Cover feature: SL magazine, November 1999
I first realised Helen was an amputee on a summer’s day at the Rhodes Memorial reservoir. We all took off our tops. We all took off our shorts. Helen took off her left leg. We all swam. Sitting on the bank, I watched her balance heron-like on a protruding pylon far out into the reservoir, strong and steady, before diving into the water.
When I told people I was writing an article on amputees the common reaction was one of shock tinged with disgust. Amputees are mutilated. Amputees are not whole people. Somewhere there’s a leg or an arm that’s now just a piece of meat. Amputees are proof that our bodies are just flesh and blood. They are a reminder that the vehicle that carries our consciousness is fragile and transient. You can spend hours in the gym building the body beautiful and wake up one morning to find the sheets falling strangely flat where your leg once lay.
Helen was 15 when she fell under a train pulling out from Rosebank station. The last three carriages ran over her left leg and amputated it below the knee. ‘If you put a five cent piece on a railway line you can see what it does – it just spreads,’ explains Helen candidly. ‘So the train basically took the leg straight off.’ The first thing she said when she was told that she had lost her limb was: ‘So when do I get my new leg?’
Many amputees go through an initial period of denial, especially if the amputation was traumatic. Most suffer from depression and anger while trying to come to terms with their loss. Helen accepted her amputation relatively well. ‘I think I was lucky in the respect that I was 15 at the time. At that stage of your life you haven’t really formulated a lot of who you are. I think if I’d really structured my identity as one does when you get into your early 20s, I would have been in a bit of a predicament.’
Our bodies are such an integral part of our understanding of ourselves; they are the physical manifestation of our identity. When someone loses a leg they need to renegotiate their relationship with their body. They may wonder whether they are still complete people, and what their body can still do.
That is what worried Helen when she was discharged from hospital. ‘When I came out it was a really emotional time, but there were basic questions I was asking about what I could and couldn’t do. I actually asked the doctors if I could still have sex. And these are the questions you ask. It’s really based on a physical level of “What can I actually do?”’
Many young, fit amputees will push their bodies, taking up rock climbing or mountain biking, testing their physical limits. Proving that they can still be exceptionally physical people is also a way of negating the label ‘disabled’.
‘The term “disabled” is very much a state of mind,’ says Helen. ‘If you see yourself in that light, where you’re incapacitated by what’s happened to you, then you are disabled. I think people who see themselves as incomplete and incapable don’t stretch themselves. I wouldn’t say it’s always been such a good thing, but I’ve always pushed myself, trying to prove to myself that I can do these things. It’s sometimes a bit mad. I’ve had some big mountain biking wipe-outs! But there’s almost nothing I can’t do.’
Accepting their changed bodies is difficult for amputees. But not as difficult as gaining the acceptance of others. Amputation is not private: ‘It’s in the public eye, you’re going to be seen,’ Helen says opening her arms and adding, ‘your body carries messages and this is carrying a message to the world.’
Most amputees don’t mind the innocent curiosity of children. Craig, another BK (below the knee) amputee, laughs about how some kids once came up to him in the supermarket to ask him if he was Robocop. He likes to let children play with his prosthesis. ‘And once they’ve touched it and they’ve pulled it, it’s over. For the rest of their lives they’ve had that physical contact and that’s vital. So next time they see an amputee they’ll say “Oh, that’s the same leg as that other other man had” – no big deal.’
But parents usually tell their children not to look, caught up with ‘doing the right thing’ (i.e. looking, but pretending they’re not looking). Or worse, they will stare openly. Frankly, most amputees would prefer it if you just approached them and spoke about it. ‘The single biggest problem with the public,’ says Craig, ‘is their lack of familiarity with amputees.’
Helen’s sister Claire has been involved with Craig for two years. He and Helen share identical amputations, Craig having lost his leg in a motorbike accident. The three of them joke about amputation being a ‘family affair’ and the fact that Helen is an amputee did help Claire to accept Craig’s amputation. ‘He was active and ambitious and that’s actually what drew me to him. The leg just happened not be there,’ Claire laughs.
Claire starts teasing Craig about how he’s always bugging her to massage his stump and I grimace involuntarily. ‘It’s like having your foot rubbed,’ Craig explains. Obviously. Your stump is where your nerves end, just like a foot. But I can’t help thinking it’s a little kinky.
‘Men have found it very sexy,’ says Helen of her amputation. ‘Some men really get turned on by it. Different things appeal to different people.’
On cue, I go trawling in the cyber sewer hoping to dredge out some filthy ameliatatists. Unfortunately they were all rather well behaved. Derik, an animator for Sesame Street, has a web page dedicated to women with bilateral hip disarticulation – that’s both legs amputated at the very top of their thighs. It bears the highly questionable title of ‘Most Beautiful – with wonderful bottoms below their hips’. But Derik’s intentions are pure. ‘This page,’ he writes, ‘exists to pay homage to this very special kind of woman, and to appreciate her for all her unique beauty,’ while the pictures show radiant women, fully clothed.
