Wheelchair Girl

Trigger Warning: This story contains content about suicide. If you or someone you know needs personal help, please call a help service where you are, in Australia that’s Lifeline on 13 11 14.

I have this memory from my childhood of getting caught in a riptide at our local surf beach. The terror I felt when I was caught underwater and couldn’t quite make it to the surface for air is still so vivid. 

No matter how hard I fought, something I couldn’t see just kept pulling me below the water. All my muscles were so tired from the effort of trying to stay afloat, that I felt like I was drowning.

Each time my head emerged above the water I thought I was going to make it, but it was never long until I was sucked under the surface again. This kept happening over and over, until I eventually made it to shore.

I don’t think I’ve ever been so worn out as I crawled my way to safety. Too tired to do anything except collapse on the sand and suck in as much air as I could.

That memory, of getting caught in a riptide and not knowing whether I would get a chance to breathe again seemed to be a metaphor for my youth. I guess all teenagers feel the same way at some point, but for me it lasted a lot longer than just my teen years. 

Finding acceptance for my disability was a real struggle because the society I grew up in was constantly criticising differences. For those who didn’t fit the standard image of what was seen as ‘normal’, we were made to feel like outsiders always looking in.  

It wasn’t until my late twenties that I emerged as a proud woman in a wheelchair. I learnt not to see myself as someone who had something wrong with her, but rather embrace my differently abled body.

When I was a kid, I was moulded by outside influences and constantly felt like I was never good enough. It’s hard explaining to people who’ve never experienced discrimination, how much that can influence someone who’s still developing.

I don’t regret any of the experiences from my childhood, but I do hope that by writing about them it will change the experience for others.     

I was eleven years old when I was diagnosed with a genetic disease called Friedreich Ataxia (FA) and I still hadn’t realised the gravity of my situation. I mean I knew I’d be in a wheelchair someday, but it was ages away and to be honest I didn’t really have time to think about it. Not with the Easter long weekend coming up anyway.

My family and I were going on a short trip with my parents’ friends to Stradbroke Island. They had a son who was about my age, and I enjoyed playing with him. However, he was very loud and irritating, sometimes he didn’t even mean to be rude, but he just was.

‘Look at the way you’re walking, you’re all over the shop!’ The smug tone stung me, catching me off guard.

I whipped around, feeling hurt from the blunt comment. I wasn’t sure how to react to this yet. I chased myself out of my own thoughts and my eyes widened when I saw his youthful and very sandy face staring back at me.

He smirked at me but once my gaze met his, his dark eyes shifted from my face to my rebellious feet. I stumbled along the uneven track feeling self-conscious. I felt as though I was on fire and heat rushed through me in waves. I knew my cheeks were flushed with pink and I could only hope Sandy Face didn’t realise my embarrassment.

I didn’t like being called out on my ‘wonky walk’, especially when I felt I needed more time to be a regular kid. Sandy Face was an energetic and healthy boy. Physically he was tall – taller than me anyway, and skinny. He had a face that always seemed to be laughing and a mass of curly brown hair.

After playing together that morning, he’d chosen the right moment to comment on my unusual walk. Fatigue had started to set in, wearing down my control over movement.

Time seemed to stand still, the walls I’d built up in my mind shielding me from anything FA-related came crashing down.

I stopped where I was and sank to the ground in the middle of the gravel pathway we’d been on. I could feel warm shards of sunlight playing across my exposed back as they filtered through the canopy above.

I stared blankly at the dry bush, the remoteness of the location echoing how I felt.  The harsh understanding of how difficult FA was going to make my life, hit me.

I wondered if everyone could tell that something was wrong with the way I walked. I wasn’t ready for strangers to know about FA yet – it still didn’t feel real. Even though my symptoms were progressing at a rate they never had before, and I was often struggling to maintain a steady gait. I didn’t want to reveal FA to outsiders just yet but today FA had revealed itself.

Sandy Face was the first kid to pay me out about my wonky walk and it drove home the seriousness of my condition. I’d already acknowledged it was getting harder and harder to pretend I was just another ‘normal’ kid. He had just brought this feeling to the surface and made me realise I couldn’t hide FA for much longer.

