Closing my eyes, I visualise how I am going to execute a grand plié. Then, bending my legs, I sink down into a plié before lifting my heels slightly off the ground and bending further down until my legs are in a turned-out squat position. My legs tremble violently as I try my hardest to push myself back up into a standing position. I engage my non-existent quad muscles to try to get myself back up, but I can’t. Collapsing onto the floor, I massage out my aching legs. ‘Right, I obviously can’t do that anymore.’ I angrily shove the barre with my hands. Sighing, I get back to my feet and shake out my legs, preparing to try a pirouette. ‘Come on, Chloe. You can do this.’ I breathe in, release and bend my knees further to push up and relevé and—
Losing my balance, I collapse to the floor again. A sound I’ve never heard before bursts from deep within me. I wail as I realise that I really have lost everything. Everything I was is gone. My whole identity has been stripped away. I can no longer dance. I hold myself tight as my cries echo through the house, then I take off my ballet shoes and throw them across the room, letting out a scream. The garage door opens downstairs.
Shit.
Mum and Dad have arrived home. Not wanting them to see me upset, or in a dance leotard, I make my way to the bathroom to fix myself up and plaster on a smile so I can tell them what a good day I’ve had.
* * *
‘You guys are home early,’ I say as I take a seat at the kitchen table next to Dad.
‘Yes, of course. We wanted to get home to you as soon as we could. Now, I’ve worked out a schedule so your dad and I can take turns looking after you between work. That way you’ll only have a few hours a day by yourself when we pick up Phoebe from school.’ Mum says all this as she unloads the groceries.
‘Oh, that’s okay. I’m doing pretty good by myself. You don’t have to worry,’ I say, trying to deter them from staying home. Even though I hate the times I’m alone, I want to keep trying to dance without them freaking out.
‘It’s easier if I stay home while we’re still making trips to the hospital. I want to look after you,’ she says. ‘What did you get up to while we were out?’
For a moment, I contemplate not telling her what I really got up to, but if they’re going to be keeping a close eye on me, I decide it’s better to spill the beans. ‘Well… I tried on your wedding dress,’ I say.
Mum pops her head out from behind the fridge door to look at me. ‘You what?’
‘Ah, I tried on your wedding dress. I was looking through the wardrobes and I found it. It’s a little too long for me, but it’s really beautiful,’ I say.
‘Oh dear. You getting a little bit of cabin fever, huh?’
‘Yeah… And… I also tried a little bit of dancing today.’ I look down, not wanting to see her reaction. I hear the fridge door close and Mum walks over to me.
‘What? What do you mean? Chloe, please don’t do anything stupid. Do you really want to do something that lands you back in hospital for a fourth time?’ She sounds mad and Dad sits silently beside me.
I finally look up to meet her eyes, and it’s not anger I see in them, but fear. ‘I just needed to try, okay? I wasn’t very good anyway, and I only tried a few things. But I think it will be good for me to build up my strength a little bit.’ I’m whispering now.
Her eyes soften. ‘I know you miss dancing, but I just don’t want you to hurt yourself. What if those tubes in your chest pop out or something?’
‘Mum, my tubes are fine.’ But this doesn’t stop her from going on and on about them.
I want to tell her that I watched old dance videos of me today. I want to tell her that I can’t cope looking at all the happy and healthy photos of me around the house, so I’ve hidden them all away in a drawer. I want to tell her that every time I catch myself in the mirror, my chest tightens up, and most days I end up crying in a foetal position on the floor. But I don’t. I hate that I’m causing so much disruption and pain in my family. She doesn’t need to worry about my mental health too.
Everything has changed so much since I arrived home. Everyone seems highly strung and my parents keep fighting over silly things. My brother hardly calls anymore because I think he thinks everyone already has too much on their plates, and my sister is being questioned at school because apparently her mood has changed. It’s my illness that has caused all this disruption and I need to make sure I appear positive and happy, even when I don’t feel like it. I don’t want them to worry any more than they already do.
