‘You had a big sleep,’ my mum says as she puts down her Sudoku puzzle. ‘Are you okay?’
I’m still trying to catch my breath and remove the sexy thoughts in my head. God. I hope she can’t read my mind. I’ve never had a dream like that before. I think the prednisone medication is making me crazy. I can still feel a tingling sensation between my thighs as my mind becomes occupied with sex for the first time in my life, along with a rising panic as I realise that I might never know what it feels like to make love or be in love with someone. I may never get the opportunity to have a family or build a future of my own. There’s a ticking time bomb on my back, and I don’t want to die a virgin ballerina. Completely untouched. Not a hand laid on me. Not even my own. I don’t know why this upsets me so much. This urge to know what it’s like to experience someone else’s touch is unlike anything I’ve ever felt before. But how could any man desire me the way I am now? I don’t want to leave this earth without feeling that kind of love. ‘Mum,’ I say, ‘when did you first have sex?’
‘Um. Oh.’ Mum quickly becomes flustered at my bizarre choice of topic. ‘I. Um. Well. With your father, of course,’ she says.
‘No way. You can’t have. You’ve only had sex with one person?’ I say.
‘It’s true,’ she says, shifting from side to side in her chair.
‘What’s it like?’
‘Ah. It’s nice. Chloe, where is all this coming from?’
I sense that she wants to shut down this conversation. ‘I dunno… Just curious, I guess.’ And just like that, the conversation is over.
* * *
‘Good morning, Chloe.’ A doctor has walked into my room. Yet another doctor I’ve never seen before. I’ve been here so long that I’ve met all the doctors throughout all their rotations: nephrologists, neurologists, haematologists, rheumatologists, dietitians, physiotherapists, you name it. I’m a case study. No joke. And they still don’t know what’s causing my disease, and there hasn’t been any improvement. At all.
I just want Dr Shaan back. He made me feel positive they were going to solve the case. Sitting in my bed, I know my expression says that I don’t give a toss today. The doctors only deliver bad news and I’m really not in the mood.
‘Your kidneys seem to be opening up just a little bit. Not much, but there has been a slight improvement,’ the doctor says. What? I can’t believe it. He continues. ‘Also, I’ve been talking to the other doctors and we think it might be nice for you to have a half-day release pass so you can get out of the hospital and go and have lunch somewhere. How does that sound?’ he says.
‘Are you serious? I’m allowed to leave?’ I say, my expression now very much giving a toss.
‘Well, only for a few hours, and you’ll have to stay away from big crowds. If you need to be near people, we’d like you to wear a mask. Your immune system isn’t in good shape at the moment and we don’t want you catching anything. Okay?’
I turn to Mum, grinning from ear to ear. ‘Can we please go on a picnic? I just want to lie under a tree.’
Mum takes a breath and for a moment her face takes on a faraway look. I’m afraid she won’t let me go, but then her face softens and breaks into a smile. ‘Yes, of course. That sounds wonderful.’
* * *
Six weeks. I haven’t left this hospital for six whole weeks. Dressed in my activewear, I’m sitting in the wheelchair ready to leave. Mum has wheeled me to the entrance of the hospital, where she now takes my arm and helps me out of the chair. Shuffling forward, I take slow, deep breaths through my nostrils as I prepare myself to step outside.
When I reach the big glass doors, the night I entered this place comes flooding back. Six weeks ago, I thought I had a virus. I never imagined this place would become my life.
Mum looks at me. ‘You ready?’
I nod and we take a few steps forward until I am outside. All I see is white. ‘I can’t see,’ I cry. Everything is so bright and it almost feels as if my eyes are burning. I squeeze them shut. I haven’t seen full sun like this since I arrived here. Mum leads me to the car. I’m still squinting while my eyes adjust to the light. Dad jumps out of the car and helps lift me into the back seat next to Phoebe. It’s strange; the car feels so foreign.
