by Hannah Bent
‘Marlowe!’
I turned to see Maggie Lin walking towards me. She smiled, teeth marked with pink lipstick the same colour as her cardigan.
‘Can I have a quick word?’
‘Actually,’ I said, ‘I wanted to clarify something with you.’
Another stained smile. ‘How can I help?’
‘Surely there must be something more’ – I swallowed – ‘something more we can do to get Harper the treatment she needs.’
‘This must be very difficult for you.’ Maggie seemed to say that a lot. ‘As I mentioned earlier, there’s a hospice in Sha Tin that provides excellent care.’
I bit my tongue. If I spoke, I would say something I would regret.
‘I’d be happy to help you with the paperwork.’ She clasped her hands together. ‘Let me assure you, I know how hard this must be. When I was young, I had a friend next door who had Down syndrome and he was just a ball of pure light and energy.’
Don’t vomit.
‘Surely the refusal to give my sister a heart transplant because of her disability is a violation of her basic human rights?’
‘It is not as simple as that. As Professor Anderson said, this is primarily a medical decision.’
‘But you were in the room when the doctor said –’
‘You seem like a smart young lady. If you care about Harper, I’m sure you’ll do what’s best for her. The Sha Tin hospice offers wonderful palliative care. It’s in an old house overlooking the sea. A beautiful place.’
My head was spinning. ‘Our own home overlooks the sea.’
A light in the ceiling above us started to flicker.
‘I’ve read Harper’s file. Being the sibling of someone who has a disability can be a challenge. You may have felt deprived of attention growing up, with your parents focused on Harper’s needs. And then there was your mother’s death. I wonder if…’
I stopped paying attention to her words. Deprived of attention; it sounded like something straight out of a psychology textbook. My upbringing was more complex than that. While my mother was alive, I was the apple of her eye, and when she died, Harper and I were both deprived of attention.
‘Marlowe?’ Maggie Lin looked concerned.
‘My childhood was fine, thank you.’ And even if at times it wasn’t, I won’t be telling you about it.
‘It can be devastating when a primary caregiver dies, especially when a child is so young.’
She didn’t need to keep bringing Mum into this.
‘You need to understand that you’re not responsible for your sister. That’s your parents’ job, not yours. Have you ever had any counselling?’
Yep. I’m going to vomit.
‘No.’
Truth be told, I did have counselling once, about six months after Mum died. I was losing focus at school. Dad sent me to a grief counsellor who made me draw how I felt using coloured pens. I drew a large house with a garden. The psychologist asked why my family weren’t in the picture. There wasn’t room to fit four stick figures inside the house, so I just shrugged. She asked me if my house felt empty. I shrugged again. With a raised brow, she made notes in my file. I didn’t go back for another session after that.
‘I suggest you seek professional help,’ Maggie was saying as she fiddled with her ugly, lumpy shell necklace. ‘It might be useful for you to revisit the thoughts and feelings you have surrounding your mother’s passing so that you are better equipped to deal with Harper’s.’
Who did she think she was? I had known her for about an hour at most and she was already convinced she had unlocked my innermost thoughts and feelings. Time to go. I gave the vending machine a final kick then strode away.
Harper
Riding home in the back of the car, sitting in the middle of Wài Pó and Marlowe, I am trying not to listen to the words that are coming out of Dad’s and Stepmonster’s mouths, but the more I try not to hear, the louder their words are.
‘James, you have to be calm now.’
‘I am calm.’
‘There’s nothing more we can do. You have to accept that.’
The car speeds faster and so does my dad’s voice.
‘You’re asking me to accept that my daughter is going to die. Do you understand that?’
‘Dad!’ Marlowe says, but it is too late, that word has been said.
Die.
A word that feels like a sharp object, poking inside my chest.
‘Die.’ The word comes out of my mouth now. ‘Die, die, die.’
My world is very quiet. I can see from the corner of my eyes that my dad has turned his head quickly to look at me. I can feel them all talking to me but I can’t see them because I am concentrating on the window outside and the buildings and the trees and the traffic lights and that word.
