by Hannah Bent
Good to see you.
The dauter smiles. She says the same thing back to her dad. Then her evil stepmonster says it is time to go. The stepmonster was happy she culd stop the father and the dauter from talking to each other. She had bad feelings in her hart and thout no one else could tell. But they could.
I have been to many hospital rooms before but this one is the nicest because it has pretty paintings of a garden and flowers in yellow and orange and blue. There is a doctor sitting at a big round table with lots of chairs around it. Enough for me and Marlowe and Wài Pó and Dad and Stepmonster. The doctor has tired moon eyes and a shiny bald head. He is flicking through a folder of papers. He wears a white coat, red glasses and I have never met him before. On his nametag I read the words Prof. Julien Anderson.
‘Excuse me.’ I wave my hand at the doctor and point at his nametag. ‘What does Prof mean?’
He stares at me but does not speak.
‘It means professor, darling,’ Dad says.
I know what a professor is because Louis’s dad is a professor and Louis says his dad is very, very smart.
‘Well then, Professor Anderson, you have a good brain.’ Because this doctor is also a professor it means that he will take very good care of me. I feel a relaxation in my body and it is like I am swimming in a warm sea.
Something is becoming clear in my mind now. Now I know why I have seen so many different doctors and had so many needles and scans. It is because my dad wants me to have the very best care. He always wants the very best for me.
The professor puts his hand to his mouth in a fist and clears his throat.
‘I’m just waiting for our social worker, Maggie Lin.’ He looks at his watch. ‘She should be here any minute.’ He takes a red pen out of a helpful pocket on his shirt and begins to write on one of his papers. I cannot read his writing and want to tell him it is very messy but that would be rude. He shuffles the papers on the table and knocks over something close to his arm. When he picks up the pieces and places them in the centre of the table, I can see that it is a plastic model of a heart. I have seen these models many times before. The doctors use them when they need to explain what is wrong with my heart and what needs to be fixed. I take out my notebook and write too:
A hospital is a plase where peopel get fixed and where you tak about the fixing. This hospital is full of smart branes.
I stop writing because I have noticed with my eyes that there is a skeleton in the corner of the room. I think it would be good to include this in my storybook. I try to find the words to describe what is wrong with the skeleton’s leg, because the art of writing is all about what you see and what words you use to show this. Then Marlowe leans in and whispers:
‘It’s missing its left fibula.’
‘What’s a fibula?’
She touches the lower part of my leg. Her hands are warm.
‘Are they going to fix it?’
‘Sure.’ She looks away and rubs her hands together. She does this sometimes when she is a bit nervous.
The doors swing open. A small woman dressed in a pink cardigan, blue jeans and a large shell necklace comes in.
‘Hi.’ She searches the room with her eyes. ‘My name is Maggie Lin. I’m your appointed social worker and I’m here to support you.’ Her chocolate eyes find mine and she gives me a big and friendly smile.
‘Ah, you must be Harper.’ She bends down next to me. She is very close so I need to lean back in my chair.
‘Yes, I am Harper Míng Huà Eve. You have a very pretty necklace.’ She touches the shell on her chest.
‘Well, aren’t you such a dear?’ She pats my shoulder. Her words are nice but they make me feel strange. I look to Marlowe for help, but my sister’s face is tight and her eyes are hard.
The professor starts talking to my dad. Even though he speaks softly, I can still hear what he is saying.
‘I think it is best that Harper leaves the room now. This could be quite emotional for her.’ The skin under his chin is loose and it wobbles.
‘That won’t be necessary.’ Dad fiddles with the collar on his shirt. I can feel all the invisible feelings between us all. They are running around the room, zigzagging between our hearts and our heads, filling all the empty spaces with something heavy.
‘Very well.’ The professor takes out a machine for catching his voice. He clears his throat again then presses a button. ‘Patient number zero five one seven: Harper Míng Huà Eve, twenty years old.’ The professor moves his voice catcher so that it is below his chin and he turns off a button. He looks at my dad.
