Preethika Mathan’s piece The Truth and Lies between Love and Hate has been awarded The 2019 John Marsden & Hachette Australia Prize for Young Writers in the category of nonfiction. Preethika was presented with the award at the 2019 Melbourne Writers Festival at a special event, and wins a $500 cash prize, an exclusive book pack from Hachette Australia and acknowledgement of their winning entry in Express Media’s flagship publication Voiceworks. Read Preethika’s winning piece right here.

The Truth and Lies between Love and Hate

 

I love him.

It is sometimes a truth, and sometimes a lie; it is a truth and a lie in equal parts. In
maths, it would be an inverse relationship. Sometimes, I hate him. But if I utter that
aloud I would be vilified. If I withhold it and lie, it harms my sanity.

My truth is heartless, my lie is harmful.

People judge me constantly. They have the luxury to judge and walk away. I live with
their judgement, and stand by his side, advocating for him, assisting his liberty and
imprisoning my own. But my story is not unique.

I am part of a distinct minority that distinguishes the whole of me… We work among
you and participate fairly with you, but we are nothing like you. The ebbs and flows
of our routines, the ups and downs of our narrative arc, the depths of our shared
experiences… skirt the fringes of your imagination. We live with a reality that is
theoretical to you. We live with Autism.

We live in awe of it and in fear of it. We see its uncanny brilliance, but we also face
its maelstrom of wrath. My brother lays trapped under the surface of it. His shadow
visible, but his soul hidden, a silhouette behind the walls of our comprehension. One
in one hundred people around you are just like him.

At eleven, he is a sweet boy who is minimally verbal, hyperactive and steadfastly in
toddlerhood. He hugs and tantrums with gusto and he loves and hates with equal
passion. And one day, he will be my only family and my sole responsibility.

Like light passing through a glass prism, etched with invisible but indelible marks,
Autism has fragmented my life and refracted my views and in doing so, augmented
the lines between love and hate, truth and lies…

***

I beamed showing as many teeth as possible, a halo of brilliance to mask the opaque
blackness in my eyes. I stood up tall and walked with purpose, a semblance of control
in my otherwise chaotic life.

Clouds blemished the sky as my friends huddled in a mass of nerves about our last
maths test on Monday. They braced for its finality as I braced for the storm that was
headed my way.

“Wanna study together?” Lexi asked casually, her brown hair bouncing carelessly
across her shoulders.

“Ummm… not today… I’ve got something on.” I said, managing to sound offhanded.

“It’s always on,” I thought as colour treacherously snaked its way towards my cheeks.

“You’re not nervous, are you?” Louise asked incredulously, as she languidly peeled
away from the others. “You practically pass everything!”

At that, a prevailing sense of weariness descended upon me.

“Is everything okay?” Her sea green eyes washed over me like a wave, drawing me into
their icy cool depths. “You seem distant… like you don’t want to be around us.”

She was right, I didn’t. Their normalcy, their carefree innocence, their life – the one they
found ‘routine’, left a cavernous void in me.

“No.” I managed with an even tone, “I’m just stressed about the test.” The lie came
easily. The truth weighed heavily…

That night, tucked under my desk, I tried to focus on Linear Equations as screams
bellowed down the hallway. Group chats playfully bounced around the ether with
‘OMG’s and ‘WTF’s’, as the words on my page blurred to insignificance.

As always, I found myself on an island, stranded from my friends by waves of hurdles
that thrashed about me, and subsided into tranquil ripples by their shores. I wondered
if there was any point in working so hard to achieve equally among them. Afterall,
they could use their achievements to pursue their dreams while I would have to use
mine to care for my brother.

As my mind rocked and thrashed about, the screams stopped. Like a summer storm,
his rage had subsided as quickly as it had come.

I instinctively turned back to the page in front of me, knowing that I had a small
window of opportunity to focus and I had to seize it. My brain clicked into hyper drive
– for me, failure was not an option.

In maths, my brother and I would be neatly plotted on a trajectory. He the “X” axis
and I, the “Y”. We are the variables of Autism. He is the equation and I am the result.

The truth is that without him, I would not have the same drive. He is the fuel that
propels my results. He lies behind my work ethic – the reason I wake up at 6am to
practice piano, the reason I finish my homework and assignments in class and the
reason I strive to do my best. He is both the pitfall and the purpose of my life.
Suddenly my bedroom door flung open and in he burst without a word. Face streaked
with tears, he bounded towards me and thrust his Thomas the tank engine toy into my
hands. I looked over his shoulder and saw our mother, frazzled, defeated and helpless.

“Go rest. I have time to play with him now.” The lie came easily. The truth weighed
heavily.

***

I have a friend who drags me to watch thriller movies with her. Yet in the midst of
these movies, she would always look unhappy, like she’s enduring rather than
enjoying. Sometimes I would catch her at the edge of her seat, weary from sheer
terror, waiting for the action and climax to be over. But afterwards, when the credits
roll, she would gush in delight and reflect on how wonderful it was.

