by Melanie Reid
‘I just thought you might be missing the places where you used to ride,’ he said.
As another surprise, he managed to reserve me much-sought-after tickets to the final phase of the eventing at the London Olympics, and offered to take me. He didn’t over-complicate things. He wanted to make me happy again.
Dave, his easy home life utterly derailed, took on responsibilities he’d always successfully avoided. There was an earned nobility in accepting that your wife, once someone who needed nothing done for her, was now a dependent who needed constant support. By family tradition, we also tried to find humour to fend off the worst of it. Overall, my casting on this new stage darkly amused me. It made me feel as if I had morphed into some decrepit old duchess who must be waited on hand and foot. Plus, there were some old purgatories that, no matter my new physical handicap, I could not avoid. Tax returns were one such, a job always left to me and now very pressing but far more daunting, for eighteen months’ worth of mail teetered in multiple trays and overstuffed cardboard envelopes. And my hands no longer worked.
Dave, to whom paperwork is akin to anthrax, adopted a peculiar, pivot-eyed, facial twitch whenever I asked him where his P60 was.
‘That’s why I married you – so I’d never have to answer a question like that ever again,’ he said.
The paperwork was piled so high it had started to cut off the light coming in the windows. Reaching the files was one thing, lifting them another, separating the sheets maddening, and finding space to make new piles another challenge. My fingers were still not strong enough to open an envelope. In terms of dexterity, I was a secretary trying to do her job while wearing a pair of leather boxing gloves.
I tried very hard to persuade the kitchen to become mine again. In it I felt very strongly the dislocation with the past. Memories of the old days were everywhere, of those wonderful summer mornings when the house was full of visiting family or friends. I’d be first in the kitchen, leaning against the sink, nursing a huge mug of coffee, waiting for the beloved sleepy faces to come tumbling through the door – young and old, in nightwear, totally relaxed, sharing that blissful no-stress, can’t-give-a-stuff holiday feeling. And we’d laze around, catching up on the news, family gossip, intimacies, making toast, teasing Dave when he emerged, and he would reduce us to hysterics with his surreal insults and stories. Years of laughter hung in the air around our kitchen table; I couldn’t bottle it, but everyone present knew it was the best place in the world to be. In the same room, at the tail end of the day, I used to enjoy brief time alone, the part of tonight devoted to creating order for tomorrow: housewifing, clearing the table for the next day, loading the dishwasher, switching off the lights. The gentle ceremony of the night watch, slipping into bed after everyone had gone to sleep.
But so much of that had gone. Now there was no slipping out of bed first for me; no longer the thrill of claiming the morning, filling the kettle, waiting for everyone to congregate. Now I had to lie and wait in bed for my carer to get me up, and I was invariably last to reach the kitchen. I would listen to the distant fun, smell the toast, hear the hum of chat and yearn to be part of it. Often, by the time I toiled up the ramp into the kitchen to join the party, they were loading the dishwasher, news exchanged. I’d missed the best bits – or at least it felt that way. At night, perversely, it was solitude that was denied. I had to be put to bed; I could never enjoy the peace and satisfaction of the final check. The modern acronym is FOMO – Fear Of Missing Out – used to express the fear that all your friends were having more fun and excitement than you are. FOMO is just a re-tread of age-old human angst – the door we never opened into the rose garden, the hidden laughter of children in the foliage, the fun we missed. The games we were excluded from. Regret and exclusion.
