Diary | 'A Flicker Of Hope': A Son's Tale Of Growing Up With Cerebral Palsy

A Cerebral Son

Aditya Sinha suffers from cerebral palsy

Papa before Aditya

Papa grew up playing cricket and cycling in Patna. Apart from his craze for cricket and sports news, he loved languages. But his stars were a bit up and down, said the palmist, a Pandit.

Troubles at home and his experiments with college life meant he got married late in life, at the ripe age of 38. Exactly as a local Pandit had predicted. Marriage was soon followed by “good news”. His wife filled his ears with delight as she announced her pregnancy on Mother’s Day, 2005. Papa must have been the happiest person in Patna that day.

Sonrise

The first trimester was tough, so was the second, and Mamma couldn’t complete the third trimester. I was born prematurely at the Tripolia Hospital, after a complicated process. Nevertheless, the feeble cry outside the labour room at the hospital on December 14, 2005, was a special one for the parents.

Sweets followed more sweets, as Papa celebrated the arrival of his first child. He hadn’t known such happiness in life before. It was all such a new experience for him.

Days, weeks and months rolled by. Grandpa Pritam Kumar Sinha was delirious carrying his tiny grandson in his arms all over the house. Like Papa, he too hadn’t experienced such feeling ever before.

But soon they realized I wasn’t growing on time. Papa was still somewhat oblivious of the stark reality about to be revealed some months later. In the meanwhile, he got a nice job with an NGO in New Delhi, exactly as Pundit Ji had foretold—at the age of 40. Soon, he was in Sarvapriya Vihar of New Delhi, working at Digital Empowerment Foundation.

His benevolent boss liked him a lot. Papa felt confident enough in the job to bring his wife and son over to New Delhi. Patna’s Sinha family quietly relocated to Delhi. The one-room set near Nizamuddin Station was where the main action was slated to take place.

One day, a colleague visited the house with her beau. She saw something amiss in me and told Papa to consult a bone specialist. So, Papa and Mamma went to a local orthopaedic surgeon, who referred them to the children’s wing at AIIMS.

Disaster

There, on that fateful day in 2007, two doctors on OPD duty pronounced a life-changing verdict for the Sinha family. I had cerebral palsy.

The news took days and months to sink in. Initially, Papa couldn’t believe the doctors’ diagnosis. His sports-loving psyche wasn’t conditioned to see a differently-abled son. Anyway, somehow, he started gathering inner courage to consult one doctor after another across Delhi.

The ADI Centre at Green Park pronounced another cruel verdict. My leg bones were permanently bent. I wasn’t even two years of age then. A famous diagnostic centre at Vasant Vihar also established that I needed special school education and constant treatment. The school was out of reach for the middle-class Sinha family. Finally, the Special Institute at Akshay Pratishthan in Vasant Kunj took me under its wings.

A Kind Soul

The therapist there, Dr. Nazia Ali, started a new regime for me. Her verdicts and patience were truly amazing. She was empathetic and kind-hearted. One day, she told Papa I’d walk by the age of 12 or 13.

Papa was delirious hearing those words, though he couldn’t be sure I could walk even after the 7-8 years of the deadline left. But there was at least a flicker of hope in his heart. After all, he had seen predictions come true in his own life.

Meanwhile, years of real struggle had begun. Papa bought a wheelchair from a big Green Park medicine shop. That day, after reaching our house in far-flung Ayanagar, when he had carried the wheelchair to his wife Ragini, Mamma’s eyes became visibly moist. Ostensibly, she cried more than Papa, but actually, their eyes were just getting conditioned to keep welling up over the next few years.

My slow progress was a real pain for them. One day, I wanted to jump on the bed, but my legs wouldn’t let me do what every other child does. Papa still remembers my frustration. That Sunday, Papa and Mamma cried, once again.

Life on Wheels

By then, strolls on the wheelchair across the neighbourhood had become regular. Everybody in the Jaat-Gurjar dominated locality of Ayanagar had become familiar with the boy on the wheelchair, and his Papa. School-going children stared at wheelchair-bound me with strange eyes as if asking how one of their own could be so different.

But like Papa, I too liked cricket. Even when on all fours, I started playing cricket in the verandah with Papa on Sundays. The recovery had begun. Soon, walking and strolls on the wheelchair became regularised.

Meanwhile, schooling at Akshay Pratishthan had begun in earnest. Years passed by in the polluted Delhi air, which encouraged me to develop an environmentally-conscious mind. Papa also introduced me to BBC World programmes fairly early in life. We’d listen to Mike Embley, Adnan Nawaz, Leso Diseko and other anchors read the news.

Papa, who goes by the pseudonym of @BihariBritish on social media, owes his command over English to the BBC World Service radio and BBC TV news, apart from cricket commentary.

Small Steps

Anyway, fate had a twist in store. Papa lost his NGO job in 2016. He did get a six-month contract at IAMAI, but now, past 50, he couldn’t see himself surviving in Delhi’s private sector any longer. So, at the end of 2017, he decided to relocate from Delhi for good, on the advice of many friends. He also visited the Sai Baba’s shrine at Shirdi, following the advice of a Pune friend, where he prayed for his son.

I was 12 then. And Dr. Nazia’s words were about to come true. When Papa returned to Patna, I was walking. He couldn’t believe his eyes. Faith in the gods had been rekindled in his heart. Soon, I joined a Patna school and Papa another private office.

My mental and physical progress was more visible by then. Papa rented a one-room house at Bajrangpuri in Patna for our family. The four-storey building has an open access terrace. Rooftop cricket started. I started to grow physically, aided by all the playing and the bubbling hormones.

Then, school education came to a halt for two years, because of the pandemic. Sitting at home alone for long hours during those anxious months made me more determined. Finally, fed up sitting at home, I requested Papa to get me readmitted to school. For the past two months, I’m again happily attended school. Papa is just happy to see me happy.

I celebrated my 16th birthday on December 14, 2021. At 55, Papa feels like a teenager in my company. We make a happy duo. Nobody knows what the future might hold, but we are ready to face the present in this journey called life.