When Mum finally pauses for breath, there’s something I need to ask them that I’ve been thinking about. ‘So,’ I say, ‘I know I won’t be strong enough to go back to dancing for a very long time. But I’ve been thinking.’ I pause and they both look at me intently, waiting to hear what I have to say. I take a deep breath. ‘Can you please enter me in the Sydney Eisteddfod next year? I know it sounds crazy, but it’s not for six months, and I think it might help me to have a goal and also get me fit for when I return to my diploma again.’ This Eisteddfod attracts thousands of the best dancers in Australia. I’ve been a participant since I was fourteen, and I’d do anything to be on that stage again. My mum opens her mouth to say something, but I continue. ‘I want to choreograph a contemporary piece. I’ll only choreograph things I’m strong enough to do, and I promise I’ll go slow and take my time. I just need to work towards getting back on the stage. Please.’
Mum looks to Dad, then back to me. She purses her lips, then exhales. ‘Okay. Okay… But you have to promise me you won’t go overboard and if you aren’t well enough by then, you aren’t doing it,’ she says.
‘Thank you!’ I say and give each of them a kiss. Things are looking up.
* * *
When I get into bed later for my fourth nap of the day, something crunches beneath my pillow. I reach under and pull out two small square pieces of paper. One is red and the other is green. On one is written: Chloe & Jake’s List. I grin.
Jake came to stay over yesterday. We just hung out and played the Wii, but I was too tired to stay up with him. The list contains all the things we want to do together when I’m better: camping, beach, gym, party. It’s cute, and butterflies creep into my stomach. But I’m still so confused. He tells me he misses his girlfriend, yet he is always with me and continues to do these sweet little things. I don’t understand it. Maybe he is using me as an emotional replacement until his girlfriend comes home. If she even does come home. Maybe he sees me as just a friend. Or maybe he really does like me? Either way, he’s messing with my emotions and I don’t know what to feel anymore, and I don’t know how to bring it up with him.
* * *
The next day, I leave the house for the first time since arriving home to attend the graduation ceremony for the diploma class of 2008. The doctors said I could go if I only stayed a short while and made sure I kept away from anyone who might be sick.
So here I am, sitting in the front row, looking up at Miss Carmen as she presents the dux of the school and hands everyone their diplomas. There isn’t enough material on my black silk dress to keep me warm, and I wrap my arms tightly around my chest. It’s summer and I’m freezing. Or maybe I’m just sad that I’m not up there with my fellow classmates. I wanted to receive my diploma so badly. My desire to be a dancer has never stopped burning inside me my whole life, and out of everyone here, I’m the one who hasn’t succeeded.
Miss Carmen finishes the presentations, then looks over the top of her glasses, directly at me. ‘Our beautiful Chloe. We know you will be back fighting fit very soon. We are so proud of what you have achieved this year and would like to acknowledge your hard work with a certificate of attainment,’ she says. My classmates all clap and cheer as I stand up to receive the certificate. My mouth quivers as I smile, standing in front of my peers, knowing that I didn’t achieve what I set out to. Widening my eyes and smile, I make sure I don’t cry. The crowd witnesses a happy and grateful Chloe, and I pray they don’t call my bluff.
It’s funny how life works.
Sometimes when you want something so badly, the universe comes in and rips it right out of your hands. But maybe it’s just not my time yet.
After the ceremony, my energy starts to fade as I try to keep up with my classmates’ discussion about the dance contracts they’ve been given. I’m still so sick that I can’t even stay out for more than a couple of hours, so I wish my dance friends well and tell them to keep me updated on their dancing adventures around the globe. I have neither the mental nor physical energy to enjoy this moment. I thought this would be my year. But for now, I just have to keep my chin up, return home, and continue trying for that pirouette.
Over and over and over again, until it’s my turn to dance.