Marlowe takes my hand. Wài Pó starts munching on candy, munch munch munch. I can see her teeth are sticking to the candy and the candy is sticking to her teeth.
We stop at the traffic lights. My dad pulls over by the side of the road.
‘James, what are you doing? This is a bus stop!’ Stepmonster says.
‘Darling.’ My dad reaches his hand back to touch my knee. ‘I’m sorry, I didn’t mean to say that. I’m very upset. Can we talk about this properly when we get home?’
I think in my brain about the hospital meeting, about the model heart, about the smart professor.
Die. This is a word that was used so many times when Mum died. Everyone was so sad in their hearts but I couldn’t understand why. When Mum’s body was given back to the soil in the earth, her humming went everywhere; in the wind, the trees, the sun, the stars. All around us she was helping things grow. It is not a secret that when things die they still hum; it just changes. After the dum da drumming of a heart, it becomes a feeling that floods the air, like music.
But I am not going to die. I love my body. Even when it’s sick, I enjoy being in it because I get to do things like: hold hands with my Louis, write letters to my Marlowe, read with my dad, cook with my Wài Pó, and chat and laugh with my friends. I am not going to die until I am old and all my dreams have come true.
‘No need to talk,’ I say. ‘I am not going to…’ The word is stuck. ‘I am not going to…’ It is there at the back of my tongue. ‘Not going to…’ It is tight at the top of my throat. ‘Not going to…’ I am absolutely and very surely, one hundred and one per cent not going to: ‘Die!’ I shout. ‘No way. Not me.’
‘It’s okay, Harper,’ Marlowe says. ‘It’s okay.’
The car is very quiet again. I can’t even hear the sound of Wài Pó chewing. The sharp object is out of my chest. My breath is slower, smoother.
‘Dad,’ I say, ‘there is no need to use that word on me. The doctors will fix me. They always do.’
He looks away. I see Stepmonster bow her head in the seat in front of me. Wài Pó takes my hand in hers. After a while, Dad starts the car again and we drive home.
Marlowe
We had been home only an hour; the smell of hospital still lingered on our clothes. Once Harper was settled in bed, the sound of her stuffy breath signalling deep sleep, I made my way outside to the garden. It had begun to rain. As I lay on my back on the grass, I could see how quickly the world was spinning. Even when I finally felt still, I wasn’t.
When we were small, Harper and I used to lie on our backs and she would narrate the shapes and stories that emerged from the clouds: flying horses, friendly dragons, whispering trees and wonderful castles. Without her, all I can see are blobs, floating monotonously through grey sky.
Harper
Everyone thinks I am sleeping in a sickly way in my bed, but I am not. I still have all the voices from our afternoon at the hospital swirling around in my head. I call Louis on his personal mobile phone. We talk twice a day, every day, while he is on holiday in Thailand with his family.
‘Hello?’
‘Hello,’ I say.
‘Oh, my sweet lady, how are you? How do you feel? H
ow was the doctor’s?’
I have to remind him to ask me one question at a time. Then I tell him everything is fine and I will be better soon. There is no need to repeat the word that Dad said in the car. He didn’t mean it anyway. Sometimes we all say things we don’t mean when we are upset. There is also no need to tell Louis about the other word: ‘transplant’. It is too complicated and may just make him worried in his heart when, really, there is nothing to worry about.
‘I have something I need to tell you,’ he says.
‘What?’ I am smiling because I can hear sparks flying around in his voice.
‘I was looking at the sunset on the beach at exactly six twenty pm and I thought of you.’
‘That’s nice. I think of you at sunset too.’
‘Excuse me, I’m not finished yet.’
‘Sorry.’
‘Well, I was thinking that I would like to marry you at sunset… sometime soon.’
My hum started to zing and hop and jump. I smiled so big and wide that it hurt inside my eye and cheek muscles.
