Can a sole human being bear so much trial and tribulation but keep striving against all odds to provide the best care possible to a loved one without abandoning her? Is life fair or plain cruel for some of us? Why, oh why?  It is, however, not 35-year-old R.P.D.R. Kumara who questions. It is what [...]

The Sunday Times Sri Lanka

‘She ain’t heavy she’s my wife’

R.P.D.R. Kumara whose wife suffers from a rare autoimmune disorder makes a plea

Kumara carries his wife to the main road. Inset: Sriyani

Can a sole human being bear so much trial and tribulation but keep striving against all odds to provide the best care possible to a loved one without abandoning her? Is life fair or plain cruel for some of us?

Why, oh why?  It is, however, not 35-year-old R.P.D.R. Kumara who questions. It is what crosses my mind as he sits across my desk at the Sunday Times with a file full of medical reports spread out before him, relating a saga of illness and hardship that has dogged him throughout his life.

Neatly clad in white trouser and white shirt, it is on a rainy day that he comes to the Sunday Times, seeking support to garner public help to ease a little of his family’s burden.

Whoever passes him on the street would not be able to imagine the “road to work” that he takes especially on a wet day.

An office-aide at the Planters’ Association in Colombo 4, he leaves home early, having woken up at the crack of dawn, gulping down a cup of plain tea and washing and feeding his wife, O.P.M. Sriyani Kusumalatha and cooking a scrap-meal for his son.

Home is at Godawela in Danowita, about eight kilometres from Warakapola. There is a 1½-km motorcycle ride through mud to Weweldeniya which he undertakes by rolling up his white trousers and carrying his shoes and socks wrapped up, wearing only slippers, then a 6½-km bus-ride to Mirigama and finally a train-ride from there to Bambalapitiya.

There is a tinge of permanent sorrow in his eyes and on and off he is forced to halt his tale, as his face crumples and his lips begin to quiver, with tears which threaten to spill down being brushed away in embarrassment.

He pulls out photographs of his beloved wife, struck down by a rare incurable disease — Mixed Connective Tissue Disease (MCTD). While its cause is not known, MCTD is an autoimmune disorder in which the person’s own immune system turns against that person.

It was not always like this though – there have been fleeting moments of happiness.

Kumara’s own childhood had not been carefree. His parents had built a tiny home on 40 perches on a remote and rocky hill in Godawela, accessed by climbing a small hill from the road, going across a wel-yaya (paddyfields) and then climbing the rocky outcrop.

The first blow came when his father died of a heart attack. His mother worked as a labourer to feed and school her two children making them study up to the Ordinary Level.

Life changed thereafter with Kumara securing employment as a sales representative at a private firm where he met his pretty wife-to-be, Sriyani.

Marriage brought a brief spell of happiness and fulfilment came with the birth of their son, Dasun, now a very dependable 12-year-old. “Sriyani was ‘hari kadisarai’ (very energetic),” says Kumara who by that time had changed jobs and was at the Planters’ Association.

Around the corner though, fate was ready to strike a second and more severe blow. What started off as a simple allergy in 2011 saw them doing the rounds of doctors as well as hospitals, with Sriyani swallowing tablets but managing the house-work.

There was no recovery in sight for Sriyani – only slow but sure deterioration leaving her paralysed, unable to walk or talk, dependent on her husband, son and mother-in-law.

The tears are not far away as Kumara says that Sriyani’s eyes are not balanced, her left eye does not work, neither does her left hand. The fingertips are okay but she cannot hold anything. All her toes are bent forward.

Desperate: Kumara at the Sunday Times office

“Her mind is like that of a ‘nomeru daruvek’ (premature baby).”

Regular visits to hospital for Sriyani are a must but there is no pathway leading to their home and as such getting a three-wheeler is out of the question.

So Kumara carries his wife about one km to the roadway, along the kudello-infested muddy land. A task made doubly difficult because he too had been a victim in a road accident sometime back.

“I can’t dump her in a home. I love her dearly,” he says, adding that she recognises him and though she cannot speak her eyes are full of gratitude.

A house with easy accessKumara is yearning to buy a small block of land, 9.5 perches with a basic house on it, in Mallehewa, Pasyala, so that he could send Dasun to school and also be comfortable at work, knowing that mother and wife are close to a bus route and hospital.He is seeking donations to buy this piece of land at Rs. 470,000 and may be a lakh or two more to touch up the home so he could keep his sick wife there.

As the bills to feed and clothe his family and the costs of medications and transport to hospital for Sriyani mount, his earnings are long gone before the month ends. Day in, day out the family’s diet is basically rice and one curry such as manioc with no protein even for adolescent Dasun.

“The greatest advantage of the new home would be that I could get a three-wheeler to the garden, whenever Sriyani needs to be taken to hospital.

For, she is on blood-thinning medication and has to undergo testing every month for adjustment of this drug accordingly.

“Help us,” pleads Kumara.

All those generous people who wish to extend a helping hand may send their contributions to Account No. 039020163556 at the Hatton National Bank, Bambalapitiya branch in the name of R.P.D.R. Kumara.
While Kumara lives at B-88, Godawela, Danowita, he may be contacted on Mobile: 0779071263 or Home: 035-7900778

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