The vascath tubes in my neck have been replaced with a more permanent port in my chest called a permacath. Unfortunately, this means I’ll need treatment for a lot longer than I anticipated. The operation to insert my permacath was horrific, and I needed morphine and pain relief for hours after the procedure to stop my screams from haunting the other kids in my ward.
When I’m not being poked and prodded by the nurses, my thoughts often turn to Jake, who has begun making frequent trips to visit me. I obsess over his relationship status and try to convince myself that Blair will never return home from her overseas dance contract, and that they really aren’t all that serious.
Time alone makes me think all sorts of crazy things. I’ve started regular sessions with a music therapist who plays guitar for me and gives me some meditation tools to calm my mind and visualise myself getting better. Some days he follows me around the hospital to play for me while I have various treatments. His classical music reminds me of being in ballet class and I often close my eyes and drift far away from my hospital worries, my body sinking further into my bed, releasing tension I didn’t even know I was holding.
Mum is by my side every single day while Dad works, and in the few hours she needs to return home to spend time with Phoebe, my nan fills her spot, trying to quell my boredom and feeding me home-cooked meals. Some days, Grandma Bayliss will sit with me for hours, knitting scarfs and chatting away. She has to catch three buses just so she can see me.
But nothing anyone does can stop me from becoming increasingly disheartened. With no proper diagnosis or answers from the doctors, all I can do is solider through the same monotonous routine of dialysis and plasmapheresis almost every day—some days I can’t even do that, as the hospital’s one good plasmapheresis machine is occasionally taken away from me to treat patients in ICU.
Days of smooth sailing are few and far between as the universe repeatedly throws me some pretty tough challenges.
* * *
Connected up to the dialysis machine, I’m writing in my journal when I’m interrupted by a group of doctors coming towards me. There’s an older man, whose white-and-grey beard covers most of his face. His stature is smaller than the doctors surrounding him, but his presence makes the room go quiet. The older man’s entourage of doctors are much younger than his seventy-plus years, and they walk just behind him, listening intently to everything he is saying. I can’t quite hear what he’s saying to them, but they all keep glancing at me as they continue in my direction.
When they reach me, the man puts out a hand and introduces himself. ‘Nice to meet you, Chloe. My name is Dr Shaan, and I’ve been looking over your reports. You’ve been causing everybody such grief,’ he says. His mouth turns upwards and his brown eyes smile at me through his thin black-rimmed glasses. This man carries an aura about him, and even though I’ve barely spoken to him, I get the sense that he knows what he is talking about. He radiates a certain something; a confidence, or a knowing. As I shake his hand, I realise I trust him already, and hope soars briefly in my heart that maybe this man will help get me out of here. ‘I’m going to take a look into your eyes, okay?’ he says and leans forward to shine a light into my eyes. I’m startled to realise I’ve been in this hospital a whole month already and not one doctor has looked into my eyes. ‘I can tell at least something about your blood pressure just by looking at your eyes,’ Dr Shaan explains, then he grabs my hands and assesses my nails; I’m not sure why. He lets go of my hand and straightens up. ‘We have the results from your kidney biopsy and it has confirmed that you have chronic kidney disease. We’re still working on what’s causing your TTP and other problems, but I think it might be autoimmune related. We’ll need to do some more tests,’ he says.
‘Okay,’ I say with a nod, not really sure how to react to this news.
‘Lovely to meet you, Chloe,’ he says softly, then with his entourage in tow, he disappears.
‘He’s a nephrologist—he specialises in kidneys,’ John says as he unclips my permacath from the dialysis machine. ‘One of the best in the country. You’ll be in good hands with him.’ John has been my dialysis and plasmapheresis nurse quite a lot lately. ‘Okay, we’re going to get you up and weigh you now. Don’t pull any dance moves on me, okay?’ He points at me with a grin. I shake my head and smile.
I have to be weighed after dialysis to make sure I’m at my dry weight so they know they’ve removed all the excess fluid from my body. Apart from these times when I’m placed on the scales and then put back into bed, I haven’t walked for a whole month. A whole month! I’ve been in a bed and in this damn hospital for thirty days straight. I haven’t been outside to see the sun. I don’t go to the bathroom because nothing comes out. I even have to be bathed in my bed by the nurses who wash me down using cloths. And now I can’t get my permacath wet. It’s awful. I’m like a baby; I can’t do anything myself anymore. I was an athlete and now I can hardly even stand on my own two feet.
