She struggles up the stairs to her flat, feeling each step carefully before hauling herself up – a painstaking journey that leaves her exhausted.
Going up and down the stairs is such an ordeal she leaves home only when she absolutely has to, preferring to spend her days in her tiny flat where she watches her favourite TV shows. Charlene Moses of Hout Bay, Cape Town, used to enjoy going out with friends and family but today her world has shrunk to these four walls.
Being alone is better than being mocked, laughed at or stared at in the street, she says. Charlene has lymphatic filariasis or elephantiasis, a debilitating condition that can cause unsightly swelling in the legs, arms and genitalia (see box below right).
At 125kg she’s twice the weight she should be for her height of about 1,6m and every day is a battle.
“I’m 45 years old but I feel as if I’m 80 or 90,” she says. “You don’t want to know what it’s like to live with this.” Although her condition is ultimately incurable, surgery can help relieve the symptoms – and Charlene was recently given a glimmer of hope.
A Cape Town doctor heard about her condition and has offered to perform an operation on her at Groote Schuur Hospital free of charge. During the procedure, the surgeon will remove excess fluid that has collected in Charlene’s feet and legs in the hope of improving their appearance and giving her more mobility. “I’m scared,” Charlene says. “But I’m quite excited too.”
Hout Bay has always been home for Charlene – it’s where she grew up with her parents and nine siblings. During the week she lives alone and for the most part takes care of herself until her sister, Veronica, returns for the weekend. Veronica works as an au pair in Franschhoek, 80 km from Cape Town, so she can support herself and Charlene. The sisters both live in the flat, which they took over when their parents died.
“It’s painful getting by when Veronica isn’t here,” Charlene says. Other family members living nearby pop in when they can, buying her clothes or cooking her meals. But Charlene’s health has deteriorated so dramatically recently she really needs around-the-clock care and struggles to do even the most basic tasks, such as washing herself or using the toilet. Even getting from one room to another is an ordeal.
“I can’t get into the bath anymore because I struggle to get up again,” she says. And household chores are next to impossible because she can’t stand for too long. Charlene has had health problems all her life and it was clear from birth there was something wrong. The right side of her body – including her brain – was considerably larger than the left, possibly because she was born with an abnormal lymphatic system. Her parents, Arthur and Maria, were warned their daughter might never be able to walk.
“Prayers went out in the community when my parents got the news from the doctors. They never stopped believing,” she says. And their prayers were eventually answered when Charlene learnt to walk at the age of four. Although she was a slow learner Charlene functioned well and started attending Sentinel Intermediate School in Hout Bay – but going there was close to torture for her. “Primary school was terrible,” she recalls. “Kids used to make fun of me.”
The two sides of Charlene’s body grew at different rates and her right arm and leg were considerably longer than her left. When she was 12 she had her first operation to halt the growth of her leg. Charlene indicates her scars, pinpointing exactly where the surgery was done, and stretches out her arms to show us the significant difference in arm length and hand size.
After primary school she moved on to Hout Bay Secondary School but left in Grade 9. “I couldn’t handle it any longer. Children made fun of me all the time and I begged my father to let me drop out.”
She went to work in the kitchen of Suikerbossie Restaurant, a chic local eatery, but was forced to quit because of the increasing pain in her legs. Eventually she found another job, as a cashier at the local Spar supermarket, but even that proved too much. The pain and discomfort left her with no choice but to quit and Charlene, then 19, applied for a disability grant, which she’s depended on since.
At the age of 30 she had a daughter, Andrea, with her boyfriend at the time. But because she struggled to care even for herself Charlene decided to put her in the care of her brother, Joseph, and his wife, Arlene. Joseph has since died and Arlene and Andrea (now 15) live across the road from Charlene so she sees her often. It wasn’t until two years ago that doctors finally put a name to Charlene’s condition – her symptoms had been increasing rapidly and she was getting more and more desperate for help.
It’s a constant struggle to meet the medical costs of easing her suffering and she often needs antibiotics to treat infections, she says. H ER condition is a source of torment for the soft-spoken woman, who asked that her nieces, Gaynor (36) and Chelsea August (25), join us for our chat.
She’s grateful for the support she gets from her family, who do as much as they can for her when they’re able to. “I can’t remember the last time I wore heels and I can’t wear sneakers,” she says.
“Whenever we buy her shoes we have to break them in first to stretch them,” Chelsea says. Charlene laughs wryly when we ask if she’s looking for love. She’s had a few relationships and spent time on dating sites but says that dating is simply not for her.
“I don’t think my personality allows for me to be in a relationship.” Charlene says she tries her best to be strong and isn’t looking for sympathy, but she becomes scared when she thinks of the years ahead.
“Doctors say my legs will be bigger 10 years from now and that scares me. I don’t think I can face that.” She’s hoping the upcoming surgery will make a difference. Nervous as she is, she’s grateful to the doctor who’s agreed to do it at no cost.
She could never have afforded it, she says. Perhaps after the operation she’ll be able to go outside more – and that staircase won’t seem like an insurmountable obstacle.
