I knew Jack from the earliest days of my rehabilitation. The night after seeing him I try to ready for bed, using one arm. I hold my left forearm tight across my stomach and pretend it has also been blown off. To remove my prosthetic legs I press a small valve, breaking the vacuum between liner-seals and socket wall, and pull my stumps out. With both hands this is easy, a single motion, I can press and pull, but with one arm it takes more than a minute. Then I try to peel off my liners – they are made of rubbery silicone and I can’t get the purchase I need with one hand. There’s a small split and I rip it open in my growing frustration. (These liners cost £400 and need looking after. I’ll have to order another through the NHS.)
When I’m free of all the prosthetic clobber, I slide across the bathroom floor with one arm and bum-shuffle into the middle of the shower tray, then stretch up for the controls but can’t reach. Normally I push up off the floor with one hand and turn with the other. There’s a huge temptation to use both arms now. I manage to reach by hopping my body up and knocking the lever. This is painful and I can’t get away from the cold water, and I gasp and sit under it as I wait for the heat. Everything is difficult with only one arm. I can’t pour the shower gel into my other hand, so end up squirting it straight onto me, and I find I have to wash my arm and hand on my chest and the suds go everywhere and in my eyes.
In the shorthand slang of the veteran amputee community, I’m known as a ‘double’, and Jack is a ‘triple’. Just designators for the number of missing limbs – and you might qualify it by adding ‘above’ or ‘below’ to indicate the height of the amputation in relation to the knee. (So when describing someone whose name you’ve forgotten, you might say, ‘You know, that double-above who was always smoking during rehab and has loads of tats and piercings now and works as a mechanic – yeah that’s the one.’) About seven years ago a new phrase entered injured-veteran slang. At a charity fundraiser or on social media, you’d hear something like this:
‘Mate, he’s going for osseo.’
‘Osseo?’
‘Osseointegration. He’s gonna fly to Australia and they drill out your thigh bone and stick a rod out of your stump.’
‘Shit, mate – sounds drastic.’
‘Yeah, but no sockets. They reckon people who have it can walk around all day, no dramas.’
‘Australia?’
‘Can’t get it on the NHS, he’s going to have to fork out for it himself. No sockets, though … How good would that be?’
Osseus is Latin, meaning bone – and integrates, to make whole. In this case, the integration is the bone of the residual limb, the femur, bonding with a titanium implant that extends out through the skin. A prosthetic leg is then attached directly to this. It’s sometimes called ‘direct skeletal fixation’, which better describes its benefits (and some of its risks). By attaching directly to the skeleton, many of the challenges of how to join the body to a prosthetic are overcome – there is no need for any straps, liners or sockets. For some amputees, where the traditional rehab route of sockets hasn’t worked, osseointegration is life-changing.
But it wasn’t offered in the UK in the early days – there were just too many risks. Because the implant sticks out through the skin, creating an open hole (or stoma), there is a permanent breach in the skin through which infection can enter; and to receive the implant, the bone has to be cored out during surgery, increasing the chance of fractures and deep bone infection. It’s also irreversible. The NHS wouldn’t sanction the procedure and said it wouldn’t be responsible for the complications or long-term treatment of those who had gone private.
But then a couple of soldiers took action. They’d never really been able to get the most out of their prosthetics – they’d tried every socket and every liner, switched prosthetists and limb-fitting centres – and had reached the end of the road. Their stumps were just too short. They lay on their beds, glancing over at their legs propped in the corner, and scoured the Web for anything that might help. They wouldn’t accept that there wasn’t a solution – particularly as they watched the friends they’d rehabbed alongside walking their way back to normal lives. They found a website with an amputee without sockets – her prosthetic seemed to float below naked stumps. They saved all the articles and videos and took them to their next appointments, to make the case to their doctors. They faced sucking-through-teeth cautiousness: too expensive, too experimental, too many complications and too high a risk of infection.