She loves the idea of the movie but hates the experience of it. I realised that in many
ways, my feelings toward my brother are like hers towards these movies. My brother’s
world is for the most part inaccessible to me, but like a moon, he reflects it onto me,
and in doing so, enlightens my perspective on life, grounds me to the things that
matter, and reminds me of the simple joys in life and I love that.

When he is away, I would often find myself reciting his few phrases – mummy and
daddy love me, first study and then play, hot shower please. Despite my many words,
it is his few that encapsulate our steady, unfettered and repetitive expectation of life.
But I think sometimes, I find the plot tiresome, or rather the scenes with him grating,
especially when I have been cast to play it every day.

My brother pulses with innocence and his reactions are full of truths, free of malice,
guile and societal norms. He is adorable and uncontrollable. He tugs at my heart and
he strums my nerves and just like a thriller movie, he keeps me on edge… lies just
under my skin, and sometimes, always sometimes…

I hate it.

***

It was a warm afternoon and I revelled in the peace of the one day of the week my
brother was with my grandmother. Spending every hour of everyday with him during
the holidays had me feeling like I was walking over a chasm, inches away from
falling.

Lazing on the sofa and soaking up the joy of being utterly useless, I aimlessly scrolled
through my phone in pursuit of celebrity gossip, when an article by the ABC about the
new Federal Budget popped into my feed.

It started off as your typical political article, which are always a good laugh: Scott
Morrison did this, this guy wasn’t happy about it, this man would have done a better
job, we need change… But then I saw a headline that made my stomach clench:
“Budget surplus reflects NDIS cuts”

I tried to get away from the article, desperate to remain idle, to block out the reality of
my life. But before my finger could swipe the screen, these words leapt out at me:
“According to the budget papers, spending on the NDIS will be down from a forecast
in last year’s budget of $16.7 billion for 2018-19 to $13.345 billion, a drop of $3.4
billion.”

The words grazed against my consciousness and buried deep into my mind and
despite all my attempts to keep them tightly woven into the confines of my forbidden
thoughts, they unravelled in the days after when our household fell into the clutches of
a meltdown.

As the screams shattered my inner peace and my capacity to love skirted the edges of
an abyss of grief, my inner voice broke into guttural fury. The scales are tipped
against people like me! Because those in power are conscious of the weight of our
siblings’ liability, but not of the value of the asset in us.

The NDIS covers essential disability services in the way that Medicare covers
essential health services. It is a lifeline for families like mine, who are over-worked
and financially over-stretched after years of caring for disabled children. The funding
not only helps the disabled but also frees up valuable time and resources for siblings
like me, so that we can work towards and achieve a self-sufficient future, for us and
our siblings and thereby eventually reduce the burden on the Government. But when
the government cuts $3.4 billion of NDIS funding, they also cut the possibility of this
future.

The truth is that the cut results in our siblings losing therapy, carers, medicine, special
education and skill training programs. And our parents are inevitably forced to choose
between spending drastically less time with us in order to replace the things our
siblings lost, or use resources set aside for us, to account for them.

The lie is that it is for the greater good. When the government’s excavation of the
NDIS is over and the funds extracted are neatly constructed into tax cuts and other
goodies for mainstream society, and families like mine are left to rebuild our lives
from scratch, it is the ruin of siblings like me that will settle like dust and leave a
lasting residue on future budgets. This is the truth that lies in wait…

Disability is a complex equation, multiplying in numbers with an aging population
and dividing society into an inequality of love and hate. It adds to peoples’ burdens
and takes away their liberties. The truth is, it can never be solved until the NDIS
funding formula is rewritten, so that all variables, including siblings are factored.

***

The morning was crisp and though it was a weekend, at 8:00am the house was a flurry
of activity. The washing machine hummed industriously while the Television blared
above the crackle of egg as my dad hummed in anticipation of the omelette that was
forming. We almost sounded like a normal family, until I heard a thrilled voice yell
“Animal!” over all the noise.

She was perched on the sofa with my brother splayed next to her; she armed with
flashcards, he with a toy lion and bird.

“What’s that?” Mum asked, delicately touching the tip of her finger to the lion.

“Animal…” He said dazedly.

“Good!” Mum grinned, her smile reaching her eyes for the first time in a while.
“What’s that?” She said, pressing her finger against the bird.

“Animal!” He announced triumphantly.

He had conquered yet another concept – the fact that two things could belong to the
same group, but have totally different names – a small win, in a long battle within a
lifelong war.

Soon after, my mum hunched over and wrote down some notes on this lesson.
Therapists were running low since we didn’t have much funding anymore, so she had
to execute a lot of it herself.