CHAPTER SEVENTEEN
Diagnosis
MARCH 2009
I’ve been home for three months and still don’t have a diagnosis. Anxiety creeps into my body almost every night, and I have reoccurring dreams of my teeth falling out. Sometimes I even experience sleep paralysis, where my mind is awake but I can’t move my body. I’m carrying around a backpack labelled Anxiety that constantly weighs me down.
Two things contribute to my constant distress:
1. Not knowing if or when I will get a diagnosis
2. Jake
Jake seems to have vanished into thin air since spending that day with me at home in December. Jake & Chloe’s list is the last form of communication I had with him. No calls, messages, cards or letters. Nothing. He has disappeared out of my life completely.
After a quick lurk on his Facebook page one evening, I come to the conclusion that I might never see him again. Right there in front of me is a brand new picture of him and his girlfriend, Blair. She came back.
My mind is in shambles, not knowing what I did to make him want to disappear from my life so suddenly. My heart feels as though it has been ripped out and dumped in a field far away where it’s desperately trying to find its way back to me. Part of me is dying to reach out to him and demand answers, but I know he is preoccupied with Blair. I’m not on his mind like he’s on mine. So I have to move on.
And as the months go by, he occasionally worms his way into my mind and I reminisce on all the beautiful moments we shared together, but I quickly shake off those thoughts and get back to focusing on my recovery.
It’s not until the end of March 2009 that Jake becomes more of a distant memory. A blur. At least that’s what I tell myself.
And as for the other cause of my anxiety, one sunny afternoon my mum gets an unexpected call from Dr Shaan. He informs her that we need to see him immediately in his medical rooms. I’ve been waiting since 25 August 2008— that awful day I arrived at the emergency department—to get a diagnosis. This is the moment when everything will fall into place; the moment I will finally be set free and on my way to a rapid recovery. Or so I thought.
* * *
Sitting in Dr Shaan’s office, Mum in the chair beside me— her notebook and pen in hand—and Dad perched on the examination table behind us, we eagerly await my diagnosis. My whole body is shaking with anticipation as Dr Shaan takes a long moment to stare at his computer screen. Then he turns to us and clears his throat.
‘Chloe, Mr and Mrs Bayliss. I have suspected this for some time, but I had to be sure,’ he says as he leans forward in his chair. ‘We have found the cause of Chloe’s kidney failure and all the other terrible things she has been through in the last seven months.’
I just want him to spit it out already, and my chair shakes as my leg bounces up and down.
‘Chloe, you have an autoimmune disease called systemic lupus erythematosus (SLE), or simply: lupus. It means that your body’s immune system has been getting confused and attacking the healthy cells in your body. It’s the cause of your kidney disease and the most likely the reason you developed TTP. Lupus can cause severe joint and muscular pain and, sadly, can attack any organ in your body. At the moment, you have lupus nephritis class III–IV. You have been a very sick girl,’ he says.
I stare at him, my brows furrowed, eyes wide, my brain ticking over. ‘So, does this mean you can treat me correctly now?’ I ask.
He nods. ‘Now that we know what it is, we can treat you with the right medication. But we still need to get the TTP under control. You will need to continue having plasmapheresis for at least another six to nine months, and I want you to have another drug called Octagam that will need to be administered in Gosford Hospital over the next six months.’
My mind is bursting with questions, but all I really want to know is when I can get these tubes out and dance again. ‘When will I get my permacath removed?’
He lets out a sigh. ‘I’m sorry, you’ll need to have your permacath in for a very long time.’
A lump forms in my throat and I try to ignore it. ‘Once you give me the medication, will I get better?’
He glances at my mum and dad who have both leaned forward. ‘Unfortunately, we can’t cure lupus, but we can control it,’ he says. ‘I’m going to put you on a number of medications to stop you having what is called a “flare-up”. You have a very severe flare-up at the moment, so we need to get you into remission. This is where you don’t have any symptoms and your disease is under control,’ he says.
‘So I’ll have this disease forever?’ I ask.