But instead of accepting their circumstances, and with nothing to lose (what’s the worst that could happen? they were stuck in wheelchairs and would only end up back there if it all went wrong), the soldiers saved money, begged funds from charities, sat on breakfast TV couches to put a bit of public pressure on the policymakers, then travelled to Australia to have osseointegration done privately. They returned walking further than they had since injury, often far further than other amputees who had previously been way ‘ahead’ of them. Their gait was better, they were getting fitter, were happier and were almost pain-free.
And you started to hear ‘osseo’ more frequently among the community. (‘He’s a double osseo now. Yeah, he’s crushing it. I’m going to go for it.’)
This was a problem for the system. These amputees had returned with far better outcomes than expected, and word was getting around – lots of doubles and triples wanted osseo now. The few early adopters really were crushing it, but there was still the potential for complex needs if it went wrong. No one knew how long the implants would last, or what would happen if they failed. Whatever the policy, the NHS would have to look after those who’d gone private if they had complications. A torn liner is easy to fix; the new kinds of hybridity that osseo promised meant far more complicated care.
In a surprisingly agile response, two surgeons who had spent the last decade of their careers patching up soldiers decided to bring the procedure to the UK. Despite some reservations, they saw how it could be game-changing for some – and felt strongly they had to stop people heading abroad to have it done privately, where anything could go wrong. They received ethical sign-off, and the money to trial the procedure on a dozen or so soldiers from Libor funds (remaking soldiers being the perfect use of the penance payments of the bankers).
Jack had turned up at the rehab centre a few months after me, one of the very young soldiers who appeared, having lost three limbs in a blast. I liked Jack. Despite his injuries, he was always smiling and joking and was a genuinely warm presence on the wards – to think of him was to see him smiling and laughing from his electric wheelchair. A few times we shared the same bay: you could tell he was finding life tough (which eighteen-year-old wouldn’t, after losing three limbs). He is a big man – good for soldiering, bad for amputee-ing – and had been left with short stumps. None of the sockets that were made for him seemed to work, and while most of us got up on our new legs and made progress, Jack struggled. I liked him for not hiding his frustration in that macho way some soldiers did (a sort of strange mash-up of gangsta-tough-guy and Brit stiff-upper-lip). He was open with the rest of us about how crap it all was, but still managed to be upbeat. So when I heard he’d put himself forward for the trial and was now a triple osseo, I gave him a call and we made a plan. I wanted to see how he was getting on. I also wanted to know what it was like.
We sat at Jack’s kitchen table. He had his short stubbie legs on,* and the chin of his low-slung British bulldog, Bruce, resting in his lap.
After we talked about the new house renovation he’d just finished, I asked if he had known straight away he wanted the procedure.
‘I was pretty good friends with Michael Swain,’ he said, ‘the first guy to have it done. He’d researched it and found the team in Australia. We were all in the day-room in rehab and Michael told us what he planned, and were like “Fucking sounds extreme” and wished him the best – “You’re the guinea pig,” we told him. And then I saw how well it worked out for him. As soon as they started the trial, I put my hand up.’
‘Were you anxious?’
‘Of course, yeah. But I had more anxiety when I was on sockets. They never fitted. I could never walk properly – that outweighed whatever issues I might have with osseo. I was in my wheelchair most of the day; I wore my stubbies for exercise, but that was about it. I saw the other guys, like Michael, getting on really well. I thought: as long as I get a decent amount of time on prosthetics, five years would be enough, but end up having to have the implants taken out – even if I have to have a higher amputation, I’m simply back in a wheelchair where I started. So I weighed it up. It seemed worth it.’
‘Must be amazing, feeling the wind on your stumps,’ I said.
‘Yeah, it’s nice; it feels like being naked – like going commando. None of the sweat and rubbing of sockets. And there’s no slipping. It’s as solid as rock. My sockets used to move about and fell off, and I was always having to adjust them.’
‘But there’s this thing I can’t get my head around,’ I said. ‘It’s the fact that you permanently have a hole in you, there’s a metal rod sticking through the stump – out of you. I always wondered about getting into bed at the end of the day and not being able to remove that final piece that isn’t you. I think that would bother me.’
‘Now it’s like part of me,’ Jack said. ‘When I tap on it, or even brush on something, it feels just like knocking the end of my kneecap. Hold on.’
