A few days after seeing Jack, I’m given the coffee I order for free. ‘It’s on the house,’ the woman says. I wonder if my prosthetics mean I am given this perk more often than others. I sit at the back of the café and open my laptop. There is someone approaching – it’s the barista, and I think I’ve left something at the till. She limps.
‘Sorry. Do you mind?’ She has an Eastern European accent. ‘I saw your legs.’
‘Oh yes?’
‘I wondered if you can help me. I have a bad ankle. And I might have to have it amputated. I’m just wondering what it’s like for you?’
I’m asked this surprisingly often. Someone has an injury (or their cousin does) to their knee or ankle that won’t get better, cartilage is wasting away or a bone won’t heal, and they need surgery. A doctor has mentioned the possibility of amputation. Sometimes their mobility is so reduced that they’ve been told prosthetics might give them a second chance. Most of all, they are in pain. But it’s hard to know where to start.
‘Sorry to hear that,’ I say. ‘Thanks for the coffee.’
‘Your legs – they look amazing, and you’re so fast on them.’
‘It’s okay. It takes some getting used to.’
‘How long?’
‘I could do it without a stick after about four months, but for it to feel normal, probably a year or two. I was lucky, I was given the best prosthetics and had all the rehab I could need. I was injured in the military.’
‘How does it feel?’
Describe the indescribable: what does it feel like to wear a prosthetic? Time spent as an amputee seems to numb the inescapable discomfort of it. It’s a bit like wearing a wetsuit material over your legs without the relief of getting wet, so it’s hot and chafes; and like wearing too-tight shoes soled with lead, which seem to tighten during the day while at the same time becoming loose, so that they slip and bump your toes and heel. I simply say, ‘It can be uncomfortable.’
‘So it hurts, yes?’
‘Yes, sometimes a lot – all I want to do is take them off. Some days it doesn’t hurt at all. You get used to it.’
‘You think I’d be okay?’
I couldn’t answer this, but ended up replying with some non-committal, upbeat pep-talk. In truth, no one could give her an answer. There was the risk of surgery, the lottery of phantom and nerve pain, the whole long, incremental process of socket-fitting and refitting, the years of becoming accustomed to the pain. The seemingly random flare-ups and complications that could turn you from independent and pain-free to suffering and immobile. It’s why doctors and patients tend to try everything to save a limb, before taking it off. But then so often, when people are given renewed freedom after amputation, they say the years of trying to save a damaged limb were wasted time.
I thank her as I leave. Yes, it’s okay today. In fact the prosthetics feel comforting, cocooning my stumps, and I’m walking on a cushion of air – it’s almost fun. If it had been a day of pain, maybe I wouldn’t have been so upbeat; maybe I would have told her to listen to the advice and not rush into anything. It’s no picnic, I could have said, but that might have been lost in translation. I know she’s still watching me walk down the street, trying to imagine.
In her book A Heavy Reckoning, Dr Emily Mayhew charts the medical history of the Afghanistan campaign. She describes how advances in medical science, techniques and technology managed to save soldiers who shouldn’t have survived, and she writes about ‘The Deal’ – that, like the myths and legends found throughout human culture and history, making a deal to cheat death has consequences. When you bring a body back from the brink there is always a price. For soldiers like me, she says, the price will be the ‘conditions associated with old age: hypertension, diabetes, coronary artery disease and chronic kidney disease (just for starters – there are probably others)’. I will age faster, and my life has been shortened. Everything that happened in the hours and days after injury was a negotiation: life now, in return for less life and poorer-quality life later.
I hated reading this. I was determined to prove her wrong – I would live a long and healthy life.
But I knew there was truth in what she wrote. Being saved did have costs. Even for amputees with the most successful rehabilitation, the relationship between body and tech is one that needs constant attention. And it’s not only us amputees; repairing the human body when it fails almost always has costs. We’re told about the medical side-effects – they’re on the back of the packet, or are read to us as we sit in waiting rooms – and we sign for ourselves, or on behalf of a loved one, that we have understood and consent. The extent to which we pay attention to those risks depends on how great our need is to be fixed, or to be pain-free, or to have a few more years alive. So often, when we fix the body with drugs and surgery and prosthetics, there is a trade-off and we enter into a relationship that has a price.
