again? He read the words, comprehended each one, then tried to figure out what they all meant together. The panic rose again, the shaking too. Too much coffee, he thought. He tried to remember if he had eaten that morning, but he couldn’t. He closed his eyes, tried again to focus, tried to think about what it would mean to be done with this block and to be another step further toward his dream. But what’s the point, he thought. He might have it. He probably had it. Oh gosh, he was losing it. You are not having a panic attack, he tried to tell himself again. You are not. Read the question again.
But Dad. But Dad, yesterday in the doctor’s rooms. Mom calling him at his flat and his sister from her office to come and join them to let the doctor explain the diagnosis. Walking into the plush office and seeing the four chairs set out before the doctor’s desk. Mom and Dad’s stricken faces. Mom had been crying. Even the doctor looked sad.
“Alex, Anna,” the doctor had said after they sat down in silence. He was older and grey, his watery eyes never quite meeting theirs as he placed himself in the chair behind his desk. He had little glasses with invisible frames, half way down the bridge of his nose. He had a funny name, something inconsistently Irish and jolly. “We have received the results of a genetic test we did to try to explain the symptoms your dad has been having. Your parents chose not to tell you we were going to do this test until we got the results. And unfortunately, we have confirmed that your father is in the early stages of Huntington’s disease.”
Alex had known what it meant immediately. He had seen it at the hospital. He had read about it, studied it. It was a disease on a page, in an anonymous pitiful person in an anonymous blue hospital gown, a jerking, wobbling, painfully thin person surrounded by a ring of earnest medical students with notebooks and pens. It was a disease as removed from him as cholera or rabies. A disease caused by the mutated genes of someone else, by rampaging proteins in the body of some other person, slowly devastating the brain of another father, another family. It only took a few seconds for the weight of those words, the tragic, unimaginable consequences of that name, to hit him. They hit him a little like he imagined a massive car accident or a gunshot might feel. A moment of impact, a short blur as you realise you are hit, then crumpling, damage, pain. And life as you know it is over.
“What is that?” Anna was saying. “Is it like Parkinson’s? You thought he might have Parkinson’s. Or that other muscle disease. The one with the ice buckets – is it that? Mom?” She was looking around at them, the only one who didn’t know yet what this meant.
Mom was crying now, quietly, looking at Anna but with a hand over her mouth as if she could not trust herself to say anything. Dad tried to answer. “It’s a neurological disease, honey. It … it kills brain cells. Maybe the doctor can explain better.” His voice was quieter, strained. He had his arm around Mom and was slowly patting her shoulder.
“Yes, Anna, it is a … neurological disease.” The doctor looked uncomfortable and sweaty. He fiddled with some papers on his desk and shifted in his leather seat. They all heard it creak. Alex, still reeling, suddenly felt mad that this news should come from someone so pale and unimposing. With that awful comical name. It was an earthquake, an avalanche hitting them all and it came in the low dull voice of Doctor Mac something or other, who was now spouting medical jargon at his overwhelmed sister. “It’s a mutation on chromosome four that causes the overproduction of a protein called huntingtin …”
Alex had to interrupt. Anna was staring at the doctor, uncomprehending. “Doctor, please,” he said.
The doctor looked relieved. Alex turned to Anna, put his hand on her knee. “It’s bad news, Anna. It’s a terrible disease. It’s like Parkinson’s, ALS and Alzheimer's all together. It affects your movement, and your mind too.” He looked at his dad, who was looking up at the ceiling, still patting Mom’s shoulder.
“So … there’s no cure?” asked Anna, quietly.
“Not yet, no.”
“And does it … I mean does it take a long time …”
“Usually ten to twenty years.”
“Well that’s good, isn’t it?” said Anna, turning quickly on her chair to face her parents, and then the doctor. She had been desperately fishing for something positive and this seemed to be it.
“It isn’t quick, no,” said Alex. Oh Anna, if only you knew. With this disease you wish it was quick. It can drag out hell for twenty years. But he knew it was better to leave it there for now. Besides …
“Dad,” said Alex. “How? Your parents?” The first shock was starting to wear off a little and now the questions came. The questions, and anger. He had thought before how stupid people were to have children when they knew the disease was in the family. That man in the hospital – he had three daughters. And grandchildren. How could anyone knowingly give their children a fifty percent chance of a slow, humiliating death? He tried to think about his grandparents, both dead now. Dad had been an only child, born to his parents in their forties. He remembered Granny, not his grandfather at all.
“We thought…” Dad’s voice was still so quiet, so thin. “We thought Dad had Parkinson’s. He used to shake a bit. Drop things. We thought he was depressed, you know he was in a prisoner of war camp for years and sometimes … he would get moody and angry. Then he died from stomach cancer. He must have had it. But no, Alex, I didn’t know. His father died when he was a child. And beyond that, I don’t know. I don’t know anything.”
“So … you get it from your parents?” said Anna. She was starting to comprehend.
“You do,” said Alex. “Dad has the gene, so we might too.”
