I’ve been taken off my anti-seizure medication so I’m now allowed to get behind the wheel again if I am not too tired and I’ve been begging Dad to let me drive again.
‘I’ve booked you in to have a lesson in two weeks’ time,’ he continues as he changes lanes on the freeway, ‘but if you aren’t up for it, we can cancel. The teacher already knows your history.’
I miss my morning routine and Dad getting flustered and anxious while I’m driving, but he explains that professional lessons will help me learn exactly what the driving examiners want. He thinks this will give me the best chance of getting my licence the first time I go for it. It’s a step in the right direction, and right now, all I want is to be a normal teenager again. Turning to Dad, I simply say, ‘Thanks, Dad. That will be nice. I’ll miss you hanging on to the door handle for dear life.’
He chuckles and I give him a grin. Things in my life are slowly starting to return to normal.
* * *
Sitting on the floor of my home studio, I hold one of my pointe shoes in my hand. I run my fingers along the shiny pink satin until I reach the last quarter near the heel of the shoe. Wrapping my hands around this part, I make sure the shank in the middle of the shoe stays straight, then I bend and crack the heel back and forth to create the perfect arch for my foot.
Standing up, I put all my weight onto the front part—the box—of one shoe, squashing the top of the shoe to make room for my foot. I bang the box on the ground a little to try to remove any noise from the shoe. I’m trying to mould my pointe shoes so they are soft enough to create a nice arch in my feet but hard enough to still support my ankles.
I repeat this whole routine with the other shoe before slipping them both on to my feet. Their tightness restricts my toes as I squeeze into the shoes. Just another thing I hadn’t realised—my feet have softened, widened and splayed out just a little. I’d forgotten what it feels like to wear pointe shoes, and now I need to train my feet to love them again.
Standing with my feet parallel, I place my hands on the barre. I slowly rise up on to a demi-pointe before pushing up and over onto my shoes. What used to be such a simple task is now a huge challenge; it’s as though I’m wearing pointe shoes for the first time in my life. I have little to no calf muscles anymore to help push me up. My ankles feel loose and unstable and I grip the barre tighter to support myself. The backs of my legs are on fire.
Slowly, I roll through my feet, lowering to the ground to repeat the whole process again in first position. I promise myself I will walk around the house in my pointe shoes a little bit every day until my feet adjust to them again. It will take time, but I will get there.
I remove my pointe shoes and my red and sweaty feet relax onto the vinyl floor beneath me. Pulling my hair out of its messy bun, I walk to the centre of the room, preparing myself to dance. I breathe, then on my exhale, I twist into an obscure shape, my body rolling and my hips twisting as I flow from one move to the next. The moves are abstract, yet pieced together they flow like liquid as I glide across the room.
I feel free. Contemporary dance truly has my heart.
Spinning across the room, I prepare to leap into a jeté. My right leg swishes off the ground and I push my second leg up to a split and hover in the air. I’m flying.
I don’t make it.
‘Damn it,’ I say, my breaths fast and heavy. I think that’s enough for one day. I only have the energy to get through half of my routine, but I’ve got three months until I will finally be onstage again. I have to keep trying.
* * *
I’m dressed in blue jeans, a black top and navy-blue cotton scarf wrapped loosely around my neck. I know I shouldn’t care, but the scarf is really just there to cover up the tubes from my permacath. The last few days, I’ve been making small trips outside of my bubble—mainly to the grocery store—and I can’t stand it when people see my tubes and the sympathy that glosses up their eyes. The kids stare at me all day long like I’m an alien. But tonight is a special occasion, so I’m making a conscious effort to keep my tubes out of sight. Tonight I’m a normal teenager.
‘Chloe, you have a visitor,’ Mum yells out to me, and I make my way downstairs.
At the bottom of the stairs is a gorgeous girl, long legs, sun-kissed skin and sandy blonde hair, her arms outstretched. ‘Chloe!’ she says as I reach her, and she picks me up and spins me around.
