En Pointe

by Chloe Bayliss

  When I asked my mother what effects my illness had on her, physically and mentally, it was hard for her to explain. In fact, she had a hard time remembering it at all, and said she’d blocked out that part of her life, so much so that both she and Dad didn’t want to think about it until I asked and said it was important. Finally, she said:

  When something so traumatic like that happens, you have to be tough. Really tough. Your dad was working almost every day and helped the kids, along with your grandmother, and I stayed at the hospital with you. I tried to stay as long as I could and tried to be there before you woke up so you would have someone to see straight away but—

  My mum couldn’t finish her sentence as she crumpled into a ball of tears. When she had gathered herself, she continued.

  I’ve tried to block it out. After all these years, it’s just too awful to think about. Never would I have imagined having to see my daughter like that. They kept telling me they had to work so quickly to save your life, and coming in to see the tubes in your neck was horrifying. But I needed to be tough. For you and the family.

  My heart aching, I watched her memories flood back in, and through her tears, she managed to tell me that her body was:

  … physically unwell. I lost hair, I couldn’t eat right, I wouldn’t sleep. I slept with you in the hospital on a number of occasions, but in the times I was at home I would get late-night emergency calls because you were having a seizure or worse. So sleep wasn’t really on the cards during that time. So physically and emotionally, I was a mess.

  * * *

  After a lot of persuasion, my parents at last let me know more about what was going through their heads during the time I was in hospital. I received two emails: one from Mum and one from Dad. Neither of them could talk to me in person.

  Dad wrote:

  It was like being in a permanent nightmare. I had this numbness and disbelief that my little girl who used to be so fit and healthy could become so ill so quickly. I was so frustrated that I couldn’t fix anything. Dads are supposed to fix anything for their little girls, but not even money could fix this. I sat in cold corridors for hours on end, waiting for news or just to be nearby. This didn’t really help anything though, because I could never take in everything the doctors were saying, or I didn’t want to because I just somehow didn’t want it all to be true. I really tried to be tough, but when you were wheeled away yet again to get another tube put in your neck or chest, I just broke down. I’d never let you see me like that but when you were out of sight I just couldn’t control myself.

  I didn’t sleep. I wasn’t Mum: I wouldn’t know what to do if something went wrong. It was so hard watching you have dialysis and plasma. Devastating. I still feel distraught thinking about those people having to do that permanently.

  I had to tell Phoebe it would be okay when I knew full well it might not be. It was very difficult to talk about it. So I started to come home and go straight to the bedroom so I didn’t have to go over the day again with Nan or Phoebe. I just stared at the TV, not even listening. I was alone most nights when Mum was out late with you. Your pop would always leave a beer and chips on the bedroom shelf ‘just in case I needed one’. I worried about you and also your mother. When she arrived home, most nights we would cry, waiting for another phone call from the hospital or anxious about what we would wake up to the next morning. It was awful. I remember seeing your mum screaming down the phone when you started to have fits again because they let your blood pressure get so high. I couldn’t do anything. She really took hold of the situation and spoke up for your best interests, but I felt like I should’ve said more, because at times I was too quiet.

  * * *

  Mum wrote:

  This was really hard for me to do, Clo. I have suppressed so much from that time because it was an emotional rollercoaster, full of anger, disbelief, frustration and complete sadness, constantly breaking down because no one could give us any certainty that you would be okay. I felt so out of control and you were so vulnerable and I couldn’t do anything. I would sit in the prayer room at the hospital and constantly ask for help.

  Not only was I dealing with you, but I was also trying to navigate keeping you protected from clueless and judgemental people. I would push you around the hospital in the wheelchair and people would come up to me asking if you had an eating disorder because you were so frail. I wanted to scream at them that you might die, but I gave up answering them in the end. You shouldn’t have to hear this, but people would make me feel guilty for not sleeping with you at the hospital every night, and I was torn between looking after the family and being with you. But deep down I knew you were going to be in there for a very long time. I know that Phoebe suffered greatly because I couldn’t be with her. The teachers at school would tell me that she had changed and didn’t talk much anymore. I tried to make sure Dad was there with her as much as possible and your nan did a wonderful job of taking care of her, but by the time I would come home each night I would just shut off from everyone—often even too exhausted to give Phoebe the attention she deserved, and that’s an awful, awful thing for a mother to feel. It broke my heart, but I couldn’t split myself equally between you, her and your brother. It was a huge battle for Zac because he didn’t like hospitals at the best of times, but he stepped up and helped out in other ways, like I knew he would. I was so damn proud of him when he graduated from uni because I knew he didn’t have any family support for the majority of it.

  Nan found it hard to cope with the constant questions, which she had no answers for. It was extremely hard to continually relay all the information and some days I just refused to take the calls. And your dear nan would do it for me.

