She likes sitting in gardens and following the lazy flight of a butterfly with her eyes. Everybody likes sitting in gardens but not everybody notices butterflies. Which is a shame because what’s the point of butterflies if you don’t notice them? Butterflies are nature’s perfume. It’s the COVID-19 season. The bareness of the roads. The haziness of the future. The lack of recognisable continuum. Sitting in the garden seems like a treat, something illicit, a cheat-day. But here she is, her legs stretched out on the rocking bench. If you look closely in that picture, it’s smaller than the other leg- knee-down, like it belongs to someone else – a thin girl.
She’s spending the last weeks with her left leg before it’s amputated.
She’s 32 and she seems to have spent a great deal of her life trying to either save it, or live with it.
She remembers the time she and her aunt went to India in 2014. How the heat rose from the very pavements of Bangalore. When it rained, it felt warm against your face. The air, spicy and smoggy at the same time. Children pointing at them in the streets, touching her hair. She recalls how a gaggle of doctors would gather around her leg with files and pens, scribbling, asking questions in their heavily accented English. How attentive they were, keen and very curious and eager, constantly writing her responses down in long yellow pads. How older, bendy specialists with silver mustaches would come into her room in a cloud of wisdom, flanked by more fresh-faced doctors, standing away in great reverence, pens poised like intellectual swords. The older specialists always sat on the edge of her bed as if they knew each other before and were there to read her a bedtime story. They all spoke to her softly, almost in a fatherly way. They never took notes. They didn’t need to; their brains were sponges. Their eyes the colour of black tea.
The hospital didn’t have many black people coming to that hospital so the doctors spent more time on her, driven by curiosity but also by science and an adventurous sense of discovery. “There were some very cute ones,” she says. Floppy-haired Indian doctors who resembled Bollywood villains. India was the last resort. She had done the rounds in the major hospitals in Kenya – Aga-Khan, KNH, Kijabe – and specialists had prodded and X-rayed but it all came to naught. So she stayed three months then went back again for two weeks. They all tried everything and said the same thing; this leg was alive. It’s not dark. The toes can move. It was a nerve thing but nothing can be done because all everybody did didn’t help.
When you have a bad leg, you don’t have a normal teenage life. Teenage flies right over your head. Your leg sticks out like a sore thumb; you are the girl who walks funny. “The usual mischief of teenagers – partying, going out, lighting your first cigarette – was lost on me,” she says. Then she stumbled into college and what she remembers about college was that she got a crutch. A crutch – though it helps greatly in locomotion – comes with its own problems; it’s an admission that you are not quite like everybody else and that your leg is no good. That you need help to walk. And you are slower at it. You are also aware that you can’t run if it came down to that.
A crutch is not discreet. You can’t blend in a crowd holding a crutch. People notice. And they stare. And often ask insensitive questions. “So I learnt to lie, to make up stories, the wilder the better.” She fell off a roof. A car ran over her foot. She was running from a mama hippo in Naivasha. A psychotic boyfriend pushed her out of a moving vehicle. The dog ate it – after eating her homework. [OK, this is just mine]. “I learnt to detach myself from my leg and talk about it like it belonged to someone else. Like in the third person.”
Then the men. Her dating history is minuscule, faded and wiped off like wind on a drawing in the sand. There are men who imagined the leg was a small accident that would recover after three days and were shocked when it didn’t. There are men who were attracted to the idea of her with a crutch. Who saw it as a fetish. It’s how something rose in their eyes when she leaned on it.
“Some said they found it very sexy,” she says. “They wanted to try it on, as if it was some kind of hat. I have heard some strange things.” She sips her Fanta.
“Have you ever had to hit someone with your crutch?” I ask.
She laughs. “Yeah. Of course a few times. Against an ill-behaved man, of course.”
However, the biggest problem with going about with a crutch is that you are reduced to it, she says. “Everything about you boils down to, Julia with the crutch,” she says. She has never been seen in any prism but through the crutch. But she chooses to see it differently. She has four crutches but the one she has today is her favourite, she calls it Sophie. It fits well in her arms. “We have been partners in crime, we go everywhere together. I will miss it when I no longer need it.”
How her leg became what it is now is that when she was about four or three years old, she got a vaccination injection that went awry. Her leg swelled and became tender and she remembers missing school a lot and not being able to walk properly. “But I never knew this until recently when my dad told me.” she says. “My mom wouldn’t tell me.”
A leg like that comes with pain and pain is something she is well acquainted with. Physical pain. “There is no time I remember in my life that my leg didn’t pain. It hurts all the time. And it’s not just an ache, it’s the kind of pain that keeps you in bed. So I have always been on pain medication throughout my life to manage this pain and it’s always been different types of pain at different times. There is the pain when it’s a hot day or a cold night or a hot night, a rainy day. It’s a horrible pain that makes you wish for death. Sometimes it feels like someone is sawing off my leg slowly, or there is a fire burning right inside my bones, or someone is trying to rip off my leg but a last strand of muscle is still holding it tight. It’s mostly right here, from my knee going down,” she says. “Having this leg has been like taking care of a baby. Sometimes I could be sleeping and my leg wakes me up because it’s too hot and painful so I have to uncover it or it’s too cold and painful. I get these uncomfortable painful twitches.”
There was no relief when she decided that she would amputate it, do away with it. And then Coronavirus happened and now she’s waiting for it to end then she will have it taken off. The wait has come with nightmares. “I have dreamt that I’m standing in the theater and watching them amputate my leg and I’m crying uncontrollably and when I wake up my pillow is wet and I’m dehydrated.” She dreams of a surgeon saying that he will upload the video of the amputation on YouTube and she’s begging him not to and he’s saying, you don’t have a choice, it’s going up and millions of people will watch it. “I have dreamt of the anesthesia not working and I wake up as they are sawing off my leg and I’m screaming in pain but they can’t hear me.”
She has dreams of someone chasing her, dogs barking, her stumbling down, soil in her mouth.
You wonder if there is relief now that she’s ridding herself off the pain when she gets it amputated.
It’s confusing, she says. “I will definitely miss doing my toenails. I have been told I have nice toes. I also don’t know what will happen when I take away the pain. I don’t know what will replace it because I have known pain all my life, it’s occupied my thoughts and mind. I have always known that if I’m in pain then others must be in pain. It’s because of this that I’m very sensitive to the pain of others.” She pauses. “I’m conflicted. I want to stop the pain but what will that turn me into? Will I be less sensitive to other’s pain because I was caught up in stopping mine?
Whatever happens next, she is now spending her last days with her leg. She takes her everywhere. She paints her toes different colours so that one day she can remember how it felt to have a left leg with toes. It’s been a complicated relationship and she realizes that it’s time to let go of the leg and the pain and everything that comes with the leg. Maybe after, she will discover a new life in this final leg.