It took me some time before I was happy with who I was, mainly because I didn’t like my disability. I still don’t like it, but I’ve learnt to accept it as a part of me. I may be disabled but I’m still alive, and love my life.
I drove my electric chair through the door and pulled up next to our family dog, a black Staffy named Diamond, who tried to jump all over the chair when she saw me. I leaned over the side of the chair and rubbed her head affectionately.
Dad’s irritated tone of voice cut through the air. ‘Darl leave the dog.’
I jerked my head up and glared at him. ‘I didn’t have time before gym to say good morning to Dimey so excuse me if I take the time now.’
His tone continued. ‘For god’s sake! Do you want me to transfer you or not?’
My eyes narrowed when he finished and I felt several facetious responses just waiting to come out. I swallowed them though when I saw his face. He was completely white and his features were scrunched up like he’d smelt something off but I knew that face could also mean he was in pain. I couldn’t smell anything off so I presumed it was the latter. It reminded me of what I’d forgotten, Dad was still undergoing treatment for prostate cancer.
Straightaway I felt like a horrible person for forgetting that he was sick. Everything seemed to stop in that moment, time paused and my blood turned to ice in my veins. It felt like someone was squeezing my heart with an iron fist. When time began again I’d let out the breath I hadn’t realised I’d been holding. My shoulders felt incredibly heavy, like I had the weight of the world on my shoulders.
‘I don’t know if I can do this.’ Dad leant against the wall and breathed heavily.
My chest tightened. ‘Yeah, I don’t think you should, you look exhausted – why don’t you have a lie down before your appointment this arvo?’
He closed his eyes briefly and grunted. ‘I might just do that.’ He turned to go and then stopped. ‘So Kelly is coming at mid-day, will you be right til then?’
I nodded slowly while I thought through what I could do by myself until our twenty-year-old care-giver arrived. ‘I’ll just go on my computer for a bit.’
Dad looked at me through bleary eyes and nodded. ‘Okay bloss.’ He did a big yawn then and headed off in the direction of his bedroom.
During the next half hour, I sat at my desk in my electric chair and scrolled through my newsfeed on Facebook, catching up on what my friends had been up to and checking out their latest photos. After a while my eye caught a headline for an ABC online article that someone had shared on my newsfeed; the headline read ‘Letter to an 80-Year-Old Me’ and it was accompanied by a photograph of what looked like a short and possibly disfigured chick in a wheelchair. My Facebook friend had commented on the article saying it was one of the best articles he’d ever read, but his comment wasn’t what made me click on the link, it was the desire to see an enlarged photo of the author that made me do it. The itchy feeling of morbid curiosity that caused other people to stare at me when I was out in public was now making me click on the link so I could check out how disfigured this chick was, and even though I felt guilty as fuck I still did it.
In the enlarged photo I discovered that apart from an obvious form of dwarfism and a slightly pinched eye she wasn’t horribly disfigured like I thought she would be. I reckoned she actually looked pretty normal, for a disabled chick anyway. In the photo she smiled up at the camera cheekily and I noticed her flawless make-up. Her hair had been cut short in a stylish elf-like do and her hair colour was a multi-toned ginger. She wore this shirt I really liked and I found myself approving of her look. I was surprised at how attractive she was despite her disability. I couldn’t understand why she seemed to be happy with who she was in the chair when I still felt like such an invalid human in mine.
Underneath the photo, the name ‘Stella Young’ was printed in black. I still felt guilty for objectifying Stella Young to satisfy my own curiosity – I hated being objectified in the same way. I skimmed through Young’s article so I could pretend that wasn’t the only reason I clicked on the link. It was a decent article and pretty gutsy writing a letter to her eighty-year-old self, considering she mightn’t make eighty because of her condition. I continued scrolling through the article but after a while I didn’t really pay attention, I usually didn’t like reading much about anything to do with disability anyway. I only stopped scrolling when I read the words ‘came out’ and again that itchy feeling of curiosity made me search what I’d read thus far for similar phrasing. I was surprised when, a moment later, I read that Young’s ‘coming out’ wasn’t to do with her sexual orientation as I’d originally thought.
Young wrote about the days back before she came out as a disabled woman and how she used to pretend she was like everyone else and didn’t need any ‘special treatment’ from anyone. I felt an odd sense of déjà vu when I read this, it was almost like she was talking about me, but immediately I reminded myself I wasn’t like Young. I wasn’tborn into a wheelchair and I wasn’t going to be in one much longer, when they found a cure I was going to be able to walk again and get my life back on track. I wasn’t ‘disabled disabled’. I didn’t even have that many disabled friends.
I wasn’t enjoying that confronting train of thought so I shut down Young’s article and concentrated on reading all the less confronting stuff on my newsfeed.
By the time Kelly arrived I’d moved my chair into the back room and was so absorbed in watching re-runs of The Walking Dead on TV that I almost shat myself when she popped her head around the corner.
