Two new books in English offer vivid first-person accounts of coping with leprosy.
|One in Hope & Doctrine
IDEA India Publication, supported by Sasakawa Memorial Health Foundation
|Thorn: An autobiography of the devil of social stigma
Meenal Publishing House, supported by Sasakawa Memorial Health Foundation
The precociously clever son of a school headmaster, M.S. Rajagopalan was set on a high-flying career in banking when a diagnosis of leprosy at the age of 25 "hit me as a bolt from the blue." At that moment, he writes in One in Hope & Doctrine, he saw "the crumbling of all the castles" he had built in his mind.
Forced to quit the bank in Calcutta where he was a trainee, he moved to the Central Leprosy Teaching & Research Institute in Chengalpattu, Tamil Nadu, for treatment. Accompanied by his father on the journey, he was refused entry to a hotel for breakfast because he was a "leper." The episode came as a rude awakening as it dawned on Rajagopalan that he now had a new identity. But it was also the occasion for some paternal advice that he never forgot: "Remember that you are up against a very cruel ordeal. It is going to be a long, drawn out battle and you better be prepared, both mentally and physically."
On completing his treatment and being declared free of the disease, he returned to the family home in Calcutta, only to find he was an unwelcome presence. While he had been gone, one of his brothers had married and his new sister-in-law didn't want a person affected by leprosy in the house. Moving to Madras, he found a job through a friend as an accountant on a building project, only to lose it after a few days when workers refused to have anything to do with him. A second job ended the same way as the wasted muscles and clawed fingers on his right hand betrayed him once more. His sympathetic ex-employer paid for an operation on his hand, but Rajagopalan remained without work and without prospects.
Refusing to contemplate begging, he decided to commit suicide, but not before seeing his parents one last time. En route, he happened to glimpse a signboard from the train window that would set him on the path to employment, marriage and fatherhood. It was a life-changing moment.
Rajagopalan is a born storyteller. His autobiography is filled with anecdotes and insights that illuminate his tale. from his poignant recollection of being helped by another social outcast. a sex worker. after he suffered a nasty fall to his account of being pursued in marriage by no less than five staff nurses while a patient at a mission hospital.
He emerges as a man of dignity, principle and determination. As the distinguished orthopedic surgeon H. Srinivasan writes about the author, he demonstrates "the importance of preservation of one's self-esteem against all odds and not allowing self-pity and self-loathing, which many leprosy patients suffer from, to smother one's efforts to lead a normal and full life and suffocate one's hopes." His book deserves a wide audience.
|Yohei Sasakawa (left) greets greets author Muthu Meenal in Chennai as actor Kamal Haasan looks on.|
Muthu Meenal was born in a village in Tamil Nadu and diagnosed with leprosy at the age of nine. Thorn is the story of her childhood and coming of age, culminating in her marriage.
Once it became apparent that their daughter had leprosy, Muthu's parents initially put their faith in a medicinal stew of snake meat, hoping it would clear the rash on her face. But when she suffered a leg injury that refused to heal, she was hospitalized. and so began several years of institutionalized living away from her family. Transferred to the Sacred Heart Hospital in Kumbakonam, she was able to resume her schooling. much to her joy. and had an operation to repair her leg. Finally declared free of the disease after six years, she writes, "I felt as if I had been released from a prison." Translated from the Tamil by Shubashree Desikan, Thorn is not only Muthu's account of how she coped with her diagnosis and treatment, but also a description of the rural milieu from which she emerged, related in a direct and unaffected style. She is particularly attuned to the suffering of women. the traumatized sex workers she sees while waiting at a bus stop one day, the two friends who commit suicide over thwarted loves, the mistress whose jealous lover savagely attacks her over imagined infidelities.
"I never expected myself to be a writer," Muthu tells us at the outset. But in laying down "my melancholy, sorrowfulness, and gratitude," she has certainly succeeded.