En Pointe

by Chloe Bayliss

  I jump into my silver Toyota Corolla, red P-plates on, and wave goodbye to my family to begin my life as an adult. I will not let this disease stop me from living a full life.

  CHAPTER TWENTY-ONE

  The gift of blood

  AUGUST 2009

  I place my feet in fifth position—legs crossed, turned out and locked into one another—and put one hand lightly on the barre. Miss Carmen walks past me and whispers, ‘It’s lovely to have you back, Chloe. I’ve missed having you in my class.’ She continues past me to adjust another student’s posture.

  Joy and fear compete with one another. I am back inside the ballet studio, one of a number of girls lined up at the barre in our blue leotards, ready to train. This is everything I visualised in hospital. The sound of the piano playing runs through my veins as I prepare to dance. All I can think about is the doctors who told me to forget about dance, and the social worker who said there was more to life than dancing. And yet here I am, in the studio, where I belong.

  As I develop my leg, it extends out on a 90-degree angle. My leg shakes and I try desperately to keep up with the other dancers whose legs are almost at 180 degrees. I am so far behind the other students. The leg that would once unfold right next to my ear, is now shaking so badly that I need to put it down to rest it. When I try it again, Miss Carmen comes to my side and gently holds my leg while helping me to turn it out more and lift it higher. ‘Yes. Good girl. You will get there. Just keep working at it.’ Our relationship has changed so much from what it once was. She used to drive and inspire, and also scare me a little, with her corrections, and she still does that, but now she’s also kind and loving. I know she will be patient with me and help me to get back to the way I used to dance.

  I lift my arm above my head, then bend back, but my permacath pulls and I can’t go any further. This is just another obstacle that I have to overcome. I’ve tried to find a leotard to hide my permacath so it doesn’t frighten anyone, but part of it pops out from underneath my leotard when I bend back. It’s awful.

  At the completion of the barre, I walk to the front of the room, sit down and watch everyone continue with class. I have to slowly build myself up until I have the energy and strength to do a full class. I know it’s going to take time for me to dance like I used to, especially since I still need to leave to go and have treatment at the hospital two to three times a week, or take extra days off when I have an allergic reaction to the plasma. But I know I will get there eventually. It will just take practice.

  * * *

  When I’m not dancing, I continue doing work from home for the Australian Red Cross Blood Service and HANKA, desperately trying to find ways to raise the funds for a plasma machine and raise awareness around the importance of blood and plasma donation.

  Tonight, I stand on a different kind of stage in a black knee-length dress, my hair pulled up high into a bun, a spotlight beaming down on me. I look out to an audience of hundreds of people dressed in formal attire, all sitting at big round tables.

  I pull the microphone down a little to reach my mouth, shaking at the thought that all these people have in some way or another helped save my life. The people in this room are being awarded with medals for the numerous blood and plasma donations they have made.

  I unfold the piece of white paper before me and scan my notes before I begin to talk. ‘I have relied on your donations of blood products for over a year now to keep me alive. I have had three kidney biopsies, needing platelet and blood transfusions before or after each of them to stop the extreme bleeding and low blood levels I had.’ The audience is intently listening. I’ve been onstage so many times, but this is different. I can see everyone’s faces in the crowd and they are hanging on to every word I say. Holding my head higher, I scan the room, trying to make eye contact with people as I gain more confidence. ‘My blood has been sent all over the world for testing because the blood part of my disease is so rare. I was told that ten years ago, 85 per cent of people with TTP/HUS did not survive without plasmapheresis. Now, because of your donations, 90 per cent of people with this blood disease can survive if they catch it early enough. I have needed two litres of plasma for each treatment session for over a year now. Most weeks I would be using a minimum of twelve bags of plasma. That is a hell of a lot of donations and I am only one person out of many, many others who need your help. I am so thankful to all of you here tonight for saving my life with the gift of your blood and plasma,’ I say. The room is silent as I continue talking about my project and how I am trying to raise funds for the plasmapheresis machine as well as funding for education programs to help raise awareness about plasma donations. My body continues to shake but my voice is steady. ‘Now that I have been diagnosed with lupus, I know my future is uncertain. I don’t know how much longer I will need donations for, or if I will continue needing them for the rest of my life. So, a huge congratulations to all the medal winners here today and every single one of you who has been donating. You are keeping me alive. You truly are the real heroes of the world.’ I end my speech and the crowd claps as I make my way off the stage.