Sandy Face might have been the first to make an insensitive remark about FA, but he certainly wasn’t the last.

Once my parents started telling people about my diagnosis, and it became common knowledge that I had FA at my school, my symptoms sped up. It was almost as if my body knew everything was out in the open and took full advantage. I was no longer just ‘lazy’ or ‘klutzy’ and it was becoming increasingly difficult to pretend I was ‘normal’, especially when being ‘normal’ was all I wanted back then.

At that point I was still trapped by the desperate idea FA was only temporary. This whole wonky walk thing I had going on would be a phase, one that would end before I graduated high school.

This idea was often fuelled by well-meaning adults telling me to remain hopeful that I would get better soon and start walking normally again. ‘One day soon researchers will find a cure, you know sweetie. Science is advancing so quickly nowadays.’ A mantra repeated to me by nearly every single adult who spoke to me about my condition.

The truth was FA wasn’t slowing down and I didn’t know how to stop it, so I held onto this hope with both hands. Patiently awaiting the cure, which I believed to be the only hope I had for a life worth living.

My wonky walk had reached the point where I not only felt really unsteady but unsafe too. At school, I remember my parents and teacher decided I should no longer use stairs to get to my classroom. My classroom was relocated downstairs a few weeks later.

I recall my classmates moving furniture when we moved rooms, and I wasn’t allowed to help them. Instead, they told me to rearrange the chairs once they were inside our new classroom. I felt awkward about this; I couldn’t shake the notion I was just being lazy and could help them on the stairs if I really needed to.

Not long after the move, I rebelled against the “no stairs” policy. I felt like a breakable object, teachers were treating me like glass, not like the average eleven-year-old, which I so yearned to be. I just wanted to prove those teachers and my over-protective parents wrong. I’d never liked being told what to do and I itched to do just the opposite.

I knew if I could just ‘focus’ on the railing nothing out of the ordinary would ever happen. I wasn’t facing the reality that focusing seemed to only ever last a short amount of time before my control over foot placement faded.

Every morning I’d race upstairs before the bell rang, accompanied by Sarah and Em to discuss topics of great international importance. Which celeb we had the hots for, or something along those lines. When the bell rang, we’d head cautiously downstairs to our classroom.

Sure enough, on one of these mornings, my plan of ‘just focus on your feet’ went to shit.

Everything about that morning was making me feel comfortable; the birdsong, my friends chattering, our laughter, we were all unusually excited. One of them even boasting that she personally knew the boy who played Harry Potter.

When the bell rang Sarah, Em, and I made our way over to the stairs. I grabbed the railing and continued talking as we descended. I made it safely down the first flight, so I was much more confident heading down the second.

And then it all happened so quickly.

One moment my hand was resting on the thick metal railing and the next it wasn’t. My left knee locked itself into position, while my right knee kept moving fluidly. My left leg was refusing to budge an inch, and my right leg was stuck mid-air searching for something solid to stand on. This happened because my FA-riddled nervous system had confused my leg movements spectacularly, and I’d been too preoccupied talking to pay attention.

By the time I realised one of my legs had become immobile it was too late, the momentum I’d gained caused my body to lurch violently, which made me lose my balance and forced my hand off the railing in the process.

I tumbled dramatically down the stairs, waving all my gangly limbs about and splitting open my knee and elbow when it contacted the concrete wall on the way. I must’ve looked like a fish out of water, flopping around in a panic the whole time. Even now I can still visualise the horrified looks on the faces of my peers passing by.

I landed in an awkward heap at the bottom, screaming when I saw my own blood. The familiar burning sensation had spread throughout my body, and I realised how stupid I must’ve looked. I couldn’t seem to figure out what had just happened.

Some of my classmates had seen me trip over nothing so I couldn’t even invent some elaborate lie about an imaginary object which caused me to fall. I was saved from further embarrassment by one of the school maintenance workers. He rushed over and swept me off the ground before racing for the sick bay.

