* * *
Before I even open my eyes, I know exactly where I am. With aching limbs, I push myself upright on the operating table. ‘You said you would sedate me!’ I yell.
The nurses in front of me freeze for a second before rushing to my side. ‘Chloe, can you answer a few questions for me?’ one of them says.
I’m mad as hell right now. They promised me I would be sedated and asleep for this. After the pain I experienced a couple of days ago, they removed my permacath because they thought an infection was causing my muscle and joint pain. The results? No infection! So now they still don’t know what’s wrong with me, and they need to insert another permacath. Another one! This will be the third port I’ve had so far. ‘I am wide awake. You promised me I would be asleep. You have to put me to sleep!’ My body is still aching. I feel like it’s Groundhog Day. I am in a constant nightmare.
‘Shhh, it’s okay. Lie back,’ the nurse says.
There’s a sharp sting as more local anaesthetic is injected into my chest. If Hell is a place, I am in it.
‘Chloe, are you awake?’ I hear the nurse say.
‘Yes,’ I spit out. Of course I’m awake.
‘If you look up a little, you can watch us insert your permacath on the screen,’ she says.
Curious, I turn my head slightly to see them threading down a long thin tube into my chest that ends right at my heart. ‘Oh wow,’ I say. Wait. I see what she did there. She’s trying to distract me, and it worked. Maybe this permacath doesn’t hurt so much because there was already a path laid out from my last one.
I stare at the screen as they guide things down into my body. My body that is no longer my body. I am not the girl I used to be. The old Chloe is far, far away, and I am scared I will never get her back.
* * *
This night is the worst I’ve ever experienced. A war rages in the sky outside as a war rages inside my body, thunder and lightning cracking and crashing, rain pelting the hospital window. It feels as though the world has decided to cave in on me.
As my blood makes its way up from the dialysis machine through the tubes attached to me, in through the base of my neck and back into my body, my stomach begins to turn. My mum stays with me as I lurch forward and spew into the bucket she holds for me, rubbing my back and pulling my matted hair away from my sweaty, groggy face. ‘It’s almost over,’ she whispers, again and again and again.
Nurses push down hard on my permacath to try to stop the blood that oozes from the new site. It isn’t supposed to bleed so much. Everything is going wrong again. The anaesthetic has well and truly worn off, and my screams are in fierce competition with the storm outside. Every time blood enters my body I throw up, and there is nothing more I want to do than rip the stupid permacath right out of my chest.
When I finally return to J2 to sleep after a traumatic five hours of dialysis, I wake up only an hour after closing my eyes to feel a nurse pressing down on my permacath again. The bleeding just won’t stop. Somewhere in my subconscious, I know everyone else in the ward is listening to my cries as they lie silently in their beds.
It feels like a house is crushing my chest; if they push any harder my bones will surely break. At one point, when the fluorescent lights reveal my crimson gown and sheets, one nurse frantically yells, ‘It’s not stopping,’ and another nurse replies, ‘Should we get the bags?’
I can’t for the life of me work out what she means by bags, but within seconds she is back, struggling to carry something that makes me groan. Sandbags.
I start to whimper at the thought of something so heavy crushing my chest which already feels so bruised and swollen. But crush me they do, the nurse gently lowering the heavy sandbags right onto the incision site, where they stay all night while I lie as still as possible, my mum whispering words of comfort to me as I visualise diving into an ocean, swimming and swimming, the water washing away all my pain. It’s not until the morning that the bleeding finally stops.
My dad arrives and my mum leaves for work.
‘You’ve had a rough night, Clo,’ he says as he sits beside me. The lines in his face seem deeper than usual, and I can’t bear to see him so worried.
‘Have you put a bet on for me?’ I ask him. Even though I’ve just had the worst night of my life, I haven’t forgotten that it’s Melbourne Cup day.
He grins and begins to tell me about all the horses that are racing and which ones are sure to win. It’s a nice end to a terrible night to sit with my dad and watch horses race around the track.
