Going Through the Motions

Sam popped a hot chip into her mouth before she spoke. ‘So what’s it like being back at home?’ Before I had enough time to answer she interrupted, ‘You’re fighting a lot with the parentals.’

I gritted my teeth and rolled my eyes at Sam. ‘Yeah, cuz they’re driving me up the fucking wall.’ I took a swig from my Mountain Dew. ‘It’s like they don’t even realise I’m not a kid anymore,’ I sighed. ‘I miss Women’s College. I just can’t believe I’m back at home after only four months.’

I had recently returned home from living on campus while I studied at the University of Queensland.

Sam narrowed her eyes at me as she lowered her can of Fanta. ‘Well technically you are still a kid.’ She shook her head like she’d just remembered something. ‘Oh and have you decided what you’re doing for your eighteenth yet?’

I nodded. ‘I was thinking maybe a fantasy-themed party.’

‘Like come as your greatest fantasy you mean?’ She ate a few more chips while she waited for a response.

I felt cold and hollow, like I was trapped in a dream. ‘Yeah, ‘memba how Mum and Dad had one when they were younger?’ I grinned at the memory of the story they’d told, or tried to anyway but I couldn’t tell if my facial muscles were moving. ‘It sounded like a fun night.’

Sam laughed. ‘Oh yeah, okay.’ She flicked her mousey brown hair behind one shoulder. ‘That means we’ve got more than three months to get our costumes sorted.’ She leant back, lost in thought while she ate the rest of her food.

I sat in my big purple motorised wheelchair shoving handfuls of tasteless chips into my mouth. After I’d eaten a few, I straightened and glanced at my sister while she grabbed her Fanta. ‘Are yours hot?’

Sam smiled and nodded, contentment etched into her features. ‘Are yours?’

‘Yeah…’ I didn’t know how to tell her I couldn’t tell if my chips were hot or not without sounding like a total nut-job, so I preoccupied myself with eating the remainder of my Kentucky Fried Chicken, even though I couldn’t taste the hot chips or the spicy popcorn chicken.

I wondered in my head what the fuck was wrong with me while I polished off the tasteless food – I usually loved KFC.

I’d woken that morning with the odd sensation of not being quite in the moment, it felt like I was having an out-of-body experience. I watched myself brush my teeth, have a shower, and get changed; all the while feeling as though I were floating above my body and not actually in control, just going through the motions without feeling. I was operating on automatic, unable to order my thoughts, or even to detect the temperature of the shower. I’d also had trouble tasting my cereal, I’d thought it might be due to not being entirely awake at the time but now it was more than four hours later and I was still having trouble with my tastebuds.

I looked around at the bleary walls, fixating on one particular picture near our booth. I’d been to this KFC a few times before, so I knew the picture – a framed black and white photograph of four young kids laughing as they ate some KFC. I spent the next few minutes trying to focus on individuals in the photo, in a desperate attempt to bring myself back into the moment. But I couldn’t seem to focus no matter how hard I tried.

I could see the outline of the photograph, and I knew from memory that the pieces of chicken were in colour, although today I couldn’t make out any colours. The walls and everything around me were dull, bland, and void of brightness.

‘Oh god that was good.’ The sound of Sam’s voice made me look at her as she bunched her wrappers together and then drained the remainder of her drink.

I smiled. My face got all tight and tingly, so I stopped. I bunched up my wrappers and handed them to Sam on her way to the bin. My fingers went completely numb. I didn’t know what was happening. I wondered vaguely if I was having a heart attack. I could feel tendrils of panic tighten my chest. ‘Sam, my fingers are numb.’ My frantic eyes met hers when she arrived at the table.

‘It’s probably nothing, Jamie, rub your hands together like this.’ She rubbed her hands together in front of my face.

I copied her and the result was slightly better. My fingers were no longer numb but now my entire hand felt like a deadweight on the end of my arm. I shrugged. ‘Better.’

She rolled her eyes and muttered drama queen under her breath. ‘Let’s go, I’ll hold the door for you.’

I watched her imitate my wonky walk as she made her way over to the door. Only it wasn’t an imitation. The way I used to walk as an eleven-year-old had over time become the way Sam walked.