Gradually, I came to understand that FOMO was probably my long-term fate. Like a bereavement, it was something that I was going to have to learn to accommodate. It has got easier but in those early days it was hard. Because looking after myself was so time-consuming, and I moved at a snail’s pace, I could not keep up with the world. There was little or no time to watch things, meet people, go places. I missed the fun and urgency and buzz of being around newspaper people, picking up information almost by osmosis. Wildly over-optimistic at first, I had hoped I might return to my desk and pick up my old worklife: the realisation that this was physically impossible came slowly but painfully. And then there were the lunches and get-togethers I couldn’t attend because they were up a set of stairs, or too far away; and after a while, once you’d said no a few times, people stopped asking you. Friends came to accept your perspective – that the venue wasn’t easy and there would be a fuss. Your rational brain knew that you were far better staying at home, but it didn’t stop the yearning inside. At first, the insecurity of not being in-the-know gnawed at you, then you resigned yourself to being an outsider. There would always be gatherings, loved ones, laughter, but they couldn’t be spontaneous, and you would never surprise, or be unobtrusive. FOMO does fade. Gently, like a liner moving off her berth, you start to slip away from your old life.
Chronic illness encourages the sick to adopt a social set piece: the sick role. The traditional one, which Aunt Averil was cast in, the passive victim of an epidemic, gave her a certain settled status in the twentieth century. Nobody asked her whether she was humiliated by her situation; I doubt she was ever asked how she felt emotionally. She was someone to be done unto. The traditional sick role assumes we should behave, cooperate, should want to get well – I think of little fictional Katy, laid up in bed with her bruised spine, unable to walk, dutifully learning patience and the love of God. She accepted the moral duty to be a ‘good patient’. In those same days of ultra-conformity, there was poor Averil, occasionally so desperate she tried to break out, refusing to read the Bible and becoming a bad patient – inconsiderate, protesting, fighting, trying to block her own breathing.
The established code of medical sociology reflects the belief of the majority of the public, who regard sickness as a form of deviance. Deep down, unconsciously if not consciously, the healthy world rather wishes we didn’t exist. But if we have to be sick, they’d like us to be good patients and accept the rights and obligations of the sick role. There’s an expectation that everyone should fit into this morality tale; it’s what the whole welfare system is based on. If the sick show a positive personality and a creative response to their plight, then they’re a triumph; they’re being successfully ill, finding solutions, treatments and therapies, ‘fighting’ their symptoms, ‘battling’ their diagnosis. The healthy approve of them. That culture was instilled in me: I was a shining light, always in pursuit of virtue in my accomplishments post-accident, hence, maybe, the popularity of my newspaper column. Hence, perhaps, the way a whole lexicon of war language is applied approvingly to illness, and especially to cancer. Nobody dies of cancer these days without it being said of them that They put up such a great fight. These kinds of semantics are being challenged increasingly in the twenty-first century, especially by a new generation of physically disabled people, pushing back the physical, rejecting the belief that there’s something wrong with them – and, accordingly, rejecting moral judgements. Over the last century Averil, The Invalid, has evolved first into a patient, then into a health-care user and now, via identity politics, into the militant for whom the body is a basis for political action. The problem is that wider culture hasn’t caught up and remains traditional: politicians still strive to lower the benefits bill and the qualifications for disability payments continue to be a battleground. Able-bodied taxpayers – and not, I suspect, just the reactionary ones – retain old-fashioned moral expectations of the sick.
For me, though, it was a quandary. I felt the weight of that moral duty to recover, but paralysis was not recoverable from. It was a dead end. A no return. What was I do? Even though I knew – and science knows; Christ, everyone knows – there is no existing cure for broken and crushed spines, not to try to get better at the ver
y least seemed improper. Hence the need to resist disability, the failure to accept. As a hopeless neurological case, perhaps one reason you employ warlike talk is on behalf of your family. Because no matter how grimly rational you are, you continue to fight your ill health to demonstrate to the people you love how much you love them and want to remain around them. Perhaps it’s the wrong thing to do. You never stop hoping you will improve, in some tiny way, for them. You never give up.
