All

❮

❯

“Every day I play Ludo and I wait for my father to come home with my favourite chocolates”

How many people in India would be able to afford the full extent of treatment needed for Cerebral Palsy (CP)? Certainly not a tourist guide such as Satyajit Mondal from Havelock Island in the Andaman and Nicobar archipelago.
 
A basic online search for the cost of treating CP (remember this is lifelong) would give you the eye-popping figure of over a million dollars. Besides physio and speech therapy, not to mention assistive aids and devices, there is a raft of daily medicines meant to calm the brain, prevent seizures (‘fits’), and relax the muscles to reduce uncontrollable movements. Satyajit and his wife Sangita, like most couples in India who have children with CP, follow the ‘therapy when available, medicines when affordable’ model. Assisted by their extended family, they do the best they can for their 12-year-old son Sumith.
 
Sangita wasn’t unduly perturbed on seeing the infant perpetually holding his hands clenched into fists. She started to have doubts when he couldn’t crawl but her mother-in-law Maya Rani said some kids take time. The baby once had a seizure that lasted 30 minutes. When he was unable to sit up at age one, the couple sought a medical check-up. “The doctors here at Havelock gave us medicines for six months and then they said, go to the doctors at Port Blair,” Sangita recalls. “When we went there, they said why didn’t you come earlier?”
 
The couple consulted several doctors in Port Blair in the hope of a cure. Sangita ensured that Sumith got his massages and physio exercises twice a day, but he showed little improvement. They decided to take him to the Mata Amritanandamayi Math in Kerala. “My father-in-law sold land to pay for our travel to Kerala” says Sangita. They stayed there for almost two months during which Sumith received massages, exercises and medicines throughout the day. They were asked to return after three months and choose which to focus on: hands or legs. Hands, they said, hoping it would help him manage his daily activities better.
 
When they returned from the second round of treatment they scrupulously followed the massage-exercise-medicine regimen at home. Sangita became pregnant. The doctor advised her not to lift heavy weights in the first few months. “But how was that possible? I had to carry Sumith daily and help him with his exercises, pressing down hard on his stiff body,” Sangita recalls. “In my third month I had a miscarriage.”
 
Six months later she was pregnant again. This time she was advised complete bed rest. Sumith’s physiotherapy came to a halt. After Shiva was born, Sangita got busy with childcare and could not focus on Sumith’s exercises for some years, although he was always encouraged to “keep moving, try to move your body”. His speech is indistinct: “Only we can understand him”, says Sangita. “He tries to call Shivu and manages to say ‘bhaaii’ (bro-o-the-e-r).”
 
Shiva is four now, and Sangita restarted Sumith’s regimen three months ago. She says they could not have survived without the unfailing support of her in-laws. The houses of Satyajit’s parents and two brothers are all nearby and adjacent to one another. “Everybody takes care of everybody else,” Sangita says. “My in-laws are not rich but they have backed us to the maximum extent. They told us, you just take care of Sumith and we will take care of you. Shivu goes to school with his dad and when I go to pick him up my father-in-law comes home to look after Sumith. If I am too busy to pick him up, someone else in the family will.”
 
Sumith is able to lift light objects with his left hand. He loves to play with Shiva when he comes home from tuition. There’s a tricycle he propels with his elbows since he can’t pedal. He uses the phone and also his digital tablet on which he manages to write by gripping the stylus with his mouth. When Sangita coaches Shiva, Sumith too sits beside her and tries to learn.
 
Sumith has a self-imposed daily routine he rigidly sticks to. He inevitably wakes up precisely at 6.30 a.m. and Sangita has to brush his teeth and change his clothes immediately. He even has a fixed time for going to the toilet! He loves [the board game] Ludo and insists on playing it with his mother every day. Lunch is at 3 p.m. sharp. His TV watching schedule is set in stone: Tom and Jerry cartoon in the morning, Tarak Mehta ka Ulta Chasma after lunch.
 
Satyajit takes the ferry to Elephant Beach for work. “Every day Sumith expects me to bring something home for him,” he says. “He loves chocolate the most.” He adds: “If only he gets better, all our dreams would be fulfilled.”