Bronwen Jones
‘Shit” is a mild expletive, inoffensive to many. But human excrement is taboo. This most distasteful of subjects has been on my mind and in the air for several weeks now.
I am acting in loco parentis for a little girl who lost most of her legs, and her parents, in a fire in Alexandra a decade ago. Burn damage destroyed her sphincter, left her with no buttocks and scarred her elsewhere physically as well as emotionally.
When I met her, she had one strong wish: to live without a colostomy. The see-through bag drained her body waste; an unseemly smelly sack that was always with her, hanging in front of her tummy. It was not meant to smell, but it did.
Eventually I secured her fat medical files from two hospitals and found a couple of surgeons who were prepared to try to improve the girl’s life.
It seemed that the colostomy could be closed but that her bottom would not be able to work as it should, because there was no muscle to close the anus. Her hip was fused, the muscle burned away inside,which meant that she could never sit upright and so, gradually, her spine was becoming more deformed.
The hip had to be dealt with. After nearly a year of prevarication by people who were neither family nor doctors, the first operation went ahead.
For the first time in 10 years the little girl was using her bottom instead of a bag. She felt euphoric and then depressed, as not knowing when something would happen was alarming.
That was the first in an intended series of three operations.
Next her hip was broken with the aim that for the first time since infancy, she would be able to sit on a normal chair and use a normal lavatory.
The third operation will be an appendicostomy. This will allow the child to live without nappies and to decide exactly when she wants to use the lavatory, as she will flush out her own system with a syringe-like device.
I am sitting in the time between operations two and three.
Why is the little girl with me? Because she cannot live in a two-room township house with no bathroom, sharing a single bed with her grandmother, while she is trussed up like a chicken (in plaster and broom handles!) and defecating all day long.
But looking after her has made me think of a host of other people in similar situations.
There are the paid professional nurses who work with the mentally disabled or with geriatrics.
And there are families coping alone at home with no support from anywhere, not wanting to show their mother/father/husband how disgusting they find their task. For the patient it is embarrassing to lack control, and to suffer the indignity of smells and stains, and to read the distress in the face of the caregiver.
A significant percentage of the population suffers such indignity as they die from Aids, too weak to leave their beds. I don’t think the home-based care courses explain the logistics of how families should deal with that. Of how a family of eight living in a squatter camp shack should manage to wash sheets daily and dispose of waste, without putting the mental and physical health of the whole family at risk.
The conversational taboo doesn’t help. If you phone me up and ask how I am and I answer that I am up to my wrists in shit, at best you’d think me vulgar. And you’d far rather I didn’t talk about it.
But if you happen to be incontinent one day, be prepared first for the high cost of trying to keep clean. Your local pharmacy will sell you a box of 100 gloves and a big bottle of disinfectant. They will sell you “linen savers” at about R1,60 each. These are small plastic-backed paper disposable sheets that protect the permanent bed linen so long as your patient is not a child who wants to move no matter how much you ask her not to.
There are disposable small adult nappies at about R160 for a pack of 20.
And then of course there’s Vaseline and tissues and gradually, as the stench worsens, any manner of room fresheners and body sprays. And surgical masks that actually don’t keep the smell out but you’ll try anything that you think might just make it more bearable even drenching them in eau de cologne before use.
In the case of the little girl with no legs, we can use between four and six nappies a day and the same number of linen savers and pairs of gloves.
Sometimes she is bored and pokes through the nappy because she “had an itch” and there are more cotton sheets to wash. Sometimes the nappy tears, or one’s glove gets caught on the sticky plastic nappy tabs and the glove tears.
The task is so unpleasant that, like the smell, it pervades the whole day. One thinks terrible thoughts about giving the patient less to eat so that she might produce less waste, or wondering how to feed her something sweet-scented like condensed milk that might remain pleasant right through the digestive system and out the other end.
I find I don’t want to eat after cleaning the child, as I always fear something could be left on my hands. Somehow the smell of silicon gloves and faeces remains in the air and almost on the tastebuds.
I want to talk to someone about it. I want some miracle worker to knock at my door and say that they’ll take over the nappies up to the next operation and beyond.
But of course no one will make that offer.
And part of me is glad. There is no stronger lesson in humility than to have to clean away the body waste of another human. And there is no way in which I could have understood the dread and despair of people nursing their Aids patients towards death.
My shitty time will be over in a few weeks. But what about the people who work with such patients all the time? What about the people who can’t buy gloves and nappies and R120 mattress protectors for grown-ups? It doesn’t bear thinking about but bridge that taboo and think about it. Please.
Bronwen Jones is the director of Children of Fire. E-mail her at [email protected] or visit the website www.icon.co.za/~firechildren