  So many people come up to shake my hand. An elderly man reaches out to me and holds tightly to my hand. ‘Darling girl. That was a lovely speech. I feel so honoured to meet you. I have been donating blood products for over twenty years now and I have never met anyone who has received donations.’ He puts his other hand on mine and squeezes tighter, his eyes glued to mine. I can tell this means a lot to him. ‘It’s just wonderful. I hope you can continue dancing,’ he says.

  I don’t have a second to gather my thoughts before another person is in front of me. In fact, there is a group of people waiting to talk to me. They each tell me stories of how they began donating blood. They talk about being in car accidents, losing their daughters through blood loss during labour, and how their babies needed blood when they first came into the world. Some stories are happy but most are sad, and I am overwhelmed by the generosity and kindness of these people who are strangers to me. They get nothing in return and yet they are helping save so many lives, including my own.

  This night has made me even more determined to find the funding for this plasma project. I have two more big fundraiser and awareness days coming up where I need to talk, and possibly even show them some dancing. So I’m going to go home, rest and get back to ballet next week so I can be strong enough and fit enough to continue my quest to get this new machine happening.

  CHAPTER TWENTY-TWO

  A new world

  OCTOBER 2009

  At eighteen, I don’t care so much for the party lifestyle, but I’m on a mission to find someone. I still don’t know if and when my hospital stuff will end, but all I can think about is whether anyone will ever desire me the way I am: pale; bony; my face puffy and still like the moon. With a little make-up and the right outfit to cover up my tubes and markings, I don’t think I look so bad. And I don’t want to find someone purely out of lust, I want something real. I need to know if anyone will truly think I am beautiful, or if I will be seen as the sick girl for the rest of my life.

  I went on a date with a man about six years older than I am. We were introduced through a friend and I thought he might be nice to get to know, and perhaps mature enough to understand my situation. I’d never been on a date before, and before I could stop it, everything that has happened to me came spilling out of my mouth. I did that word-vomit thing where I rattled off everything about being sick and having an autoimmune disease. To be fair, there was a big newspaper article coming out the next day about my illness and my plasmapheresis machine fundraisers, and I didn’t want him to read it before I’d told him. But as soon as I finished telling him, his demeanour changed: he shut down and became very rude, only giving me one word answers. Before I knew it, the date was over. He couldn’t get away from me quickly enough. I don’t even remember him asking me any questions.

  I don’t want to have to hide my lupus from people, but I’m starting to think I might have to.
I never want to make people feel uncomfortable, but maybe that means nobody will want to be with me.

  I feel incredibly insecure, but I can’t live my whole life without anyone wanting to touch me. So I pick myself up and go out again. Dancing is still my priority, but I’m so curious about the world now. There’s a sense of freedom and fascination when I go to these parties, like I’m learning about the big wide world. And then I take all those experiences and emotions and throw them into my work in the dance studio. Even the teachers comment on the change in my performance.

  Then finally, I find him.

  * * *

  I’m at a party, sitting alone on a couch trying to fix a broken strap on my black vintage shoulder bag. Completely absorbed in my quest to re-thread the straps through the leather, I don’t notice the man who sits down next to me.

  ‘Need help?’ he says.

  My head shoots up and I stare into his pale blue eyes. Wow. He is gorgeous. Well put together, business-like, with short dark hair and a beaming smile. As we introduce ourselves, I notice he has a smooth way of talking and such confidence that I’m a little taken aback.

