Living in hope and joy in the face of adversity
Mayuran sketches while brothers Priyadarsha and Kabilash ‘sun’ themselves. Pix by Amila Gamage
Washed, brushed and fed and on a day when the rains have been banished by bright sunlight, one is in the tiny hall sketching to his heart’s content while the other two are ‘sunning’ themselves just outside the door.
These are not squeaky-clean babies, but a youth of 20, M. Mayuran, and his younger brothers, 17-year-old M. Priyadharsha and 15-year-old M. Kabilash. Ironically, though they literally live on the boundary of a school down Narahenpita’s Kirimandala Mawatha, the three have not ‘stepped’ or been carried into a school for many years.
The younger two are chair-bound, while the eldest is sprawled on the floor – very well-looked after and content they are as their mother and father, who has taken a day-off, are going about the shack they call home dusting, sweeping and keeping everything tidy and in its place.
Muscular dystrophy has ravaged all three, insidiously creeping up on them and taking M. Manoharan (52) and M. Manohari (50) by shock. Spared is their youngest and only daughter, 11-year-old Yadurshika, from this wasting disease. The day we visit, she is at school.
Stoic acceptance of their lot with equanimity, however cruel, hard, agonizing and unfair it may seem, is what we see.
This family facing numerous and seemingly insurmountable odds brings forth another image – that of the Holy Family 2,017 years ago. Mary heavy with child leaving their humble home in Nazareth, with Joseph leading the donkey carrying his beloved bethrothed over difficult terrain, whipped by chilly winds, to arrive in Bethlehem only to find that there is no room at the inn. At midnight on December 24, Baby Jesus is born in the humblest of surroundings, a lonely stable and is wrapped in swaddling clothes and laid in a manger, having as His first visitors, poor shepherds who had been tending their flocks on the adjacent hillsides.
Hope, joy and peace along with contentment are the very essence around which the Holy Family built their lives, an example upheld even today and we see a reflection in this family too living in the slums of Narahenpita.
Having been ‘tipped off’ about this beleaguered but happy family by Consultant Paediatric Psychiatrist Dr. Hemamali Perera, we are on their doorstep, guided there through a labyrinth of tiny homes, a stone’s throw from Asiri Surgical Hospital. Our guides are Senehasa Director Prasanna Hettiarachchi and Physiotherapist Captain Grecian Pattuwage.
The Senehasa Education, Resource, Research and Information Centre (SERRIC) run by the Defence Ministry was founded by the Ranaviru Seva Authority Chairperson, Anoma Fonseka, to provide rehabilitation and therapy for children with special needs whose parents are in the Armed Services, the Police Force and the Civil Defence Force. Senehasa has been a tower of strength to this family, providing physiotherapy, hydrotherapy and much more.
Parking our vehicle along Kirimandala Mawatha, we have walked some distance along the stony and uneven strip between the railtrack and other shacks to veer into the heart of ‘Samagi Watte’, finally ending at No. 32.
“Avve innawa,” says Priyadharsha from his wheelchair, giving us a wide smile, as his younger brother, Kabilash nods vigorously.
Into their immaculately-kept home we are ushered in by Manoharan who is in the Police Force and Manohari who has been giving a thorough sweep to the ‘bed-cum-dining room’, which leads to a tiny kitchen and up two steps to a toilet. The whole of the home in which the parents, three disabled sons and daughter live is no more than 300-400 square feet.
Pillows, sheets and other clothes are hung out neatly to dry in a sliver of an area crowded in by other homes. The heavy rains which lashed Colombo have splashed through many cracks and openings in the roof, drenching everything within.
We take a look at the past, starting with the joyous event of the marriage of Manoharan from Kandy to Manohari in Narahenpita. They were overjoyed when the three sons were born in 1997, 2000 and 2002. Life was hectic with the boys gradually reaching the age of schooling and Manoharan being posted across the country including Jaffna during the conflict.
Tiny suspicions began gnawing the parents when they noticed that the boys were finding it difficult to get up after being seated and pick up things from the floor.
