A Trophy Life

21-year-old Sharan Anil, a patient of muscular dystrophy, says he’s learnt object lessons on “overcoming circumstances” — proving he’s not a victim of any

Not many youngsters his age can talk about muscular dystrophy as extensively as 21-year-old Sharan Anil can. Being diagnosed with a progressive muscular disorder at a very young age can do that to you though — you want to know all you can about the disease that is waging war on you from within, weakening your muscles so that soon it will be impossible to get around without a wheelchair.

The Dubai resident remembers everything about the day that everything changed — the doctor’s name, his mother’s stunned reaction, the emotional ride back home from the hospital. It was 2001 and the test results had just come back, confirming that Sharan had Becker’s muscular dystrophy. “We didn’t know what muscular dystrophy was when the doctor told us about it... It was so new to us… Mom started crying in the taxi on the way back. I didn’t know what to say to her or even if I said anything whether it would be the right thing to say. I was just nine years old.”

The symptoms had begun a few years before: inexplicable instances of losing balance, falling over and general clumsiness. It was after a particularly bad fall that his mother was convinced something was wrong. Sharan didn’t expect what was coming but the Pune native soon realised he’d have to accept it. There was no cure for his condition.

The progression, though inevitable, would thankfully not be as severe as in those with Duchenne’s MD — for whom the expected lifespan was about 35, 
because by then the chest muscles can no longer function. Sharan knew the only way to prevent his own muscles from going to absolute waste was through physiotherapy so he works at it: six days a week, two hours a day.

He continued his education at Emirates English Speaking School, all the way till Grade 12 — though it was hardly a breeze. “When I was in school, I was very shy and wasn’t able to talk about myself,” says Sharan, who developed a stammer during this time. “It was hard for me to accept the situation because I was the only one ‘different’ from the other kids at school. I needed someone to walk me to class everyday... It was embarrassing when I fell as I always landed on my face or my back and the few who stopped 
to help always struggled to lift me up because they didn’t know how to. In the last few years, I found I couldn’t climb the bus steps anymore.”

WORLD OF COLOUR: Art gives Sharan purpose

After the summer break of his final year in 2010, Sharan’s condition deteriorated to a point where he was wheelchair-bound and his family decided it would be better if he dropped out of school. It was on the request of the principal and vice-principal — who visited the family at home a couple of months later — that the Science stream student decided to attempt completing the year. He almost made it too, but lost out on the final math re-test by a few marks. “I didn’t go back to school after that, not even for my mark sheet. There was a point, immediately after, when I felt like an utter failure.”

But it was during those few months at home that Sharan discovered a new passion: art. “I haven’t looked back since.” Over the next few years, the avid painter — who attends Mawaheb from Beautiful People, an art studio for adults with special needs, twice a week — focused on improving his technique, and is now getting regular requests for sales. The vividly colourful canvasses cannot fail to catch the eye, especially ones like his unmistakable impression of The Joker from The Dark Knight.

Technology continues to make everyone’s lives easier — but for Sharan, it’s literally given him a new lease of life. “I had a lot of frustration that I’d bottle up when I was younger; it made me very negative and angry inside. It wasn’t a good time,” he smiles. “But I’m here now — and doing much better.” By ‘now’, he is referring mostly to the last one year, during which he got an electronic wheelchair, bed and — recently — a mobility van that allows him to access the vehicle without any assistance.

“I feel my life has become so much better after getting these because they give me a level of independence I didn’t have before,” he says. “In fact, part of my earlier frustration was because I had to depend so much on others for my needs. With the electronic wheelchair, I can get out on my own, take the metro, hit the malls, meet my friends…”

When he’s not painting wild stallions or sunsets or undergoing therapy, the Barcelona, Chelsea and AC Milan fan loves keeping up with the world of 
football — even though he’s never had the chance to play the game himself. Recently, Sharan’s dad opened a restaurant in his name as well so the youngster heads down there a couple of times a week “just to supervise and speak to the staff”. He also hopes to be a professional artist, graphic designer and motivational speaker someday.

BETTER LIFE: The family bought a mobility van recently so Sharan could access the vehicle independently

Sometimes, he admits, he wishes things were different. “But that feeling is not as strong as it used to be. Now I just tell myself to be grateful… I have no reg-rets,” he states, echoing the ‘No Regrets’ tattoo on his left forearm. “I’m not afraid of being a muscular dystrophy patient anymore because it’s not the physical disability that brings you down — it’s the attitude you have towards it. I didn’t want my life to be ruled by disability so I learnt to overcome my circumstances.”

For everything else, he’s willing to bank on faith. “Maybe it’s because of how far I’ve come but I’m pretty sure I’ll walk again someday. I don’t know how — just that I will.”

(Do you know anyone who refuses to let his/her disability get in the way of their routines and dreams? Write to karen@khaleejtimes.com)