“Hardships often prepare ordinary people for an extraordinary destiny.” – Chronicles of Narnia: Voyage of the Dawn Treader

I grew up in a middle-class family. Definitely not well off like my friends with chauffeurs but I didn’t starve either. If it wasn’t because of my younger brother Eugene’s existence, chances are I would’ve been just like my peers – living a smooth sailing and normal childhood.

Eugene was born with a genetic disease called mitochondria myopathy. Essentially, his energy cells don’t multiply like a normal human being and children with his condition don’t live past the age of 20.

We didn’t know this when he first came into our lives. Misdiagnosed at birth, we thought his illness was curable. My elementary school days were unlike others. Instead of going for piano lessons, ballet classes or extra academic lessons, I was tagging along with my mom and Eugene to meet different doctors.

My parents sought for solutions everywhere. Since Eugene is disabled from birth, we tried numerous physiotherapists to get him to walk. He had two surgeries before the age of three to straighten his bent stiff legs and figure out what was wrong with his muscles. Visits to different types of specialists, acupuncture and bitter herbal concoctions became the norm in our lives.

Week nights would include a half hour family session of physiotherapy called “patterning” – one that requires five people to move Eugene’s limbs and neck.

Despite our best efforts, Eugene left us exactly two months before he turned 16 from complications due to his illness. His brief but life-changing presence had altered our view entirely towards death and what it means to live.

While it was a great loss to the family, we didn’t lament or bemoan that life was unfair. If anything, Eugene taught us to shine through adversity. Despite his inability to fulfil wishes of seemingly simple activities, Eugene never complained or succumbed to self-pity. He embodied a strong spirit full of joy and optimism. Whenever we told him to swallow that cup of bitter drink or bear another 15 minutes of painful therapy, he would quietly listen, grit his teeth and followed our advice. It was not easy. To have this coming from a child is rarer. I learned through Eugene’s life to always have courage to take decisive action, and to remain joyful even when times are tough.

This year marks the 11th year of his passing and as I reflect back upon my life after Eugene left, I am left with gratitude. My childhood had shaped me to become determined to forge my own path rather than succumb to stereotypes. I wasn’t content with just getting a degree, followed by a job and then getting married by age 30 - a life path that everyone else I knew was adopting.

After Eugene passed, I began to ponder: “There has to be more to life than this standard rite of passage”.

It was with this resolve to live a life that wasn’t restricted to societal expectations that I applied to the best journalism schools in the US and decided to follow my heart - be a journalist. It was rather unconventional as it’s a profession deemed as low paid, and I was told by relatives and friends alike that it was a waste of my intelligence.

However, I had harbored this dream of becoming a journalist after witnessing the aftermath of 911, with media shaping people’s views through its coverage. How a news organization decides the way to report incidents can vastly mold right or wrong leanings.

But as someone with low self-esteem, I didn’t have the courage to be a journalist and had put it aside as an unrealistic ambition. It wasn’t until after Eugene’s passing that I told myself to discard my fears and to pursue my goals relentlessly. After all, life is unpredictable and short.

An idealist at heart, I held onto the phrase, “The pen is mightier than the sword”. With this mindset I went on to obtain a Masters degree in journalism from an Ivy League school.

As always, reality differs vastly from the dreams held by youth. I graduated with great hopes that I would be able to utilize skills learned to writing about injustice and promoting good governance. However, I struggled for almost a year in getting a journalism job. Even then, my first reporting job wasn’t anywhere close to humanistic as number of clicks is prized above accuracy in depicting scenarios.

Subsequent years saw a career progression to better news organizations that value veracity but what remained lacking were newsrooms that prized work based on a desire to improve the communities it serve. At times, I felt that there was nothing I could do to alter the newsroom environment. After all, news organizations struggling with revenues have little time and patience to think about having an equitable newsroom and producing articles that are of value to society.

It was at that moment when I felt stuck that I was given the opportunity to be a part-time workshop trainer under a technology company’s program to train journalists on digital tools that can aid and improve news reporting. I realized that transforming newsroom mindsets can happen in many ways and from different approaches. Engaging newsrooms to train journalists and editors is a start to forge interaction, understanding and eventually instilling positive ideas that can translate into articles imbued with a sense of civic duty.

Currently a co-trainer and I are expanding the workshop to reach more local journalists across different states within Malaysia. We may not see direct outcomes yet from previous trainings conducted but I am optimistic that within a year, we will see better reporting from local media outlets that would keep politicians, governments and businesses in check.

Honestly, I cannot proclaim to have the answer towards creating more humanistic news organizations. All I can offer is determination and heart to make that happen somehow.

If there is anything that I have learned from my brother Eugene, is that to keep trying instead of complaining, whining about the situation. That spirit is one that I will always hold close to me.