The parents were keen to give them an education from the time they were little and whenever Manoharan was home the boys would crowd round him to mark dots on pieces of paper so that they could form the letters of the alphabet beautifully. Manohari would attend to all the household chores and manage the budget, feeding the boys nutritious home-cooked food.
It was when the eldest boy was attending Ramakrishna College in Wellawatte and the youngest was in Montessori that the reality hit home that something was terribly wrong with their sons. “Kakul ada kara kara avidinna patan gaththa,” sighs Manohari, adding that the boys were walking in an odd manner, slanting their legs.
The boys were gradually succumbing to Becker muscular dystrophy (BMD), an inherited condition that causes progressive weakness and wasting of the skeletal and heart muscles.
While BMD primarily affects males, the muscle weakness usually can be seen between the ages of 5 and 15. There is no cure for BMD and doctors can only help relieve the symptoms to improve the quality of life. Those hit by BMD may survive into their 40s or beyond.
The desperate search for treatment came then. Clinging to anyone who could offer hope, it started with ayurvedic treatment. Later they settled into a routine at the Police Hospital in Narahenpita, physiotherapy and also the Lady Ridgeway Hospital for Children in Colombo.
Manoharan is ever-grateful to the staff of the Police Hospital for the immense support that has been forthcoming from them.
The falls started, with Manohari re-living that traumatic time when the sons’ bodies became uncontrollable and they would just topple over.
“All three went to school until then,” says Manoharan, adding wistfully that when the falls became frequent, Manohari could not manage alone as he was working out of Colombo.
We get a glimpse of the ground reality – how can one person push three wheelchairs at the same time; their home has no access by vehicle even if the family had the wherewithal to pay, which of course they did not have; if the classrooms were upstairs how could the boys be carried up; how would the boys have a bathroom-break; and into the equation also came the cruelty of peers who would push the boys around and harass them.
The lessons halted eight years ago but the skilful sketching of portraits by looking at pictures, magazines or television continues and is what keeps them going these days, with files bursting with their works of art.
The family’s routine is arduous and the sleeping arrangements pathetic. Mayuran, with his unwieldy body, is compelled to doze off seated on an air-mattress, propped up by the wall with a pillow for his head, while his father and two brothers sleep on a bed-sheet spread on the floor near him. His mother and sister sleep on the bed. A cockerel and a hen are the ‘pals’ of the sons and gently peck them awake in the morning.
The parents, meanwhile, wake up early from their oft-disturbed slumber and carry each son to the toilet for their ablutions including baths and then deposit the oldest on a bed sheet on the floor in their tiny hall and the other two sons in their wheelchairs. The daughter attends to her own work and prepares for school.
A quick breakfast of some buns and then while Manoharan goes to work at the Police Hospital and Yadurshika to school, Manohari cleans the home and sits at the sewing-machine to stitch a few items which she sells to the neighbours to supplement their income. Thereafter, she cooks a meagre lunch. The day we visit, it is rice and mallun and we see no vegetable or meat or fish kept for preparation.
Mayuran, Priyadharsha and Kabilash spend most of their time drawing portraits and cartoons after which they watch a little TV. Even for the two who are chair-bound there is no garden to stroll around.
“Although they are physically disabled, they are intellectually able and if given an opportunity can learn anything. They are very talented artists, but no one ever recognized them,” laments Dr. Perera, adding that what is “amazing” is that with all these unendurable problems they are a happy family, constantly smiling.
| This Christmas, spare them a thought | |
| Spare a thought for the family of Manoharan and Manohari this Christmas with its message of caring and sharing.The vital need for the sons is home education to hone their latent skills and therapy. A Christmas bonus, of course, would be a tiny plot of land, about six perches, easily accessible where they could build a little home and the sons could be kept in the garden for some fresh air.Please send whatever you can to Bank Account No. 207050134-5 at the People’s Bank, Narahenpita in the name of mother Periyasami Manohari. Father Manoharan may be contacted on Mobile: 0757919063. |