Feeling sexy is particularly important for most women and beautiful legs are an integral part of society’s sex semiology. Female amputees tend to wear aesthetic covers on their prostheses and can even get specially adapted ankles, which allow them to wear high heels. Helen has incorporated her uncovered ‘pole’ prosthesis into her sexual identity. ‘I definitely think there’s a bit of an enigma about it,’ she says. ‘You’ve got this leg that is hidden under all these parts and the socket.’ She even spraypaints her socket; lately she’s leaning towards metallic blue. ‘It’s a whole different body image for me. It’s a lot more masculine, but there’s still a femininity within this.’
But Helen’s main reason for choosing to wear a bare prosthesis is practicality. ‘I can walk through water, I can go into the sea with it, I don’t have to worry about damaging my leg, I’ve got this completely bionic-looking, robotic leg, but it’s also a fully functional leg.
‘There’s a huge divide between being disabled and being physically challenged,’ she explains. ‘When you are without a [prosthetic] leg you are physically disabled. You cannot be a fully functional part of society.’
A good prosthesis is essential to an amputee living a normal life. Apart from the fact that prostheses are incredibly expensive, Craig’s bone was very close to the surface of his stump and he was forced to walk on crutches for years. ‘Try carrying a cup of tea on crutches. If it’s a full cup you’re going to have a quarter by the time you sit down. And a lot to clean up afterwards!’ Craig says with a frustrated laugh. The medical aid scheme he was on paid out R2000 a year to amputees, which, according to Craig, ‘doesn’t even pay for the nuts and bolts in this thing.’ Eventually he had his leg donated by an organisation in England. It’s worth R75 000. ‘A guy climbed Mount Everest two years ago with this exact leg,’ says Craig.
For those you can afford it, parts that enhance mobility include shock absorbers and carbon fibre blade feet. Parts are imported at huge expense, distributed by a dealer and fitted by orthopedic doctors. ‘It’s like going to have your car serviced,’ says Helen. And the costs rise if you have to factor in a joint.
Keith is an above-the-knee (AK) amputee who lost his leg to a spreading cancer. That was just over a year ago and he’s still a little shy, even nervous, about talking about his amputation. Unlike Helen and Craig, he is not yet absolutely comfortable with his prosthesis. But he eagerly shows me how his hydraulic knee works.
Detaching a little black hook from the side of the titanium joint, he makes a few adjustments to his knee, changing the speed at which the hydraulics loosen the joint. Depending on whether he wants to run and walk, he needs to set his knee accordingly. He points to a thick tube below his knee. ‘That’s my torque compressor,’ he says. ‘It’s difficult to explain how it works, but it’s really made a difference.’
It’s much more difficult for AKs to learn to walk. Keith shows me the special method of kicking the leg out in front to lock the joint before taking each step. Although he knows where his foot is in the ‘pattern’, he can’t fee; if it catches on something, and sometimes stumbles on uneven ground. Lower extremity amputees seem to eventually get to a stage where they can actually sense where their foot is and how much pressure it’s exerting. This is facilitated by increased sensitivity in the stump.
An amputee’s stump is rich in nerve endings, most of them cut and scarred, and as a result many amputees experience stump pain. This is usually just a sensation of pins and needles, but can be a burning, tearing pain that can be difficult to alleviate. Neurological damage is also the most likely explanation of the phantom limb phenomenon.
Almost all patients will feel pain in a limb that they no longer have after an amputation. This gradually disappears, but many amputees still experience phantom limbs periodically for years after the operation. Helen describes sudden urges to take an uncomfortable shoe off a foot that is no longer there. Most of the time these sensations can be relieved by massaging the stump, but sometimes they seem to be psychosomatic. Craig says that sometimes he relieves an itch in his phantom foot by scratching his prosthetic one.
Kirillian photography, which records the energy levels around the body, has shown that an aura remains around an amputated leg. ‘In your subconscious mind, very deep inside, you’re still an entire person,’ says Helen. ‘Your subconscious doesn’t register the loss. That’s why you can walk with a prosthetic, because on a deep level you can still integrate with that functional part of your body.’
Down at the pub, Craig and his friends play a unique drinking game, the only rule being ‘no feet on the table’. Craig detaches his prosthesis, puts a bottle of beer in the socket and passes his leg around so everyone can take a swig. A toast to Craig’s amazing leg!
It’s a good laugh, but what it really comes down to is acceptance. ‘I’d like to this article to help people be at ease with amputees, they are exceptionally strong people! They’re not helpless or disabled,’ I babble enthusiastically.
‘Don’t overdo it,’ Craig laughs. ‘I’d hate to lose my handicapped parking bay!’