My parents didn’t come to get me that day, but they were notified. I remember being worried about how angry they’d be when I got home – even as I fell, I was wondering if they’d ban me from watching The Simpsons.

Even though they had been angry at me for placing myself in harm’s way (especially when the school had done so much to prevent it), they understood better than I could’ve explained. They knew I was still coming to terms with FA and wasn’t happy about being treated like a ‘sick’ kid when I felt fine.

My parents decided to float the idea of me using a walking frame at school to avoid any future spills.

I completely rejected the idea. I told them only old people had walkers, and I was not a granny, the last time I checked.

Not long after their failed attempt, my girlfriends fell upon me one lunch break, all meek and choosing their words carefully.

‘Hey Jamie, wouldn’t it be cool if you got a walker?’ Sarah smiled warmly at me, displaying the blue and green bands around her braces as she did so.

‘Umm, have you seen who have walkers?’ I squeezed the empty juice box with enough pressure to make it crumple easily. ‘Old people!’

A crimson blush crept up Sarah’s neck. She dropped the meek act and started to speak up. ‘Okay, okay. Look everyone in our year level knows why you need one, so, like, who cares what everyone else thinks.’

Em nudged me in the ribs and grinned as she tucked a loose strand back into her ponytail. ‘And besides it means you’ll have a seat with you wherever we go, you know how long the lines at the canteen can be.’

‘And we can, like, all sit on it!’ Sarah slung an arm over my shoulder, letting her other arm paint a picture in front of my face.

Em clapped, ‘yeah!’ She hesitated. ‘If you don’t use it, then like, we totally will.’ She made gestures indicating Sarah and herself as willing candidates.

Sarah’s pale blue eyes sparkled brightly. ‘We can decorate it with cool stickers and whatever.’

‘Or paint it with sparkles?’ Em suggested.

‘You’ll have a basket, so you won’t need to, like, carry all those heavy books.’

‘We can have cool races around the quad with it.’

‘You can ram people when they’re nasty.’

‘You’ll probably be able to, like, get out of PE with it.’

I chose my very own walking frame a few days later. But I was only ever comfortable using my walker at school. I refused to be seen outside of school with it – I still wanted to maintain some semblance of ‘normalcy’ in my life (if not at school then at home and on the weekends).

So, school became a safe zone for me, I never had to try and hide FA from anyone there. Every time my wonky walk was noticed in public, people would stare and make me feel like a pariah.

My fondest memories of the walker at school involved three other girls, sometimes four, piling on top of my sticker-covered walker and letting gravity guide us down a ramp near the canteen. Every single ride ended with all the girls spilling out onto concrete but that never stopped us from trying to perfect the outcome.

In my first year of senior school, I received my first motorised wheelchair. Getting around the school grounds with my walking frame was really draining, and it eventually took its toll. I did not have the energy needed to get around the hilly campus for six hours every weekday.

I was exhausted so I began to use my walking frame for morning classes and my motorised chair for the last two periods. Thus, at the age of twelve I began using a wheelchair part-time; a loaner from a not-for-profit group specialising in disability. They lent me this second-hand motorised chair while I went through the long and  extensive process of ordering my own.

The chair was bright yellow and constantly got stuck on the lowest speed possible, my friends often walked faster than the chair drove, leaving me feeling embarrassed. Soon enough I got my own motorised wheelchair, and I was head over heels in love with it. It met all my needs, but that’s not why I treasured it; I thought it was so cool because of how fast it went.

I loved watching my classmates drive my motorised chair around, they would always attempt to drive in a straight line, but their bad steering reminded me of my wonky walk.

Those rides fostered a sense of understanding between me and my peers. It showed them I was still relatable – someone they didn’t need to bite their tongue around or leave questions unasked.

Behind closed doors I was going through struggle after struggle as my condition worsened. I’d fight against the urge to sit down and rest my legs whenever I’d been walking short distances.

I’d fight to hang up clothes in my wardrobe even though my shaky hands would often knock all my clothes off their hangers; I’d concentrate on my uncoordinated hands as they struggled to pull my hair up into a ponytail in the morning; I’d focus all my energy on doing up the buttons on my uniform, so my parents didn’t have to help me dress.