‘Maybe we can live together after that and have a family, and we could watch TV in our own home, and make popcorn together, and no one can tell us not to eat Doritos and drink Coke.’
‘Oh, Louis, I would love that with all my heart.’
‘Uh, I’m still not finished speaking my speech.’
‘Sorry.’
‘Most of all, I would love to spend every sunrise and sunset with you from now on until the day I die.’
Die.
Why did he have to say that word?
Suddenly my eyes are spilling water.
‘Uh-oh, I’m sorry. What did I say? Did I say something wrong? I’m sorry, I didn’t mean to.’
‘No, it’s nothing.’ I shake my head, but he can’t see that. ‘Nothing. I just don’t want you to d–i–e.’
He’s very quiet.
‘Louis?’ I say.
‘Yes?’
‘Why are you quiet?’
‘I dunno.’
Sometimes he needs my help.
‘Well, this is the part where you say, “Don’t worry, I’m fine.”’
‘Okay.’
‘Okay what?’
‘Oh, sorry. I mean, don’t worry, I’m fine.’
But it didn’t feel right and I was still crying and I didn’t know why.
‘Harper?’
‘Yes?’
‘Do you not want to marry me?’
This made me cry more. I was hurting him in his heart and I did not mean to.
‘Of course I want to marry you. You are the love of my whole life.’
‘Yes, I thought so,’ he said. ‘So why are you crying?’
I thought in my mind and in my heart about this for some time, but there were no words that came to my mouth for me to speak about how I felt. It made my forehead go tight.
‘I don’t know,’ I said.
Marlowe
Mum, blindfolded, had said she was turning eighteen again, then giggled. She was standing by the French doors.
‘Happy birthday!’ I sang as Dad guided her into the garden.
Harper, who had just turned one, squealed and tugged the hem of Mum’s floral dress. Wài Pó lifted my baby sister to her chest. My grandmother was smiling, and it made her face look years younger.
For the last few months, Dad had been busy in his garden, working on a surprise for Mum’s birthday. A section of the lawn with the best view of the ocean had been cornered off and no one was allowed to enter. Even though I could see what was being built from my bedroom window, I kept it a secret.
Dad took Mum’s hand and led her through the jungle of greenery. Wài Pó, Harper and I followed, walking across the warm grass, past the fishpond with the fat koi, past the banana, bauhinia and papaya trees, to the edge of the garden, where salt water infused the air.
There we saw an elegant red-and-green-tiled pagoda. Its upturned roof had a ceramic phoenix at each corner. Inside were two benches and a small table, all in matching red-and-green tiles. Citronella lamps stood in the grass by the arches of the temple. Flames snapped and crackled, their scent sour and sweet. It was the most beautiful thing I had ever seen, like something out of one of Harper’s storybooks.
Wài Pó’s eyes looked wide and dreamy. Harper clapped her hands together.
I desperately wanted to rush inside the temple, but knew I had to wait patiently for Dad to undo Mum’s blindfold.
She was silent, staring at her gift, hand over her mouth.
‘Ma,’ I whispered, ‘do you like it?’
She didn’t speak. Her hands were trembling. She took Dad’s arm, and they walked in together.
Wài Pó said we had to leave them be. As we walked back to the house, I turned to see them sitting side by side. They were watching the dotted lights of ships hover over the ocean like fireflies.
The pagoda became Mum’s sanctuary, one that she had shared with Dad. Most days, when he returned home from work, she would meet him for a gin at sunset and they would sit together, holding hands. I wondered what they spoke about, or if they even needed to speak at all.
Now, as I watched the sun setting from my bedroom window, a movement in the garden below caught my eye. His shoulders were slumped as he walked towards the spot where Mum’s pagoda used to be. He reached a square of sparse brown grass – the only remaining trace of her sanctuary – and bent down to place his hand on the spot. After Mum’s passing, he’d had the pagoda taken down and the grass never grew back.
I pressed my nose against the window and held my breath, waiting for him to make his next move. Head bowed, his shoulders shook. I had only ever seen him cry once before, and that was a long time ago.
