En Pointe

by Chloe Bayliss

  * * *

  At the end of the rehearsal when everyone is gone, I lie back on the floor. The room is quiet and smells like sweat. I think about how far I have already come in just a few months back at dancing. I’m still having plasmapheresis as usual, and even though my blood results are still not that good, I do feel better. Today, anyway. Some days I have to stop because fluid builds up in my legs or I just feel terrible, but today I had so much energy; my muscles are finally coming back. My life will only go upwards from here. I am sure of it.

  CHAPTER TWENTY-THREE

  Diploma

  DECEMBER 2009

  Today is the day—the first of five days’ worth of practical assessments. My hair is pulled back into a tight bun. I have chosen a blue leotard that sits high enough to cover my permacath. I have a fresh pair of stockings on and my pointe shoes have been cleaned up so I look presentable.

  In my mind I can see the moment I first stepped into this dance school at fourteen years of age. It’s been a rough and unexpected ride, and this is my last chance to get what I came for: my Diploma of Dance and Performance.

  I line up behind my fellow dancers, all quiet and focused. I shake out my legs before touching my hands to the floor to stretch out my hamstrings one last time.

  A bell rings, and my heart rate skyrockets. This is it.

  Rising up onto my toes, I run into the studio. At one end of the room is a huge long table where teachers and guest judges sit, ready to assess our classical class. I curtsy and then move to my place at the barre.

  Focus.

  I have worked so hard to build myself up from scratch and now I just want to dance and enjoy the class. The girl who couldn’t even do a grand plié at the start of the year can now finish a whole ballet class.

  The piano starts. I smile. I am free to move. I am here to dance.

  * * *

  An hour later, I have pushed myself to the limit. I am dancing like this is my last class ever. I can turn and pirouette multiple times again. My adage and leg extensions are high and strong.

  I walk to the side of the room to catch my breath while the alternate group dances. I watch Demi dance like she’s never danced before. She has a fierceness to her, a confidence bigger than I have ever seen. The panel can’t stop watching her as she absolutely nails every step. She springs high off the ground with such ease that you’d think she was a professional. I have an urge to whoop and cheer as she quickly beats her legs, travelling across the room. She’s dynamite.

  Closing my eyes, I check in with myself. Allegro—small and big jumps—has been the absolute hardest thing for me to do, and it’s coming up next. I tell myself I can power on through. ‘You got this, Chloe,’ I whisper to myself. I just need to hold out for the next half an hour and I will be done.

  ‘Okay, may I see the first group for Petit Allegro One,’ Miss Carmen announces. She sits up straight, her lips pursed and her eyebrows slightly raised. She’s quite serious as she scrutinises our every move, scribbling down notes the whole time.

  I take a breath. I can do this.

  I jump and jump, beating my legs forward and backward every which way. Entrechat six, entrechat six, entrechat six, my mind keeps saying. One, two, three, one, two, three, one, two three. I jump high into the air, beating my legs back to front three times before landing on the ground. I rapidly jump up and down, trying to get those three beats over and over again. My heart pumps hard and my legs start to feel like jelly, but I keep pushing through until the final grand allegro.

  I slow down my breathing before running fast down the room. My legs split every which way as I jump high and jeté and jeté and jeté. My heart soars; I can now do the jumps that I had so much trouble with when I performed onstage in July. Running to the corner, I smile and make eye contact with the panel. Then I chassé into the ground before completing a series of turning jumps. I chassé coupé jeté in a large manège around the room before leaping off to the side of the studio to finish.

  Hufffing and puffing, I smile to myself. I’ve done it. I stand up straight and run back to the centre of the room. In a classical pose, I smile, tears welling in my eyes as they lock onto Miss Carmen’s. Her mouth turns up at the corners and she gives me a little nod. There’s a sparkle in her eye. We’ve been through so much together, and her words at the hospital come back to me: Stay strong, my girl. We have a plan and I will be here when you are ready.

