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In joy and in coma

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These are moving stories of men and women who have sacrificed all pleasures to care for their disabled spouses for years. Ketan Tanna reports

Forty-three-year-old Megha Desai has stood by her 51-year-old husband Rasik’s bed for 11 years now. There is no fixed pattern to their life. Lights of their Andheri bungalow are switched on and off even in the middle of the night. Megha is used to being woken up by Rasik at all hours, sometimes for catherisation to empty his bladder (a catheter is thin, soft tube inserted into the body, which is needed to drain urine several times a day). Some other times, to dispose of the adult diapers that Rasik wears to pass his stools. The affluent Desais, who are into a large real estate business, could have easily kept nurses and ward boys permanently if they wanted, but Megha feels that they hamper privacy and lack personal touch.

Rasik was shot at in his office by unknown assailants on July 24, 1995. The bullet pierced his spinal cord, paralysing him chest down. Now the only functioning part of his limbs is his left hand.

Although Megha was shaken by the incident, she refused to give up on life. Her two kids were nine and 13 years old at that time. “I let Rasik cry as much as he wanted to. But I was determined that my family would not be shattered.” That she also had her husband’s unattended business to look after, besides very little support from in-laws did not frighten her enough.

“I love my husband and my children. There was never an option to give up on my life. I turned to god every day. My mother and my sister supported me to an extent. But I had to fight the battle myself to save my family,” says Megha.

Today the Desai family has sailed through its worst decade, and even managed to grow its business. The elder son is now married and the family goes out together to movies, malls, picnics and on long drives. Rasik, of course, has to be lifted by two persons to his car. Sometimes Megha faces caustic comments from total strangers like “oh, look at her. She is all decked up while her husband is in a wheelchair”. Megha ignores them and walks on, makeup intact.

While Megha bore two kids and lived an ideal married life for years till a bullet changed it forever, Meena Shah, now 32, was 18 and barely through with her marriage rites when tragedy struck. A month into her marriage, her husband Sanjay had to be rushed to the Bombay Hospital with severe stomach ache. He was diagnosed with colon cancer.

A colostomy, doctors said, was the only way out for Sanjay. Colostomy is a surgical procedure that brings the end of the large intestine through the abdominal wall. Stools moving through the intestine drain into a bag attached to the abdomen. For the past 15 years, Meena has been securing the drainage bag for stool and then washing it.

Life has been financially tough for her as Sanjay has always been in and out of hospitals. Sanjay would, in happier times, assist his brother in his electrical appliances shop. Today Meena survives on the money she gets from giving tuitions, although recently she was forced to take aid from the Cancer Patients Aid Association.

Meena is clear that she would stay with Sanjay as long as he is alive and only then would move on. “I love him and therefore I am with him.” When asked whether her husband would have put his life on hold were she to fall so seriously ill, she becomes silent. “It is not relevant. I did what I thought I should do.”

Interestingly, one can find women who choose to live with their disabled husbands for love or convention, but it is very hard to find too many men who feel any obligation to stick on. Ramesh Dhondiram Kumbhar, 42, is one such rare man, who is still with his 37-year-old wife, Hemlata, at their Santa Cruz hutment.

In 2002, 10 years into marriage, Hemlata started having trouble swallowing food. Doctors dignosed throat cancer and removed her voice box, which left a hole on Hemlata’s neck. Ramesh today communicates with his wife through signs and says he can read her lips. “I am her voice,” he says. The emaciated Hemlata is dependent on Cancer Patients Aid Association for her basic medicines and nutrition, as Ramesh, who used to wash cars earlier but is unemployed now, cannot support her. “God, in his wisdom, has put us through this test. I like my wife and I will care for her,” he says, his wife’s hollow face lighting up on hearing that.

Several couples exhibit great powers of endurance even as the medical expenses of long disabilities impoverish them and eat into their resources. But some of them, despite the love that burns in their heart, succumb to pragmatism.

Tarkeshwar Prasad Chandravanshi, who runs a tea stall in Patna, was once a shopkeeper. His wife Kanchan went into a coma while delivering their third child at a private nursing home. Tarkeshwar’s pleas for ‘mercy killing’ of his wife have time and again been rejected by courts. “She is better off dead than alive because living such a ‘life’ is no use to her.” TNN

Still born

Sometimes, families give up

For the slightly built, sallow skinned Aruna Shanbag, a day begins and ends on a metal bed at Mumbai’s KEM Hospital. She has been on it for 33 years.

On November 27, 1973, Aruna, a nurse of this very hospital, was cornered by a man, who tightened a leather leash around her neck, thereby cutting off the oxygen supply to her brain. He went on to brutally rape her.

Aruna was discovered the next morning by a ward boy. The damage had been done and it would be of little consolation for Aruna to know that her assailant was arrested, tried and later released. Since then, Aruna has been on the hospital bed, her body shrivelling up with the strain of breathing for so many years. Her family members, including her fiance, who was a doctor, visited her for years, but then eventually gave up. To the hospital’s credit, she is still taken care of, bathed and fed like a child.

Nanavati Hospital has a patient, who has spent 18 years staring blankly at the ceiling of the general ward. Things went tragically wrong for her in 1988, when during her child’s delivery, she suffered brain damage. Gamadevi never recovered and still does not speak or recognise anyone, including her son Vinay, who is now 18. Gamadevi’s husband, Ram Pal, visits his wife when he can. The Nanavati hospital staff also takes care of her on humanitarian grounds.

(Inputs by Dipak Mishra, Shailvee Sharda, Radha Sharma and Shreya Ray)

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