He went to get a tool.
‘So it’s a four-millimetre hex key, and you tighten the grub screw that bites down and attaches the prosthetic.’
He gave the hex key a half-turn and the prosthetic leg came away, and I could see the rod and the hole where it entered his skin. The naked flesh of his stump and slight redness of the skin graft sagged around the implant. This was the future.
‘That’s the fail-safe.’ Jack was feeling around a small cylinder on the stem. ‘It stops too much torque or force going through the implant and the bone. It breaks before your leg does – or the implant does.’
‘Has it ever broken on you?’
‘Once or twice. If I have a bad fall, it just breaks these little pins inside the cylinder and the prosthetic spins round, rather than my bone spinning around. It’s a bit of drama. You need a toolkit to fix it, and spare parts.’ Jack was holding the implant. ‘They’re pretty sharp. I’ve ripped a few bed sheets – expensive ones. So I now put a couple of tennis balls over the end.’ He stroked Bruce, whose eyes had never left him.
‘And no one sees it any differently?’
‘It’s a bit ugly,’ he said. ‘But then stumps aren’t the prettiest, are they?’
‘Nope.’
‘To be honest, there’s so much feedback. It goes straight into your skeleton. If I’m on gravel I can feel the vibrations going up. I was like “wow” when I first experienced it … the crunching, it’s just so responsive. There’s no movement between me and the prosthetic; it’s directly fixed to my skeleton and much more stable …’ Jack tailed off. ‘The surgery is pretty brutal. I could put you in touch with the surgeons.’
‘That would be great,’ I said. ‘So, no regrets then – you’re happy with it?’
‘Before I had it, I was like: fucking hell, this is drastic. But now, because of what it’s done for me, it feels normal. Within two days of surgery they got me up and weight-bearing. Increased it gradually each day. By discharge from hospital, I was almost putting my whole weight through the implants – after only a couple of weeks. It was quick.’
Later, we went to lunch in a local pub. I said I’d pay, so Jack said we’d go to the more expensive one. It was great watching him walk. I’d seen him walk before, in rehab, but only between the bars in the fitting room, or for short periods in the gym. Now, nearly ten years after injury, when most people would have given up hope of any progress, he was walking confidently. I’d have to change the way I pictured Jack: no electric wheelchair. After lunch he gave me the surgeons’ numbers and I drove home.
In the shower, I try bouncing my body up and swiping my arm at the lever, but only knock it half-shut and slip on the shower tray as I land and bang my shoulder. I shout in frustration. I give up the experiment – it’s no fun – and use both arms to turn the shower off and swing myself out, pull a towel off the rail and drape it over my head and sit there, hunched.
I used to get angry at people who thought we were all the same. That somehow one amputee suffered the same challenges as the next. I tried to explain: We all rehab at different speeds, like any recovery. But even I, who was right at the heart of it, would sometimes look over in frustration at Jack, struggling to walk, and think: Come on, just try harder; we all find it painful, why can’t he do it? No matter how much empathy we have, it’s difficult not to group disability together. We talk of spectrums and severity, yet our brains simplify the world and we lose the nuance, assuming that those with the same disability will have the same challenges and experiences. Trying to shower with one arm reminded me of how differently Jack and I experience being amputees. The gulf between our disabilities is as wide as the one between me and an able-bodied person – maybe bigger.
I look at my legs. Trying to take them off with one arm had been hard enough, but I knew putting them back on would be harder: rolling a rubbery liner over the stump, getting it positioned so there were no air bubbles, so it didn’t rub and the leg stayed on, could take many attempts. Jack had told me as much. Donning prosthetic liners and sockets was often frustrating to the point of despair for a triple amputee.
I understood why osseo had been life-changing for Jack: seeing how he’d attached his legs with just a turn of the hex key; how well he walked; how much healthier he looked. One of the last things he said to me as we sat together having lunch was, ‘Osseo pushed me to lose weight. I felt like a bum before. I feel like more of a person now, and so much more independent – I’m more positive. More upright. I even crap better.’ I’d laughed at that.