  As I curtsy, my head bows and more tears fill my eyes. The panel clap as all the dancers take another bow, and then I run from the room.

  I collapse into a seat outside the studio. A weight of pain lifts off my shoulders. Not physical pain—emotional pain. Everything I have gone through to get to this point can finally be released. Putting my head between my legs, I try to catch my breath and hide my tears. But they’re happy tears. I’m so glad I didn’t listen to all those people who told me that I wouldn’t be able to dance again. I’m so glad I kept fighting.

  * * *

  It’s the last day of my diploma year, and I’m about to perform my graduating contemporary piece. Everybody who helped me—and is still helping me—recover is in the audience tonight. Mum and Dad, Zac, Phoebe, Riley, my two sets of grandparents. Even John, and a number of my other dialysis nurses.

  ‘You ready, babes?’ Demi slings her arm around my shoulder. She has already performed this trio before with another dancer as my replacement when I was in ICU, but she knows how much this means to me.

  ‘Yeah, I think so. Let’s just have fun, yeah?’ I say.

  ‘We will. Chookas, girl. Let’s do this!’ She walks to the other side of the stage to prepare.

  This is the first and last time I will ever perform this routine before all my dance friends spilt up and go off to pursue their careers all over the world. The routine is about greed, lust and adultery, and I take myself back to the moment where all I could think about was getting love from somebody who did not love me. Images flash through my mind: my lust for someone and extreme desire to have them close; Jake and the man who gave me my first intimate experience; the constant searching and need to experience a more intimate kind of affection. My body had craved intimacy, but my heart had ached for love and a connection.

  I am transformed into my character.

  The stage is black, unlit. Music starts and the lights rise, a slow, faint glow building around myself and Lucas. Then we begin to move. He holds my body every which way as I drop to the floor and am pulled back up into a standing split. Our bodies move together, making us look as though we are one person. Until Demi joins us. I am thrown from one side of the room to the other, the three of us creating an atmosphere of love, passion, anger. We reach the heights of ecstasy before Demi and I disperse from stage, leaving Lucas standing alone.

  When I return to the stage, I bow for what could be the last time ever. After tonight, I transition into being a dance teacher.

  * * *

  A few days later, the hype of the production and my final assessments has diminished. Sitting on my bed, in the house I share with Zac, I stare at my diploma certificate, now rolled up in a tube next to me, and the pile of my theory assessments sprawled across my bed. I look around my room. The walls were painted pink by the previous owners, and I hate it. My queen-size bed looks out to a tiny veranda. The silence in the house brings a chill to my spine. I am all alone and I have nothing to wake up to tomorrow. No classes to attend, no upcoming performances, no diploma to chase after anymore.

  I sit very still.

  All of the graduating dancers have now gone off to their pre-professional schools and companies, and I am stuck here in Newcastle. I still have tubes in my chest and my lupus will be with me forever.

  I have been so busy forging ahead to get my diploma that I didn’t plan for what I would do when I actually got it.

  Anxiety starts to wrap its clammy hands around my throat. My heart sinks as I look down at the permacath in my chest, the tubes that are tying me down, keeping me here.

&nb
sp; Up until now, I’ve tried not to think about it, but the time has come when I need to assess my options. My disease won’t allow me to be a dancer. Leaving Newcastle is not an option right now. So if I want to keep working in the dance industry, my only real option is to teach. And I love teaching. But I also love dancing.

  I stand up and jump up and down to clear my mind. I need a goal. I pace up and down at my bedside, talking to myself. ‘What do I do, what do I do, what do I do?’ I jump up and down again and shake out my body. ‘Teaching,’ I say, as if saying the word out loud will make the idea feel more real. Maybe I could be a teacher and then get my Pilates certificate? Maybe I could go on to be a ballet examiner?