Sam’s FA wasn’t aggressive like mine was in the same way during the early years of diagnosis. While my walking had very quickly deteriorated and forced me into my first wheelchair at age twelve, Sam suffered more from severe scoliosis (a curvature of the spine). While scoliosis itself is quite a common condition among both the disabled and the able-bodied population, when paired with FA it becomes just another symptom that affects most, but not all, FAers. There’s no specific reason to indicate why some symptoms progress more quickly than others. FA seems to affect every single sufferer differently.

Sam’s scoliosis was very aggressive, so much so that she underwent back surgery at age twelve and had a titanium rod inserted along the full length of her spine. The doctors weren’t sure whether Sam would ever walk again telling us not to be surprised if she needed a wheelchair to get around after the operation. But they had no idea she’s even more stubborn than I am. She’d decided even before she went in for surgery that she would walk again and so she did.

Sam had seen how dependant I’d become on my wheelchair after only occasional use and was determined not to rely on walking-aides for as long as possible. Sam turned sixteen that year and was still walking, like a drunk maybe, but at least she was still walking.

I followed her unsteady path in my motorised chair and just before she reached the door, I sped past and tried to edge it open with my footplates. I’m not sure why I did it. I think I was trying to prove to myself that I could still do things without assistance, but I ended up getting one of my wheels caught on the doorjamb as I tried to push the door open and I had to reverse back and wait for Sam to hold the door for me – like she was going to anyway.

I heard her quiet giggle behind me, ‘That’s what you get for being a smart-arse.’

A few heads turned and, in that instant, I knew all eyes were on me, watching the crip struggle. That happened often; people stared at me every time I was out in public. It was almost as if they couldn’t believe I wasn’t sitting in a darkened room at home, instead of being out and living my life among the ‘normal’ people. I was used to being treated as an object of fascination, but it still pissed me off when it happened. I knew I should feel my cheeks burning but I didn’t even feel a teensy bit embarrassed – just numb. I knew I looked like a fucking idiot, but I really didn’t care – I was used to it after all.

A few people offered assistance, and I assured them I was fine. Most of them looked at me like I was one crazy motherfucker and hey maybe they were right. They all probably thought ‘well at least that disabled girl has her older sister to look after her’.

Everyone always thought Sam was my big sister, even though it was actually the other way around. I was supposed to be someone who looked after Sam and didn’t rely on others to do the looking after. But because she was still walking, she was often the one looking after me, which made me feel like maybe my parents got it wrong and she was my big sister.

I drove past my big little sister while she held the door open. I still felt like I was dreaming but then I caught a faint whiff of car fumes and realised I was actually living in this fucked-up reality.

I manoeuvred the chair up and down curbs automatically, going slow along the path so Sam could hang onto my handles at the back. I stopped abruptly before the lights, still in a daze. I didn’t say anything because I didn’t have to. Sam knew what to do because we’d done this before. She edged around the chair and plonked her gangly teenage body onto my lap.

I crept up to the traffic lights and she pushed the big silver button. We waited a moment or two before the buzzer sounded and the green man began to flash. I pushed as far forward as my joystick would allow and we left our local shopping centre behind.

I still wasn’t able to order my thoughts or concentrate on my surroundings, my sense of smell was fading away and eventually all I could smell was my body. Which smelt like sweet deodorant and something earthy – I couldn’t be sure exactly what it was, but it was fading. That eerie sense of floating above my body returned as we made our way back home. Every now and then Sam shifted her body weight before I could complain about her bony arse digging into my thighs. At that stage I couldn’t feel anything in my legs at all. I told her not to worry about shifting her body weight so much and we spent the remaining drive home in a comfortable silence.

During dinner that night I struggled yet again to taste anything. I knew the lamb was covered with a grainy kind of sauce but I couldn’t even tell if it was nice or not. I could’ve been chewing sandpaper for all the difference it would’ve made. The feeling in my hands when I picked up my cutlery was reduced to a numbing pressure, and my hearing was diminished to the point where everyone sounded like they were constantly speaking in low voices.

A not-entirely-unfounded sense of paranoia grew inside of me while I ate in silence, choking off my air supply. When clean-up was over, I grabbed Mum and asked to talk to her in my bedroom.