Watching a Parkinson’s sufferer’s uncontrollable tremor reduce almost to nothing as a doctor ‘turns a dial’ on a computer is astonishing. You can watch the clips on YouTube: the patient sits in a chair beside the doctor’s desk, shaking violently. The doctor is about to turn on a device implanted deep in her brain. We’re shown footage of her a few weeks earlier. The patient in the operating theatre, awake, an infection barrier of skirting around her forehead, and a group of surgeons standing behind, having drilled a ‘coin-sized’ hole in her skull. They push an electrode down towards the centre of her brain. Another medic talks to her, watching for any tripping of her responses that will indicate they are about to damage crucial parts of her brain.
Deep brain stimulation (DBS) is like a pacemaker for the brain. It is used to treat diseases such as Parkinson’s, essential tremors, dystonia, epilepsy and obsessive-compulsive disorder – and, if placed in other parts of the brain, even depression. The device consists of an impulse generator (a battery pack) implanted near the collarbone, a wire running up the neck to the electrode, and the electrode itself is placed in the centre of the brain, near the thalamus. It’s all enclosed under the skin. The device produces high-frequency electrical stimulation that overrides the abnormal brain signals that are causing the involuntary movements. (We have theories on how DBS works, but it’s an example of a medical technology we don’t fully understand; we just know that it does.)
Back in the doctor’s room, the patient is about to have the device turned on for the first time. Before the big moment she is asked to do a series of tests: touch her nose, touch the doctor’s finger, bring a cup to her mouth. She can’t do it. The shaking is uncontrollable. Then the doctor turns on the device. Deep in the brain the electrode sends electrical pulses into the neural tissue. The doctor starts to change the frequency until the shaking almost completely stills. The patient brings a cup to her mouth and drinks, writes her name, buttons her shirt. She hasn’t been able to do any of this for years and cries. Given how invasive the operation is, the outcomes are overwhelmingly good, side-effects are rare and, while DBS is not a cure and symptoms often slowly return, there is no question that this surgery can be life-changing.
During the last fifty years developments in materials, batteries and electronics have resulted in a huge range of indwelling medical devices designed to benefit diseases relating to every organ. Joint replacements, meshes to support organ tissues or defects in the abdominal wall, intraocular lenses for cataracts, cochlear implants, dental implants, pacemakers, valves and stents and artificial hearts, spinal-cord implants, brain implants – they are all becoming increasingly common, and a surprisingly large proportion of us (twenty-five million in the US alone) now rely on these invisible, artificial body augmentations.
But the body is not a bystander in all this – there’s a trade-off at the biological level. You only have to experience the wincing pain of sand in the eye, the redness around a splinter before it pusses out, the convulsing throat when you have swallowed something you shouldn’t have, to know how violently the body can respond to a foreign object. As I healed after injury, the shrapnel that flecked my arms and legs activated the foreign body reaction (FBR). My tissues first tried to ingest this debris (using phagocyte cells) in an acute inflammation response; and when they were too big or too metal to be ingested or ejected, fibroblast cells walled them off with scar tissue, creating a granuloma or cyst, and isolating them from the rest of the body. This shrapnel may stay locked under my skin until I die; it may migrate to the surface, to be picked out one day; or it may get knocked in the future, causing an infection that will need antibiotic treatment.
And indwelling devices are no different. Yes, they are made of carefully chosen materials that help minimise the intensity of the FBR, and there are rigorous sterilisation measures during surgical insertion; but, as with any foreign body, there is a profound effect on the tissue implants are placed into, and they can trigger the host’s inflammatory response. The devices are treated as alien and walled off. And in the gap between wetware and hardware – however small, however clean on insertion – there is the risk of infection.
