‘I am stuck. I want to start my life again, but anyone who looks at my face will ask me what happened. When I tell them I had cancer, no one will give me a job.’

Mouli was diagnosed with oral cancer two years ago. It started as a small lesion inside of his mouth which he ignored. The cancer slowly dug a tunnel into his mouth till it finally emerged as a fungating ulcer on the surface of his face. That was when he went to the government hospital, where a biopsy confirmed it was squamous cell carcinoma. He quit his job without revealing the diagnosis to his employer and got admitted in the cancer hospital in May, 2016. He spent the next year in that hospital and neither family nor friends visited him even once during that period. He underwent chemoradiotherapy, followed by surgery to remove the cancer and a small part of his mouth on the left side. A flap of skin and muscle was cut from his chest to cover the gaping hole on his face but it left an obvious asymmetrical bulge on the surface. Between that surgical scar and the deep and constant sadness in his eyes, it’s impossible to look at him and not want to know what happened. His fate is written on his face.    

A lot had already happened in C. Mouli’s life before the cancer came. He was born in 1979 as the youngest member of a poor family of five in the city of Warangal in South India. He lost his father to alcohol when he was 15 years old and he was left with a mother and two elder sisters to care for. He dropped out of school and got a job as a school bus driver. He got married in 2002 to a girl his mother had chosen for him and helped her to get a job as a bus conductor in the road transport corporation. They had a child together in 2005, and C. Mouli had his daughter’s name tattooed on his arm. A few years later, when his wife was involved in a bus accident that left her bedridden for 15 months, he and his mother took care of her and got her back on her feet. She re-joined work in 2012 and fell in love with another bus conductor.  They eloped. They convinced C. Mouli to part with his daughter, telling him that she needed her mother more at that age and that he could have her back when she was older. They changed their address and phone number and C. Mouli hasn’t seen his daughter or wife since. He considered going to court but his sisters told him to let it go, warning him that the wife could bring false allegations against him to keep custody of the daughter. A few months after that C. Mouli’s mother died. He believes it was of heartbreak.

 

 

When the cancer came three years later C. Mouli quit his job, and his sisters, who were married and had their own kids, stopped talking to him. He underwent treatment and the cancer was declared cured in February of this year. But it left him in severe pain, with difficulty to open his mouth, disfigured, depressed, jobless, and alone. It was in such a state that I first met C. Mouli, about 6 months ago, when he was referred to the Kumudini Devi palliative care center in Hyderabad for supportive care. We treated his pain and taught him mouth opening exercises to help with feeding and speech. Our counselors and social workers spent a lot of time by his bedside but he was rarely in the mood to talk. When he did speak, he told them that when he saw other patients at the center being cared for by their families, he wondered why he was alive. He spent most days in bed, only getting up to bathe, eat, and wash his clothes. He had no visitors and nowhere else to go. We contacted his sisters and they said that he could come see them once in 3 months. The rest of the time, our palliative care center is his home.

One day, during rounds, we were talking about his family and I asked C. Mouli what his daughter’s name is. He pulled up his shirt sleeve and showed me the tattoo spelling her name in the Telugu script. Next to it was a tattoo of the monkey god Hanuman, a symbol of strength and devotion, but also of the agitated state of the human mind.

‘She must be 12 years old now,’ said C. Mouli.

A few months into his stay with us, we took him to the movies on a Saturday evening and that cheered him up. Some of the staff at the center, who had become fond of him, started bringing in special food that he liked. When he is in a good mood, C. Mouli is polite and mild-mannered. After months of exercises, he is now able to open his mouth two fingers wide. This makes it easier for him to speak intelligibly and to eat semi-solid food. He has started walking in the garden surrounding our center and says that he wants to help us with housekeeping. There are still days when he lies in bed not talking to anyone, but there are also days when he smiles. His pain is under control with our medications and he is able to care for himself independently.

We feel that he is now ready to leave the center and he feels it too. He tells us that he wants to find meaning in life again. But when we talk about occupational rehabilitation, he is worried about the mark that cancer has left on him and what people will think. Even after the disease has left him, he hasn’t left the disease. Fate has drawn its cruel lines boldly and indelibly on the surface of C. Mouli. The tattooed name, the surgical scar on his face, and the sadness in his eyes- they are stuck to him, and they in turn keep him stuck to who he once was.

Tomorrow, he will take a short leave from us to visit his sisters and celebrate the festival of Dussehra with them. They live in a village which is a 150-kilometer train ride away from our palliative care center. Dussehra celebrates the victory of the Hindu god Rama over the demon king Ravana and brings in Diwali, the festival of lights, three weeks later. I wonder whether good will finally win over evil in the fate of C. Mouli and whether we may one day see light in his eyes.