She followed me inside and closed the door behind her. ‘Wha—’

‘Mum, I feel like I’m dreaming,’ I blurted out before she even had time to sit on my bed, ‘I just don’t feel real, ya’ know?’

She looked at me blankly. ‘No. I’m pretty sure I don’t.’

I took a deep breath. ‘Everything feels so surreal. I can’t even think properly! I don’t want to be here anymore!’

Her eyes almost popped out of her head and she sat on the edge of the bed. ‘What are you talking about darl? If you need to see someone, you can, you know?’

Great, she thought I’d lost the plot. I vaguely listened to her talking about an appointment with a counsellor she’d heard of. I knew this would happen!

‘Mum! I’m not depressed okay, I don’t need professional help. I just,’ I couldn’t find the right words. ‘It’s hard to explain, okay.’

‘Just take a deep breath.’ She cleared her throat and sat opposite me, waiting.

I breathed deeply – more for her benefit than mine. ‘I just feel off,’ I shrugged, ‘like physically I mean.’

She placed a concerned hand on my forehead.

This small act encouraged me to elaborate further. ‘All five of my senses are slightly off-kilter, I can’t focus on anything, I can’t even taste my food, I certainly don’t feel much and I’m having trouble smelling and hearing anything! What’s wrong with me Mum?’ I didn’t even realise I was crying until the wet tears dropped onto the back of my hand.

She wrapped me in a bear hug and rubbed the back of my neck in a soothing way. ‘C’mon, sweetheart, it’s going to be okay.’

I started sobbing then but after the first minute I stopped and cleared my throat. I needed to get out my worries in a clear voice. ‘Do you think this might be an indicator of a brain tumour?’

She blinked slowly and looked up while she considered it.

I didn’t wait for a response. ‘I also read on a poster at our doctor’s office that numbness in your left side can be a warning sign that you’re about to have a heart attack and my entire body is numb!’

I suffer from a heart condition called Cardiomyopathy (basically one of my ventricles thickens over time, making it harder and harder for blood to get pumped throughout my body). I know eventually my dodgy heart will kill me and oddly enough it doesn’t scare me. My Poppa died when I was barely six years old and even though I was young it made a lasting impression. I realised death and loss are such a big part of everyone’s life, including mine. I know I’ll die one day, probably sooner than most but even if I didn’t have FA I’d still die. That’s just the circle of life. It is what it is.

No parent liked to contemplate their child’s mortality though and Mum was no exception. As soon as the words left my mouth I could see she was starting to panic. She turned a shade lighter than pale and placed trembling fingers over her mouth like she hoped I wasn’t about to have a heart attack right then in my room. She got to her feet and wrenched open my door. ‘Miiiiiiiiiiiiiiike! We need the blood pressure monitor in here now!’

A few years ago, my Dad bought a monitor and an adjoining sleeve to measure our blood pressure and heart rate. He’d bought it when Sam and I started trialling a new drug for our condition and he needed to closely monitor our blood pressure at the beginning so he could get the dosage right without accidentally killing us. But the BPM had also come in handy on other occasions, sometimes we’d use it to check our heart rate during alarming dizzy spells or if we just felt crook.

Dad rushed into my room and wrapped the sleeve around my bicep. While it squeezed the shit out of my arm I stared blankly at the wall and hoped I wasn’t going to cark it before my eighteenth.

After a moment I looked down at the monitor. The green numbers flashed once on the monitor and the machine beeped, announcing that the measurements had been finalised. I glanced at Dad for a translation of the double digit conundrum. He undid the sleeve and started pulling it off my arm. ‘Everything is totally normal, bloss.’

Fucking hell! The shitty monitor didn’t know what the fuck it was talking about. Something was seriously wrong with me, I just knew it.

Dad patted my arm, plainly trying to be comforting, although to me it seemed condescending. ‘Your heart rate is a tad lower than usual but nothing to be too concerned about.’