‘Yes, Chloe. You will have this forever and will need to take medication for the rest of your life. But the good news is, we are able to treat it and manage it. And with the correct treatment most people live a normal lifespan.’
Most people? That’s a concerning statement.
Mum asks, ‘How did she get it?’ She’s been ferociously writing down in her notebook everything Dr Shaan has been saying.
‘We are still unsure how many autoimmune diseases develop, but we do know that lupus is most common in females between the ages of fifteen and forty-five. You can’t catch it or pass it on.’
My parents pipe up with a number of questions while I sit silently trying to take this in. My brain attempts to check out from this information overload. Part of me doesn’t want to believe I’ll have a disease for the rest of my life, but part of me is relieved that at least now I can be treated correctly. I’m numb. But strangely, not sad. Perhaps I’m in denial about the whole situation. How could I possibly have a disease that could not be cured?
* * *
In the weeks following my diagnosis, I find myself getting more and more depressed. The TTP is still viciously attacking my body, my blood is continuing to be destroyed, and even though I was told my symptoms can be controlled, I still have no idea when that will happen. I’ve ruined so many family events because of things that have gone wrong with me, when I’ve either been rushed to the doctor’s because spots have started to appear on my body, or I just simply can’t stand up because I’m so anaemic and out of breath. Nobody in my family smiles anymore. Every single person’s life has been put on hold because of me. There is a permacath still lodged in my chest, and my face is so round and pale from taking prednisone that I could be mistaken for the moon. I’m scared for my future and what it will entail. I’m missing out on what are supposed to be the best years of my life. And I can see how much it hurts my family, so sometimes I think it would be easier on everyone if I weren’t here at all.
One day, when I’m feeling so low that I’ve begun fantasising about leaving this earth forever, I hear my sister running up the stairs to my room. ‘Chloe! Where are you?’ She pushes open the door, her face glowing with excitement just to see me. ‘Clo-bow!’
She snaps me out of my dark emotional state. My sister needs me. I close my eyes as I’m overcome with grief. She doesn’t realise that I need her just as much as she needs me. She’s the reason I need to stay right here on earth.
The next morning, I start my Pilates and dance routine. I know if I have a goal, I can get through this. I find a piece of music I want to choreograph, a contemporary piece—an obscure song from a rock band that features a number of voices: a young boy who becomes a man and then
grows old. The voices on the soundtrack are muffled with just a piano supporting them. It’s a little spooky, but something about it resonates with how I’m feeling. I want to dance to this music at the Sydney Eisteddfod in June.
I can’t jump yet, but I can move my body in ways that don’t make my permacath feel uncomfortable, and I just need to be on stage.
As my body starts to move and contort in different directions, I feel the weight of the past eight months push against me, as though my soul is trying to rip its way out of me. The pain flows out of me as I desperately try to let go. And even though after only a few seconds into my routine, my heart is already racing, I feel a small part of it begin to heal as I reflect on the movements I’ve just done. Slowly, slowly, I’m getting there.
Dance will set me free.
CHAPTER EIGHTEEN
Jake
LATE MARCH 2009
‘Chloe? It’s time to go,’ my dad yells from the bottom of the stairs.
‘Okay, okay, I’m coming,’ I say, pulling a jumper over my head and making my way downstairs.
Dad’s driving me to Gosford today to get the Octagam drug. They administer this drug in a cancer treatment centre. People young and old, most with bandanas covering their balding heads, sit in a dimly lit room. There’s an eerie, solemn vibe, as everyone keeps to themselves. I know now that I’m not the only one fighting battles, and I ache for those people who always sit around me.
My treatment takes six hours so I usually just write in my journal and sleep.
‘You right?’ Dad says as he helps me into the car.
‘Yep, I’m all good,’ I say and he hops into the driver’s seat and turns on the engine.
‘Now, Clo, I know you want to start driving lessons again and continue getting up your hours,’ he says, ‘and I know you want me to continue teaching you, but your mum and I thought you might like some lessons with a professional.’
En Pointe Page 14