I feel over the end of my stump and try to imagine a metal rod sticking out. I imagine holding on to the implant and moving it around, and my whole stump moving with it – a direct link from outside me to inside. I can’t quite do it, there’s something otherworldly about the possibility. Life-changing had meant body-changing for Jack. The difference was also in the language: Jack now attached his legs, I still put my legs on.
Why does the thought of osseo still make me uncomfortable? Yes, it’s extreme, but aren’t the changes to my body already extreme enough – why not go another step? It’s not as if I’d be ruining something that is beautiful. Familiarity has desensitised me to the ugliness of my injuries, yet I know there is something of the Elephant Man about my body. I sit, bent over my stumps, and try to see them afresh, in the same way anyone might pause to consider the strangeness of their body, the weirdness of a human foot or nose or ear. What’s not there is most striking – the absence of legs – and it flicks a switch in our expectations of normal, it’s a space that should be filled. Then my funny little right stump, ten years of muscle wastage making it much thinner than a thigh should be, with its deep trench of a scar running up to my buttock, so deep I can put my fingers into it and feel the tough ridges of scarring; and my left leg, which has a strange fold where the surgeons sewed up my skin – like the corner of a stitched cloth bag, leaving what the doctors called a pig’s ear. And it does look a bit animalistic – when I bend my knee, there’s the chestbuster that bursts through John Hurt’s stomach in Alien. It reminds me of that.*
The first few times I studied my body, in those early months of recovery, I cried with sadness. I tend not to look so closely now – it doesn’t seem very good for my soul. I know my injuries make people look twice in the street – they see the sleek tech – but it’s only when I take the legs off and peel away my liners that the full extent of what a bomb can do is revealed. Very few people have seen that. If scars tell the story of your life, then a bomb writes an ugly chapter. Yet I’m lucky; I can squish it all inside my prosthetics and hide it under the technology. Some people can’t hide their disfigurement so easily.
I dry myself and wrap the towel around my waist and bumshuffle out of the bathroom. I don’t put my legs back on, it’s nearly bedtime. I watch my partner from the doorway – she is in the kitchen, leaning against the counter on the phone. I’m reminded of those film scenes where the hero’s past is revealed. They have removed their shirt, or are getting out of the shower, and the love interest sees their disfigured back for the first time and runs their fingers over the ridges of perfect make-up-artist-created diagonal scarring. Somehow the hero is now sexier and their connection deepens. I’ve always hated that – bombs don’t do sexy.
A few years ago I was invited to the International Society for Prosthetics and Orthotics conference. It was a day of dry lectures. Each researcher, doctor or prosthetist stood up and told the audience of researchers, doctors and prosthetists their latest thoughts on socket developments. Lots of in-jokes and back-slapping. As an amputee, I seemed to be the odd one out – like being one of the ingredients at a chefs’ convention. It wasn’t the stare of strangers; it was the stare of experts, looking at my gait, alignment and set-up. You know, you shouldn’t pair that foot with that knee, it’ll invalidate the warranty. There were also a number of people who had knelt in front of me in the casting rooms of limb-fitting centres and wrapped plaster sheets around my stumps and pushed their hands up into my groin, looking for my ischial bone.
At the end of the day, with the room now half-empty – many attendees having already shuffled out of the rows, professional development points already accrued, mouthing ‘last train’ to their colleagues – the final slide quivered there, a stock image of a silver bullet above the words: There is no silver bullet. During the day we’d seen a series of presentations about the latest advances: pressure casting, MRI scanning, 3D printing, an hour on the benefits and risks of osseointegration, a few different lectures on NHS costs and failure rates.
The problem they were grappling with – whether you used the ‘old-fashioned’ craft of hand-casting with plaster-of-Paris gauze applied by a prosthetist, or the latest imaging and fabrication methods like the SocketMaster, a huge EU-funded machine that pushes multiple pressure-sensors up against the stump to take a 3D model – seemed to be twofold.