Dad has the gene, so we might too. And he was back in the exam, that hideous thought blanking out the words on the exam paper. It was blocking out everything he had studied. It filled his head, making all other thoughts about exams and the consequences of missing an exam invisible in their comparative insignificance. He knew he was done. He closed the exam booklet, picked up his pen, stood up and walked out.
2
Alex drove straight back to his flat after walking out of the exam. The flat was five minutes away from the campus, an investment property his dad had bought for Alex and Anna to stay in while they were at the University. Anna lived with her boyfriend now, so he shared with another med student, Darren. He walked into his bedroom, locked the door, got into bed and put his head under the covers, abandoning himself to his grief for the first time since he had heard the news. He cried harder than he remembered ever crying before, until his bed was wet and his stomach muscles hurt. So many clashing thoughts spun through his mind as the tears came. My dad’s going to die. Do I have the gene? When can I have the test? Will Dad go crazy now? Suicidal? How long will I have … maybe I have symptoms now and I haven’t noticed … Does Anna have it? And children, will I never have children? No one will love me, I’ll never get married … can I be a doctor if I have it? What’s the point if I study for years and I can’t practice? What does it feel like to lose your mind? People with this disease kill themselves. I could kill myself if it gets too bad. How could I kill myself … Someone will have to look after Dad. Wipe drool off his chin. Feed him. He’ll need to be fed. Bathed. Someone will have to look after me, and Anna … will Mom lose us all? Live through all of us wasting away, acting crazy?
They were awful, awful thoughts – dark, desperate thoughts that made him want to die right then. He lay there, his eyes closed, just breathing, wondering how he could even be alive if he felt this bad. It was a shock to wake up later and realise that he had fallen asleep. It was late afternoon and almost dark in his room as he slowly returned to consciousness; his body stiff and clammy after sleeping in all his clothes, his eyes swollen and sore. He listened for a minute to see if Darren was in the flat, and hearing nothing, opened his door. He went to the kitchen, aware that he was ridiculously hungry. He still couldn’t remember when he had last eaten. He folded up a piece of bread from the bag on the counter, forced it down as the kettle boiled, then took a cup of coffee back to his room and sat on his bed looking out of the window. The cold front had settled in now – the sky was almost black and the rain poured.
As he drank his coffee, he let himself begin to think about what he had done. He had walked out of an exam, an important exam. How could he have been so weak? Yes, he had just been given terrible news but to fall apart like that – he was angry at himself for losing control. He had to fix this somehow. He picked up his phone.
He scrolled through his messages, wondering who he could ask about what to do about it. There were messages from Anna and from his Mom, and from Nick. He replied to Nick, saying he wasn’t feeling well and he’d call him later. The others he ignored. He wasn’t up to talking to them yet and had no desire to explain the exam situation to them. He remembered a guy in his class who had missed an exam after a car accident. He didn’t know him very well but he could ask him what he had to do to apply for a rewrite. He had to go to his contacts to find the number. Kenny, I think his name was, he thought. As he scrolled through the names something caught his eye.
He stopped, scrolled back.
Jill O’Dowd.
It was ages since he had last been in touch with her. They had messaged back and forth a few times since all that time ago when they were seventeen, but they had never met up. Impulsively, he tapped on her name. There it was, her WhatsApp profile and the last of a chat they’d had almost two years before. There was a profile photo that showed her from the back, on a beach, her red-gold hair whipping in the wind. That beach, he thought. Wouldn’t it be wonderful to be on that beach now? To have a surf in that beautiful water, feel the sun warm his skin … to go back to the days before life had changed forever.
He read their last conversation.
Hey Alex. I was drinking a Wimpy milkshake and thought of you for some reason.
Funny, he had replied. You also writing exams?
Yes, she had texted back. Studying like mad. Just taking a break. Going home next week. I can’t wait.
He remembered getting that text. He had also been in the middle of exams, also taking a study break, and his girlfriend had got mad with him for being on his phone while he was supposed to be paying attention to her. He had felt kind of strange for the rest of the day after that, remembering.
It would be great to visit Marshall Bay again, he had said.
You’re always invited, she had replied.
He closed his eyes. Jill. He hadn’t thought about her in so long. He had been so crazy about her, tried so hard to get her to like him back. But she hadn’t been into him. They were just friends, she had said. He had known, though, that he just wasn’t good enough for her. Religious enough. Ugh. But the memory of their friendship was sweet enough that it was good to imagine being there now, sitting on the bench in Jill’s garden. To remember her earnest eyes, her pointed questions, her quick instincts. He remembered how it had felt to talk to her. Easy, unpressured. No games, no flirting; at least not from her. No expectations. Just talking. And laughing.
He looked at his phone again. “Online” it said at the top. Somewhere out there, Jill had her phone with her. Maybe she was still studying in Grahamstown, maybe she had moved, maybe she had joined her dad in the UK. Or maybe she was in Marshall Bay.
Why shouldn’t he reach across the miles right now?
Hi
That was all he sent. He sat and stared at the screen, watching for the blue ticks. The thought of a connection seemed suddenly very important.
The ticks turned blue. She was typing.
Hi stranger. You still have my number!
That was so easy, he thought. He didn’t even know where in the world she was. Sure I do.