‘We have considered everything you and your family have been through.’ He puts his voice catcher near his lips again and presses the button again. ‘Harper was born with an atrioventricular septal defect which was treated with corrective surgery at St Peter’s Hospital on the night of her birth. Because of the graft failure, at the age of three she had open-heart repair surgery at the National Hospital in Shanghai. Aged fifteen she went into heart failure. In the beginning it was noted that she went blue on crying. Cyanosis later became persistent, indicating a current problem with the previous repair.’ He takes a big breath. ‘Throughout childhood she frequently required hospitalisation for recurrent chest infections, bronchitis and pneumonia.’
My dad gives one of those looks to Stepmonster that says he is in a mood. The professor sees him.
‘My apologies, this is hospital procedure.’ He looks at his notes. ‘After presenting at our hospital…’ He goes on talking about how last week I came into this beautiful hospital with a fever and a very weak hum. The more he talks, the more his words become small and start to fade.
‘This is boring,’ I whisper into Marlowe’s ear.
The lady with the shell smiles at me again. Her necklace catches the light and shines brightly from her chest.
I write some more in my notebook.
She thught the doctors would fix her but in fact it was a woman in the hospital meeting room who would heel her. She was called the lady with the shell. She was kind and was born deep deep deep where storys are hiden in the water. A speshel lite came from her neckless and filled her chest, making it warm.
I would like to write more about the lady with the shell, but the professor’s voice is louder now and this gets in the way of my creative thinking.
‘We have since stabilised her and done our own investigations.’ The professor looks through his papers again. ‘Harper’s tests have shown a marked deterioration in her heart’s ability to function, which is in turn affecting her lung capacity.’ He circles something on a piece of paper in red pen. ‘As you will know, these results are not good. Both the echocardiogram and Swan-Ganz catheter show that she has developed pulmonary hypertension and that her pulmonary vasculature is irreversibly damaged.’
Irreversibly damaged. Suddenly it is noisy in my head. I can’t remember exactly what irreversibly means but I know it is a very strong word and damaged is a very broken word. My thoughts blur together and I can’t separate them.
‘You’re not the first doctor to tell us this.’ My dad’s voice is sharp. I think a fire is burning in his heart. Heat spreads through the room.
‘Calm down, James,’ Stepmonster says.
I feel like ants are crawling inside my stomach.
‘We’re here because we want to know if you can help where others refused to.’ His heat hits the professor, making his cheeks pink.
I slide my hand into Marlowe’s and quickly feel my mind go quiet.
Wài Pó twirls her jade necklace around her fingertips and chews. She is probably eating another hawthorn candy.
‘Based on Harper’s most recent results, it has become apparent that oral medication won’t help her heart failure, and corrective surgery is not advised due to the onset of pulmonary hypertension.’ The professor pushes air out of his mouth like it is thick smoke. He looks sideways at the lady with the shell. She nods at him and then looks at me, smiling with pinched eyes. The professor m
oves his voice catcher below his chin.
‘In my professional opinion, Harper requires a heart and lung transplant.’
Transplant. Transplant. Transplant. A word I have heard at all the hospitals I went to. It is a word I don’t understand. It is a word that all the doctors say quickly and quietly, a word that makes the professor’s eyelids twitch. I think that I must write this word down so I can try to find its meaning later.
Marlowe’s hand is floppy in mine so I squeeze it. I look at Wài Pó, who is shaking her head and is saying things as quietly as the grass when it whispers to the air.
‘We are aware of this,’ my dad says. ‘This is the fourth hospital we have been to now.’
The professor clears his throat again. I think maybe Wài Pó should offer him a hawthorn candy.
‘So are you going to put my daughter on the list for a heart and lung transplant or will you just give us the same line that the other hospitals did?’ My dad rubs his forehead. ‘Look, if it is about the money, we will find the cash. Just do whatever you need to do to make my daughter better.’