As we drive to our picnic location, I’m glued to the window. It’s like I’m seeing the world for the first time. It’s a beautiful day, the sky a sparkling pale blue, but the wind is fierce. No one seems to care. Buildings I’ve passed so many times on my drive to ballet look fresh and new, or perhaps I’ve just never stopped to look at the detail and beauty of my surroundings before. We drive past people playing in parks, out jogging or eating ice creams. They’re so free and happy. I’m not free anymore. This disease has chained me up, taken away all my independence.
It’s only a short drive to King Edward Park, where my parents find a shady spot free from the wind and lay out a big picnic spread. Mum has over-prepared as usual, and there’s a mountain of food along with a huge tub of watermelon.
‘Do you want to play in the park?’ my sister asks me.
‘I wish I could, Fez, but I’m a bit tired today,’ I say.
‘That’s okay,’ she says and runs off to the play gym on her own.
My gaze turns to the food. My dry mouth and body are begging to be quenched. The fluid restrictions make my tongue feel like sandpaper. But today I don’t care. I’m going to eat and drink whatever I like—just for one day.
I reach for the watermelon. The juice is bursting out of each piece, the container filled with pink. My mouth salivates at the thought of devouring the whole tub. I can’t stop at just one piece and end up eating my whole body weight’s worth of watermelon.
I lie back in the cool green grass and rest my head on the blanket. A light wind blows across my face. It’s so peaceful here and I’m content just having my family next to me. I close my eyes, wishing I could stay here forever.
* * *
‘Chloe, wake up. It’s time to go.’ My mum gently rubs my shoulder until I wake up. The sun has gone down dramatically, almost disappeared behind the mountain, leaving only a faint orange glow that lingers in the sky.
‘How long was I out for?’ I ask.
‘Three hours,’ Mum says as she packs away the last of the picnic supplies.
‘Oh no. I’m late.’ I start to panic at the thought of not arriving back at the hospital in time. A few hours ago, I never wanted to go back there.
‘It’s okay, I let you sleep a little longer. I’m sure they’ll live,’ Mum says.
God I love her.
Dad helps me back to the car and we set off for the hospital, my eyes once again glued to the window, what might be the last sunset I see for a while reflected in my eyes.
* * *
As we pull into the hospital entrance, my happiness begins to shatter. I don’t want to get back into that hospital bed anymore. I just want to run away, far away, back to another life; my old life.
My sister had been preoccupied with colouring in, but now she looks up and spots the hospital. ‘Where are you going, Chloe?’ She brushes her mousey-brown hair away from her eyes which are filled with concern. ‘Aren’t you coming home with us?’
My heart fractures; a hairline crack that might never be repaired. ‘I have to go back to the hospital, Fez. I need to get better.’ I give her a kiss, then Dad lifts me from the car.
Her little face continues staring at me through the car window. I don’t think she realised I was only allowed out for the day. I’ve never seen her so sad in all my life.
* * *
Waking up the next morning, all I can think about is, Watermelon. Watermelon. Oh watermelon. Sweet juicy liquid running down the back of my throat. Oh, how I love you. But today? I hate you.
My legs, stomach and eyes are puffy. All the liquid I had yesterday has caused me to blow up, and it’s all my own fault. An oxygen mask is placed over my face—my breaths are short and shallow. There’s fluid on my lungs.
Ding.
My phone goes off. It’s Jake.
Hi Clo, I’m going to come by to say hi today. See you later. Jake xx
I message him back faster than humanly possible: Don’t come. I look like crap today. Please. I couldn’t bear for him to see me like this. My eyes are so swollen I can hardly see through them. I’m drowning inside my own body.
* * *
A few hours later, I’ve been booked in for extra dialysis treatment late tonight because in their words, I was ‘so naughty’ with my fluid intake yesterday. Well, I definitely learnt my lesson.
I’m sitting in my bed feeling sorry for myself when I hear, ‘Hi, Chloe.’ I turn my head to see Jake’s beaming face in the doorway.
‘Jake! I told you not to come. Why did you come?’ An angry fire ignites in my belly and rises up my body, flushing my cheeks.