‘Ready?’ John puts his arm around me to help lift me off the bed. He basically holds me up as I shuffle a few steps forward to stand on the scales. We both watch the red digital numbers moving on the display. ‘Hmm, okay,’ John says. I know he doesn’t want to say anything to upset me, but I can see the numbers on the scales too. I’m so shocked. I’m thirty-four kilos. Thirty-four kilos, for goodness’ sake! What’s happened to me? I’m fading away.
‘Wow, I’m like a child, huh?’ I laugh, but I want to cry.
‘Come on, let’s get you back to J2,’ John says as he helps me off the scales.
* * *
‘Hi, Clo-bow!’ Fezzy comes bounding into my room in J2 with another card in her hand. I’m so happy to see her. Today’s card has a huge fairy on it that she has carefully coloured in using pink and purple shimmer pens. The card reads: My best sister. Very special fairy wish. To my beautiful big sister Chloe. I hope you get better soon. Sister. Sister. Sister. Sister. Love, Phoebe. ‘Wow, that’s a lot of sisters! It’s beautiful, thank you,’ I say, and she gives me the world’s biggest hug.
Mum comes into the room behind her. ‘How would you like to get out of this ward and have a little look around the hospital? I found somewhere the other day where I would like to take you,’ she says. I’m confused because she knows I can’t really walk at the moment. She must see the look on my face. ‘It’s okay, I’ve organised a wheelchair for you.’
I pause for a moment before responding. How has my life come to this? I was about to go to Washington and chase after my dream of becoming a dancer and now this. I don’t need a wheelchair. I would feel like a fraud in one because my legs work. They just aren’t working at the moment. But Mum is looking excited at the prospect of being able to take me somewhere, so I say, ‘Oh. Wow. I didn’t think that was even a possibility. I guess it would be nice to see the place.’ Hesitantly, I move my legs to the side of the bed. My white compression socks and long white gown are oh so glamorous. I slide down off the bed and onto my feet. My legs are shaky, and I immediately feel dizzy.
‘Wait, Clo. Let me help you,’ Mum says. She runs out of the room and a second later pushes in an old blue wheelchair. I take a few steps forward and collapse into her arms, and she manages to swivel me on the spot so my bum lands in the chair. Guess I’m not ready to go back to dancing anytime soon.
Phoebe is looking at me, her little face horrified. She runs over to my side, while Mum gets her handbag, and whispers, ‘Can’t you walk anymore?’
It makes me so sad she had to see that. Sadder still that maybe it’s true. ‘Of course I can. I’m just a little tired, that’s all,’ I say as I pinch her rosy cheeks. Then Mum takes hold of the chair and we head off.
Wow. All I have seen this whole time are silent wards and sterile operating theatres. But there are people running around everywhere here. I’m wheeled past a room full of children and teens playing games and watching movies. Everything looks bright and happy in there, and even though some of the little kids have lost their hair and have tubes an
d things all over their little bodies, they’re all still smiling. Mum wheels me past a cafe and I am overcome by the smell of hot chips and baked goods. My stomach rumbles and I have an all-encompassing urge to stuff my face. I’ve recently started on huge doses of a steroid called prednisone, and it makes me want to eat everything in sight, which is odd considering I now only weigh thirty-four kilos. I’ve been getting cravings at all hours for all kinds of things: burgers, McDonald’s sundaes, watermelon. Last night, I woke up in the middle of the night to snack on apples and I now keep a stash of sweets in the drawer next to my bed. I hate my restricted low-sodium diet, but I’m thankful sugar isn’t off limits.
‘Mum, can we please get a toasted cheese sandwich?’ I say. I know the cheese is super salty, but my body is screaming for that cheesy goodness.
My mum’s smile could brighten up the greyest day. ‘Oh, Clo. Yes of course. Let’s all get toasties.’
* * *
Toasties in hand, Mum continues on wheeling me through the hospital. We go down a few levels in the elevator to reach the very bottom floor. We weave our way around lots of corners, then Phoebe says, ‘Close your eyes, Clo-bow.’
