By Kunal Sharma
Greetings…!!
I’m Kunal, residing in Mumbai and I work for Aviation Company at Mumbai Airport.
At first – may God have mercy on everyone with any form of disability.
Just on a personal note: I was born with a cleft lip - cleft palate. I have undergone more than 11 nasal surgeries. On behalf of the entire cleft community just to apprise you all - speaking clearly for us is challenging, that’s technically because the soft palate doesn't move well enough to prevent air from leaking out through the nose during speech. This can cause the voice to sound as if we’re speaking through the nose. If the teeth don't line up properly, a person may not be able to pronounce certain sounds/words too. The multiple scars on our lips show the battles we've fought...!
Surgery should happen soon as possible because doctors can see cleft lip and palate as soon as a baby is born, they can begin to evaluate the baby right away and start developing a treatment plan. It's very important for Parents & the child to confide in the surgeon.
Friends, family, and medical team can be a source of support. Talking to them about how you're doing feels better. There is so much to learn from everybody.
If I would want to share my experiences – to be honest the “cleft” factor is not too serious but much other problems leading BECAUSE of it is of main concern.
Kids born with cleft lip palate may also have frequent ear infections. That's because air and fluid can't pass normally through the tubes that connect the back of the throat with the middle ear. This means fluid and germs can become trapped behind the eardrums and cause infection, just leading to a surgery to put tubes in ears to help the “fluid / pus” drain properly. In some cases, people who have cleft palate may have complete hearing loss of either ear because of repeated infections and fluid behind the eardrums. Then, dental problems, such as cavities and missing or malformed teeth, are common in people born with cleft lip and palate. However, people with a complete cleft lip and palate will need several surgeries to repair the cleft. These include cleft lip repair, cleft palate repair, and a bone graft to the upper jaw to close the bone gap in the gum area. In some cases, further surgery may be needed on the palate or in the throat to improve speech. People with cleft lip or palate may spend a lot of time at the dentist and orthodontist. Hearing tests to check for hearing problems and speech therapy to improve speech skills and patterns are often part of treatment, too.
I've been through much worse & painful surgeries at regular intervals throughout my life right away since birth. It was NEVER easy growing up and even as an adult there're still people who throw insults your way - The embarrassing perks of "looking different" & being constantly stared at !! But I eventually realised that when people stare at you and talk or they don’t stare but you can tell they want to, just remember that you know who you are and they don’t…
People with cleft lip and palate have had to cope with bullying or teasing as a routine in their lives during childhood & school/college, which was quite a gut-wrenching feeling. Only I know how I've spent my life throughout. Whilst in school, I had only foes but not a single friend to understand me. People should laugh in front of me after looking at me. I should look so funny after my nasal surgeries with swollen face features that throughout my life I became a source of entertainment & laughter to all the teachers & my other classmates, nobody could understand me. All should tease me, bully me, and imitate/mimic me. It’s said that school-life lasts the best memories, but for me, it never did.
For many, this can injure self-esteem. Others find that surviving bullying gives them an inner strength and resourcefulness that other teens may not have developed. We're just going to have to make our peace with that!
Learning to take control over how much one allows physical appearance to affect their life is a skill that people with cleft lip and palate usually develop way before their peers. Friends, family, co-workers and medical team can be a source of support. However, it's important to remember that kids with cleft lip or palate can and do grow up to be healthy, happy adults.
And dealing with the physical side of cleft palate can be difficult enough. But, there's also the emotional side: Because cleft lip and palate are something someone is born with and has no control over, it can seem unfair. And because appearance can become more of a focal point, people with cleft lip and palate worry about how it might affect their social and emotional lives..!!