  He takes my bag from me and, with a few quick twists and turns, manages to tie the strap back in place.

  I’m impressed. But before I can get to know him a little better, some friends drag me away to plan our next party location on this big night out. They reassure me that there are parties at this house almost every week and that I can come back anytime. I press them with questions about the mysterious man, and learn that he actually lives here, sharing the rent with three other university students.

  In a state of excitement and fear, I leave the party with my friends, but there’s only one thing on my mind. Him. I need to see him again.

  * * *

  A week later, he’s still all I’ve been thinking about, and now tonight is the night.

  I walk into the slightly rundown house where the party is taking place. People are sprawled throughout the house, and I scan each one of their faces, looking for him. I need to see him again. I’m wearing a black-and-gold sheer dress, my hair is loosely curled, my lips are ruby red and I need to see his piercing blue eyes again.

  ‘Chloe?’

  My breath catches, and I know it’s him before I even turn around. I have found him. He has just come out of his room. Tall, dark and handsome, just like I remembered.

  ‘Hi.’ My voice is a little too high. ‘How are you doing? I didn’t know you were going to be here.’ I giggle nervously. Of course I knew he was going to be here: he lives here!

  He reaches up to my face and puts a strand of curls behind my ear. ‘You look gorgeous.’

  The moment he says this, everything comes flooding back from my date with the guy who didn’t like my illness. I feel vulnerable, and I wrestle with my brain. If I let him see my body tonight, he will have to see my permacath tubes. I have to tell him. Without warning, I blurt out: ‘So the reason I don’t drink is because I got quite sick last year and they diagnosed me with lupus. So I had to be on dialysis and now I do this other treatment, but I have tubes called a permacath… like… in my chest.’

  He folds his arms, his eyes drilling into me. I feel a little sick. The last time I told this to a man, he did a runner, like I had some contagious disease. My mind races with just one thought: Please don’t let him think I’m weird. He nods his head before saying, ‘Oh wow. Sounds like you have been through a lot. My grandma is on dialysis.’ I raise my eyebrows. Oh great. Now he’s putting me in the same category as his grandma. ‘I told you I’m studying to be a doctor, right?’ he says.

  My jaw almost hits the floor. Oh. My. God. He is going to be a doctor! He might actually understand. My nerves unwind, my body releasing a little, as he walks me over to the couch to continue talking.

  For the first time in my life, I don’t care about not being in love; I just need somebody to help me feel something different. Something I’ve never experienced before. I’ve been so afraid that no one would ever desire me with an illness, terrified I’ll end up in hospital again and never fulfil my curiosity surrounding sex. My mind is made up. And as the night draws to a close, I find myself behind closed doors. Behind his closed door.

  ‘Oh wow. Your room is so cool. And look, you’ve got so many business shirts.’ I talk out of nervousness. I know what I want to happen in here. I just don’t know how to make it happen.

  ‘Yeah, I have them for work,’ he says, staring at me as I walk along inspecting the shirts hanging on the rack next to his bed.

  ‘Oh, this one is—’ I don’t finish my sentence as he grabs hold of my arm and pulls me close. My shoulders move up and down with each breath. He pulls me closer to him, and my body fits perfectly in his arms. Holding the back of my neck, he looks down at me, then, with two hands raised to my face, he kisses me. He holds me firmly, but in a way that makes me feel safe and protected. He starts to lead me to his bed before I stop him abruptly to announce that I’ve never had sex before. In fact, I haven’t done anything before except kiss someone, and I’m still pretty new at that too.

  ‘That’s okay,’ he says, and sits next to me on the bed. ‘You sure you want to do this?’

  I kiss him again. He’s lit a fire inside me, and I can’t stop now. ‘Yes.’ My voice is breathy.

  He picks me up and gently lies me down on the bed. Then, with one hand, he undoes my bra.

