Incomplete Lives: Inside A Leprosy Colony Where Illness Is Not The Hardest Part

Each morning Kishan whose youth seems like a distant memory, trims his hair with painstaking care. The blade glides slowly across skin that now bruises at the slightest pressure, purple blooms appearing without cause or memory. The mirror records rather than flatters: time has outrun its promise. Doctors once gave him a year. Three have passed. In his early thirties, he survives.

Shantivan where Kishan lives, has twenty-four houses, one clinic, and a population most families have stopped visiting. Located on Mumbai’s fraying edge, the leprosy colony is where people with advanced leprosy are sent when treatment ends but life cannot return to what it was. Here, illness is only part of the story. The greater injury is separation—from work, from touch, from the everyday assurance of being counted.

The settlement is mostly brick-and-mud structures under tin roofs that creak in the heat and drip in the rains. Narrow lanes thread between them. Hand pumps stand at intervals; neem trees offer patchy shade; cracked drains run alongside. Outside each doorway, pairs of old slippers sit in neat alignment, a quiet gesture of order.

“My mother and father died in a car accident,” Kishan says, eyes fixed on the cracked concrete floor. The words fall flat. What he misses is not grand grief but the small sounds: his mother stirring dal, his father clearing his throat before speaking. These echoes return unbidden, filling long, empty hours.

“Sometimes I sit here and think—if they were alive, would they still come? Or would the disease have pushed them away too?”

The air carries traces of antiseptic and cooked rice. Near the entrance is a small whitewashed clinic where dressings are changed and medicines given out. Life moves in repetition: clothes drying on wires, a radio murmuring from one house, someone resting in a doorway, watching the day pass.

Advanced leprosy has taken root in Kishan’s body. Patches of skin no longer feel heat or pain. His fingers have shortened from nerve damage, making buttons and spoons a daily negotiation. Wounds appear silently and heal reluctantly. Each night he inspects his feet by lamplight, searching for injuries he cannot feel.

“One small cut can turn bad without me knowing,” he says. “But the real pain isn’t the wound. It’s knowing no one outside these walls would notice if I wasn’t here anymore.”

What he grieves most is not numbness, but the absence of presence—the nearness of others that once made the world feel inhabited.

Two houses down live Rafiq and Meena. They met years ago in a treatment centre corridor, seated on opposite benches. Shared silences became glances, then talk of medicines, then of families left behind. When both were sent to Shantivan, they arrived separately but soon chose the same small house.

There was no grand wedding: borrowed garlands and a nurse as witness. What mattered was the decision to share what remained. Rafiq’s condition advances gently; Meena’s has taken more, dimming her sight and curling her fingers tight. He knows her world by heart: the steps from bed to door, the reach to the water pot, the uneven ground at the threshold.

Each evening he describes the sky for her—pale blue, or heavy with cloud—giving her colours she can no longer see. “Rain will come soon,” he tells her. “We’ll sit inside and listen to it on the roof.” Their room is small and carefully arranged: cups always in the same place, saris folded by memory, an old calendar frozen on dates long past. They eat slowly, words few but kind—the small tether keeping loneliness at bay.

“Before Rafiq,” Meena says, “I thought the darkness was only in my eyes. Now I know it was deeper.”

At the lane’s end sits Chacha, the old man known only by that name. Every afternoon he settles near the gate, watching the road beyond the low wall. His daughter brought him after his diagnosis, completed the paperwork, promised to return after the harvest. Harvests passed. She never came.

His cloth bag stays packed with spare clothes and documents. Every passing vehicle makes him lean forward. “She said she would come,” he murmurs. “After the harvest. Then after the next one.” At dusk he gathers his things and walks home, the gate left behind like an unanswered question.

In a colony this small, days are shaped by repetition. Everyone hears the same sounds: clinic hours, meals, dressings changed, afternoons thinning into quiet. People sit together without much talk—not from unease, but because so much has already been said, or because words cannot cross the wall that separates them from their families.

What binds them is not only illness, but shared withdrawal. Leprosy marked their bodies; stigma and silence marked their place in memory. Shantivan offers shelter, routine, and care. It cannot restore the roles once held—son, spouse, parent—nor the ordinary nearness that made life feel shared.

Still, small resistances endure. Ajay speaks of his son, whose marriage proposals are rejected because of him. “But he comes,” Ajay says. “He holds my hand. That touch keeps me going.”

As evening falls, shadows stretch across the lanes. Someone sweeps outside their door. A radio crackles. The clinic lamp goes out. Kishan sits on his threshold. Rafiq straightens Meena’s pillow. Chacha takes one last look at the road.

In this place, loneliness is intimate. “We are all missing pieces,” Kishan says. “But here, we try to fit what’s left together.” And in small, stubborn ways—a voice describing the sky, a steadying hand, slippers aligned at the door—they do.