Commentary: Having a rare disease has helped me to be super in my own way, even without superpowers

I always wanted superpowers. I still do, if I’m being totally honest.

Wouldn’t it be amazing to teleport instead of having to wake up early; fly high in the skies whenever I had to get away from my troubles; or be really strong so I can live a life of reckless abandon.

The most potent power of all would be the ability to reset any moment. Like in video games, I could reattempt difficult levels, fix mistakes, even erase bad outcomes — all at will.

Nothing would ever become disorderly because I would be a player in complete control. It’s an amusing idea to entertain; though I always yearned for superpowers, I never truly needed them.

At least, not till I was 13 and lost my ability to do everything else that was “normal”.

I first fell ill on National Day 2000, but the memories remain as vivid as ever.

There was the day I collapsed in the washroom at home — no matter how hard I tried, I couldn’t get back up.

There were many times where all I could do was lie on the hospital bed and stare, grinding my teeth ever so often, desperately thinking that the grating (in my defence, the sound gets magnified because of my pillow) would grab someone, anyone’s attention so he/she could help me with that irritating itch.

On countless nights, my father slept in a recliner beside me in the intensive care unit (ICU) so I wouldn’t be alone, when all I wanted to ask of him (and did) was to end my suffering.

It was a suffocating experience for a teenager, and I hated Every. Single. Moment.

RARE AUTOIMMUNE DISORDER

The doctors diagnosed me with Guillain-Barré Syndrome — a rare autoimmune disorder that damages the nerves. It is a rare illness with no known cause, affecting one in 100,000 people.

It robbed me of any sense of normalcy, leaving me fully paralysed within days. I couldn’t speak, eat, or walk — heck, I couldn’t even move my head.

I was bitter and upset because life seemed to have me on a target, trampling on my childhood while everyone carried on with theirs.

I always wondered — “Why me?” Why didn’t any of those 99,999 other people strike this jackpot?

If only life was a video game, then all these negative emotions could disappear with the push of a button. I was often disgusted at myself for being so different, so weak, so useless...

Yet today, that experience isn’t something I would forfeit easily.

With the power to restart, I would never have grown from my time in the hospital, or any experience for that matter.

Life would be so much easier because I could remove obstacles at the first sign of trouble: Redo the PSLE exams that my mum was so dismayed by, relay the confessions that I’ve always regretted keeping to myself, rescind my decision to be declared combat fit for army which resulted in many gruelling (and equally memorable) ordeals.

I would have the power to escape all the negativity, hardships, and pain. I would have fate in the palm of my hands.

Yet, a life with all that power and control also doesn’t seem all that enticing nowadays.

LIFE WITHOUT COMPLEXITY ‘TERRIBLE DULL AND COLOURLESS’

On the contrary, a life without complexity would be terribly dull and colourless. It would be a life with nothing to toil for, nothing to desire because nothing was wrong or could it ever be.

My weaknesses are precisely the reason I see value in my pursuits because in seeking personal improvement, the struggles themselves become meaningful.

Every challenge teaches me a little bit more about myself: How I work, what I love or hate, who I want to be.

If everything in life were smooth sailing, then nothing would ever be worth making a difference in. The ups and downs of life are necessary for shaping my character, and my story.

Concurrently, not everyone has illnesses that they can recover from (whether seen or invisible); for them, their realities remain unchanging.

Sonder, the profound feeling that everyone leads lives that are equally intricate and complex as your own, is a word I feel a deep connection to.

My experience in the hospital makes me appreciate that just like me, everyone is the protagonist of their own story.

In my story, with the support of my family, I got out of the wheelchair I detested, returned to school and learnt loads of new things.

I met life-long friends, many of whom accept me in all my weirdness.

In my story, things turned out alright, but not every story does. Take a closer look at the people around you: What are the stories you’re not seeing?

I have wondered what my obsession with superpowers back then was about: An underlying desire to be different, to stand out perhaps?

Growing up, I was always told that because my earlobes, like Buddha’s, were large, I was special.

I always had this nagging sense that wasn’t true, but that didn’t stop me from believing. It took me a while to stop waiting for things to be “bestowed” to me.

Interestingly, in being able to accept that there was nothing special about myself, I was free to become my most special (or quirky) self, to my own community and friends.

The best part? The decision of what to start, end, and restart became mine alone — not caused by expectations that shackled me to who I should be.

I like to think that this freedom, to decide who I am and what I stand for, is what makes me (and thus, us) super in the best sense of the word.

ABOUT THE AUTHOR:

Mervin Junus, 25, is an economics student at the National University of Singapore. He considers it his duty to conquer the foods of the world. This is an adapted version of a piece that first appeared in The Birthday Book: Restart, a collection of 57 essays on what it means to have a new start in Singapore.