When I was at the tender age between teen & adulthood, I used to just aimlessly drift from one world to another, as if, bereft a cause in my life, right in the cusp of something. And while I was just slaloming between the pitfalls in search for a job - I developed stuttering. I used to stutter like a Porky Pig. Sometimes I should stutter in short bursts - unrecognizable to any language - leaving me gasping for breath. Other times I stutter myself into silence. Standing with my mouth wide open like a possessed vulture, I try in vain to conjure sound. I’ve stuttered for as long as I can remember. I have experienced challenges in day-to-day life: ordering food in restaurants, making phone calls, or introducing myself to a group of people and so on… I’m told stuttering is a mysterious and powerful force that blocks the path from brain to mouth. Muscles simply freeze, and potential words are left in the brain, sitting in a stuffy waiting room until they are ushered to the mouth to form words. For most of my life, I haven’t let stuttering define me. My recurring nightmares about failure in the workplace gave way to long talks on cell phones with good friends, perfect strangers, Managers’ or co-workers. Nothing was better than this, not even speeches in front of thousands, to have the ability to communicate without hand gestures or someone else finishing my sentences.
As an introvert & recluse I know what it feels to be on the edge of the breaking point. That moment when you get tired of trying and just want to give up on everything, I know exactly how it feels. Sometimes what you feel inside is so hard to explain. With lack of social skills, self-doubts & deep-seated feeling of rejection from the world I should spend more time in my own head than anywhere else.
My greatest fear is not what others think of me because of my disability but the limitations in life that are a result of stuttering.
When I was accomplishing my desired job for a career - I couldn’t let my speech get in the way of any of those opportunities.
Time to tame the Porky Pig! (pun intended) ☺
I often shy away from sharing this epistle with anyone: - But, once while working on the Airside in the Airport, I was handed-over an RT (Radio Transmitter). The little black voice box was everything I had always feared and more. This was a device that would project my voice to a network of people with high stress levels and volatile tempers.
It was a real life test of my ability to do what everyone around me takes for granted: the ability to speak “Audible”.
My failure to participate in this essential set of communication – a fury of fast talking jargon - would mean, maybe my immediate dismissal from that job. For me, working with the RT meant working entire day complying with every order enunciated into the “walkie-talkie” during that gruelling expanse of time. More importantly it meant dealing with everything that happens on the Air-side.
So when that long dreaded moment came, when I heard my name on the handset, I felt my heart drop. But, suddenly - a strange sensation overwhelmed me. A kind of dismal calm dominated my system. Wide-eyed and filled with the potent combination of fear and sombre understanding, I raised the walkie-talkie’ near to my mouth and somehow just managed to acknowledge the message.
I also got the opportunity to work as a Lost & Found Custodian.
Accommodating to all the Passenger queries and sometimes even their tempers...!! Verbally talking on phone to n number of Passengers regarding their “lost & found” queries, and when needed - empathising with them, the good wishes of total strangers, the smile on their faces when they heard from me that their XYZ valuable was found and is safe under our custody, I used to feel so blessed...!!
After successfully completing a decade at my workplace , my current job responsibilities gives me the opportunity to endlessly speak to multiple Vendors / Colleagues from multiple locations across India , daily dealing with them over the Phone-calls, which otherwise I used to avoid and feel very uncomfortable with, initially.
And since I have this unintentional shy idiosyncrasy and I might not be a great orator - I thank my folks to identify and constantly encourage & motivate me and give me a chance to exhibit and unveil my knack for rhetoric writings’ just like how I’m doing this now. I like such forums to express my emotional vulnerabilities without fear of reprisal, exclusion or stigma. Being a victim of complexity all my life, it took me lot of courage, practise & grit to face people, come out of my shell. There comes a time when patience & tenacity begins to ebb.
The confidence to introspect & improve my thoughts out of negativity, overcoming multiple obstacles, overpowering all the fears, transforming disability into ability… Today here I am -- Working for arguably one of the finest Airlines in the Country! My family, my friends & my co-worker’s acceptance towards me at the workplace, the kind of solace showered upon me by each one of them, their beliefs, their confidence and their expectations is the only thing that keeps me going…
Many people do things simply out of kindness in their heart and do not realize they’re inspiring others around them, if friends are the family we chose then colleagues are the family that steps forward.
Will make sure to carry on this baton further of motivating/inspiring other people around me as well. I firmly believe to be the person who offers comfort. Whenever I see an opportunity to help someone, I do it. For me, being real is more attractive than being perfect.
Life’s too uncertain and I’ve learned it the hard way, we take life for granted and like how precarious it is… nevertheless, the peace I have now is worth everything I lost.
I glean the value of expressing gratitude and the power of appreciation to one and all in my Life...!!
By Kunal Sharma
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