I clear my throat like the professor does, but no one looks at me. I think they have forgotten I am here.
‘Excuse me,’ I say. ‘What does transplant mean?’
No one answers me.
‘Hellooo?’
Marlowe stands up. ‘Come on, Harper, I think maybe we should leave.’
‘Sit down.’ My dad talks in a loud way. ‘Harper is not going anywhere.’ He looks at me, and I see the skin around his eyes is red. ‘Darling, you are very sick.’
I know all about that; I can feel it in my body.
‘You need the doctors to give you a new heart and lungs so you can get better.’
New heart and lungs? This is a very strange thing to say. I have not seen these sold in the supermarket, or even at the pharmacy where we usually get things to make me feel better. I think that maybe my dad is a bit confused about what a transplant is.
With his large hand, the professor scratches his shiny bald head and begins to talk again. I can tell that all of his brain is focusing on my dad and all of his body is trying to get rid of the heat.
‘We have very limited resources. The demand for organs is much greater than the supply,’ says the professor. ‘We have assessed Harper’s case carefully, but having Down syndrome not only limits an individual’s quality of life and life expectancy, their physical ability to cope with a transplant is compromised.’
I start to think that maybe the professor is not so clever. He doesn’t know that it is the Up syndrome not the Down syndrome.
‘Harper would have to follow a complex anti-rejection drug regimen which can have severe side effects, not to mention the round-the-clock support required to ensure she adheres to this.’
He clears his throat again. I give Wài Pó a look that means she should give him one of her candies.
‘Hong Kong is a small place. It may take a long time to find a matched donor, by which stage Harper’s condition will have significantly deteriorated. Sadly, she is not an appropriate candidate for a heart and lung transplant.’ He slides a piece of paper towards my dad. ‘Here is our preliminary report.’
I am getting a bit frustrated by all this talking, so I stand up.
‘I have to say something. First of all, it is called the Up syndrome not the Down syndrome, and second of all, I don’t know why everyone has to be so upset today. I would like to let you know that I am happy for you to fix my heart so that it is like that model.’ I point to the plastic heart. ‘But I will not be needing a new heart and new lungs, because I like my own. You have fixed me in the hospital before and you can do it again without giving me new parts.’ There has been so much information in this hospital room today and it is giving me a sore head, but I don’t tell them that. ‘Last of all: Wài Pó, please share one of your sweets with the professor. He has a sore throat.’
‘Thank you for sharing your thoughts with us, Harper,’ the lady with the shell says. ‘We understand that this must be –’
‘Please sit down, Harper.’ Marlowe interrupts the lady, which is rude, but her voice is very soft and gentle.
My bum goes back onto the wheelchair seat and I rest my head on Marlowe’s shoulder. In my mind, there is an image of a heart. Hearts are supposed to be red or pink, like the professor’s model, but the one I can see is black, wet and sticky. I must close my eyes and take a breath – this is something that Ms Amanda Li, my independent living teacher, says is ‘a technique for coping with emotional stress’. I know that sometimes my mind can play tricks on me when I feel the stress.
‘Surely there must be something you can do?’ The sound of my dad’s voice makes me open my eyes again. It is like his lonely words have fallen to the ground and no one saw them leave his lips. The fire in his heart is out.
‘This is a complex matter, and Down syndrome complicates the situation further.’
‘Um excuse me,’ I clear my throat again, like the professor does because that is what smart people do. ‘I said it was the Up syndrome,’ but no one seems to hear.
‘So,’ Dad says slowly, ‘what you’re saying is that you won’t help my daughter because she has Down syndrome.’
The professor wipes his forehead. Dad must have sparked flames again.
‘It’s not as simple as that, Mr Eve. We just don’t have adequate supply to meet the demand. We have a long waiting list for all organs, and Harper needs both a heart and lungs. Her physical and mental ability to cope with the treatment that is necessary after the procedure is severely limited.’