Bacteria live in two ways: either planktonic or as encapsulated communities called ‘biofilms’. In planktonic form, they float around in solutions as isolated individuals. Like this, they are vulnerable to antibiotics and the immune response of the host. But bacteria are hardier when living in biofilms, mini-ecosystems that have been described as ‘cities for microbes’ – they benefit from strength in numbers, share genetic material and, critically, build themselves into three-dimensional structures that make them resistant to the host’s immune response and hard to treat with antibiotics. (The plaque on your teeth is an example of a biofilm.) And once the ‘city’ is no longer beneficial to the ‘success’ of the community, chunks of bacteria may break away, spreading infection around the body that can lead to septic shock and death. The gap between the body and a foreign object is the perfect environment for these biofilms to grow.
It’s a mark of what is at stake that implanted medical devices are now the most common cause of healthcare-associated infection (at between 50 and 70 per cent); it’s also an indication of just how many of us have something implanted. These infections need treatment with antibiotics, surgical revisions or removal of the implant. And, depending on the device, there is a risk of death. If your urinary catheter gets infected, which 100 per cent do at some point, the risk is less than 5 per cent; if it’s your mechanical heart valve, the risk is more than 25 per cent. And as the threat of anti-microbial resistance increases, we have fewer ways of dealing with it. It’s a problem of evolution: there are many more human hosts for bacteria to infect, and they become more resistant as they mutate to overcome our antibodies and antibiotics.
We tend not to get shown this side of medicine. We want to trumpet our successes from the rooftops and not dwell on what we cannot control – and controlling the inflammatory reaction of the FBR, and the infections that come with it, is still a struggle. It’s a frustrating side-effect, outweighed by the brilliance of the clinical solution implantable tech brings – we can literally save life by replacing and augmenting the body. But as we create more sophisticated devices, which interact with the body in new and subtle ways, the FBR becomes a greater problem.
We marvel at the bionic eye: a device implanted into the brain that can excite the neurons in such a way as to give a visually impaired person some sight. The device is shiny and futuristic – there is light where once there was darkness – yet the press articles don’t mention that the body begins to attack this state-of-the-art invention. Current bionic eyes will have, at best, an array of 100 electrodes placed carefully on the cortex. This results in the patient seeing a flickering ten-by-ten matrix of dots; the perfect patient may be able to make out shapes and some difference in edge, but the resolution is far below anything that might be counted as restored vision – it’s more of an aid to navigating the world.
In these types of devices (which interface with neural tissue), we historically used metal electrodes – they are non-toxic and can carry the charge to excite the neurons. But for the patient to see a spot of light (or a sound perception, in a cochlear implant), the charge has to be fired at a certain strength. The greater the current used, the more damage you do to the brain tissues that you are trying to activate – tissues don’t like being zapped (at the molecular level there are all sorts of things we don’t understand about the way the charge and spin of particles is critical to the proper functioning of cells – and adding a dose of ‘prosthetic’ current upsets the balance). While the patient may see the spots of light clearly when the device is first turned on (think crying in the doctor’s chair), the body is already walling off the device, insulating it from the tissues that need to be activated. So more charge is required to push through the scarring and get a spot of vision, and the device is ‘turned up’, which further damages the tissue, causes greater scarring. Over time, neurons die and the device becomes less effective.
But visually impaired people want these high-tech devices to show them more than a few flickering dots, which might just about be an aid for navigation. (There are other, smarter ways to find their way around: the white stick, the guide dog.) If you’re going to have electrodes implanted in your brain, you’re going to want it to be worth the risks. And if we want to make the kinds of devices that connect with the nervous system to replace sight loss with more than simply the most rudimentary spots of vision, then the interface between hardware and wetware will have to carry more information more precisely.
Because the metals of existing electrodes are stiff and inorganic – prime candidates to be treated as a foreign body by human flesh – researchers are developing new, clever materials that can sit more symbiotically within the brain. They mimic the tissues, reducing the FBR while still being able to carry the current needed to create a sensory therapeutic benefit. One solution being tried uses hybrid materials: electrodes coated in hydrogels seeded with stem cells that can grow synaptic connections between the device and the nervous system – essentially a living electrode, with a softer coating and less material mismatch between technology and living tissue. If the electrode is made of the same stuff (or nearly the same stuff) as us, there is less chance of an FBR and a better chance of more natural communication between the device and the body.
