Lillian

Lillian was 16 and from Lake Victoria in western Kenya. She came to our clinic after testing positive for HIV. The diagnosis was no big surprise: both her parents were already dead from HIV, and it was an academic question whether Lillian got the infection at birth, from reused needles, unprotected sex or an untested blood transfusion for malaria. For Lillian it didn't matter much “where from.” The question for her was “where to?”

Figure. Photo by: Fred Sebastian

I met Lillian too late to start her on antiretroviral treatment. She already had advanced AIDS complicated by a tubercular infection around her heart. She'd had the tuberculosis so long that scar tissue had formed, making it impossible for her heart to work normally. As a result her stomach swelled with fluid, and distended veins ran across her belly.

She sat before me, waiting, in her knee-length pink nylon dress with its matching Sixties-style belt and buckle. It was the only dress I ever saw her wear. Back home her dress would have been retro, a lucky find in a vintage sale.

Lillian had bulging eyes as well as a bulging stomach, stick-like arms and legs, and intractable pain. She also had a chest full of fluid, and I decided to admit her to hospital. The tuberculosis had clearly been missed in our clinic, and she hadn't sought other care from us. Maybe she couldn't afford the chest x-ray for diagnosis and was too proud to ask for help.

As Lillian was also intractably cash-free she drove back to the hospital next to me, proud to ride in the clinic car. I admitted her one late afternoon to the TB ward, where she lay on a light blue cotton hospital blanket. She owned no nightwear and had no family to provide her with sheets or with food.

I visited each day and brought her soda and mandazi. I hated the ward; it stank of sick, sweaty bodies and leaky emaciated coughing. Someone gave her oranges; the peels and juice lay on her increasingly smelly blue blanket and pink dress. She couldn't get up to wash her hands, so they were sticky as they grasped mine. I found an old purple T-shirt for her to put on so that I could take her clothes and blankets home for washing. “Sally's my friend,” she'd gasp at me as her breath became more laboured.

Lillian deteriorated quickly and she knew she was dying, alone. “Don't leave me,” she'd say. “Take me home.” Where, Lillian? Whose home? Your grandmother's? The same grandmother who knows that you're in hospital but can't afford to visit? The same grandmother who won't have the money to claim your body for your funeral?

Lillian died within the week, in massive pain. Her pupils were dilated and searching. She writhed, grasped my hands, wrists, legs, mouthing through bared teeth, “Don't leave me.” There was no morphine in the hospital, no pain relief, just some codeine from my house.

Lillian died in a system that didn't have the capacity to treat her, let alone care. I paid the bribe to the hospital administrator to get her body released from the morgue. I paid for the cheap wooden coffin and matatu bus so that she could go back to her village for burial, strapped to its roof in her pink dress. I paid to understand that HIV in Africa isn't an economic or resource argument, nor is it about population control or failed prevention models. HIV in Africa is about solitary orphans without someone to wash their hands before they die. HIV is about young girls in pink dresses.