‘You won’t even put my daughter’s name on this waiting list, because she has Down syndrome.’ My dad is growling now.
My stomach begins to ache and my mouth is dry. Why does everyone keep saying things that make me feel alone?
‘Even though your daughter is considered high functioning for someone with a disability, when assessing suitability for an organ transplant we take into account a number of factors, including the stage of the disease, life expectancy, capacity to contribute to society –’
The fire cracks and sputters. Dad jumps out of his chair.
‘How dare you.’
I hold my breath. The heat, the heat, the heat.
‘Are you suggesting my daughter doesn’t contribute to society? She has a job as a librarian’s assistant, loves to cook, has a mature, devoted relationship with her boyfriend and, above all, she is one of the most loving, compassionate and caring young women I know.’
‘Calm down, Mr Eve.’ The lady with the shell reaches her hand across the table. ‘I can understand you must be devastated by –’
‘Come on, James.’ Stepmonster stands and collects her things so quickly it hurts my eyes to watch her. ‘Let’s get out of here.’
‘Where are we supposed to go?’ Now I think my dad looks a bit old. His face is tired and his eyes are empty. He always puts out his flames before they reach Stepmonster.
‘We can offer Harper pain relief. In-house care or a hospice is also something worth considering as her condition deteriorates.’ The professor closes his folder with my name on it.
‘The Sha Tin hospice has a great reputation.’ The lady with the shell slides a few coloured papers in Dad’s direction.
‘My daughter is more than her disability. She deserves a chance to fight this, just like anyone else her age.’
Yes, I think to myself. This is the Up syndrome.
The professor looks at his watch. ‘I’m very sorry…’ He looks at the lady with the shell. ‘Perhaps Maggie could provide further assistance.’
‘James.’ Stepmonster places her hand inside Dad’s. ‘Let’s go.’
My dad makes his collar straight again. Everyone stands to leave. Stepmonster pushes me into the hall and I can tell she is in a hurry to leave by the quick sound her heels are making on the floor. I look back at the large room with the poor, broken skeleton and the garden painting.
‘Mr Eve?’ The lady with th
e shell runs up to Dad and hands him a card. ‘If you ever need anything, here are my contact details.’
Dad doesn’t take the card. He turns his back on the lady with the shell and presses the button for the elevator. I turn and see Marlowe behind me. She is very serious. I think she is like the water, and her waves are very still. I think that soon they might overflow.
As we are waiting for the elevator, I decide to write a final entry in my notebook.
She was luky. She had the lady with the shell looking after her and a smart profesor who said she needed a tran-s-plant. A tran-s-plant is a way to fix things, done by a profesor. It can be a confuseing word, but it is not a scary word. There is no need to be upset about this word. She knew that soon the hole in her hart wuld be fixed so she did not understand why her family was so upset.
I shut my storybook, even though I want to leave it open on my lap for everyone to see; there is no need for everyone to be so upset in their hearts and minds. I know everything will work out, like it always does.
Marlowe
I feel light-headed. It must be the jet lag, I tell myself.
‘Marlowe?’ Dad was holding the door to the lift open.
‘I’ll meet you in the lobby in five.’
I needed coffee. On my way to the vending machine, I think back over the conversation with the cardiologist, dissecting it, trying to make sense of it. Already it seemed unreal, remote, like it hadn’t actually happened. Was there really nothing more that could be done for Harper? She couldn’t die. Just breathe. Then I thought of Harper and wondered how she had made sense of the day. What was she feeling? It must be so hard for her, not being in control of her body. Her life was going so well, and then she got sick again. Even though she didn’t show it, I knew she was scared.
I shoved coins into the vending machine quickly, one after the other, until I realised I had rammed a two-dollar coin into the slot and it was stuck.
‘Damn it.’
My crappy can of Nescafé was only a few inches from my grasp behind the glass screen. I kicked the metal base, and my eye caught sight of a sign in Chinese and English: This machine does not accept $2 coins. I let out a groan.