I’ve had a number of infections since becoming injured. I will have been in good health for years and then I’ll feel a bit odd and an area of one of my stumps, or an old slither of shrapnel in my arm, will flare up. My flesh will become hot and painful. Antibiotics will sort me out, but the pain is significant. It’s also mixed with the anxiety that maybe this time the antibiotics won’t work and they will have to chop off a little more of my leg. And even when I’m in good health, there is constantly some level of background pain. It seems to be the trade-off of hybrid living.
Ten years as an amputee has made me (think of myself as) a bit of an expert on pain. If I’m asked what wearing prosthetics is like, the first thing I talk about – perhaps with a little too much of the martyr – is pain. In the early days, when the pain was new and worryingly alien, I swallowed a palette of colourful pills and they did help, but the deal was that everything was experienced through a fog of nausea. So I made a conscious effort to change my relationship to pain, to try to live with it and come off the meds. (Too quickly, as it turned out, leading to an appreciation of what ‘cold turkey’ is like; and as I bent over a sick bowl, looking at the anti-nausea tablet I’d swallowed a few moments earlier floating in a puddle of bile, I begged the nurses to give me back my drugs.) In the end it took much longer to ‘go clean’ and I could only manage a gradual reduction. I don’t take pain-meds regularly now. I’ve learnt first-hand that the terms of the deal we have to enter into, when we take these drugs, isn’t worth it.*
We have alternative pain therapies: peripheral nerve-stimulation therapies that get right into the wiring of the nervous system. These indwelling devices work in a similar way to DBS – electrodes implanted next to the spine (or a nerve in the roof of the mouth, to target cluster headaches). They modify the pain signals so that the patient doesn’t feel them, or feels them as different, less painful sensations (sometimes called paraesthesia), like a tingle or pins and needles. Then there are softer solutions, some of which feel like throwbacks to witchcraft: acupuncture, transcranial magnetic stimulation, alternatives to pharmaceuticals such as cannabidiol, and virtual reality. Whatever the therapy we use, pain is still one of the hardest conditions to manage, and one of the most under-treated.
For everyday purposes, we all know what pain is: we burn our hand, it hurts, we need to make it stop hurting and we yank our hand out of the hot water. Put a little more scientifically: noxious (thermal, chemical or mechanical) stimuli to the sensory nerve cells in our tissues, called nociceptors, cause a signal to travel along a series of nerve fibres via the spinal cord to the brain, triggering actions that reduce and regulate the pain (the hand pulling away, and the release of endorphins and enkephalins – the body’s natural painkillers). This is nociception: the nervous system’s way of protecting us.
But we also all have a sense that nociception alone isn’t pain – pain is also the transformation of those bodily mechanisms into an emotional experience. We feel sad, angry and frustrated that we’ve burnt our hand. And while nociception is observable (we see the flinching hand, and can use instruments to measure signals firing in our nervous system), the emotion of pain is not. It is completely subjective. It’s no wonder those pain metaphors – it’s like a sharp, stabbing, crushing pain – and ‘Please rate your pain between one and ten’ are the only ways we have to tell the doctor what it feels like.
Knowing how pain works seems, to me, to be far less important than how much it hurts, or how long it will last. Pain caused by a specific injury or disease, which serves a useful protective purpose and then disappears as the body heals, is called acute pain. Pain that outlasts the normal time of healing, often defined as lasting more than three months, we call chronic pain.* This is when pain becomes a disease in itself. Why pain becomes chronic isn’t fully understood. We know that after an injury the pathways of neurons in the spinal column develop a heightened state of sensitivity. This is protective – part of the body’s way of reminding us that the hand needs looking after while it heals. But sometimes the neural pathways become hypersensitive, and remain so long after the injury heals. One theory is that a barrage of pain signals from an injury can amplify the message on its journey through the spine to the brain. This is sometimes called central sensitisation or ‘wind-up’. The pain is like an orchestra playing a tune: if the tune keeps playing, the nerve pathways get better and better at playing and continue to play the one tune they have learnt, long after it’s useful for them to do so. This, as far as we know, is what happens in patients with conditions such as fibromyalgia, irritable bowel syndrome and other forms of neuropathic pain.