I tried as hard as I could to stop my legs from becoming twisted and causing me to fall at home. I resisted the need for a wheelchair by using all the available furniture around the house as support. When I walked down the hallway at home, I’d bounce off the walls when my balance went. These daily frustrations seemed to use up energy I didn’t know I had.

However, I felt like my eyes were really opened when I got the opportunity to meet a young woman with FA. I was only fourteen years old at the time and had never had a role model in a wheelchair before.

I remember that was the day my opinion of myself completely changed. I remember her so clearly; all glammed up and smiling the most charming smile I’d ever seen on someone in a wheelchair.

Her beautiful blonde hair framed her face, and her flawless makeup seemed to complement everything she did. I was in awe of her beauty and wanted to be exactly like her when I grew up.

I eventually got the opportunity to speak with her one on one that day about whether she had a boyfriend or not. For me, boys were starting to become important, and I wanted to know how she dealt with them.

She told me with a hint of sadness in her voice, that there was no way she would ever burden someone by being in a relationship with them.

I never questioned her more; she was making clear how selfish I was being to even want that. I felt like an idiot and stopped talking for the rest of the day. It felt like an absolute sin to me to want someone to love me in that way.

In hindsight, I wish I’d realised that she was not a perfect idol and was someone who’d been struggling with mental health issues her entire life. I would have liked not to hear her words echoing in my head as I grew up, but I was only fourteen years old and had a hard time chasing these words off.

It’s hard to pinpoint an exact day I stopped walking, but I do know it was in grade ten, and I was fifteen years old. I’d found myself growing increasingly fatigued when using my walking frame at school and had started relying more and more on the motorised wheelchair to get around.

One day I realised I couldn’t get out of the chair without assistance, I’d been unable to walk without assistance for years, but this was different; I could no longer walk down the hall at home, relying on the walls to stop me from toppling over. I could no longer hang on to furniture to maintain my balance.

I’d even stopped using the walking frame because it took so long to get my feet in the right position. When I realised, I was using my wheelchair full-time and could no longer get out I stopped seeing the chair as something to have fun in and started seeing it as a problem.

When I couldn’t just hop out and walk into an environment that wasn’t wheelchair accessible, I felt tethered. When I went out in a wheelchair, people I didn’t even know looked at me strangely with sympathy and others with distaste. Their looks confirmed for me what I’d suspected for some time; that I was no longer going to be able to live the life I wanted because of my disability.

I got my first proper period just before this time and was disgusted on all fronts with my pubescent body. The hormones were swirling within me and so was the self-loathing.

The complications of my condition began to really sink in at this stage and the anger I felt about having FA grew to the point where it was always simmering beneath the surface. I started to blame myself for everything related to FA, even though I knew on a subconscious level it wasn’t really my fault.

I knew it was illogical to blame my parents for giving me FA when they hadn’t even known such a hereditary disease even existed before my diagnosis. There was no family history of FA either which meant there were no relatives to blame.

That was my problem, there was no-one to blame. My anger was directed at a recessive gene I couldn’t even see! I needed to direct my anger at someone and even though I knew how stupid it was I couldn’t stop blaming myself.

I immersed myself in fantasies during those pubescent years where I would rip the corrupt gene from my body. Gouging through flesh and blood before I found it and sometimes, I even dared myself to try.

I’m pretty sure this idea came from the movie A Beautiful Mind, when the schizophrenic guy attempts to prove the doctors wrong by digging for the CIA implant embedded deep in his flesh. However, unlike Russell Crowe’s character, I knew my search would prove futile. No matter how deep I dug into my flesh, or how thoroughly I looked, I’d find nothing.

I’d often fall or hurt myself because of FA, and I managed to convince myself the bruises and cuts I sustained were because I deserved them. I just knew FA was my fault, I thought maybe it was because I was a bad person in another life, I wasn’t sure, but I knew somehow FA was my fault and I was being punished. I deserved it.