  I carry on talking to myself. Somehow it helps me work through things to hear them out loud. ‘Great. Yes. I’ll be a really amazing teacher who everybody will want to employ. Or I could be a choreographer.’ I think for a moment. ‘Yes, I can do that. That will be my goal.’ If I can’t dance because I need to be at the hospital here twice a week, I guess I will be a dance teacher. I will give back to the students everything I have learnt over the years and everything that I love about dancing. I can do that.

  I walk over to my wardrobe and find my joggers. They are in pristine condition. The only shoes I have been preoccupied with this last year have been my pointe shoes. Putting on my joggers, I tell myself that I will not be sad. I will keep moving forward.

  Walking outside, I take a moment to smell the fresh air. Then I start to run.

  I run and run and run. I run until my heart burns. I run until sweat pours down my face. I run until any desire to continue to dance has left me. At the moment, I don’t have an option to dance, but giving up is not an option either. I keep running until my legs feel like they are going to snap off. I hate running. I hate it with a passion. But once upon a time, I could hardly walk up the stairs, so now I just need to let go of everything and run.

  CHAPTER TWENTY-FOUR

  Another chance

  FEBRUARY 2010

  By February 2010, I have a new zest for life. My relationship with my brother Zac and his girlfriend Riley grows significantly stronger and we often attend music festivals and shows together. My hospital treatments have decreased dramatically and I’m out and about, enjoying life. Before I got sick, I was so rigid with my lifestyle, not wanting to participate in many social activities, putting dance above everything else. But my illness has made me re-evaluate my life and I’ve found a balance between going out and having fun while still putting aside time to keep my desire and dedication for dance alive.

  Tired and still somewhat hyped up from a music festival one day, the last thing on my mind is dancing. But it just so happens that the next day there is an audition for a pre-professional dance company based in Connecticut, USA. They are in town and looking for dancers. Very, very last minute, I decide to go in, just for the experience. In my mind, I have come to terms with the fact that my health issues will prevent me travelling and dancing in a company, so I’m happy to focus on a career teaching and choreographing.

  I go to the audition anyway. Knowing I probably won’t be allowed to go even if I get in, I completely let go of all my inhibitions and just dance. My permacath is tucked perfectly behind a high-cut leotard, out of sight, and I truly feel as if I’m back to the peak condition I was in before I got sick—only this time, the meaning behind my dancing comes from a place of great love and passion. More so than ever before.

  During the audition, I feel a strong connection to the choreography, like it was made for me. It has a subtle balance between ballet and contemporary with an emphasis on character building, telling a story through movement in a unique, artistic way.

  Afterwards, I put any thoughts of ever performing on stage again out of my mind and return to my slower-paced lifestyle.

  * * *

  Goal setting has always been my priority, and in March 2010 I receive some astonishing news. It’s only been one year since I first opened my computer and started to write emails to the hospital regarding my thoughts about raising funds for a new plasmapheresis machine. With the help of the great team at HANKA, we’ve been able to get in touch with the New South Wales Shadow Minister for Health. She heard about my story and is going to make a special trip all the way to our little room at the HANKA house in Newcastle to present us with all the funds we need to buy a new machine for the John Hunter Hospital, as well as funding for education programs so people can learn about the importance of plasmapheresis exchange and plasma donation.

  I can’t believe it. I get to meet Jillian Skinner and see the new machine—a vital piece of life-saving equipment, without which I wouldn’t be alive today.

  Things in my life are really starting to move forward, and I can’t wait to get home and tell my favourite person about my exciting news. My boyfriend, Eli.

  Yep. I’ve fallen in love. Love! I’ve never had a boyfriend before. A real boyfriend.

  Eli and Chloe. I think I know what it means to be in love now. He didn’t flinch when I told him about my disease. In fact, he didn’t seem to mind at all. He came into my life when I was completely happy and content with the woman I was becoming. I didn’t need a man to find love after all, I just needed to love myself first, and in turn, I attracted his love as well. Our love is fun and pure. We adore each other.