I do as she says, feeling my chair being wheeled forward. I hear a door open and then… I take a breath of fresh air for the first time in thirty days—so crisp and clean, like the first crunch of an apple in autumn. My lungs feel as though they’ve never received oxygen before. A light wind blows softly across my face, nature seeping into my pores, trying to revive my unhealthy body.
‘Okay, you can open them now,’ Fezzy says.
I open my eyes to see a magical paradise. In front of me is an overgrown garden, with little pebble pathways leading to fairy statues. Concrete garden seats rest under huge trees with wild roots. This place looks like it’s been here for years, hidden away from the world. It’s shady and little beams of sunlight stream down through the trees and bounce off the glistening plants. We’re all alone here, and after the grey hospital that’s been my only view for the last month, it’s so beautiful I could weep.
‘I call it the fairy garden, Clo. Like the card I gave you,’ Fezzy says. ‘You have to make a wish to the fairies to get better.’ Then she takes off, disappearing down one of the garden paths. I sink down in my chair. In this moment, nothing else matters. I’ve found joy in a dark place.
Mum and I eat our toasties in silence for a while before she says, ‘When we get back, I’ve organised another special treat for you.’
I’m intrigued. ‘What is it?’
‘You’ll have to wait and see,’ she says with a knowing smile.
* * *
When we return to my ward, I’m tired after just a small adventure, and I didn’t even have to exert myself.
But Mum has the next surprise up her sleeve. ‘I thought your sister and I could give you a little pamper session today,’ she says.
‘What do you mean?’ I ask.
‘Well, I’ve asked the nurses if it’s okay for you to have a bath if we tape up all your tubes with plastic. Then we can straighten your hair, make you feel a little fresher. What do you think?’
‘No way, I get to have a bath?’ I say, excessively excited by this prospect, my tiredness already dissipating. ‘You sure my permacath won’t get wet?’ I run my fingers across my neck and chest and shudder at the thought of having to get another one put in.
‘The plastic will keep it dry. We’ll just have to keep the water a little low.’
After having my tubes taped up by the nurse, my mum wheels me into the bathroom and I see a huge bath filled with hot steaming water and fluffy white bubbles that glide ever so gently on the surface. I haven’t had a proper bath or shower for a month, and just the thought of sitting in all that soft, warm foam overwhelms me.
‘Okay, let’s get you ready,’ Mum says.
My sister goes very quiet as she watches from a seat in the corner of the room. Mum helps me up out of the chair and begins to undress me. When she takes off my gown, I catch the look on her face. It freezes as she stares at my body. She thinks I can’t see her, but I can. Without my gown, my skeletal body is revealed. My ribs and chest bones stick out. My thighs are non-existent, no longer tough and muscular. Deep purple and yellow bruises mark my body. I haven’t been allowed to shave my legs in case I cut myself because my body isn’t able to clot properly to stop the bleeding. It’s humiliating. My mum is seeing my teenage body naked. Pubic hair and non-existent boobs. Everything is on show, but I no longer have a choice about what happens to my body. I need her. I really need my mother right now.
Careful not to slip on the tiles, my mum gently grabs hold of me and lowers my fragile body into the warm water. Goosebumps ripple through me as I am submerged. Hot steam rises up past my head, my tortured body melting into the warmth like hot wax. I don’t know how one simple bath could feel like absolute heaven. Part of me wants to cry and another part of me just wants to submerge my head under water and never come up. I want to float away. I want this water to wash everything away.
‘Clo, guess what Sammy did?’ I’m bought back to reality as my sister tells me stories of our dog. I laugh along with her, and realise I need to keep my mind strong for her.
‘Mum, this is wonderful. Thank you… I love you,’ I say.
‘Feels good, huh?’ She grabs a face cloth and starts to wash my arms and drip water down my back.
I close my eyes and feel my aching body let go. I sit in that bath until my hands wrinkle and the water becomes cold. I never want to leave, but my time is up, and Mum and the nurse help me back to my room.
