Mary’s affliction is so rare that it affects only three in a lakh. Yet she is fortunate enough to have a life partner lakhs of people can only dream of.
Joseph has been Mary’s eyes and ears since she fell unconscious in her bedroom 25 years ago. She was diagnosed with systemic lupus erythematosus (SLE), an autoimmune disease which turns the immune system against parts of the body.
The disease has affected Mary’s eyesight and hearing yet she is aware of everything that happens around. Joseph holds her fingers and makes her write whatever he has to tell her. Together, the couple has used up 42 notebooks.
Extraordinary journey
The story of the couple from Koorachundu in Kozhikode district has few parallels. Joseph was a pioneer of sorts in the hilly village of farmers who migrated from central Kerala. He was the first one to own a jeep in the Chembanoda village. He also opened a small restaurant in the village and named it ‘Maria’.
He married Mary in 1982. The couple raised two children. One day in the 11th year of their marriage, Mary collapsed in the bedroom. Joseph rushed home on his bicycle. That was the start of an extraordinary journey.
Away from light
Joseph found Mary in a pool of vomit. He carried her to a hospital at Perambra. She returned home the same day after treatment. The next day she fell down again. Within three days, she could hardly hold herself.
She wavered when she tried to walk. She was irritated by the ringing in her ears. Her limbs became weak. Both eyes were paining. She could not look at anything bright. She locked herself in a dark room. Nobody could explain the illness.
The couple knocked at every door, trying out modern medicine, ayurveda, homoeo, indigenous systems and even prayers and retreats. Nothing helped.
Increasing misery
After eight years of misery, doctors found that Mary was suffering from lupus. The diagnosis did not help at all. There was no remedy for the rare disease that affected almost all organs.
Mary’s limbs were covered in wounds. Painkillers did not offer any solace. Joseph bathed Mary in herb-infused water as told by an adivasi healer from Wayanad. He said he had tried everything but black magic.
The open wounds made it impossible for Mary to sit or lie down or even to wear any dresses. Joseph covered her body in plastic sheets and kept her suspended amid a lot of pillows. “She looked like an astronaut,” Joseph said.
Question of survival
He spent four hours a day to dress the wounds. He washed the wounds with saline water and covered them with cotton pads. He wanted gauze worth Rs 1,200 a day to dress his wife’s wounds. Medical store owners in the town sent him the material every day free of cost.
Jospeh was broke anyway. He handed over the restaurant to the employees. He sold the first jeep of Chembanoda to the first buyer he could find.
Mary survived on steroids and morphine. Joseph could see eyebrows raising when he returned home from the palliative centre with 120 grams of morphine pills and several kilos of plaster every day. Someone even called Marykutty as Morphine Kutty, Joseph said.
Succor came when the parish priest narrated Mary’s plight to the flock amid a Sunday sermon. That was news to many of the people in the village. They had no idea that Mary’s condition was so serious.
Neighbours, relatives, parishioners, priests, nuns and staff at the palliative car units of Koorachundu, Chembanoda, Mullankunnu, Chakkittapara and Kuttiadi came forward to help Joseph.
Mounting debt
The regularly expensive treatment broke the financial backbone of the family. Joseph was forced to sell off his house and property at Chembanoda and shift to Koorachundu.
His children had got married in the meantime. His son Jose found a job in Saudi Arabia but he could hardly sent home the money needed for his mother’s treatment. Joseph borrowed more and more. He owed the Chakkittapara cooperative bank lakhs of rupees.
Joseph made it a point that Mary was informed of all the news from the relatives. He, however, has stopped going to family functions because he did not want to leave his wife alone.
The word that dwelt
Initially, Joseph wrote whatever he had to say in a notebook. As Mary’s eyesight failed, his handwriting became bigger. He dropped the last notebook on May 4, 2014, when Mary lost her sight completely.
Since then, he has been communicating with her by holding her fingers and making her write on the bed sheet. Mary would respond in a feeble grunt and try to reply in broken words.
There are things left untold though. Joseph has not told Mary that the loan liability had risen to Rs 42 lakhs and he had just received a recovery notice from the bank. He does not wish Mary anymore torments.