  And so, I’ve settled into a routine with the occasional dance class, teaching at the studio and hanging out with Eli and my friends. It’s difficult to put my days on the stage behind me, but I try my hardest to love the life I’ve been given, and that life is a thousand times better than the one I had in hospital.

  Then one day, I receive an email that changes everything. The email informs me that I have been successful in my audition for the pre-professional dance company in Connecticut, USA, and that I’ve been awarded a part scholarship based on my audition.

  I stare at the screen, mouth hanging open for about five minutes, unsure of what to do. I got in!

  Before I know it, I’m sitting face to face with Dr Shaan, pleading with him to let me go. I have to take this opportunity. I’ve stopped all hospital treatments for the last four weeks. My kidneys are holding out, and after eighteen long and horrific months the TTP/HUS blood disease has finally gone. My lupus does, and always will, show up positive on my tests, but I’m well and truly on my way to being in remission.

  After a lengthy discussion, Dr Shaan gives me permission to go. He connects me with a doctor in America who will continue monitoring me closely and report back to him every three weeks.

  Convincing my parents to let me go is another challenge. They are absolutely terrified at the thought of me leaving Australia so soon after finishing my hospital treatments. The only thing that gives them some sort of peace of mind is that I won’t be alone. Eli doesn’t want to leave my side and decides he wants to travel around America and visit me on my days off from dancing.

  This is my one chance to do what I was supposed to do all that time ago at the Washington Ballet School. I’d given up on my dream of being able to perform again, but the universe seems to be handing me another chance. America is calling me once more.

  * * *

  Water gushes out past the breakwall, clashing and morphing with the ocean. The breeze glides across the water, picking up salt that goes straight into my nostrils. I can taste the salty ocean breeze on my tongue. The clouds have covered the sky, giving everything around me a grey tinge. Somehow this makes the atmosphere calm and the water look even more mysterious and beautiful. The beach is empty. No one wants to swim today. Perhaps the water is too cold, but I don’t care. I haven’t been able to dive into any water since August 2008.

  Looking down, I see tiny scars scattered all the way from my chest to the right side of my breast. My tubes, permacath, port, catheter, vascath, monster, and every other name I have given for the things that have poked out of me over the years, are gone. They are completely gone. I don’t need hospital treatments anymore. I am free of the machines that w
ere tying me down. It’s been a long, long road, but I am finally here, standing on the very beach I would picture in hospital. Tuncurry, New South Wales. My favourite place. I have dreamt about this moment for so long. I have to wash away my past. Today is a new day. A new start. A new life.

  My little sister stands beside me.

  ‘You ready?’ I grin and hold out my hand.

  She looks up at me with a cheeky smile and takes hold of my hand. Then we run and run and run until we both dive into the water.

  I stay under the sea. Keeping my legs together, I move my body like a mermaid. I swim under the water, holding my breath and opening my eyes until, desperate for air, I skyrocket out of the water. I take a breath like it’s my last. The water rushes over my face and down my body, cleansing everything from my past, washing away all my worries. It’s joyous.

  ‘Clo,’ my sister calls. I turn to see her in front of me, her hand hovering over the water at the ready. I cover my eyes just in time as she skims the water, splashing me right in the face. ‘Ohhh, you’d better watch out,’ I yell and go after her.

  We splash around and laugh until the water gets too cold and dark. Mum and Dad are standing up on the concrete, Dad’s arms around Mum. They’re smiling. I think this is a release for them too. We are all having a new start. Right from this moment.

  Family

  While researching for this book, I did a few interviews with my family to get their perspectives on this time in my life. I was going through hell, but even then, I couldn’t imagine the pain I was causing my parents. I think it’s important to share how illness can have a ripple effect and disrupt the people around you. My whole family had to pull together and change their own lives to accommodate me. They did everything they could to make my dancing dreams a reality. I mean, they moved the entire family to Newcastle to help make my artistic goals a reality. They gave me the world and stood by me every second of the way. And for that I will be forever grateful. So I wanted to share my parents’ thoughts with you.