And the longer we have pain, the more emotional it gets. It holds our attention, isolates us socially and stops us sleeping. We ruminate and catastrophise, and the anxiety surges. It makes us miserable – especially if it’s no longer linked to some injury that we can see, or the doctor can explain. Pain can become the disability. For many disabled people this is their reality, one they must come to terms with. The disabled feel more severe pain, and more often, than the non-disabled. This can be a direct result of an atypical body or a secondary condition: the pain of inactivity leading to obesity; bladder and bowel problems; musculoskeletal abnormalities; and strange neuropathic pain. Or the pain of interfacing with technology – the side-effects of drugs, the pain of routine medical procedures, the pressure sores of wheelchair use or rubbing prosthetics. To be a hybrid human is perhaps, for now, to experience pain.
It’s worth saying that being an amputee does bring a special pain that most people will never experience. Phantom pain is pain that feels like it is coming from a body part that is no longer there. Sometimes it is not pain at all, but phantom sensations. It’s often triggered by certain events: cold weather, for instance, or emotional triggers or (one of the most unpleasant, in my experience) forgetting you’ve lost the limb and trying to use it – imagine impulsively trying to kick a ball that bounces towards you, but the leg isn’t there: the ultimate air kick.
I once shared a hospital bay with an amputee who complained that his missing leg was frozen in an uncomfortable position, so that as he lay there, it felt as if his knee was bent down through the bed. This was strange and painful, and he couldn’t sleep on his back. And I met a single-below in rehab who was in a burning hell so bad that he had surgery to revise the nerves in his stump.* Another described his pain as like being invaded by crawling insects. And a historical example: after Nelson lost his right arm in the Battle of Santa Cruz de Tenerife (1797) he said it felt as if fingers were digging into his palm. For him this was proof of the soul – if his arm could disappear and still feel, why not a whole body?
What does a hot-itchy-stabbing-cold-pulsing-electric pain mean? My unique experience won’t be very useful, but I’ll try to describe it anyway. First, anatomically, when I am wearing my prosthetics, my feet descend to inhabit my carbon-fibre feet and tingle; but when I am in bed, they telescope up, so they are at the end of my stumps and become small and prickle. Some people talk of being able to move their phantom limbs, but I can’t; my legs and toes are fixed solid, and no amount of trying to move them does anything. Trying to can even trigger the pain, which builds the more I think about it – it’s best not to. And, perhaps most weirdly, as I write this, my limbs are becoming painful, as if I am engaging the pain pathways …
I can feel the bridge of my right foot now; it is there and the physicality of the skin is a sensation that makes me see the wrinkled whiteness of that skin in my memory. And my toes too are hurting, as if scuffed on a sandy beach and the salt is stinging them. And when they really hurt, once a month or so, it is in the dead of night, and hot shocks pulse and blip like bubbles through lips – it is an electric fence I can’t let go of; and sometimes it is a very thin knife stabbed into me and left in the limb to become a dull ache … But it’s always different and surprising. It can make me laugh, it can make me cry out involuntarily, it can force me from bed to put my legs back on for the relief of the pressure of the sockets.
Then there is the un-itchable itch, down in my calf, which comes every few months, and there is no solution but to endure and enter – as Dante described it – the eighth circle of hell, reserved for the very worst sinners, who were punished to suffer ‘the burning rage / of fierce itching that nothing could relieve’. And sometimes, if I step in a puddle while out walking with the kids, my feet get icy cold and I can’t get them warm, even hours later, and it is ice-block painful. Most strange is the huge wave of pain that fizzes from the soles of my feet when I orgasm – apparently due to the way our nerves are wired through the spine – a very intense mix of pleasure and pain. Whenever I’ve talked of any of this to doctors or scientists, they have nodded in understanding, but as soon as I ask why I have pain so long after injury or how it works, they start to shake their heads – they’re not sure. Pain is poorly understood. Pain is strange. Pain is part of the deal.
For all the pain and the risks of side-effects and the FBR and device failure, I believe there is something more hopeful that comes with having to live with the deal. I can only speak of my own experience, but despite the many costs that dependence on med-tech brings – the pain that can make me irritable and short with my children; the anxiety that has ruined holidays; the frustration that I can’t run for the bus, or play football, or dance all night – I also have a new experience of the world I wouldn’t otherwise have felt, and I have a feeling my life has more meaning than it once did. We know med-tech can change a personality: drugs can do it, and some people who have DBS report a change. And I too feel like I am changed for the better.
