Manish Kumar was 11 when his teacher asked him to stop attending school in Dharampur, his hometown near Kasauli in Himachal Pradesh. “She thought I was a source of distraction to other students,” says Kumar, now 19.
It was not anything Kumar did that made him a problem student. It was the way he looked.
Nineteen-year-old school dropout Manish Kumar is a real-life Two-Face, DC Comics’ fictional Gotham City’s district attorney-turned-Batman adversary. Neurofibromatosis, a genetic disorder that causes tumours growing on the nerve, has disfigured half his face, making his left profile twisted beyond recognition. “My face morphed, but I had no pain,” he recalls.
Quite like David Leach’s The Elephant Man, a film about London’s Victorian freakshow attraction Joseph Merrick — a man so deformed by a similar disorder called the Proteus syndrome that he wore a hood to hide is face — Kumar lost out on schooling because of his disfigurement. But since then, he’s found support from his community. “People don’t laugh or call me names, but just stop to stare,” says Kumar, whose condition started suddenly when he was three. Within a year, his left eyelid had sealed shut and he looked like a caricature of his old self.
After 15 years, reconstructive surgery has made it possible for him to finally open his left eyelid. His life changed less at a cricket tournament at Pinegrove School in Dharampur in May this year. Pinegrove’s headmaster AJ Singh had taken Kumar under his wing, supporting him by giving him odd jobs and a place to spend the day where he was not treated like an oddity.
“I saw Kumar running around the school, where he worked as a helper. His energy and optimism amazed me, and I thought, I must do whatever I can to help this boy,” says British High Commission’s Hitesh Patel, who was in Kumar’s hometown for the cricket tournament. Within a month, he had whisked Kumar to Delhi’s Max Super-Speciality Hospital, where he was operated upon on in June. Patel paid for surgery, which cost R2 lakh. “Kumar is a textbook example of neurofibromatosis, a condition where tumours grow in the supporting cells that make up the nerve and the myelin sheath (the thin, protective membrane that envelops the nerves). There is no cure for it, only cosmetic correction,” says Dr Sunil Choudhary, Director, Max Institute of Aesthetic and Reconstructive Surgery, who did the surgery with Dr Raghav Mantri and Dr Prateek Arora.
A brand new face
The team started at the top, beginning with removing excess tissue from the scalp. Next came the reduction of the eyebrows, which were almost three times the normal size. “After anchoring the eyebrows to the bone, we started the eye surgery, which involved cutting out the outer part of the eye to reduce its size and anchoring it to the bone socket,” says Choudhary, who has done four such surgeries in the past. Then the team trimmed the midface, the nose and the lips. “We used the ultrapulse laser to reduce blood loss dramatically,” says Choudhary.
“The tissues had grown so much that they had dissociated from the sheath. What was exciting for us surgically was reattaching the facial mass to the bony skeleton, which we did using bone anchors conventionally used in hand reconstructions,” he adds.
Kumar is home in Dharampur now, and will be back in 10 days to get his stitches removed and get an artificial eye to replace the one he lost when the tumours sealed his eyelid shut. When he gets this face back — the swelling will reduce by another 30-40% within a week — Patel wants to go back to school and catch up with his lost childhood. He’s still not sure what he wants to do after graduation. “I haven’t thought about it. I first have to get used to my new life,” he says.