I tried to hold it in behind numb lips but I couldn’t. ‘Awesome! So this horrible feeling I’ve got is nothing!?’ I shook my head, hoping to clear it. ‘Now what?’ I pinched the bridge of my nose to alleviate building pressure. ‘Do I just live like this?’ My vision blurred with unshed tears. ‘Cause I won’t!’ I was hiccupping by the time I finished speaking.

Mum and Dad sat side-by-side on my bed, the image of concerned parents. Mum touched my knee gently. ‘Explain it to us again, JL.’

I tried to explain what I’d been feeling but they still looked puzzled when I was done. Dad told me he could arrange for me to see our GP on Monday if I wasn’t feeling better by then. I felt exhausted and sick of talking about the way I felt, I knew how pointless it was when nothing could be done about it. ‘Don’t worry about it Dad; I’m probably overreacting, it’ll just be an overnight thing.’

He cleared his throat. ‘When did you start feeling like this?’

‘Only this morning.’ I laughed despite the tears welling in my eyes. ‘And already I can’t stand it.’

He looked down at his lap. ‘I just want to make sure this has nothing to do with leaving UQ.’

I sucked in air and willed myself to get angry, but I just couldn’t. ‘This has nothing to do with that.’

Mum jumped in then. ‘Look we know you aren’t happy to have given up your newfound independence at Women’s College but you weren’t well and you weren’t getting the proper care you need, can’t—’

I could actually feel heat coursing through me when she said this, the first thing I’d felt all day (aside from numbness). ‘Stop! I know I needed to leave Women’s for my health, okay? But you make me sound like someone who’s severely disabled and needs twenty-four hour care which I don’t and never will!’

Mum held up her hands. ‘I didn’t mean that.’

The numbness in my body had returned. ‘Whatever. I don’t want to talk about it anymore. I’m really tired now so I’m just going to get ready for bed.’

She got to her feet with Dad. ‘Okay, darl.’ Before either Mum or Dad reached my bedroom door, Mum turned to me. ‘JL, maybe you should try looking online for your symptoms?’

I waved her away in response.

When the door was closed again, I looked over at my computer. Fuck it. I wheeled over to my computer and pulled up Google. First, I typed in ‘loss of senses’ and the results listed mainly featured pages advertising ‘sensorial massage’, whatever that was. I typed in ‘feeling like I’m floating above my body’, and towards the bottom of the page saw a link that may hold potential answers.

I’d clicked on it and straightaway a blog by a quadriplegic replaced my previous screen. I’d read one or two sentences on the page before losing focus and having the words swim before my eyes. I’d read enough. Apparently after the author’s car-accident he experienced the feeling of floating above his own body.

I remember understanding why he felt that way after going through such a traumatic accident but I didn’t see how I could possibly compare my condition to his, not when he lost the ability to walk so suddenly and mine was more gradual.

That man had had his world turned upside down in such a short space of time, whereas mine was slowly turning for about six years. By the time I’d started using a chair full-time I’d figured out some shit that would’ve taken him a few years to work out, the stuff they didn’t tell you when you got your first wheelchair. Things like having gotten used to the various reactions people had to the wheelchair, and how to read people, so you knew how to make your disability less confronting for some people by remaining silent and how to use humour to diffuse other awkward situations. Things like reading body language; so you knew who’d smile back and who’d grimace as you passed them by, and what it felt like to have every second person stare at you in public like you’re an animal they’d never seen before. Things like how to ignore unintentionally degrading comments and rude stares. Things like how important true friends are and realising some social situations are just not wheelchair accessible, no matter how hard your friends try to make things work. Things like learning that a lot of people believe they can cure your damaged body if you’re willing to spend the right amount of money (which is always non-refundable when it doesn’t work). Things like understanding you’re a minority, which means you have to deal with the accompanying prejudice and discrimination.

No, I hadn’t suffered through a majorly traumatic accident. Instead, I had simply drawn the short straw in life. Even once I’d come to this conclusion, a tiny voice in my head told me being diagnosed with FA was traumatic in a different way.

My head was fogging up quickly. I closed down my computer in a daze and got ready for bed still feeling like I was floating above my body. I stayed up there and watched in numb bewilderment as I went through the motions.

Once I was in bed, sleep came quickly or at least I thought it did, it didn’t feel any different and I don’t think I even dreamed.