Orko, My Brother
AUTISM AWARENESS MONTH
They played, they fought, they eat cheese burgers with friends… this may seem like a story of just any household with two boys with an age difference of five years. Except that Orko has epilepsy and is autistic. In a heartwarming account, Rajeev Roy talks about the very special relationship he shares with his younger brother.
Pic 1- Rajeev (left) and Orko
My brother, Orko, was born. In 5 months he experienced his first seizure. Truth be told, he didn't - we experienced our first seizure. What does an infant know to even comprehend the reverberations of the moment? How were we to even understand the unspoken pain endured by him?
It was the day I grew up. And I was 5.
Every older sibling is a caregiver. But this was special. This needed more. More empathy, more concern. Before someone begins to feel sorry for me (or feel the need to), I'll say this - my brother was as much a sibling as anyone else's. We played, we fought. He threw a rock at my head, I bled. I complained to my parents and he was admonished. He cried. Nothing much of note, expect for the seizures.
As the years rolled on, and I turned 9 and he, 4, the landscape changed. We were enrolled in the same school. I'd be called from my class because he was having a seizure in his. And in India, even qualified educators weren't trained to deal with the situation. Only I, all of 9, was.
Soon, sadly, a new issue cropped up. His performance in class. And then it struck my parents. I continued to age, and he didn't. It wasn't just epilepsy. It was speech. It was emotion. It was empathy. And the lack of it. The rock thrown at my head wasn't simply a sibling moment. It was a moment that signified a lack of understanding of the danger it brought with it. It was a moment where someone unable to express himself retracted to do so in the most primal of ways. And was unable to fathom the need for punishment. And he expressed subsequent confusion through tears.
The learning curve that refused to set sail meant that I saw my parents go pillar to post in search of special-needs educators. Something India lacked then, and lacks now. I saw them fight for acceptance - of them, their battle, and of their son. I had only one role in this - to be there, so they could try salvage a little of their lives, and youth. As a rather normal couple who fell in love, it was a massive roadblock. They enjoyed a night out at a pub, a small concert, the occasional drink. They had a vibrant circle of friends. And were unable suddenly to explore this life further. And not because of the epilepsy - that had been digested - but because of a looming wall of uncertainty. They were now parents that had a child, for life.
It was the day I became a parent. Looking at them, I too realised that I had a child, for life, whether I wanted it or not.
The next 15 years were a blur. And I can only thank my parents for it. They shielded me from their troubles and let me lead my life, my education, my angst, my revelry. And when I returned, I returned to a fully grown brother, still a child, but this time, a friend too. And it wasn't a friend like those made when we pity the bullied. He was a friend that even my friends befriended willingly. A perfect mate for a night of video games, an able accomplice in eating unhealthy cheese burgers, and a great listener (as long as it suited his world view).
Pic 2- Rajeev (left) and Orko
It's been interesting since. His struggles to be seen as a child. Yet his insistence to be viewed an equal by his peers. His dissonance when having to choose between his parents, and his brother, the friend, or the many well-wishers that erroneously enable and molly-coddle him. His rise as an artist who could truly portray the emotions of animals, his demise when confronted with his obsession - he now chooses to draw cars that he fancies, cars or rather paintings which no one will buy. His wish to continue to attend his childhood school, yet his confusion as to why he can't proceed to college like I did.
A car wherein he writes his thoughts about it as part of the image
An owl that Orko gifted me - it is my most prized possession
The road ahead is extremely uncertain and I don't know where life will take us. While the burden is still my parents', I too feel helpless sometimes, or rather bad, that my life has been replete with wonderful experiences, but there have been so few that my brother could enjoy due to various complications. So, at this time, the only promise I make is that while I continue to grow in to my role as a parent to Orko, I will ensure that I become the bad kind of parent. It's time for him to live a little, and grow through new experiences, if not education, and if I can help him with that, I believe I will finally begin to make a meaningful contribution to his life.
Rajeev Roy is a strategic planner and brand consultant with over 10 years of experience in advertising and marketing. He is an avid photographer and design enthusiast.