* * *
A few days later, my body no longer aches and I can move around and lift my arms up once more. Sitting in my bed in J2, I pull my knees up to my chest then slowly extend my leg into a hamstring stretch. My feet crack as I point and flex them. I raise my arms above my head to fifth position. They start to shake and I drop them down beside me. I am so weak.
‘Hi, Clo.’ Jake walks into my room. His athletic dancer’s physique makes his navy shirt cling to him. Heat flows to my cheeks.
‘Jake!’ I get up out of bed to hug him. ‘It’s good to see you,’ I say as we both sit on the edge of my bed, positioning ourselves shoulder to shoulder. The warmth of his body radiates out from him.
‘I can’t believe you’re back in here,’ he says. ‘How’ve you been doing? I’ve missed you.’ He turns his head to look at me with his puppy-dog eyes.
‘Well,’ my voice shakes, ‘not so good. I’m not sure anymore if I’ll be strong enough to beat this. As soon as I think I’m getting better, I have another setback and each time that setback is worse. I have new symptoms and… everything is just a mess,’ I say as a lump grows in my throat. ‘What if I never get out of here? What if I never dance again?’ Tears fall from my eyes, he puts his arms around me and my body collapses into his chest. He holds me close. I just want him to lift up my chin and kiss me. He places his hands on my shoulders and looks me in the eyes, and I flush as I’m reminded of the dream I had.
‘I don’t know what it’s like to be in here. But you’re strong, Chloe. I know you can do this and you will be just fine with whatever you choose to do in life,’ he says.
My gaze drops down to his lips, then I look away, wiping the tears from my cheeks. ‘Who knows, maybe I can dance on a cruise ship and hide my dialysis machine in my room?’ I say with a laugh, trying to make things light again.
He gives me a squeeze once more, then places his hands on his lap.
‘You probably guessed, but I’m not going to be well enough to go with you to the ballet,’ I say.
He smiles. ‘You take all the time you need to recover. We can go to a ballet anytime.’
I smile back at how understanding he is. ‘Anyway, enough about me. How are you? What’s new?’
‘Nothing exciting, just working heaps, dancing, and missing Blair.’
I freeze, sit up a little straighter and try to put on my poker face. Stupidly, I still had it in my head that they wouldn’t last. And I thought as we had got closer, maybe their relationship might have fizzled out, because he hardly ever spoke about her. Why was I so naive to think he’d been coming here because he liked me? I’m a fool. He’s spent hours and hours with me, he’s written me letters and cards and invited me to the ballet; we’ve even planned trips away for when I’m better. He’s laughed with me, made me smile and now witnessed my tears. How could I be so stupid to think he might see me as more than just a friend? All these thoughts battle for space in my mind before I realise that I have left too much of a gap in our conversation.
‘Oh… yeah. How is Blair?’ I ask, not really wanting to know the answer.
‘It’s tough over there, y’know? Like, really full on. I think she misses home. But she’s doing okay,’ he says.
My heart sinks a little as I realise that I’ve been feeling something for him that will probably never be reciprocated. If this is what is feels like to love someone, then I don’t think I like it.
We chat for a bit longer, then he gets up, ready to
leave. When he reaches the door, he turns and says, ‘When you’re out of here, I’ll come and visit you at home too, and maybe stay over.’ Then he gives me a smile and disappears.
Why?! I scream in my head. Why would he want to come and stay at my house? He has a girlfriend. I am left confused and a little heartbroken as I climb under my blanket and shut the world away. This is a different kind of pain I haven’t experienced before. It aches deep in my heart.
* * *
‘Good morning, Chloe. How are you?’
What a surprise, it’s a doctor I’ve never seen before. I just wish I could have Dr Shaan all the time, but you don’t get a choice in here.
‘Not so good, actually. I have a headache. You need to get my blood pressure down, it’s too high,’ I say. This might sound crazy, but I know my body so well now that I can feel when something isn’t right.
The doctor’s grey hair sticks up and he slouches to one side. It’s irritating. ‘Your blood pressure is fine,’ he says.