We were still laughing about my reaction when I finished lunch. ‘Your face reminded me of the guy on YouTube who swung his hammer at a spider and ended up punching a hole through his wall.’
I laughed. ‘Gee thanks for the comparison.’ I placed the last spoonful of lasagne in my mouth and my eyes drifted across the clock on the adjacent wall. I realised I’d better get a move on if I wanted to work on my essay for uni. So I pushed back from the table and turned to face Kelly with the intention of thanking her for lunch. Instead I nodded at the coloured wool around her neck. ‘I like your scarf today, Kel.’
Kelly always looked good. Today she was wearing dark colours like she normally did, apart from this wine-coloured scarf keeping her neck warm. Her long ashy-blonde hair was twisted into an immaculate bun on top of her head. When she smiled at me the small diamante in her nose glinted, it seemed to hint at a mischievous side (which I knew she had).
Kelly didn’t look like a professional carer at all. She had this tomboy thing going on, but occasionally she had real girly moments. She didn’t ever wear a uniform to our house because she didn’t work for an agency. In fact, she was a private carer for our family, a nursing student recommended by a family friend. Someone who turned out to be the best fit for Sam and I at the time.
Kelly was so full of life, and someone we were constantly joking and laughing with. She also suffered from health issues of her own and even though these problems weren’t FA related she understood better than I thought she would what it was like to overcome adversity.
Kelly glanced down at her scarf as though seeing it for the first time. She raised her wide blue eyes and gave me another brilliant smile. ‘Thanks JimJam.’ She cleared her throat. ‘Did I tell you that Steve and I went and saw The Heat last night at Robina?’
My eyes widened. ‘I’m probably going to see The Heat tonight with Sarah; did you guys think it was good?’
She nodded and grinned wildly. ‘It was so funny Jam, you’ll love it.’
I grinned in return. Suddenly remembering I needed to get a move on I thanked her for lunch. ‘I’m going to go have a shower now.’
She got up from the table herself. ‘Yep,’ she picked my dirty bowl and cup up off the table and headed into the kitchen with them.
When I reached the hall I heard the distinct whirring of the garage door rising and Kel rushing out the front-door to greet Sam in the drive-way.
I was about ten minutes into a steaming shower when it happened. I’d just brushed conditioner through my wet hair and I was about to use the vanilla-scented body-wash when my grip loosened. The body wash passed through my slippery fingers and dropped to the floor near my shower chair.
I knew I should call out for assistance, but it was right next to my fucking foot! At the time I’d felt like if I asked for help picking it up I’d lose yet another shred of independence, and at only twenty-two years old I felt like I’d lost so much of that already. So I tried to reach for it on my own.
I bent over at the waist and hooked my fingers around the body wash, pulling it closer as I straightened in the chair. I was almost upright when my leg jerked and threw my entire body out of balance, immediately I folded in half due to my core muscles not working properly. When I realised I was going to fall off the chair if I didn’t grab something, anything, I dropped the body-wash and held onto the armrests behind me with both hands.
It didn’t stop me from falling though, instead the shower chair ended up on top of me on the wet tiles. I smacked my knees and forehead against the tiles on the way down, but when I landed all I could feel was the strain in my toes. The pain was so intense I thought the tendons were about to tear. I seemed to have landed awkwardly with all my body weight balancing through my toes. I tried to shift off them a few times but every time I tried the pain became unbearable. I went into full panic mode, all I could think about was the pain and I didn’t even realise my screams were getting louder and louder.
I’d barely noticed the bathroom door crash open but a split second later I felt the shower chair being lifted off me and Kel’s voice asking me where it hurt.
I tried to get what I could out through my strangled voice. ‘T-t-toes!! C-can’t get off!!’
I didn’t even know how she understood but she managed with me still howling away. I felt so incredibly vulnerable through the whole ordeal; completely nude, shaking with shock, and in a world of hurt. I didn’t really care about the whole nudity thing; it was something I had come to terms with a long time ago. But I couldn’t stand always relying on others to help me all the fucking time.
Kelly eased my tangled legs out from under me and helped me sit up. Which felt both good and bad. Good because the pain in my toes had immediately dulled but bad because I started to feel pain in other parts of my body. My back was resting against cold tiles while I tried to comprehend what had just happened. I squeezed my eyes shut and tried desperately to calm myself down.
Kelly’s voice cut through the fog. ‘Jamie, don’t freak out when you see the blood.’
My heart faltered for a second when she said this and my eyes flew open. Looking down I could see watery red smears spread out over the shower floor. There was so much blood I just assumed I’d split my head open. I swore in between shaky breaths.
In the background I could hear a beeping noise and after a moment Kelly shouted in a panicked tone at Sam to turn the fire alarm off. In the next instant I listened to Sam reminding her that she couldn’t have reached it from her wheelchair and I assumed Kel then rushed out to turn it off because a moment later the beeping stopped.