So often, all people can see is the deal. They look at a disabled person and assume they are experiencing only their disability, when actually it forms very little of their experience – they are more than just their disability. This won’t be true for all people. I know I’ve been lucky that the disability I acquired allows me hope, and to feel that, despite the costs, I wouldn’t want to change it. It’s hard to describe why this is.
Years back, I had an exchange with a woman. I’d been talking to a group of people about my experiences of injury. It went something like this:
She asked me, ‘How did you deal with your PTSD?’
I replied, ‘I’ve never had PTSD.’
‘Of course you did.’
This pissed me off. ‘How can you tell?’
‘Well, I was a psychotherapist – and by the way you talk about it all. Look at you.’ She waved a hand towards my prosthetics.
As much as I tried to tell her I hadn’t had Post-Traumatic Stress Disorder, that I was lucky and even accepted that PTSD might one day rear its head – there is often a fifteen-year post-trauma spike in cases, which I might fall prey to – she simply smiled and looked at me in sympathy. I felt powerless in the face of her conviction. I told her how everything that had happened to me actually felt overwhelmingly positive. I tried out some of the science I knew: that we all experience Post-Traumatic Stress after a trauma, it is part of the natural response; it was the D – the Disorder bit, which was a malfunction of the brain – that I hadn’t had. She nodded, and I thought she was going pat my thigh and say, There, there. What was so irritating was that she saw me as a victim, but getting angry with her seemed to be playing to her point, so I moved the conversation on.
The narrative around PTSD often means we don’t realise that something else might be possible. Around half of us will experience a significant traumatic experience in our lives, and fewer than 10 per cent of those who do will suffer PTSD. Post-Traumatic Growth (PTG) is the positive change someone can experience in response to a life crisis and, although it is by no means guaranteed, it is actually more common than PTSD. The growth can be felt in a number of ways: a new appreciation of life, a deepening of personal relationships, becoming emotionally stronger, changing one’s priorities and having a fuller spiritual life. When we hear this – that good comes out of suffering – it seems obvious; it’s an idea as old as civilisation.
Some people are better equipped to feel growth: support from strong social networks, from friends and family, and being healthy and financially comfortable helps – as do personal attributes such as resilience, optimism and being easy-going. It’s important to say that traumatic events are not a good thing in themselves; they often result in a feeling of life’s futility. It’s complex: PTG and PTSD can often coexist after trauma. You can feel lower self-esteem, trust others less, let yourself go, feel more vulnerable and still have a new appreciation of life.
People often feel Post-Traumatic Stress when diagnosed with cancer, but once treatment starts, they feel growth, life takes on new meaning and they have a closer connection to those around them. This is how I feel. And I’ve always had a strong feeling that the technologies that fixed me were vital for my own growth – for the euphoria I feel, to still be here. Assistive technologies have given me a way out.
* The cost of painkillers is well documented at the population level – in many countries there has been an opioid crisis of over-prescription and misuse. In the US the number of deaths related to opioids increased by 90 per cent between 2013 and 2017, rising from about 25,000 to more than 47,000. There were 1.7 million people addicted to prescription opioids, costing the country $78.5 billion each year. It is such a costly problem that new prescription guidelines have been introduced for doctors, and more funding has been put behind alternative pain-treatment research.
* Because it so often gets confused, it feels important to note that the word ‘chronic’ isn’t used to describe the severity of pain, but simply that it persists over time. A long-lasting pain that is mild would still be chronic. Even so, chronic is shitty because there is no end in sight, and that’s painful in itself, so we get confused. (A new term being coined is ‘enduring pain’. It better describes the fact that the pain persists and has to be endured.)
* To stop the phantom pain, he had a revision of his stump. The surgeons opened him up and found the neuromas – the painful clumps of nerve that often develop when a severed nerve tries to regrow – and, using targeted muscle reinnervation (TMR), grafted two severed nerves together to create a new connection that prevented fresh neuromas growing and stopped the pain.