I had no-one but myself to take my anger out on, and I was so angry all the time. I couldn’t understand why my symptoms were progressing so quickly and invented my own reasons. The chief one being my lack of knowledge regarding FA as an adolescent.

I decided because I started relying on a walking frame in junior school it had encouraged FA to develop faster than it would have if I hadn’t used any walking aides. I blamed myself for not fighting hard enough to walk unaided, for relenting so quickly.

I told myself how disgustingly weak I was to have given in so easily to FA. I quickly became my own worst enemy.

I continued to fight this losing battle against my own body, and to ignore logic. This kind of thinking brought me undone on so many occasions. No matter how hard I fought I still didn’t get the results I wanted.

The nature of the beast made me want to tear my hair out and it was during these times that I often asked myself the self-indulgent question, ‘Why me?’ The frustration I felt often burst forth in screaming fits of anguish. I threw terrible tantrums at home – two-year-old behaviour paled in comparison, and this was my secret shame. The desire to handle all my problems like a saint was always outweighed by my frustration.

I began to understand what FA was doing to my body wasn’t going to end happily and at the tender age of fifteen my future seemed bleak. I had the strongest suicidal thought I’d ever had. Suicidal thoughts were constant for me throughout high school but on this day, the thought turned into something more than just an idea.

One stormy afternoon I was so upset I just snapped. No-one was home at the time, so in a furious frenzy I went searching through my parents’ medicine cabinet and found a packet of pills.

The first thought I had was ‘I doubt anyone will show up at my funeral’. I doubted they’d notice I was gone. I told myself I was a massive fucking burden to everyone around me and to everyone who’d met me. I’d be doing my parents a huge favour by ending their worries about me now.

With a sinking feeling in the pit of my stomach I poured myself a glass of water and with a shaking hand I popped the first pill. I hated myself so much at that point I didn’t want to know what my future held. I felt so ugly and undesirable. I knew I was destined to be alone forever, or at least until my life expectancy ran out – just another life unjustly claimed by FA.

All I could think about was ending my present before my future became too painful. It was the most selfish idea I’ve ever had and I’m ashamed to admit I never once imagined how my loved ones would react, I thought I was doing them all a huge favour. Everything else paled and checking out seemed to be my only option but as soon as that pill touched my tongue, I spat it into the sink and flushed it down the drain.

Just like that, at fifteen years old, I chose life over death– I wanted to live and wanted to see what the future held. My pig-headedness saved my life that day – my suicide attempt foiled by something deep inside me which refuses to let FA win.

In that moment I knew suicide would never be an option for me, something I never truly wanted. So, I packed away the evidence and when my parents got home, five minutes later, I pretended nothing out of the ordinary happened.

My final school assembly felt so surreal, and yet, somewhat anti-climactic. I’ve read about how completing a major milestone, such as high school, can feel that way, especially when the transcendence to adulthood doesn’t feel the way it seems to in movies.

Sitting in my school auditorium listening to reminiscent speeches, I didn’t feel more grown-up or mature like I thought I should.

Graduating was a bittersweet moment if anything. It meant I had to leave my predictable safe-zone and go out into the unsheltered world. On the other hand, I could break away from everything everyone already knew about me. It excited me to know that if I attended university nobody would know about FA.

Towards the conclusion of the ceremony, I received my very own brightly lit candle, before following my classmates out of the air-conditioned auditorium into the hot and stinging sunshine.

Outside a tunnel made up with both senior & junior students flanked us on either side as we completed our final lap around the school. I was so busy trying not to hit anyone with the chair and trying not to set fire to myself with the sweating candle that I didn’t notice much else. After a while I was overcome with jittery nerves. I remember thinking ‘what now’ while I passed all my teachers from previous years.

I snapped out of it when I passed the grade ones near the end of the tunnel.

A small boy with blonde hair sang out loudly. ‘Bye, wheelchair girl!’

This innocent comment brought me back to the present moment and made me smile.

I realised with mixed feelings I’d probably never be referred to as ‘wheelchair girl’ again, at least not with the same affection.