November 2015

“When I was buying shirts for my sons, I would get Mukesh one that cost ten rupees more than the one I bought his brother. I wanted him to know always that I loved him so much.”

Listening to stories at home and in my paid job is one of my true joys. A few weeks ago I was visiting one of our teams working to promote mental health and social inclusion in Bijnor district, a rural area in North India’s state of Uttar Pradesh. The team had told me about Mukesh’s mysterious death a few months earlier and I was keen to meet his parents and hear their story. Mukesh was the second son of Veeray Singh and Murthi Devi. When Mukesh had an episode of fever and illness at the age of 8 years, he had developed a number of problems. He’d started having frequent epileptic seizures and developed problems with school work. His teachers suggested he should just stay home. Then a few years later he also developed some strange behavioural problems and doctors told his parents that perhaps schizophrenia was adding to his problems of intellectual disability and epilepsy.

“But he really was quite a happy guy most of the time,” continued his dad, Veeray. “He would walk around the village and talk to all our neighbours. He liked to walk with their cows to graze outside the village. Other times he would go down to where the canal runs past our rice fields and would sit and watch things there. That’s where he spent a lot of time.”

It wasn’t easy to care for Mukesh. Veeray explained that they had spent so much money taking him to doctors, healers and hospitals to try to find a cure for his troubles. Although his seizures were controlled at times nothing had seemed to make much difference to improve his health.

Murthi served us milky chai and salty snacks.

“Our daughters married and left home and our older son is working. But Mukesh was with us all the time. He liked to eat channa dal and rice. That was his favourite. Even when he was quite unwell and agitated, like when he had a period of getting angry with our neighbours and wanting to throw things at them, we would try to make him his favourite foods. Twenty something years we cared for Mukesh.”

Veeray picked up the story:

“We had celebrated his 37th birthday a few days earlier. I noticed he had been very quiet and we had known something was wrong for a couple of days. He seemed to be getting very sleepy and then that evening he was sleeping so heavily that we could hardly rouse him. At midnight he sat up briefly and said to me: ‘Papa, let me sleep in peace and you also can sleep in peace’. A few hours later he died.”

Veeray broke down, sobbing.

“I cannot tell you how much I miss him. My neighbours tell me that it is a good thing no longer to have the burden of caring for Mukesh but they don’t understand how we feel. We wanted to care for him. We loved him. We miss him every day. He also knew that he was loved. He was always our child.”

“Now we cannot eat channa dal and rice without Mukesh. It makes us too sad” Murthi added softly.

I wiped away some tears too. Some caregiving is a heavy load, more often carried by women. But this day the grace and gift of Mukesh’s life, with his multiple pscyho-social disabilities, were celebrated and treasured by both his parents. And the deep love that Veeray and Murthi conveyed pointed me to the source of All Love.

Veeray explained that now, six months later, he has finished building a memorial shrine to Mukesh on their land beside the canal.

“We made this for Mukesh to be remembered — he was a saanta (saint) for us.”