‘I brought you some activewear from home,’ Mum says. ‘I thought it might be nice to be able to wear something other than a hospital gown when you don’t have any treatments or procedures for the day.’ She places some clothes on my bed, and I feel my face light up. My mum knows me so well. I hold tightly to her shoulders while she helps me get dressed into some black tights and a gym shirt. I look down at my legs to see my XS pants are now sagging and loose around my thighs. But I try not to think about it or get upset as I perch on the end of my bed ready for Mum to straighten my hair.
* * *
When it’s time for Mum to go, I feel revived and pretty. Well, as pretty as you can feel in hospital. Mum has made me feel somewhat normal. I’ve told her not to stay overnight anymore; she needs to be home to get some rest and be with the family. I’ve already taken her away from everyone for too long.
‘Rest up, Clo. I’ll see you tomorrow,’ she says and kisses me on the cheek.
‘Love you, Clo-bow,’ Fezzy says as they walk out of the room.
I’m not alone for long when I hear a ‘Hi.’ I know that voice. A grin spreads across my face as I think how glad I am that Mum freshened me up today. ‘You’re here again,’ I say as Jake walks in. I try not to sound too interested.
‘Of course. How’s everything been going?’ he says as he comes to my side, flashing his picture-perfect teeth. For the first time, I notice a sweet little dimple appear on his right cheek.
‘I’m doing really well. I think I could be getting better,’ I say. This probably isn’t true but I want to sound as though I’m on my way out of here. We start to chat about anything and everything, including all the things we will do once I’m better. It’s fun to dream with him, and my heart lurches a little at the idea that his plans involve me. We talk about dance and life and holidays. We gossip about the other students and laugh about all the crazy things they’re getting up too. ‘Oh my god, you should see my legs!’ I say as I stand up, my bravado keeping me upright as I cling to the side of my bed. ‘I’ve lost all my muscle, so now I am extra flexy. Look at my turnout.’ I place my legs in an overly turned-out first position, then start to laugh, but it catches in my throat at the look on his face and I immediately regret everything I just did. Damn it. I don’t know why I do these stupid things when he’s around. His face dropped the moment he saw how skinny and sick I am. He gives a half laugh at my amazing turnout, but
I know he is horrified at my skeletal physique.
I quickly change the subject and get back into bed. He moves his chair closer to me and leans his arms on my bed. His chocolate-brown eyes look up at me and something turns in my stomach. But I don’t feel sick. I feel… as though something is tickling my insides.
A slow smile pulls at the corners of his mouth. ‘I have something for you,’ he says and hands me a folded piece of paper. I open it up to reveal a letter, typed out on an old-school typewriter. It reads: Dear Chloe, please join me for a wonderful evening at the ballet. I have two tickets to see The Red Shoes on Saturday 16.11.08. Please join me. If you don’t feel up to it, just let me know. Yours truly, Jakey xx. He has even attached a synopsis and pictures of the ballet. I am lost for words.
‘If you aren’t well enough, that’s okay,’ Jake says. ‘We can go to another show when you’re better.’
My brain is whirling. Is he asking me on a date or does he just feel sorry for me or something? I’ve never been on a date before. Before I can stop myself, I’m already making plans. I’ll wear my long black crushed-silk and velvet dress with a strappy pair of heels. Who knows, maybe he will wear a suit or something. It’s the ballet after all.
I thank him for such a sweet gesture, and he gets up, waves goodbye and says he will be back soon. Sitting there with a stupid grin on my face, I wave back to him and tuck the letter away in my side drawer next to all the other pieces of my life here in hospital.
CHAPTER TWELVE
Watermelon
OCTOBER 2008
Jake is sitting next to me on my bed. ‘You’re so beautiful, Chloe,’ he says as his hands lightly grasp either side of my face. Golden flecks shine in milk-chocolate eyes that gaze at me intently, slowly shifting between my eyes and my lips. His hand moves to the back of my neck as he leans closer, then his lips press against mine. Keeping one hand behind my neck, his other hand slowly moves up underneath my white gown to touch my bare skin. I feel a rush of heat move down from my stomach to my thighs as he lowers my body down onto the bed. My heart is racing and the room is hot. Stifling. I can’t breathe. I have to sit up. I open my eyes, trying to catch my breath, and look around the room to find Jake. But he’s gone. Nowhere to be seen.
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