Today, wearied, battle-scarred as it were, I’m not sure it is helpful to use such imagery. In the beginning, newly disabled, I found myself facing the huge task of coping with the emotional and practical consequences, while aware that I felt both reduced from the inside and also perceived as such from the outside. A lesser person. If I was to display my suffering, show anger, self-pity, frustration, guilt, all perceived negative emotions, I might alienate people. And I needed people. And they expected me to conform. They said things to Dave like: ‘If anyone can cope with this, Mel can.’ My moral duty was to get well again, or at least to pretend that I was fine. I smiled brightly. I’d survived, hadn’t I? I felt bound to put on a brave face and say, ‘I’m fine’, so that everyone would be much more comfortable. This, I found, was a stereotype I fitted quite naturally.
There was huge solace, also, in work. Continuing to write as much as I was able fitted the approved code. I was fascinated by how disabled people had coped in centuries past, long before the welfare state. There was no special treatment. The damaged were expected to work to survive; and in turn they themselves expected to do so. The idea that disabled people could only do certain jobs is a modern construct. Work was the only passport to life, so they just got on with it, frailties, bowed bones, pain and all, and did lowly jobs on behalf of the more fit: they cleaned, they swept, they became street vendors, they laid out the dead, they did cooking and washing for others, and they nursed other sick people – once, on BBC Radio 4, I heard that sixty per cent of those who performed nursing duties in the eighteenth and nineteenth century had disabilities themselves. Interestingly, these people continued to define themselves by work. I could understand that, and as I toiled long, sore hours hunched over a computer, I was amused to think I was following a template laid down hundreds of years ago. My ancestors would have been proud of me.
Reacquainting myself with people was difficult. They only knew the old me and this new, short creature folded in a chair was unfamiliar to them. Some people cried. I found it flattering that they should care so much. Others were very cool and studiously normal; they’d obviously schooled themselves. Sheryl Sandberg said after she lost her husband that old acquaintances ‘looked at me as if I was a ghost’. I reassured my old friends, as expected, that I was fine and then taught myself to relearn them as people with newly working bodies; I noticed as if for the first time how they walked, and sat, and carried themselves. I deconstructed their ease of movement, their power, with envy. Hungry eyes. I went on my first trip to the city centre shops. Wow, how fast people moved. I was transfixed by how beautifully their legs worked, how easily their hips flexed, their buttocks swayed. In the bank it was so difficult to talk to the teller over the eye-level counter; and I felt buffeted and pressured by the lunchtime queue behind me. I used to be one of you, I want to turn and tell them: forever in a rush, groaning inwardly when a person in the wheelchair held me up. The bank teller was pleasant but I was trembling with exhaustion by the time I left. One day, three girlfriends, riding pals, came for a cup of tea together. I studied them greedily, those smart women, in sassy jeans and boots and nice jackets. We had a laugh and a chat, and then they left, and I watched them from the door as they swung their legs into their cars and sped off, and I knew that even by the time they reached the farm gates they were re-entering their busy lives, they’d be on their mobile phones, catching up on texts, calling people back, planning the rest of their hectic week. Long after they left I sat very still by the window, feeling cheated and jealous. The reasons to develop hermit tendencies were starting to mount up.
Meeting strangers, as opposed to friends, was something else again. These people did not know me, the real me. How could they? They only saw a person stuck in a chair, not me properly – me, tall, strong and dynamic. They could have no sense of what I was like, inside or outside. They did not know how I moved, or looked, or achieved. And I felt differently towards them. They were superficial; I almost felt I was wasting my time with them. How could they ever be as close to me as old friends? This person you see, I wanted to explain, isn’t me. This – tapping my breast bone – isn’t actually the real me, it’s someone else. Annie says she often feels she is hovering a foot or so above her own head, looking down on herself, thinking, ‘Who is that person?’ Strangers, you noted, treated you differently to the way strangers would have treated you before injury. Either you were invisible, or they were often too attentive, even patronising. It was amusing sometimes, how extraordinarily, cloyingly nice some people were, when they wouldn’t have looked at you twice if you’d been standing up. I didn’t like it but I tried my best to make it easy for everyone. In a way, you start to pretend you’re standing in for the real but absent you, a representative for a missing person. It seemed to be the only etiquette possible.