I was nine. Two months had passed since Mum was buried. There were no more funeral preparations to distract us. Flowers had stopped coming, along with the cards and hampers of food, and there were no more visitors. Before she left to go back to Shanghai with Uncle Bĭng Wén and Bì Yù, Aunt Lĭ Nà sat me down for a talk.
‘When someone dies, it is normal to feel very sad,’ she told me. ‘Your dad, Wài Pó and Harper will feel it too. It is important to let yourself cry.’
I’d been expecting my family to cry, but they didn’t, not even Harper.
After Mum’s funeral, I was very busy. We were doing an exciting science project at school and I was preparing to submit my findings on the feeding habits of Indian cabbage white and great Mormon butterflies. This involved laying different-coloured circles of paper in a row in Dad’s garden, some laced with honey and water, some not. For hours, I watched to see whether the butterflies searched for food based on colour or scent. There was no time to feel sad.
Wài Pó was also too busy to cry. Cooking elaborate dinners had become her latest obsession. She would spend every morning at the markets and then all day in the kitchen. I thought it was a strange obsession, since she never ate very much herself, but she had often said she liked the taste of other people’s food more than her own.
Harper had seemed her normal, cheery self. She continued to dance and sing, eat as much of Wài Pó’s cooking as she could, and was just as chatty as she was when Mum was around. In fact, she still spoke to Mum, as if she were still alive. The only time it became a nuisance was at night. Harper had refused to sleep, unless it was in bed with me, and her incessant jabbering would keep me up. She was still learning her words so I couldn’t understand half of what she was saying.
Dad seemed to be coping the best out of all of us. He would rise early every morning, tend to his garden, go to work, eat three meals a day, and generally carried on as if nothing had happened. The only thing that seemed different about him was that he had stopped reading. When Mum was alive, he’d read three different newspapers in the mornings and had a new book in his hand every evening. Mum would always say: ‘For your father, reading is like taking breath. It is something he will always need to survive.’
We continued like this for weeks. It was as if Mum had s
imply gone on holiday.
I don’t remember feeling her absence until the day Harper came home from kindergarten with a bad cough and a fever. She was clammy and lethargic. All she wanted to do was curl on my lap on the sofa, sucking her thumb and twirling my hair with her free hand.
Wài Pó took her to the GP, who gave her antibiotics, but they must have been the wrong ones, because at two in the morning I woke to the sound of her crying in the bed beside me. She was white, sweating and delirious, and her lips were tinged blue. It all happened so quickly after that. We bundled her into a taxi and made straight for the closest emergency department. There she was diagnosed with pneumonia and immediately put into the intensive care unit. I watched from a corner of her room as medics stuck wires on her chest and put an oxygen mask over her face. When they prodded a needle into her vein, trying to thread a cannula in for a drip, I shuddered, but Harper never cried. The more stoic she was, the more powerless I felt. All I could do, it seemed, was watch from the sideline. She didn’t even need me to comfort her.
Harper never seemed fully conscious. It was as if she was half with us and half somewhere else. A doctor told us she had become septic. I didn’t understand what that meant, but I knew by the tone of voice that it wasn’t good. Wài Pó sat in the corner of the room thumbing her beads in a daze. Dad paced the corridor outside the ICU, frantically calling other doctors he knew, trying to get Harper the best medical care possible. But as the days wore on, I noticed his demeanour change. He moved slower. His body seemed to shrink. His voice softened and his face looked long and tired.
One afternoon, I heard Dad talking to the doctors outside Harper’s room and crept to the door to listen. ‘Should I be signing a do-not-resuscitate order?’ he asked.
Do not resuscitate. I knew what that was. Dad had been asked if he wanted to sign one of these when Mum was very sick. It was a form that meant they wouldn’t help her heart start to beat again if it stopped. But he had refused to sign it then, so why was he asking about signing one now for Harper? How could he? He had always told me to have hope.
