It was all meant to be so different. She was scheduled to have life-changing surgery in May last year that would’ve given her a shot at a normal life. But instead Charlene Moses is in agony. Apart from walking to the local spaza shop and her visits to the community clinic, she doesn’t leave home. “I can’t take a taxi because the drivers aren’t willing to drive me. And if they are, they overcharge me – probably because I’m the size of two people.”
She refuses to join her family on shopping trips because it’s impossible to move around easily. Charlene can’t even enjoy the sights of Hout Bay harbour just below Hangberg, the Cape Town neighbourhood where she lives. The only view she has of the bustling tourist attraction is limited to a window in her flat, where she’s holed up for most of the day. “I miss all the things I can’t do anymore,” Charlene says despondently. It’s been more than a year since we visited the 47-year-old (YOU, 22 March 2018). Back then she was eagerly awaiting surgery to remove excess fluid from her feet and legs. She’s had problems with her legs since she was 38.
The surgery, scheduled for May last year, would’ve improved her mobility and the appearance of her legs. But now her hopes of recovery have been crushed. After running tests to check whether her vital organs would survive the complex operation, specialists at Groote Schuur Hospital decided against the surgery. The toll Charlene’s weight has taken on her body has put her lungs and heart under strain and surgeons feared she wouldn’t wake up from the anaesthesia. Doctors first told her in 2016 that she suffered from lymphatic filariasis, or elephantiasis, a condition characterised by swelling in the legs, arms and genitalia.
But she’s now also been diagnosed with lymphedema, an incurable condition caused by a blockage in the lymphatic vessels (see box). Last year she tipped the scale at 125kg – twice the weight she should be for her 1,6m-tall frame. But her condition has deteriorated to such an extent that if she just places her leg on the scale, the gauge shoots to 150kg. Then there’s the excruciating ache in her limbs. “It’s a pain you can’t describe,” she laments. “I’d compare it to childbirth.”
When doctors called off the operation to remove excess fluid from her body, they advised her to exercise as often as possible. She tries to be active by walking short distances but eventually the pain becomes unbearable and she ends up staying indoors. Doctors have told her there’s nothing they can do for her. The news has left her devastated but she’s not giving up hope. “I’ve watched [the TV series] My 600-lb Life. Overseas there’ll be doctors prepared to help me because they have the necessary equipment,” she says. “I can’t give up hope. “I don’t want to think about the day I can’t walk anymore. Those thoughts do enter my mind, but I push them away,” she says.
Daily life is a series of daunting challenges. Charlene lives with her sister, Veronica, in the flat they took over from their parents, Arthur and Maria, after the couple died two years ago. Veronica works as an au pair in Franschhoek, 80km from Cape Town, which means she returns home only at weekends. During the week family members who live nearby and nurses from the local clinic pop in to help Charlene wash and to do chores around the house. But that’s all the human interaction Charlene has, and she prefers it that way. “Sometimes I just lock myself in because I can’t cope with the outside world,” she says. She’s also struggled with mental illness. When she was 19, she tried to commit suicide and was diagnosed with schizophrenia and bipolar disorder.
She’d been on medication but stopped taking it for a while. Now her symptoms have returned. “The voices are coming back,” she says. “They tell me people are talking about me, that they’re making fun of me because of how I walk.” She’s been put on antipsychotic and anti-tremor medications but says there are often months when the clinic doesn’t have them in stock. Then she drinks sugar water to calm down. Being alone at night, incapable of fending for herself, makes her feel unsafe, she says. “I struggle to fall asleep.”
Despite her debilitating condition, Charlene has good reason to wake up every morning. She proudly shows us pictures of her 16-year-old daughter, Andrea, a Grade 10 learner at Ambleside School, Hout Bay. When Andrea was born, Charlene decided to put her in the care of her brother, Joseph, and his wife, Arlene, because she could barely care for herself, let alone a baby. Joseph has since died of kidney disease. Arlene and Andrea live across the road. Charlene and her daughter are close. Andrea visits often for lunch or dinner but Charlene says she refuses to burden the teen with having to care for her. “I don’t ask her for help. She’s young and I want her to enjoy that. She’s growing up and now it’s boys and stuff like that.” Charlene has also opened her heart to love – something she was dead set against a year ago.
She’s recently started corresponding with Cedric Robert Khusal (56) and although they’re separated by distance – he lives in Port Elizabeth – they’re enjoying each other’s company. They met on Facebook and now stay in touch on WhatsApp. They haven’t met yet, but he plans to travel to Cape Town soon. “He tells me I’m perfect just the way I am,” she tells us. The disability grant she receives barely gets her through the month, which is why she recently approached a local supermarket for a job. But she has yet to hear from them. “I said to them, ‘I can keep you busy by making jokes all day. You can pay me for that. I’m better than Trevor Noah’,” she says, then bursts out laughing. She becomes serious again. “I’ve always been a caring person. Now I hope there’s someone out there who can care for me.”
Her condition has left her so desperate that at her lowest moments she’s considered having her legs amputated, Charlene says. But that’s not a realistic option. She doesn’t live in a wheelchair-friendly flat and she wouldn’t be able to afford prosthetics. “Before they were supposed to do the operation, doctors showed me pictures of what my legs would look like afterwards,” she recalls. “I was so excited, only to be disappointed again.”