No relationship with home could be properly rebuilt without learning to drive again. The remoteness of the cottage was both its glory and its challenge. When you are paralysed, you must learn to drive with your hands: for paraplegics, with fully functioning upper limbs, this is less difficult. For tetraplegics, with limited arm and hand ability, it is more problematic. My determination to get back behind the wheel was absolute – cars had always symbolised freedom for me – but because I was still living in my head, rather than my head and body, I had little idea how scary it would be. As residents of the spinal unit, tetraplegics had been gently dissuaded from applying for the compulsory NHS driving assessment for as long as possible. Staff wanted our arms and hands to get stronger. And our heads. As I was to find out, it’s fairly traumatic to be faced with the fact that on top of everything else, you’ve lost such an intrinsic skill. This was not about refamiliarisation with old powers; rather it was radical surgery on your psyche.
There was a long waiting list, but eventually I was called to a mobile test centre, a lorry parked in the grounds of a semi-disused psychiatric institution on the outskirts of the city. It seemed an appropriate setting for what was possibly one of the most stressful days I’ve ever spent. I began it as someone convinced she was still a bold, experienced driver, unfazed by horse lorries, towing, and farm vehicles, and ended it as a humbled wreck, capable only of creeping along at ten miles an hour with a long line of exasperated motorists behind her – people she could see and hear in her mirror muttering: ‘For Christ’s sake, who let THAT out on the road?’
My assessor was a totally charming woman called Janet, who by the end of the afternoon I just wanted to hug and call Mummy. Best of all, she had dual controls. My most serious problem was gripping on the knob on the steering wheel with my left claw, to turn the wheel. At right-hand junctions, the feeling was that of a small child trying to stir a giant raw Christmas cake – the arm just wasn’t strong enough to grip the wooden spoon, let alone turn it. My right hand was operating a lever – push to brake, pull to accelerate. Every bit of automatic, unconscious driving experience from the past was rendered obsolete: I was starting from scratch. How indignant I was. Driving forced me to the core of my humility studies. Me, who had, at one point in my career, when terminally bored, been a part-time motoring correspondent, paid to drive flash cars? Nothing could prepare me for the infant-like helplessness. The human condition means, I think, that we all possess hidden pockets of arrogance, even the most self-deprecating among us. Deep inside, we nurture little kernels of pride, buried treasure. That day, mine were stolen.
The assessment took three hours, by which time I was so mentally shot that I almost didn’t care whether I’d passed or failed.
‘Well?’ I sai
d to the sublimely encouraging Janet.
She beamed at me. ‘Oh, you’re going to drive,’ she said. ‘Of course you are. We just need to make sure you get the right car for you, adapted so you can steer with your right hand.’
It was a painfully slow process building up confidence. For weeks my first Motability car, complete with hand controls, sat on its delivery mileage outside the house, taunting me. Preoccupied with other health issues, I found excuse after excuse why I couldn’t begin. When I did, forced by an exasperated Dave, it was on our mile-long farm track, up and down, dodging the potholes, going so slowly that dear Pip, our beloved dog, who was trotting beside, kept stopping and looking back at me. Gradually, as I persisted, my fingers softened and the car stopped surging and jumping.
At first Dave came with me, then left me on my own, another milestone of progress. Hard to describe how ridiculously momentous that felt, feeling so vulnerable and isolated on my own in charge of the car, yet also how free, mobile and independent. If you aren’t compromised in some way by health or disability, it’s probably hard to understand this; or to appreciate how insignificant things can represent huge landmarks. That afternoon I went up and down the track five times, then, the last time I reached the public road, took a deep breath and set off for the village. I went up the main street, successfully avoiding all cars, round the war memorial and back home. Left-hand turns all the way. A friend told me about her elderly aunt, who would only ever turn left at junctions – sometimes it took her days to get to her destination.