‘I wanted to see you,’ he says, and through my anger I clock that there’s a gift in his hands.
‘Well, I don’t want you to see me! I look terrible. I’m all puffy,’ I say, and he looks a little taken aback at the harshness of my words. I can’t help it. I look like a monster and this man who right now I only want to see me at my best is seeing me at my absolute worst. And now he’s seen me, I suspect he’ll turn around and walk away. But he doesn’t. He walks right over to me and sits down.
‘Tell me how you’ve been,’ he says. At first, I want to scream and hide my face under a pillow. But he doesn’t seem to care that I look terrible, he just wants to talk to me. I can’t believe it. I don’t know how one person can be so kind. He sits with me for over an hour and listens to all my worries. I want him to stay forever.
When he finally leaves, he passes a nurse on his way out. She gives me a little smirk. ‘Is that your boyfriend?’
‘No, he’s just a friend,’ I say, nervously checking to see that Jake is out of earshot.
‘Well, that’s funny,’ the nurse says as she pushes a few buttons on the machine next to me to take my blood pressure. ‘All the nurses thought he was your boyfriend because he comes to visit you so much.’
‘Nope. Just a friend.’
‘Right,’ she says with another smirk, quirking her eyebrow like she doesn’t believe me.
* * *
It’s always the quiet moments at dusk and dawn I hate the most. The times when my parents have left for the night, or are still sleeping in their beds at home. When people like Jake, who bring laughter and conversation to my room, suddenly disappear and everything is still again. Alone, my mind is consumed by nasty thoughts, and I try to wrestle the negative feelings with positive ones. I want to stay strong, but when I’m alone, horrible thoughts engulf my mind and body as I ruminate on everything that has happened to me so far.
I literally have no idea when, or if, all this will end. Or how it will end. Some days I feel like my disease will eat away at my body until there is nothing left.
I think about everything I have lost. The one thing I had that was all mine was dance. It was my life and it is gone. I don’t know how I’m going to live without it, and I’m worried that I’ll never live a normal life again. My future is so uncertain, and many nights I pray for the world to swallow me whole so I no longer have to deal with the pain. In those moments, I allow myself to cry. With no one to distract me from my own thoughts, I cry and cry and scream out to the universe in my mind. I grow mad at myself, and mad at whomever the person is who calls themself God for letting this happen to me. Shoving my face into my pillow each night is the only way to muffle my screams. Every night and every morning, I go through this same routine until someone comes to my side and pulls me from the dark tornado I’m trapped in.
My mum would probably kill me if she knew I was thinking like this. She needs me to stay strong. She needs me to stay positive. She needs me to stay alive. The only way I can do that is to keep imagining myself standing at the ballet barre. Dancing free. Happy. Alive. Where I’m the girl I once was. I ache for her.
CHAPTER THIRTEEN
Home and back again
OCTOBER 2008
My royal-blue Pilates mat goes with me everywhere. It’s been with me for every competition, every exam, every holiday, so I can stay strong wherever I go. Today it’s rolled out next to my hospital bed, courtesy of my kickass mother. I begged her to bring it in after I asked the doctors if I could start stretching. They’d said something along the lines of, ‘Yes, of course you can do a couple of stretches. It would be good to get your body moving a little bit.’ They obviously had no idea what type of stretches a dancer does, but I wasn’t about to tell them.
Lowering myself slowly off my bed, I land on my mat. It’s been almost two months and I haven’t done any form of stretching or dance-related activities in all that time, and I’m so excited. I sit up straight and slowly put one leg out then the other into a side split. My body collapses forward as my legs splay back past my hips. They are going back further than ever before. The muscles in my hips have deteriorated so much that it has made me even more flexible. This is bittersweet though, because it means I have absolutely no strength to balance myself out. I’m a ragdoll.
As I start to go through my old stretch routine, I realise I don’t have the energy to make it past the third stretch. With a sigh, I lie on my back, legs in a frog position, and picture myself back in the dance studio.
