SLOWLY, he raises his hand to show me an unusually large lesion on his right hand. Even through my laptop screen, I can see so clearly what appears to be a large and angry lump on Muhammad Firdaus Omar's hand. He tries to bend his fingers to form a fist but manages only to slightly curl his fingers.
"At some point, I'll need to go for surgery to remove this," confides the 38-year-old, voice low. He adds: "It has been growing bigger. At first, when it was still small, it wasn't such a problem. But now it affects my ability to do my work."
As I attempt to get a better look at the lesion and wonder silently just how painful it could be, Firdaus continues as if reading my thoughts: "It's not very painful, unless you put pressure on it."
Asked whether he's planning on going for surgery any time soon, Firdaus' smile is one of resignation. His voice calm, almost sage-like in manner, he replies: "Surgery is actually quite risky as removing the lesions may run the risk of affecting the nerves. I have to rely on my doctor to advise me on when is the right time to go for the surgery."
However, there's no guarantee on the outcome. The lesions are capable of growing back, even after surgery. This is on top of the countless other lesions covering the rest of his body, all of which differ in size.
Listening intently to his story, I learn that Firdaus lives with Neurofibromatosis Type I or NF1, for short. It's a genetic disorder that stems from the nervous system. In his case, multiple tumours grow all over his body, and even causes changes in skin colour.
Although the tumours are non-cancerous, it does they do cause him discomfort.
They also show up on his face and all over his body, and he has no way of hiding them from the public eye, even if he tries to. People who don't know any better and catch sight of him may avoid him at all costs, even though there's no way of them contracting this condition.
Nonetheless, he seems to have come to terms with this.
Asked whether anyone in his family has a history of Neurofibromatosis Type I, he shakes his head. His parents don't have it and neither do his wider family. There doesn't seem to be an explanation. Coincidentally, Firdaus was born on Feb 27, just a day before Rare Disease Day, which falls on Feb 28 every year.
THE LUCKY ONE
I'm talking to Firdaus via Zoom, which was at his suggestion. It's his off day and he's happy to share his story. The Cheras-born confides that even during the weekends he prefers to stay in the house, where he lives alone, instead of going out.
"What do you do in your free time normally?" I ask.
A pause ensues as I note a slight hesitation on Firdaus' part. "To be honest, if I don't have appointments, I prefer to stay at home," he finally replies, tone sheepish. He adds: "I don't really like going out. If I do have to for some reason, then I prefer to go out on weekdays when everyone is at work. Anyway, I don't like crowds and traffic jams."
But, if there's one thing that he'll happily leave the house for, it's to support events organised by the Malaysian Rare Disorder Society (MRDS), of which he is a member. Those events, most of which took place before the pandemic, are important for him as Firdaus believes that more awareness is needed to be shed on those suffering from rare disorders in the community.
Interestingly, Firdaus counts himself "lucky". He smiles at my look of astonishment. Continuing, he tells me that at least he has been accustomed to his condition from a young age. His condition started from birth although in the beginning it wasn't so apparent. It only developed as he grew older, and the lesions grew bigger and more prominent over time.
"My neurofibromas began growing when I was a child. For some children, the signs are there since birth. For others, it only starts showing up when they get a little older," recalls the soft-spoken Pisces.
"You say you count yourself lucky?" I echo his previous statement. Again, that smile as Firdaus patiently attempts to explain, making me suspect that he's probably no stranger to interviews about his circumstances.
"There are those who start experiencing this condition only when they become teenagers or adults. And because they've been living 'normal' lives and looking just like everyone else up to that point, the changes that creep up hit them really hard," begins Firdaus.
Adding, he tells me that they can't bear seeing how they look and in turn, become stressed and depressed. "They have it much harder than people like me," he continues, before musing: "I guess you can say I'm better off because I've already been living like this all this time."
Softly, he shares that he's had people looking at him strangely — and with much curiosity — all his life. "Most of them avoid coming into close contact with me when they see my condition. Some even tease me," he adds, matter-of-factly, tone calm. There's no bitterness, sadness, or anger.
He seems to be at peace with his fate. Confides Firdaus: "I'm used to this now. I guess in a way you can say that I have become immune to everything, having lived with this condition ever since I was young."
A LIFE LIKE NO OTHER
"What were your early years like," I ask, my curiosity getting the better of me, as I allow for his words to sink in.
He pauses before replying: "Back in school, I was teased but that was all. Some of my peers used to call me a frog because of how I looked. There was no serious bullying though. It never reached an extreme level, where people threw stones at me or anything. My teachers were supportive and understanding. I still found it easy to make friends."
Adding, he admits: "The worst I've experienced in my life is teasing. In other countries, NF1 sufferers may be bullied, harassed or beaten up. It's never gotten that bad here." As he relates this, I see a small smile appearing, hinting at relief or gratitude, or perhaps a bit of both.
Through MRDS, Firdaus gets to meet various people who live with rare disorders and conditions. They also have a support group for NF survivors. There are so many others who are much worse off than he is, Firdaus points out.
He tells of the sufferers of Neurofibromatosis Type II or NF2 as example, where the lesions are located inside of the body. Many NF2 survivors are unable to find full-time work and are in constant pain. Some are paralysed and have been rendered invalid, thereby completely dependent on others to care for them.
"My lesions are on the outside, and I can still live my life," he says, simply.
The 38-year-old bachelor tries to live a normal life — or as normal as it can get for someone like him. During the week, he takes public transport to his workplace located in the heart of the city. After leaving school, he was unemployed for about a year before landing a job at the National Library, his first ever job. He's still here working as an operations assistant.
On his way to work, he can never avoid the looks from strangers who board the same bus as he does. Some are daring enough to ask him what he suffers from, while others avoid sitting next to him once they set eyes on him.
"Sometimes I get offended and hurt by people's reactions but I choose not to dwell on it. I redha je (I just accept everything that has happened wholeheartedly)," confides Firdaus, an only son to a father who was a former civil servant, and whose mother was a homemaker. He had an older brother who sadly passed away in his mother's womb several years before he came along.
ALL IN THE MIND
His expression pensive, Firdaus says that many people still don't understand that this is a genetic disorder. There's no medication or treatment for it, and no cure. "If you meet a rare disorder survivor, there's no need to tease or ridicule that person,"
Continuing, he advises: "Just act normal, treat them like any other human being. Please don't ask why or how they have this disorder. And please don't say things like this condition is a curse or result of the sins of the previous generation."
According to Firdaus, there are people in the support group for NF1 survivors who have suicidal thoughts. And their families, instead of supporting them, call them names like pembawa sial, or bearers of bad luck. When your own family doesn't support you, it can be depressing.
Now that we're on the topic of mental health and depression, I ask him somewhat pointedly if he has ever considered suicide as a way out. "I've never thought of suicide," he answers firmly but gently, adding: "I've never reached that level. Besides, it's not allowed in Islam."
What about his plans for the future? Marriage, maybe, I pose shyly. "Belum jumpa jodoh, (I haven't met my match)," he replies calmly, sounding neither sorrowful or apologetic. Continuing, he shares: "I still have to manage this condition so there's no need to think about finding a match for myself yet."
Smiling gently, he confides that he's had a lot of people look at him and think that he's cool. "Well, overthinking can have a negative influence on your life. It can make you sick. It's better to stay positive and maintain a positive outlook," he adds, again quite matter-of-factly.
In the end, it's all down to one's attitude and mindset, believes Firdaus. Expression serious, he concludes: "It's not worth letting your emotions be negatively affected by the words and acts of others who are not educated or are just insensitive. Don't think so much about it. We need to take care of our own emotions first. Whatever life gives you, just redha."