‘Why did my son get this disease?’: of stigma, poverty and hard-fought battles against leprosy

Noiputtru (disease), by Tamil writer and Sahitya Akademi winner Imayam, is an exploration of a leprosarium in Tamil Nadu in the 1960s, and the travails of the patients who lived there. The novel couches it in a socio-cultural context and is fully conscious of the impoverishment that goes along with it, but above all, it provides a rare perspective, in Tamil literature, to a disease in its totality – here, leprosy.

On World Leprosy Day, observed in India on January 30, we bring you an excerpt from the first chapter that, in a conversation between a doctor and his patient, defines leprosy.

Translation by B. Kolappan  

“You will survive only if you feel pain. Otherwise, your story is over. Your face itself bears witness to this… The hair on your eyebrows has fallen. Your ears have thickened. Your nose has flattened. There is no doubt — it is leprosy. Sit down,” said the doctor. 

Chinnasami sat on the three-legged stool to the doctor’s right. 

“Remove your shirt,” the doctor said.  

Chinnasami removed it. 

 “Show me the patches.” 

“What is a patch?” 

“A scar-like mark. Reddish-purple. Round. Shiny, as though butter has been rubbed on the skin. Where the skin gleams. Where are the spots where you have no sensation?”

“Here.” 

“Where else?” 

“Here.” 

“Where else?” 

“Here. In this place.” 

 “Next?” 

“On the thigh.” 

“Show me your left leg.” 

“Show me your heels.There are cracks and ulcers on both legs. Also on the fingers. All right. Show me your ears.” 

“Right ear.”

 “Leprosy. It has progressed,” declared the doctor. 

He removed his spectacles, wiped them, and put them back on. From the drawer, he took a chicken feather, a needle, and a ballpoint pen, and placed them on the table. 

He turned to Veeramma, who stood behind Chinnasami near the wall, her hands folded. He looked at her briefly. Then he turned again to Chinnasami. 

“Do your chappals slip off your feet?” 

“I do not wear chappals.” 

“All right. Do you lose your grip while lifting objects?” 

“Mm.” 

 “Don’t nod your head. Open your mouth and answer. Do your wrists lose strength?” 

“Yes.” 

 “Do you feel any sensation in your heels? Does it hurt when you step on stones?” 

“No pain.” 

“Are the red patches numb? Do you feel numbness on your hands and legs?” 

“Yes.” 

“The red patches on your face, do you have them on your buttocks too?” 

“Yes.” 

 “Fine. Sit upright,” said the doctor, as he touched the patches on Chinnasami’s body with the feather and asked, “Do you feel this?” 

 “No.” 

Every time the doctor touched another patch and asked him the same question, he said no. 

The doctor set aside the feather and picked up the needle and slightly, but firmly, pricked the spots, patches, and other stiff areas. 

“Pain?” 

“No.” 

When the doctor picked up the needle, Chinnasami feared that it would cause pain. But the doctor had pricked him in at least ten places, and he could not feel pain even in a single place. He was happy because it was not painful, but the doctor’s face was now very grim.

“OK. Wear your shirt,” said the doctor, and washed his hands with soap. 

“How old are you?” 

“Twenty-five.” 

“What did you do all these years, you have come now?” 

“Only now did we hear about this hospital. The teacher in the Danish Mission School told us.” 

“OK. You can go now,” said the doctor. He wrote the drugs: Lamprene, Dapsone, and DDS, on his prescription pad, and called the nurse. 

The nurse, who was standing outside, entered and stood beside Chinnasami. The doctor handed the prescription to her. 

Veeramal suddenly spoke: “Save my son, my lord. I don’t know whose curse this is — it has affected my child. My lord, I am a widow.” She prostrated before the doctor. 

The doctor’s face changed. “If you do it again, I will chase you away without giving you tablets. Get up,” he said. 

She stood up, but her crying did not stop. 

“Come out,” the nurse called out to her sternly. 

But only Chinnasami went outside; Veerammal did not budge. 

“Come on, the next patient is waiting,” said the nurse, and moved towards her as if to pull her out physically. 

But then the doctor called out “Wait,” and she stopped. 

“There is some noise outside. Go and see what it is. How many cases are waiting?” 

“Four, sir,” she said and left the room. 

The doctor spoke to Veeramal: “How many children?” 

“Three daughters. He is the only son.” 

 “Husband?” 

“No, lord. He died twelve years ago.” 

“OK. Go out and see the nurse.” 

“Will he be cured?” she persisted. 

“You have come only today. How can I say anything? The disease is serious.” 

“Will it be all right in three, or six months?” 

A light smile creased the doctor’s face listening to what Veeramal said. The next moment, however, his face changed. 

“Had you come a little earlier, we could have cured the ulcers through surgery. Now there are cracks on the legs and ulcers. The disease is caused by Mycobacterium, an invisible bacterium. There will be crores of bacteria in the spit of the patient. You cannot say it is contagious, but you may get it if you constantly are with a patient. It is better for you to keep a distance from your son. There is no vaccine for the disease as of now. It may be invented later, but I will not advise you to count on him now.” 

“I have no livelihood, my lord… Should we visit regularly or stay here, my lord?” 

“He can stay.” 

“How much will it cost?” 

“Yes. Ten rupees per month for food. Can you afford it?” 

“I will even pledge my life to pay it. You are like a god for us, please save my child. We four women depend completely on him. Consider him as your own son and save his life,” she cried and fell at the doctor’s feet.  

The doctor looked at Veerammal lying on the floor. He did not utter a single word to chide her this time. He turned his gaze to the portrait of Jesus Christ on the wall opposite. 

“Get up,” he finally said. 

She got up, and started again: “We have not harmed anyone. We have not committed any sin knowingly. We have not spoken ill of anyone, spoiled any family, or wished ill upon anyone. We have not stolen another’s belongings. Why did my son get this disease? The world looks at him with disgust. I still eat with him even though others walk away from him. My heart is burning. It is like a thunderbolt has struck us. There are three women at home. No one is coming forward to ask for their hand in marriage. My lord, we do not even have the support of God. I gave birth to a boy only for him to be cursed by the village and spat upon. My stars are not good. That is why my son has reached this condition. A luckless boy. Is it a curse of God?” 

The doctor spoke: “There is no connection between what you say and the disease. It affects only those who do not have immunity. It spreads through cough, sneeze, and spit. The bacteria is shaped like a small stick but we cannot see it. There is no threat to life, now. The nose may become slightly flattened. Fingers and toes may curve and erode. It will look ugly. The bacteria affects the skin and nerves. It is a lie that it is caused by a curse. Had you come earlier, we could have prevented the damage to the legs and hands.” 

 “Can’t we do anything now?” 

“There are different types of leprosy. We have to diagnose what kind it is, first. Your son is not crippled yet. Let us see what can be done. First, we should give him medicine to boost his immunity.” 

“You are a god to my son,” said Veerammal, folding her hands in respect. 

“You can go.” 

“Shall I leave the child here or take him with me?” 

This time, he called out to the nurse, and she quickly entered. 

“Bring in the next patient and admit this patient.” 

 “Come,” said the nurse, as she guided her outside. 

She introduced them to a man who appeared to be about thirty years old. “Paranjothi, admit him,” she said, handing him the doctor’s prescription. 

“Come,” said Paranjothi. 

He too seemed like a patient. Chinnasami and Veerammal followed him.