‘Chloe. Goodness, what are you doing down there?’ Dr Shaan is peering down at me.
‘Oh, Dr Shaan. Hi. Sorry, I was just doing a little bit of stretching. I’ll, um… I’ll just get up now.’ I grab onto the edge of my bed and climb back up to face him.
‘Right,’ he says. ‘Well, Chloe, good news—we’ve seen a little bit of improvement in your bloods, and I think you’re stable enough to go home.’
I sit heavily on the bed, thinking I must have heard him wrong. ‘I–what? I get to go home?’
‘We’re going to trial you at home for a little bit. Now this doesn’t mean you are better; we still have a long road ahead of us. You’ll still need to return to the hospital every day to have dialysis, plasmapheresis and other treatments, but you can sleep in your own bed again. We’ll give you all the medication and supplies you need. Okay?’
I’m nodding so fast and hard that my head is in danger of falling off as he keeps telling me all the things I’ll need to do, including keeping a diary of my weight, urine output and blood pressure throughout the day and night. But when he reminds me to stay away from large crowds, my smile fades. I think about the reality of leaving the safety of this hospital. I’ve had nurses on call to help me twenty-four-seven, and now I’ll have to do it all on my own.
‘I’d like you to have another biopsy next week so you’ll need to stay back here for one night, but then you can return home,’ Dr Shaan says, breaking my reverie.
Hold up. ‘What? Why do I need a second biopsy?’ Fear wobbles my voice. The biopsy was so painful last time. I can’t go through that again.
Dr Shaan peers at me through his glasses, his eyes soft with sympathy. ‘I’m sorry, Chloe. We need to do a few more tests. But I’ll be performing the procedure myself this time, and I will not hurt you.’
I’m sceptical. ‘You promise?’ These doctors don’t always tell me the truth in here.
‘Cross my heart,’ he says with a smile. ‘I’ll see you next week.’ Then he swivels on his heel and walks out the door.
* * *
Five whole days. I’ve spent five days at home. The moment I saw the house, I burst out crying. Relief, as I realised I had finally escaped that hospital. There are no nurses waking me up in the middle of the night, no screaming patients, no noise. Nothing. I’ve been sleeping like a baby—although I’ve been keeping my phone right next to me with Mum’s number on the screen in case I feel a seizure coming on. I haven’t told her this; I’d hate for her to think I was frightened.
Nothing has brought me more joy than to sit at the family dinner table with Mum, Dad, Phoebe, Nan and Pop, and listen to everyone banter. Wrapped up in a blanket to wa
rm my forever-freezing body, I don’t contribute much to the discussion, but my soul is filled with happiness just to be in the company of the most important people in my life. Zac has even been making extra trips over here with his new girlfriend Riley so we can all welcome her to our home and be united as a family, like old times.
Mum has been anxious about looking after me at home, without a nurse on call, but together we have managed to get into a routine: weighing me in the morning, measuring my urine output, taking my truckload of medications, taking my blood pressure, sticking to my low-sodium diet, taping up my permacath to shower—we are all over it.
I spend most evenings sprawled across the sunbed, Mum and Nan drinking tea beside me as I watch my little sis run up and down the back veranda with Sammy. I never took the time to enjoy such simple pleasures prior to getting sick. Illness has put my old life on hold, but it’s opened up my eyes to the importance of family over everything else. Even dance.
I still have to be at the hospital for seven hours a day, but it’s been heaven coming home to my bed at night. Tomorrow though, I have to be back at the hospital for my second biopsy. But afterwards, I’m going to race home and never lie in one of those stupid hospital beds ever again.
* * *
I’m staring straight down at the cold white hospital floor through a hole at the top of the bed. I close my eyes as I hear Dr Shaan opening plastic things and moving about steel instruments. I still can’t believe I have to do this again, and my heart starts to race as I remember the pain of the needle going straight into my back last time. Somehow, closing my eyes makes the procedure a fraction more bearable.
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