Katy is more effortlessly beautiful than before. I don’t know how that’s even possible. I’ll never forget those first few years after I moved to Newcastle when I was fourteen, when she would come down from Port Macquarie, her free spirit always lighting up my life. Tonight we’re going to a Kings of Leon concert. Last week Mum surprised me with tickets and said I could take whomever I like, knowing full well that I’d choose Katy. Katy has always had the ability to help me let loose and forget my worries.
‘Ah, I have missed you so much!’ She puts me down and assesses me. ‘Gosh, Clo, you are way too thin. What did they do to you in that hospital?’
I’m smiling so hard my cheeks hurt. ‘I’ve missed you, too, Katy. Life just isn’t as fun without you in it!’
She gives me another squeeze, and she’s the same girl I knew in Year Eight. ‘You’ve had me so worried,’ she says. ‘When I asked my dad what it meant when you were in ICU he just said, “It means she is knocking on Heaven’s door.”’ She grabs either side of my shoulders. ‘You always have to be the star of the show, huh?’
I push her away. ‘Very funny. I appreciate your sympathy.’
She grins before her face becomes serious. ‘Really, Clo. I was so worried about you. I don’t know what I’d do if you weren’t here anymore.’ She’s about to say more, but Dad interrupts us.
‘Time to go, girls.’ He jiggles his car keys in front of us, and I’m thankful for the distraction. I really don’t want to think about my illness tonight. I’m elated to be having my first big night away from the security of my house, and switching out doctors for teenagers. It’s going to be wonderful.
* * *
Dad pulls up to the entrance of the Entertainment Centre, and Katy and I hop out of the car, wave Dad goodbye and start to make our way through the crowd. I’m so excited, but also a little overwhelmed by the amount of people who are here. Katy sees me hesitate and slings her arm around my shoulders as we push our way through the crowd.
Heads turn as we walk, all eyes on Katy, of course. She never seems to notice the constant gazes and gobsmacked faces that follow her everywhere she goes. Her natural beauty radiates from every inch of her body, even though she stays wrapped up in her own little world. She starts to tell me about how she won’t be able to survive her Year Twelve exams if her ridiculously academic boyfriend doesn’t help her study. ‘I swear, I just can’t do it… What am I even going to do with my life? I just want to travel the world and have fun. School is just way too serious, Clo. Give me a beach and a book, and I’ll be happy.’
I shake my head and scrunch up my face at her. ‘You’re ridiculous, you know that?’ I say. I feel so happy right now. I’m finally out of my bubble, being independent and going to a concert like any other girl my age. I can’t stop laughing at the silly things Katy tells me about school and her apparently overwhelming social calendar.
As we push through more people, we finally reach an opening in the crowd. But as I look up in the middle of my latest fit of giggles, the laughter dies in my throat. I’m standing face to face with Jake.
‘Hey, Chloe,’ he says casually. ‘I didn’t know you were going to be here. You look great. How have you been?’
My blood is boiling. Not because of rage. I think it could be jealousy, or perhaps sadness at the fact that I’m standing in front of someone who was my anchor, my best friend, the person who held my hand and lifted me up when I was going through such a terrible time, someone who made me feel things I’d never felt before, but I feel as though I’m standing in front of a stranger. All the mixed emotions that have been building inside my
heart about him over the past three months bubble to the surface. ‘What happened to you?’ I say, trying to stop my voice from shaking. ‘You just disappeared out of my life. I haven’t seen or heard from you for months.’
‘I… Well…’ he stammers, lost for words.
I stare right into those chocolate-brown, puppy-dog eyes that once looked at me with kindness and affection. I need to know what went wrong. ‘What? Is it because your girlfriend came back? Is that why you don’t stay in touch anymore?’ I clench my jaw to stop the urge to reach out and hug him, tell him how much I have missed him.
‘I… Sorry, Clo. Blair did come home and I guess… we just got busy,’ he says finally. I can tell he is surprised by my reaction.
‘Oh, so just because your girlfriend is home you can’t be friends with me anymore?’ I don’t know what’s come over me. But I’m so hurt. I know I wanted to be more than friends with him, and perhaps that’s why I’m so enraged. It’s like the bond we had never existed, even if his only intention was to be a supportive friend in my time of need. Now he wants nothing to do with me and there isn’t anything I can do about it. I’ve been tossed aside like garbage. But I’m worth more than that.
