One of India’s first MS patients’ wife puts disease under scanner | India News – Times of India

Why can’t you be more careful?” she screamed when the husband-who had broken many plates-dropped their three-month-old baby boy on the floor. “Are you jealous of him?”
That angry day was among many that built up to Sheela Chitnis co-creating the Multiple Sclerosis Society of India (MSSI) whose first four patients included her husband, Mukund Chitnis. Right now, even as the 1985-born NGO prepares for Multiple Sclerosis Day on May 30, the co-founder-who turned 81 last week-lists for us the heavy words she learnt during that foggy time before brain scans.
Vertigo‘, ‘incontinence’, ‘advocacy’ were among the terms that the first 20 years of marriage taught Marathi-medium-honed Sheela. She was 20 and her husband, 29, when they tied the knot in 1963. Mukund was a “handsome, highly qualified” textile chemist who had studied in Bradford. “He looked a picture of health,” says Sheela, recalling only a chipped front tooth which he said was the result of a fall in Europe.
Things looked fine until the couple moved to Calcutta where he was working. Sheela noticed that he could not help her around the house “without being clumsy”. She would pick up pieces of the plates that he dropped. Then, one day, their infant slipped from his arms. “I was angry and there was no one I could confide in,” recalls Sheela.
Quarrelling became the couple’s only dialect. Then, in 1967, Mukund spent three weeks in a hospital bed. The family had moved to Benares by then as Mukund had been promoted to the post of assistant director at Weavers Service Centre, All India Handloom Board. No doctor could tell exactly what was wrong. After recovery, there were times when Mukund would drop his pants, urinate on the floor and leave. Later, at work, he was demoted.
“We decided to return to Bombay,” says Sheela, whose husband found a job in Shahad near Kalyan, a 90-minute train journey from their Dadar home. Soon, old problems resurfaced. The sight of an approaching crowd would make him giddy. Mukund would also fall frequently inside crowded trains. Colleagues would drop him home when he fell onto platforms. Vicious one minute, gentle the next, his moods ebbed and flowed.
She still gets palpitations each time she thinks about the time he was crossing the railway tracks at Wadala with their son, Sandeep, who was three years old. “I was talking to someone on the platform when I heard a train coming and saw that my husband had frozen mid-way on the same track. My son had crossed by the time I ran towards my husband and pulled him out in the nick of time,” Sheela says, smiling.
There were no MRI machines in India in 1977 when the octogenarian first heard the words ‘Multiple Sclerosis’. It had been six months since Mukund lost his ability to walk when Sheela had taken him to the renowned neurologist Dr NH Wadia who told her about the “rare disease in India which was quite common abroad”.
Shattered, she enrolled herself in the British Council Library where science books finally demystified her husband. She realised that a scar tissue had formed over myelin, the fatty substance that covers nerves the way insulation covers electric wires. This prevented signals from his brain from reaching his limbs.
“I requested his superiors to transfer him to a branch near our home. They flatly refused. If he could not travel to the factory then he should resign, we were told,” recalls Sheela, who found a vent for her pent-up feelings in social worker Rehmut Fazelbhoy whom she met in 1984. “She convinced my husband’s employers about the need for his transfer to a nearby branch,” says Sheela. “Within a week, the orders were passed.”
With other collaborators, Fazelbhoy and Sheela formed MSSI that now helps 600 patients in Mumbai. Today, 28 years since her husband’s passing, MRIs and drugs are available in India. With early detection, patients can have a better quality of life. But even though it is classified as one of 21 disabilities, there are many impediments to getting the certificate, says Sheela who has counselled mothers-in-law who tend to think their MS-stricken daughter-in-law is shirking responsibilities and patients who do not disclose their condition to their employers for fear of losing their jobs.
“The biggest challenge is that it is invisible,” says Sheela, explaining why she revisits the years of her marriage that she wants to forget. “Anything for MS.”

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