  I wouldn’t have coped without her. Regardless of the time I got home she would always have a meal for me. I would eat, shower and go to bed. Dad and I would just cuddle and sob ourselves to sleep. I felt so powerless and it was even worse when they said you could come home for home stays because I didn’t think I would be able to look after you. I was completely out of control. I was so worried that I would fail to look after you properly, which left me racked with anxiety that I would fail and you would die. You just looked me straight in the eye and said, ‘Mum, I am coming home. We can do this.’

  Where I am today

  I will forever cherish my time in America. I grew so much as a dancer, artist and person. I was lucky enough to perform soloist roles in many performances and fulfilled my dream of dancing the lead role of Clara in their contemporary version of The Nutcracker. It was a turning point in my artistic career, where I found maturity and a different way of accessing my emotions to bring a performance to life. I continue to use those same tools in any artistic work I do today.

  I never believed I would love anything as much as I loved dancing, but sometimes life can put you exactly where you need to be. After seven months with the company I returned home and moved to Sydney for a dance opportunity, where I decided to expand my performance skills by taking a few acting classes in my spare time. This was mainly to support my dancing, but then a magical thing happened—I fell in love with acting.

  Funnily enough, in 2011, I got a job as a dancer on the TV show Dance Academy. It was the first time I’d ever properly seen how a TV set worked. To be honest, I grew impatient at how long I had to wait around before dancing my part. I was used to dancing eight to ten hours a day, and now the directors wanted me to dance a little bit, then sit down and wait for light changes before they were ready for me again.

  During the waiting around, I became fascinated by what was happening on set and how everything worked. It was a well-oiled machine, and if one person didn’t do their job correctly, everything would fall apart. Lights, cameras, make-up artists, actors, directors, people running around everywhere. And while it seemed chaotic, the moment the cameras were rolling, everyone was still and silent, watching the actors perform.

  When the other dancers who were performing on the show would go off in between their scenes, I would t
uck myself away, out of sight behind the split—the screen where the directors watched the live footage of the filming—and just watch. I don’t think I was even allowed to be there, but I tried to make myself invisible enough that they wouldn’t notice or at least care. The more I watched, the more intrigued I became. I would study the actors speaking. I thought, What’s happening? They aren’t even doing anything! They’re just talking! It wasn’t until later that I found out just how difficult it is to appear as though you’re ‘just talking’.

  Day after day, I watched and learnt, and it ignited a brand new fire in my belly to do what those actors were doing. I studied everything there was to know about acting, which is in fact never-ending—even now, I still have so much to learn. I read every book, went to every class possible and tried to learn accents, watch movies and just absorb myself in the whole industry.

  In my dancing, I had always been cast in roles that required a characterisation of some sort, so acting didn’t seem that far-fetched. Over about eight months, I worked hard to learn everything I could, not really thinking it would go anywhere—I just had a desire to try.

  And as luck would have it, a friend of mine wanted me to help him with his own audition for an indie film. The only catch was, he needed me to act onscreen with him, so I decided to audition too. And I was offered the role! After a few discussions with the director, he asked who my agent was, but as I was so new to the game, I didn’t have one. He passed on my audition material to an agent and I started auditioning for big professional shows. In December 2011, I was incredibly lucky to land a regular role in a new Australian TV show called Reef Doctors and from there, my journey down the acting road began.

  I know it sounds simple, and there was definitely a little luck involved, but it wasn’t easy by any means. Over the past eight years, my dreams have slowly changed. While my professional dancing days are behind me, dancing is still very much a part of my life and I’m constantly aching to get on that stage. Performing theatre to a live audience gives me that same adrenalin rush that dancing used to.

  In between acting jobs, I am lucky enough to be able to teach dance, choreograph and take workshops across Australia. Dancing has never really left me. I don’t think it ever will.

  Acting is a constant learning process, but the hurdles I have faced in my life have helped me tap into a wide range of emotions that perhaps give me a better understanding of certain characters’ pains and pitfalls. It’s a wildly wonderful career to have, but it’s also a hard one. I’ve certainly learnt the hard way—having shows not rate well and big projects not being seen by anyone. I’ve had knock-back after knock-back. Sometimes, I don’t know when my next job will be, or if indeed my next job will ever come at all. So many times I’ve wanted to throw in the towel. Getting close to a role or being constantly second in line for the roles you want can be gut-wrenching.

  The unpredictability of an acting career is the most difficult element, and whether or not you will get a job is completely out of your hands. That’s the hardest part. But when I do get the opportunity to act, it really is mind-blowing, and I don’t take it for granted for one second.

  There’s something in my belly that keeps driving me to continue, to persist. I believe it’s what you do with rejection that makes you a better artist and a better person. If you can turn the down times into something positive, you will be okay. I’ve found that if you keep moving forward creatively, no matter what you’re doing, you will be taking steps in the right direction, whether it be through writing, dancing, acting, visual arts, learning about your craft or whatever it is that fuels you. You will find results.