What’s up? she asked. You still in Cape Town? Is it freezing and raining there too?
He looked out of the window at the stormy sky. Still in Cape Town.
Deep winter here. I was dreaming about the beach in Marshall Bay.
Her reply made something in his chest constrict with longing. I’m there now. But it’s not exactly beach weather.
As he typed his reply he felt the emotions rushing back. Tears were so close to the surface that the thought of Jill there was all it took to bring them back. Aunt Bert’s old house?
Mine now, she said. Long story. You’re always welcome, remember?
I might just take you up on that this time, he typed, wiping his eyes and trying to focus on the screen.
She sent back a smiley face, and a question. So do you still look like Percy Jackson?
You’ll have to tell me when you see me, he said, the words blurring again in front of his eyes.
Alex signed off and put down his phone. The walls of his room felt as if they were closing in on him. For the last few minutes while he had been messaging Jill he hadn’t thought about Huntington’s or his exam. Now those thoughts shoved themselves to the front of his mind again. He tried to push them away, picturing Jill in the house in Marshall Bay. He had fuzzy memories of the simple old house, with its front porch and threadbare carpets. A velvet chair, lots of shabby cushions, a dated kitchen with a linoleum floor. Maybe she was sitting on her bed with her phone too. Or making supper for Simon. She had said it was raining there too. He pictured rain falling on the garden. He had an idea it had been a pretty garden. His sentimental thoughts were turning into something else, into a longing to leave Cape Town, to get on the road and get away. To physically leave all this mess behind for a while and go somewhere else. Why shouldn’t he go? Now? The exam he had walked out of was the last of the semester and there was a two-week break before the next block.
It was a crazy idea. But he felt crazy. He got up and threw some clothes into a bag. Then he spent ten minutes digging in his cupboard, looking for the Bible Jill had given him that Christmas. He found it in a shoebox of bits and pieces that he had never opened since moving out of home years before. He had barely looked at it since she had given it to him and it still looked new. Then he sat back down on the bed again, holding it in his hands. Don’t be ridiculous, he thought. He would get there in the middle of the night. He was in no state to drive. It was a dumb idea anyway.
He opened the Bible. To Alex, it said at the front, in Jill’s neat handwriting. A gift to you, from me and from your loving Father in Heaven. Jill. For some reason that made his eyes well up with tears again. And although he knew it was crazy, he held the idea of driving off to Marshall Bay in his mind as he went through the motions that night; watching a mindless movie on TV, eating something again and then going back to bed. He turned it over, examined it and kept it close. In the morning, he thought as he fell asleep. He would think about it again in the morning.
Jill picked up her phone to check the weather for the next day. More rain. More cold. It was midday, and she was on the couch in her lounge, under a blanket, trying to do some work on her laptop. The lounge looked very different to the way it had looked five years before. There were no crocheted cushions, except for one, on an upright wooden chair in a corner. The furniture was the same, but there was less of it, and the two faded old couches were covered in cosy bright throws. The walls were painted a fresh shade of white and the old brown carpet had been pulled up, revealing the wooden floors beneath. There was a many-coloured rag rug on the floor, and a few colourful framed prints on the walls. The room was younger and more cheerful than it had been before.
Jill had already been to work at her part-time job at the local primary school’s library, and was now working on her other job, freelance copywriting for an agency in Port Elizabeth. As she checked the weather she saw she had a new message. Another one from Alex Palmer. Strange, she thought. It had been two years since their last chat, then out of the blue he had pinged her yesterday.
Twice in two days?
Jill. I hope you were serious yesterday, because I’m 300kms down the N2 already.
She stared at her phone in disbelief. She had been serious, but this was not exactly what she had had in mind. She hadn’t really expected that he would ever visit. Sure, they had been in touch a little over the past few years. She thought he might bring some buddies for a summer holiday and they would hang out. They were older now so all that stuff that had happened between them didn’t need to matter. But it was all so long ago. She had to think quite hard before she could even properly picture his face. It was a good-looking face, that she remembered. Seriously not unpleasant to look at. But maybe he was joking.
You’re what? Are you serious?
I know it’s crazy, he replied. But yeah. I’m on my way. Or at least I will be again when I leave this petrol station.
She didn’t know what to say. She hadn’t seen him in all this time and now he was on his way? And he was typing again.
I can stay at a backpackers’. But I’m going to pitch up at your door sometime if that’s okay.
You don’t have to do that, she said. I have a spare room.
She looked at her phone in disbelief, shaking her head. Something was funny. A lot of time had passed but she just didn’t think Alex was the kind of guy to do something so impulsive. She had to ask. Are you okay? Is something wrong?
She saw the blue ticks, but he didn’t reply for a while.
A lot is wrong. Everything is wrong. I’ll explain when I see you.
All right then, she typed. Drive safe. See you later.
Jill sat still for a while, thinking, wondering what could have happened, wondering why, of all people, Alex was coming to her.
She put her phone down and shut her laptop, thinking that she needed to check that there were clean sheets in the spare room. But first she closed her eyes and said a prayer, asking God to keep him safe for the rest of the way.