‘I’m sorry, okay? I’ve just been busy. I really hope you’re doing better,’ he says, shutting me down. Without looking at him, I tell him to enjoy the show, grab Katy’s arm and drag her away. I’m trembling. I don’t know whether to laugh or cry.
‘OH. MY. GOD,’ Katy says. ‘Are you okay? What just happened? Is that the guy who kept visiting you in hospital?’
I nod. My whole body is shaking and the room around me seems to be spinning. I can’t think straight. ‘Let’s just find our seats, okay?’
I do my best to enjoy the concert, but my encounter with Jake replays in my mind all night.
* * *
The following day, Katy goes back to Port Macquarie. ‘Bye, Clo!’ she says as I see her off. ‘You better have a party for your eighteenth! I’ll come back when I have an invite! Love you,’ she calls out the window of her car.
‘Okay, okay, I will. See you in July.’ I blow her a kiss as she drives off down the road.
Walking back inside, I think about everything that happened yesterday between me and Jake. I’m still confused at why he doesn’t want to stay friends anymore, and whether he ever had any real feelings for me, and I didn’t get any answers.
I need a distraction. Sitting down in the office, I pull out a large pile of assessments my teacher has given me. Now that I have more energy, doing my diploma assignments might help heal my aching heart. ‘Ugh. Stop it,’ I mumble to myself. ‘I don’t need boys in my life.’
I type away madly at the computer, trying to complete my ballet history assignment, but something else is niggling at me, not to do with boys, and I can’t concentrate. When I was having my plasmapheresis exchange treatment the other day, the nurses had to stop halfway through yet again so that the machine could be used for someone in ICU. I know the hospital has two machines, but one is very old and sometimes more than one person needs a machine at once. I’ve been thinking about it a lot because I know that this machine saves lives for people with a number of different diseases, not just TTP. It’s astounding that there are only two machines. When I spoke to the nurses at the hospital, they all said they would love another machine, but they are expensive—anywhere from $50,000 to $100,000.
Sitting in the office, in front of my half-finished ballet history assignment, an idea forms in mind, and before I have time to overthink it, I open my email and begin to write.
* * *
Within days of sending my first email, letters, emails and calls start coming in. The hospital puts me in touch with a charity group called HANKA—the Hunter and New England Kidney Association—and they come on board to help me raise funds for the new plasmapheresis machine. I even get asked to be an ambassador for the Australian Red Cross Blood Service which gives me the opportunity to help bring awareness to the importance of blood and plasma donations, and also promote my fundraising efforts for the machine. The HANKA group tells me it could take years and years to raise so much money, which is a little disheartening, but I’m determined to put in the work to get those funds in a shorter time.
* * *
I’m sitting in the lounge room with papers scattered around, typing away on my computer, when my mum comes in. ‘Chloe, what on earth is happening in here?’
I hurriedly try to clean up some of the mess. ‘So, I kind of sent a few emails and it’s gotten a little bigger than I expected,’ I say.
Mum drops her bags and sighs. ‘What have you done, Chloe?’
‘Oh. You know… I just sent out a few emails to the head of the hospital. Don’t freak out,’ I say at Mum’s concerned look, ‘but I’ve spoken with a number of people and we’re going to try to raise funds to get a new plasmapheresis machine for the hospital. Also, the Australian Red Cross Blood Service wants me to go and do some speeches at a few events to get people to donate more,’ I finish, a little unsure of how she will respond.
She looks at me for a long moment. ‘Are you sure you feel up to doing all this when you’re still having treatments yourself?’
‘Yes, Mum. This is important,’ I say.
She comes over and hugs me. ‘Okay, Chloe. You raise the money, but if you feel unwell at any stage, it stops, okay?’
I’m grinning from ear to ear. I know this is what I am supposed to do.