‘No, it’s not. It’s been rising and rising over the last two days and it hasn’t come down at all. I have hypertension,’ I say.
His lanky body straightens up just a little as he screws up his face and scoffs. ‘You don’t have hypertension,’ he says.
I’m shocked. He just completely shut me down. ‘Yes, I do. I was diagnosed with hypertension almost as soon as I arrived in this hospital. Please, I need you to get it under control,’ I say.
He looks at a sheet he is holding in front of him and scribbles something down before saying, ‘Okay,’ and then he leaves. Argh. I know he isn’t going to do anything to fix it.
* * *
That night, I’m sitting alone on my bed and the whole ward is silent. I flick on my bedside lamp and my head continues to throb. My BP has risen even more. I sit cross-legged, watching something strange appear in front of me. There are coloured dots moving in a pattern, swirling—no, dancing. I can’t focus.
And I feel something… I’ve had this feeling before. The feeling becomes stronger and stronger. I think it’s fear. Suddenly, I know what’s about to happen.
I reach back for the red emergency button and scream for help. A nurse is with me in seconds. ‘What’s wrong?’ she says.
‘I… I think I’m going to have a—’ My body is flung back onto the bed, convulsing and contorting. Somehow, I’m still present this time, as though I’m floating above myself, witnessing what’s happening to my body. I give one final scream inside my mind, trying to stop whatever is controlling my body, and then there is nothing.
* * *
Not even twenty-four hours later, my mum has already unleashed on the staff at the hospital. She’s so cranky that my blood pressure wasn’t taken care of, causing me to have another seizure that lasted three minutes yesterday.
Right now, I’m sitting in a big blue chair at the end of a long table surrounded by doctors, two of my dialysis nurses and my parents. I don’t want to cause any trouble, but my parents think it would be best if I had just one doctor taking care of me so I can get the proper care and stability I need to keep me alive. There’s a lot of back and forth discussion, but I’m too worn out from yesterday to concentrate on anything they’re saying until I hear someone say, ‘Chloe may need an AV fistula put in and we’ll possibly have to look at getting her on the kidney transplant list.’
‘No no no no no,’ I whisper under my breath. I have seen those fistulas on the old people in the dialysis ward. They’re awful. It makes their arms all lumpy. I won’t be able to dance if I have that popping out of me. I sink deeper into my chair as they continue discussing my future.
Finally, they come to a decision. ‘Chloe will have one doctor to look after her,’ one of them says. ‘Chloe, who would you like to take over your care?’
‘Dr Shaan!’ I blurt out. I knew from the moment I met him that he would take care of me. ‘Please. I would like Dr Shaan to look after me,’ I say.
‘Done. Dr Shaan will now take over your care, and Dr Reid will look after you in his absence.’
I know this is the right decision.
Just as they’re all about to leave their seats, I say, ‘When do you think I’ll be able to start to dance again?’
The doctor who’s been doing most of the talking turns to me and says, ‘You have to be realistic about your dancing career. You may not be able to have a career as a dancer.’ The room goes silent.
My sadness bubbles up into anger. ‘No one tells me I’m not going to dance,’ I say defiantly.
The doctors all just bow their heads and continue making their way out of the room. I think to myself, Don’t cry, don’t cry, don’t cry. Stay strong, Chloe. Do not let them see you cry.
But as soon as I get to my room, I can no longer mask my emotions. My body trembles as I fight to catch some air between my sobs. I curl up in a ball on my bed, my mind going over everything they just said: kidney transplants, fistulas, no career in dance. I am devastated.
‘Knock knock.’ Nurse John appears beside me and I quickly wipe away my tears and put a smile on my face. My watery eyes tell a different story though, but he kindly looks away.
John was in the meeting today so he is all up to date with my new care plan. He has always been honest with me, and as he hooks me up to the machine, I ask, ‘What happens when you have a kidney transplant?’