  I never considered a life as an actor, but here I am, and I can’t wait to see what the future holds. I’ve been lucky enough to work with some very high-profile actors from both Australia and America who’ve had a big influence on how I approach my career in the arts. My journey as a professional actor is a whole other story, but it’s made me realise that you can always create new goals, have new aspirations and seriously go after whatever you want.

  I don’t know where acting will take me or if it will all end tomorrow, but for now, I’m growing and learning and just loving being the artist I’ve always wanted to be.

  Today, as I’m sitting in my little studio apartment about to put an end to this book, it strikes me how far I’ve actually come. I’ve tried to hide my lupus from the people around me for a very long time, out of fear that I would be considered a liability and no one would want to employ me if they knew that I had an autoimmune disease. I know now that this was silly. I live a relatively normal life, I just have to do things a little bit differently now. I’m still always monitoring my health, and making sure I keep fit and healthy. I still have to take ten to fifteen medications a day and see my specialist for numerous tests every six months. Dr Shaan actually retired last year. It was an incredibly hard day. What do you say to the man who saved your life? He told me that it wasn’t him who saved me, it was the big man up top. But my biggest thanks will always go to him. My care is now in the hands of the wonderful Dr Reid, the first doctor who told me I had TTP/HUS way back in August 2008.

  I still need to get lots of rest and try to stick to a healthy diet. I don’t smoke and I drink alcohol very sparingly. The girl who once depended on a machine to keep her alive now has over 70 per cent kidney function.

  While I can do regular things like everybody else, even now I have had moments where everything comes flashing back, moments when I’m labelled as ‘different’. These moments are confusing and sometimes slap me down so fast that I feel as though I’ve been whacked over the head. They are often small, but they make me realise I’m on a slightly different path to everyone else; they take my mind back to those truly frightening hospital days, and they are moments of fear for my future. For instance, I was standing in line at the pharmacy the other day, waiting to get one of my prescriptions filled. A lady about ninety years old was at the counter in front of me. She was tiny and frail and I saw that she had picked up the exact medication I was collecting. A surge of grief swept through me. I don’t usually let things like that get to me, but a lump grew in my throat and I tried my best to swallow my sobs as I handed over my prescription. It was silly really, but it scared me that someone as young as I am needed the same medication as a ninety-year-old.

  Other silly moments like this can pop up when I’m watching a play or a movie portraying patients in hospital or who have terrible illnesses, and I just sob and sob and sob, knowing exactly what that was like. It will hit me out of nowhere and I’ll have flashbacks of doctors shoving tubes down my neck, or the times I had to be pushed around in a wheelchair. To this day, I still check the toilet every time I go to make sure I don’t see a pool of blood. I know I won’t ever see that again, but I need to be sure.

  In more recent times, I tried to book an appointment at a laser hair-removal clinic. I got frustrated and annoyed because they wouldn’t see me until I had a letter from my doctor stating that my medications wouldn’t cause a reaction to the treatment. Most of the time, even if I point out that I’m perfectly okay, reading my medications list still sends people into a flip. These things remind me that I’m a little bit different and getting a simple thing like a laser treatment isn’t so simple for me. In moments like these, I believe it’s best to get it all out, pick yourself up and carry on.

  I also have to be prepared in advance all the time. Something as small as my friends saying ‘stay the night’ could never happen unless I was prepared well ahead of time, because I wouldn’t have my medications with me, and without it my blood pressure would be all over the shop.

  If I’m travelling anywhere, especially overseas, I’ll carry double the amount of medication I need for the trip, just in case something happens and I get stuck there.

  The thing is, I can do everything that everybody else is doing. Most of the time I just need a letter to reassure people I’m 100 per cent okay. I think sometimes we are just afraid of people who are
a little different.

  I don’t know what having lupus means for my future and how far the medical research will go, but with the correct treatment, the majority of people living with lupus lead a relatively normal life. And who knows? Maybe one day they will find a cure and I’ll be medication free. But for now, I’m more curious about the future as opposed to being scared.

  My family has gone back to the happy, loving bunch they were before I was unwell. My past is in the past. When you go through something as life changing as I did, it makes you really reassess what’s important to you and, at the end of the day, the only thing that matters to me are my loved ones.

  So even in what might feel like the worst of times, don’t let anything hold you back. Play, laugh, live and love. Be silly, be wild, be serious, be passionate and be strong. Be the person you want to be.

  I really hope you can take something away from this book to inspire you to keep on keeping on and have a little hope that sometimes miracles really can happen.

  About to go to my first ballet lesson at just three years old.

  A still from a contemporary piece I choreographed while completing my Certificate IV of Dance and Performance in 2007.

  Photo source: Katie O’Brien

  The Staged 08 program for Swan Lake and The Seven Deadly Sins. I was so excited to perform in this play, and was devastated I had to withdraw.

  Straight after my audition at the Washington Ballet in 2008. I was on such a high and I had fallen in love with this place.