Meanwhile, in the absence of direct one on one interaction to probe the outer layer of
his world, my brother retreated deeper into it… His solitude manifested in an obsessive
and mystifying sequence of repetitive activity.

He had wandered over to his collection of toys and tipped a box of Disney figurines
that our dad had bought a few years ago. There were over a hundred of these, and the
thud and bang as they fell on the hardwood floors resonated throughout the house. I
watched, as he scooped them into a mound, his hands moving with a sense of urgency
and compulsion while his face remained blank and his eyes an opaque black.

Once again, like many times before, I found myself mesmerised by his detachment, by
the untethered nature of his existence and I wondered, inexplicably at the sound of his
thoughts. Were they dull and subdued, shrill and panicked or soft and misty, like
fluffy clouds, passing through the sky – transient, transparent and almost, but not quite
non-existent?

Like many people on the Autism Spectrum, my brother was born without the natural
ability to absorb words, nor the interest to communicate. While physically he could
produce the sound of words, mentally he could not understand them. And so, his
thoughts were locked into a wordless void; a breach between his consciousness and
our comprehension.

Words are one of the most distinguishing features of humanity. They are the sound of
us, echoing the harmonies within and the stories about us. They give us the ability to
influence and be influenced by the world around us…

Life without words is isolating and my brother’s frustration and blinding terror prior
to acquiring them is seared in our hearts and the scars on my parents’ bodies. From
very early on, it was evident that his ability to communicate would be the most
powerful armour in this protracted struggle… and so my parents invested their life
savings into therapy to teach him words.

When their savings eventually ran out, they faced the prospect of having to stop
therapy, and send us all tumbling back down the hill that we sacrificed so much to
climb. But fortunately for us, former Prime Minister Julia Gillard had the vision to see
the need for and the value in these therapies and with the unanimous support of the
Australian people, rolled out the NDIS.

Beside me, my mum stirred and decisively closed the therapy folder. She had finished
her notes, created the lesson plan for her next session and now it was time to cast off
the ‘Therapist’ hat and don the ‘Mum’ hat for some time.

Age or maybe worries or maybe exhaustion or maybe an acidic combination of them
all had etched contours across her forehead, crinkled the corners of her mouth, and
tugged at the swells of her cheeks. But today, there were no bags under her eyes.
There were no bruises on her lips from where she bites them when she’s nervous.

She looked relieved to have survived another day of juggling roles, happy to have
added one more word to the small mound piling in my brother’s head. Though we
quietly enjoyed the moment, we knew that in truth, we were only at the foot of a
mountain of words and concepts that needed to be taught and with the recent cut in
NDIS funding, we could feel the rumble of the avalanche that was gearing to bury us.

***

Surrealism is the art of discord. It is the incongruous juxtaposition of objects that
don’t collaborate and the clashing notes of colours that shouldn’t be in the same
artwork. It is about seeking out patterns in a disturbing mess and it has a way of
evoking a spectrum of contradictory emotions.

My eyes bored into the cubic shapes and confronting objects that made up Picasso’s
Guernica. The incompatible images and jagged irregular shapes poked and prodded at
my mind, confusing my senses and eating away at my certainty. My teacher’s clear
voice cut through my thoughts as she instructed us to interpret the mess that lay in
front of us.

Though I knew that Guernica’s monochromatic tones and provocative pictures were
supposed to depict the chaos of a world war two bombing, the chaos it incited in my
mind, was far too apparent for me to interpret anything reasonable from the image.

A one-eyed bull peaked its head out of rubble as a horse bucked hysterically, but all
around these two images were a discordant clutter of bizarre black and white forms
that floated through my mind and whizzed out of it just as easily. As I poured over the
image, willing myself to fabricate an understanding of the artwork, a thought niggled
at the back of my mind. It was like an itch that I was unable to scratch. A thought that
felt so poignant and yet aberrant.

But when it finally fused and formed, I was struck with the realisation that my
difficulty in interpreting surrealism was much like my difficulty interpreting my
brother.

Like a surrealist painter my brother finds inspiration in things that I wouldn’t give a
second glance, he juxtaposes my comprehension of the world around us. At the beach,
where the water laps against the shore, I would see a mound of sand that needs to be
cleared to build a sandcastle; he would see the particles slipping from their positions
and being carried away by the wind to new mounds and new beaches. At the piano, I
would hear the music that the instrument produces; he would see the sequence of the
keys that are pressed. And, on Friday nights when we diligently watch movies as a
family, I would see the characters on the screen; he would see the colours in the
backdrop of the scene.

The things that he notices and the different way he interprets the same situations as
me, is surreal. And as I looked down at Guernica, one of Picasso’s masterpieces, I
realised that like my brother, there is an uncanny brilliance about surrealism paintings.
And like my brother, it is one that inspires both love and hate in me.

***

I hate that I love him…

That is the truth that lies between us.