  My heart feels as though it’s going to explode out of my chest. For the first time in my life my bare breasts are exposed to a man, but so is my permacath, all the tubes hanging out to the right side of my breast. I gaze up at him, but he doesn’t flinch. He just looks me in the eyes and kisses me and then shows me what it feels like to be touched and wanted.

  I didn’t suddenly turn into a wild hormone-fuelled teenager that night. I just needed to taste it, in case I never got the chance again.

  * * *

  After that night, there’s a shift in my body. Like I have somehow become more alive. I’ve found a confidence and drive to explore everything the world has to offer—to go after what I want, and not wait for the world to give it to me. Nothing will stop me from living my life to the fullest. There’s a new kind of fire in my belly now.

  I put my pointe shoes on and go to the barre to warm up my feet before running to the centre of the room. I’ve been dancing quite solidly for three months now and my ankles and feet are finally strong enough to perform a solo. I’ve been having private lessons to try to catch up with the others girls because I haven’t yet had the stamina to finish a whole solo. It’s taken me a long time, but today I know I’m going to dance right until the end.

  The repertoire solo we have to do for the diploma assessment is from the ballet Manon. It’s a tragic love story. Manon’s virginity is sold off to a rather vulgar but wealthy man who wishes for her to be his mistress. But she falls in love with a poor student, and her only option is to run away with him. Although she is in love, she soon grows tired of living in poverty and is torn between staying with the love of her life and going back to the wealthy man who can provide for her. She learns of the power of her sexuality as men grovel at her feet. Manon is fiery and flirty and yet still quite vulnerable as she yearns to be loved and desired. That combination of being strong, but also being vulnerable and needing love, is exactly what’s happening in my life at the moment. I finally understand how Manon feels.

  The ending of the ballet is tragic, but right now I need to focus on this solo, where she lures the men in with her beautiful looks and flirtatious movements.

  I bend my feet back and forth to soften my pointe shoes so I can get a nice arch in my foot before taking my position. As I prepare to begin my solo, I remember listening to the stories the other girls would tell me about their weekends, the parties they went to, and their busy lives outside of dance, and how I would feel as though nothing was more important to me than being in the studio. But I now understand how life experiences can actually change the way you dance. I now understand what
a connection with another person can do to you, and I think I have experienced a little bit of what love might be.

  * * *

  As my day at dancing continues, I jump from class to class: ballet, contemporary, repertoire, pas de deux, drama; the list goes on. It feels like old times again. We have started to learn our end-of-year production and Miss Carmen is going to let me perform the contemporary trio that I so desperately wanted to do last year.

  ‘Hey babes.’ Demi walks up to me in her blue rehearsal tutu. Her face is red and sweaty, but somehow her make-up hasn’t come off. Repeating a year has landed me in the same class as her, and I’m so thankful for her consistent support and shoulder to lean on during my journey back to the barre. ‘Ready for the trio rehearsal? We’re in studio three,’ she says.

  I walk down the corridor towards studio three with her. ‘I can’t believe we get to do this together!’ I say excitedly.

  ‘It’s going to be amazing,’ she says, then she pulls at my arm. ‘Quick, we’re late.’

  We run to the studio. My hair is out, loose and free and streaming behind me, and I remember how Katy used to pull it out of its perfect bun every morning at school. I take off my pointe shoes, and my bare feet feel so nice on the floor. Perhaps contemporary does come more easily to me than ballet.

  Demi and I take our places either side of a male dancer—Lucas. As we begin to dance, I feel a burn. A passion. An almost animalistic fire that needs to come out of me. This contemporary piece is about love and adultery, and our bodies are pulled from one direction to another as we convey love and lust through these beautiful movements. I am thrown through the air. Lucas catches me and spins us fast until we land face to face, about to kiss, before I am flipped around to the side. He lifts me up and then lowers me down to the ground just by holding my neck as I lean backwards. I feel lust, the betrayal and affection. Something has awakened inside me and I can connect all my feelings from life into my dancing on a much greater scale than I could before I got sick. It’s thrilling and terrifying to make those parallels between my life and my art.