First, none of these methods could take a cast of the stump under the sort of dynamic loads and movement an amputee makes when wearing a leg in real life. Casting could only be performed static. As soon as you walked about, some allowance would have to be made for the body in motion and the socket would need to be adjusted. No technology could yet replace the dialogue between an experienced prosthetist and an amputee who could communicate what felt wrong.
Second, how do you attach a piece of machinery to the body so that it can withstand the loads required for it to be useful, but not cause pain and damage? With my sockets, there always seemed to be a compromise – to achieve a tight enough fit, I had to accept that there would be pain and the chance of some damage. The best alignment, which meant I could walk correctly, put pressure on my joints and bones – the risk was a future of osteopenia (loss of bone mass), arthritis or worse. For all the technology available to us, the prosthetic socket was still wholly suboptimal. It was only osseointegration – removing the socket altogether – that seemed to go some way towards solving the problem, yet it held the skin open for ever. In return for being able to walk again, the boundary of Jack’s body had to be held open permanently – that was the risk he had chosen to take.
Skin is the physical container of our body, and the boundary between ourselves and the world, protecting us from the assaults of physical injury and radiation; from the invasion of bacteria, fungus and virus; from the chemical threats of irritants and allergens. It insulates us, and constantly adjusts our sweat and blood supply to regulate our temperature. It stops what is inside us getting out.
Our very first understanding of the world was formed through the sensations of skin against skin: this mother–infant bond the start of a lifetime of interactions. It is essential to the way we navigate the world and is startlingly sensitive – a particle of grit rolled between the fingers, too small to see, can feel like a boulder. Close your eyes and it will feel even bigger. By sensing pressure, heat, pain, vibrations and surface, we adjust our bodies to what is around us. It’s one of the crucial ways we interact with tools – we grasp steering wheels and tap keyboards and push buttons, we manipulate and get feedback, we control our smartphones using the conductive properties of skin to change the electric field in the transparent conductor sandwiched in their screens.
And skin communicates so much of who we are and how we feel. It is one of the main physical attributes that determines how we see ourselves, and others. Sunspots, texture and wrinkles show how old we are and how hard a life we might have lived. Skin’s pallor reveals how healthy, tired or dehydrated we are, and if we smoke or drink. It can prickle with fear and flush with arousal. We have evolved to be almost magically adept at reading meaning in the non-verbal language of skin’s moving surface: the faintest blush or crease, signalling fear, attraction, confusion, sadness, embarrassment. I read him like a book: thick-skinned; thin-skinned. He got under my skin …
We alter skin. We exfoliate and moisturise it, peel it, mask it, cup it, cover it in make-up, lighten and darken it with dyes, inject it with Botox. We want it to be flawless. We mark it with tattoos and pierce it. It carries social, cultural and religious meaning. Some of the greatest human suffering in history is because of its colour.
And if you want to break someone’s mind, you go to work on the surface of the body, scarring, burning and disfiguring the skin to find a way to the soul.
Every now and again – once a month, say – there is a day when it feels like I am inside a cruelly devised torture machine. These are the days when the liner plucks at my pubes until the skin is pulled red and spotted with white-heads; or the socket edge rubs my groin to a raw, open welt; or my bone jars against the socket wall; or some pressure sore can’t heal inside the moist sweat of the silicone and is hot with inflammation – with blisters, sweat rash and ingrowing hairs. Or it’s just the sensation that I have spent the day walking through treacle, condemned to some purgatorial punishment of a Greek myth.
It is damage to my skin that is so often the reminder of my union with technology. It becomes the site of pain and risk – the messy edge where unforgiving technology meets skin and flesh. We all have a sense of this, and while rubbing shoes, itching contact lenses and uncomfortable earphones are an irritation, the musculoskeletal dysfunction or chronic skin breakdown and infection caused by the prosthetic interface are more serious.
* Stubbies are short prosthetics that don’t bend, often used during rehab before progressing to full-length legs, which tend to have a mechanical or microprocessor knee.
* I should remember the times I share a bath with my toddlers and they hug my stump and call it a dog, and even kiss it, and I am filled with a feeling that I can’t describe; it is unconditional love, blind to any cultural influence of what ugly might be, and I experience a sensation of utter acceptance.