He starts up the dialysis machine, then takes a seat. He knows I’m scared of what my future may hold. ‘Well, what happens is that your two kidneys stay exactly where they are and we give you a new kidney that sits down near your hip. You only need one kidney to survive. You have to be extremely careful and look after it well. Sometimes your body might even reject the kidney.’ He speaks calmly—I don’t think he wants to scare me—and I sit there, simultaneously fascinated by what he is telling me and desperately praying that I never have to go through this. He answers all the medical questions I have for the whole five hours I am being dialysed. He explains how a fistula works by connecting veins and an artery in your arm so they have permanent access to your blood instead of needing to have a permacath. I start to wonder if I’ve been in denial all this time, thinking I will just magically get better one day. The last couple of days have been the scariest of my life, but there’s still something in me that doesn’t quite believe that I will ever get to the point of needing a transplant or a fistula. I want to hold out a little longer to see if my body can heal itself.
Mum walks in behind a doctor. ‘Hi, Chloe,’ the doctor says. ‘Dr Shaan is away at the moment, but I have just come around to tell you that we are going to trial you at home again if you are stable by the 19th of November.’
I’m not even excited by this prospect anymore, and I just shrug my shoulders and nod. Something has been pressing at me since the big meeting we had, the tension building and building inside me like an elastic band now stretched to its full capacity. And I’m at breaking point. I need to know. ‘Doctor?’ I say.
‘Yes, Chloe?’ he says as he moves closer to me.
I swallow and look him straight in the eye. ‘Am I going to die?’
He takes a moment before saying, ‘We will do everything in our power to make sure that doesn’t happen.’
Silence.
CHAPTER SIXTEEN
Home life
DECEMBER 2008
At the end of November 2008, I experience a small miracle: my kidneys recover a tiny bit and by the time I go home again, I have 40–50 per cent kidney function back. While I’m at home, they even begin trialling me off dialysis. I feel as though I have always known deep in my heart that I wouldn’t need a transplant or a life-long fistula in my arm. Sadly, all this doesn’t mean I’m better. Whatever this disease is that’s in my blood won’t give up. I keep fighting against it, but again and again, it takes me down. The doctors try to take me off plasmapheresis for a little bit, but it doesn’t work. As soon as I take a break from my treatments, red dots start to appear on my legs, I become chronically tired and they have
to put me back on plasmapheresis three times a week. This disease is vicious, but they still can’t tell me what it is.
* * *
Our family home is big, with three split levels. The interior is carpeted, with staircases and white wooden railings joining the levels. My room is two flights up, right between my sister’s room and the guest room. Walking slowly along the corridors, I encounter my first challenge of the day: the stairs. The girl who would once run up and down these stairs two at a time, bursting with life and energy, she doesn’t exist anymore.
Holding tight to the railing, I use all my energy to lift one foot, then another, taking almost two minutes to walk up just one flight of eight stairs, and I stopped halfway to catch my breath. It irks me that such a simple task has been taken away from me. But I know that if I keep at it, I’ll eventually be able to run up these stairs again; it will just take practice.
I’ve been home for three weeks now without any real emergencies and today I have gathered enough courage to face my past.
I finally reach the top of the stairs and stare at the door. ‘Okay, Chloe, you can do this. You have to start somewhere,’ I whisper to myself and open the door.
This is a place that once brought me so much joy, a place where I could turn my passion into art, where I could let go of my inhibitions—my dance studio. It’s hard to believe that it’s only been four months; it feels like a lifetime.
Hundreds of dust particles dance in the rays of sunlight that seep in through the tiny windows. It’s clear no one has been in this space since I left it.
‘Don’t cry. Don’t cry. Don’t cry…’ I enter the room, head held high, walking straight to the barre like old times. Talking to myself has become a daily occurrence as I roam around at home by myself while my family go to work and school. A little self-motivation never hurt anyone. Placing my hand on the barre, I put my feet in a turned-out first position. My thighs don’t touch anymore. My legs begin to shake as I plié for the first time in over four months. I take a breath. ‘Okay. That wasn’t too bad,’ I say to myself before trying another three pliés. I’m already out of breath.
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