I tentatively placed a hand on my head in an effort to find the source of the bleeding, I felt how slick my hair was and at first I thought it was blood, until I remembered I still had conditioner through my hair. I felt mildly reassured for a moment, but then I saw how red my hand was. I couldn’t work out where the blood had come from, only that there was a lot of it. I tilted my head forward slightly and blood poured down my forehead, rushing into one eye.
A shriek escaped my lips as I squeezed both eyes shut and jerked sideways. ‘Oh my god! Oh my god! Kelly I can’t see!’
She guided my torso to the floor (to stop me from flopping around). ‘Do you want me to call an ambulance?’
I shook my head vigorously. ‘No!’ I was still having trouble getting my breath back.
She headed for the door. ‘I’m going to call your Dad though and get him to come.’
Oddly enough this statement seemed to calm me and my breathing automatically evened out. ‘No.’ I wiped the gunk from my eye. ‘Please don’t.’
Kel stopped where she was. I could hear Sam talking to me from somewhere just outside of my peripheral. ‘Dad’s not going to mind, Jamie, if we call him about a fall.’
I knew she was right, but all I could think about was how tired Dad seemed that morning and how sick he looked when he left home.
I looked Kel squarely in the eye. ‘I’m pretty sure nothing’s broken.’
She nodded silently, more to herself than me.
I took a deep breath and tried my best to sound calm. ‘We can do this, Kel.’
She came over to me and squatted. ‘We may have to get you stitched up though.’
My lower lip trembled, I hoped she didn’t notice. ‘But I don’t even know where the blood is coming from …’
It didn’t take her long to work out I’d split the skin under my eyebrow and nowhere else. The gash was a real bleeder, but not very deep, and eventually we stopped the flow with an old face-washer.
For the next few minutes I sat in a shock-induced daze while Kel rinsed everything off, and then got me up into my wheelchair.
The rest of the day was pretty uneventful. My head felt pretty foggy but I didn’t think I was heavily concussed because I still remembered what day of the week it was and who the PM was. By lunchtime my head had cleared and I was able to laugh along with Kel when Sam re-told how panicky the fire alarm going off after I fell made Kelly.
During the afternoon the skin surrounding the cut above my eye turned a shade lighter than purple and swelled up more and more with each passing minute. By the time Sarah and I headed out for dinner my eye was completely swollen shut and the bruising had turned black.
Despite my just-beaten-up look, the black-eye wasn’t actually causing me any physical discomfort. I was however annoyed at suddenly losing half my vision, especially when I was watching a movie on the big-screen later on. I got a lot of sympathetic looks throughout the meal, I was pretty sure most people thought I’d been bashed by some thug – admitting to them it was actually my bathroom floor that did the damage to my face seemed just a tad more humiliating, so I didn’t say anything and instead boasted loudly to Sarah that she should see the other guy.
When we were in the cinema Sarah sat next to my blind side which meant I didn’t see her pass the popcorn unless she held it right up in front of face. Enough time had passed by this stage for me to see the funny side in the whole unlucky situation and I found myself laughing in the movie in moments when no-one else laughed, just cause I felt like it.
Later that night when I was in bed I realised, with shock, that I was actually kind of proud of my black-eye.
It took me awhile to realise why.
It was because the pain I went through to have this injury appear was clearly visible to all who saw my face, whereas, usually people weren’t able to tell how painful and emotionally draining some days were for me. And right then I began to understand myself a whole lot better than I ever had before.
The following day I looked up Young’s letter again and with one good eye I read it in its entirety. Her words sank in this time and I couldn’t forget what she wrote about changing the way other people perceived disability.
Over the next few years I went through what Young would term my coming out as a disabled woman.
I stopped apologising for taking up so much space in my wheelchair when I was out in public, I realised I had as much of a right to be there as anyone else. Slowly I became more and more comfortable in the skin I was in, and figured out that my disability hadn’t made my life unworthy. Different to what I’d expected as a kid, but not ever unworthy. If anything it had shown me a deeper and more profound side to life.
Accepting that I was ‘disabled disabled’ turned out to be easier than I thought. I even discovered a way to accept my disability and not forgo hope for a cure by refusing to let that hope rule my life as it had done before. I learned to embrace my disability without letting it define me or to overshadow the way I lived my life.
All the pent-up anger I’d stored over the years faded into the background. The intense feeling of self-consciousness I’d grown up with, the notion of being seen by others as someone who was disabled had disappeared. The label society had given me as an eleven-year-old no longer mattered. I knew who I was and that was all that mattered.
It took me thirteen years before I realised my own opinion of myself mattered more than anyone else’s. My self-esteem, which got lost in the chaos of my diagnosis, was finally found. I had the confidence back needed to be proud of the person I had become.
In an odd way that black eye signalled the start of a long journey. Ironically, it took a black eye to help me see what I had refused to see for so long.