CHAPTER NINETEEN
Return to the stage
JUNE 2009
Over the following few months, the old Chloe makes an occasional appearance. Productivity and positivity are my motto. I have the motivation to do my diploma assignments. I’m ferociously fundraising and finding contacts to help raise awareness for my plasmapheresis campaign. And there are small improvements to my strength as I continue to rehabilitate myself through dance and Pilates at home. Some days, a strange happiness radiates out of me like a rainbow bursting through a dark cloud. But only some days. And on those days I feel I can accomplish anything. My positive mindset allows me to focus on my goal of getting back to dance and I really, truly believe that remission from lupus and TTP is just around the corner. My goals feel achievable, I just have to keep searching for the right path to take.
Only one concern is niggling at the back of my mind: this powerful and constant urge to find love. Jake really messed up my perception of what love is, and I want to feel what I felt for him with someone who returns the same feelings. He left me with so many unanswered questions. My desire to explore what love and sex are continues to intensify as I become stronger and more aware of what my future might hold with my lupus diagnosis. The only thing stopping me from going out and exploring this desire is the question: Will anyone love a teenage girl with an illness and tubes hanging out of her?
* * *
I’m standing in a crowd of people who are jumping up and down screaming. Coloured lights shine in my eyes, leaving me dizzy as people push past me. Everyone is covered in blood, with bandages on their bodies or gruesome things poking out of their heads.
It’s dark and the makeshift dance floor in the carport at this party is far too small for all these drunk, teenage horror characters. The birthday boy, Lucas, is pulling some pretty strange contemporary dance moves, and I am sure his flailing arms are going to rip down the Happy Eighteenth sign above him. Fake blood and gore make it hard to see his usual dark hair and Zac-Efron-like features.
I’m dressed in a short, shiny faux-leather jumpsuit that zips up at the front. My red spray-painted angel wings turn me in a half circle as a group of disorderly boys bump into me. Regaining my balance, I scan the dance floor for my friends from the dance college, but I’m surrounded by Lucas’ high-school mates. Frustration builds as I am once again pushed forward into the crowd. Then my eyes land on someone I’m really not in the mood to see. Jake and his girlfriend, hand in hand, bopping around to the music. That’s it. I’m done for the night.
B
reaking free from the dance floor, I make my way up to the house where a few partygoers are chilling on the lounge. I take a seat at the round wooden dining table, happy to be away from the noise. Grabbing my phone, I text Zac to come and pick me up. I’ve only been here two hours and I’m already ridiculously tired. I’m the only sober one here and my feet need a break from these heels.
‘Hey, you look great!’ I hear someone say and then a random guy drops into the chair opposite me.
‘Oh, thanks. I’m a death angel,’ I say, not remotely interested in making small talk.
‘Oh cool. So, like, how do you know all these people? Most of the chicks here are dancers, right? It’s wild.’ He inches further towards me, his eyes narrowing in what I think is an attempt at a smoulder. He furrows his brow and squints as he leans forward on his legs, clasping his hands. It just looks like he needs a pair of glasses.
‘Um, yeah, I know most of the people here from my dance college,’ I say, surreptitiously checking my phone to see if Zac is on his way. I am so done with this party.
‘Wow. So you’re a dancer then.’ He wiggles his eyebrows up and down at me in a way that’s very off-putting. ‘You must be pretty flexible then, hey?’
Okay, that’s it. ‘Actually, yeah I am, but I haven’t been able to dance for a while because I’ve been in hospital. I have an autoimmune disease called lupus,’ I say.
His face drops and he looks like he’s not quite sure what to do next. ‘Oh. Shit. That’s full on. Ah. Cool. I’m gonna go get another drink. You want one?’
‘I can’t drink,’ I say, and just like that he’s gone.
Ugh. I’m tired. Or maybe I’m just a little out of sorts after seeing Jake here with his girlfriend. I put him out of my mind months ago, but when I look at them together, I know they are in love. It makes me wonder if my obsession with finding love clouded my judgement of him. Maybe I was in love with the idea of him being mine and not really in love at all. Who knows? I’m still searching for the answer.
En Pointe Page 15
