by Melanie Reid
‘What’s your job then?’
I kept my head down, re-reading the same line over and over again.
‘Don’t want to talk, then? Not going to tell me?’ He sounded menacing. ‘Why not?’
For moral support, I started texting my friend Helen, who was meeting me at the platform.
My companion began a slurry monologue. ‘Well, why should I care, I’m back in London and London has the best pubs in the world and as soon as this train stops I’m going to be in the first one I see.’
The moment he got up and left, of course, I felt prissy and snotty. But in the strange equivalence of human interaction, of unconscious power play, he had turned me into a victim and made me feel trapped. Me, who would hand control to very few men, and then only when anaesthetised. What should any disabled woman have told a man like that? Fuck off, mate? I don’t want to talk to you? I simply didn’t know. As I said earlier, I don’t think I’m yet adept at being disabled.
Perhaps I will grow more relaxed about these things, but it is a lengthier and more complicated process than I ever imagined. I do keep trying. The fact is, drunks on trains notwithstanding, every time I have made the effort to go to something, no matter how much I have dreaded it both beforehand and initially, I have by the time I leave come to enjoy it. I have rarely gone home and felt anything but uplifted and glad that, despite myself, I made the effort.
Physically, I am much more at peace. Despite everything, I still manage to achieve more than the doctors ever thought I would. Every morning I stand up and do my faltering, non-functional stagger up and down the house, leaning on the frame, hovered over by people who love me and whose time I impose on. Some days it’s easy, some days it’s hard. There is no conventional linear progress, except in the sense that each year my stagger is marginally less haphazard than it was the year before, demonstrating that my neurological recovery continues in tiny ways. Short of the cure we must believe will come one day, the spinal cord, however, once damaged, remains damaged. There are no miracles. To all this I am reconciled.
There have been several near-misses, brushes with disaster, when I have fallen again, both literally and metaphorically. But I’m still going, trying, living, loving, laughing, driving cars in the fast lane, listening to the occasional piece of music at full volume like a teenager. Attempting to find merit and dignity and meaning everywhere I go and in everything I read and hear. I’m glad to be alive again: more patient, less judgemental; better at listening to the quiet people. As a full-time conscript in that army I never knew existed – that parallel universe of disabled, ill and suffering people – I now understand how relatively selfish and complacent I used to be, healthy and zooming around at a hundred miles an hour. Perhaps life, inevitably, is like that – until it happens to you, you have no concept of how everything could disappear in seconds. We all lack perspective on what matters. So please, pause and appreciate exactly what you have. Don’t get angry about discarded socks or wet towels dumped on the floor or traffic jams – these things are irrelevant. Don’t waste time and energy moaning about your job, your relationship, the weather or your unfulfilled aspirations. We only have one life and, take it from me, we should never waste it. So get busy living or get busy dying. Cherish the people you love, change your job, tilt up your face and kiss the rain, follow your dreams. Because you can.
Epilogue
The moment I press the button to open the rear doors of my disability van, the smell overwhelms me. In an instant, I am Mole in The Wind in the Willows, nose in the air, quivering, transfixed, aware of the invisible little hands pulling and tugging, all one way. I am Mole on that winter walk when he cries out, with anguish in his heart: ‘Please stop, Ratty! You don’t understand! It’s my home, my old home! I’ve just come across the smell of it, and it’s close by here, really …’
The aroma of a horse yard is unmistakable and intoxicating – that indescribably hearty, fermented reek of haylage, mixed with sweet clean sawdust and background notes of dung and sweat and stable dust. Almost a decade has passed since my neck break, and another four years since I fell off Nelly, and I have deliberately not been near horses for a long time – distancing myself from the emotions and the memories, disentangling from the love affair. But, in a mere breath, I am time-travelled, heart-emptied, back there, mud on my boots, beet pulp ingrained in my fingernails.
I have planned this visit as a positive farewell of sorts, but also as a distraction, because another early calendar Easter is looming, inescapable. Like tinnitus, the bitter little tape has already started playing its annual loop in my head: Good Friday, huh? Out of all the days of the year open to you, you had to go and bloody fall off on the one which two thousand years of the Judeo-Christian tradition had decreed as the most important and unforgettable, didn’t you? Good Friday, that eternal label of mankind’s spiritual salvation, of bank holidays and chocolate eggs, forever floodlit as your worst of bad Fridays. Spend the rest of your life savouring the irony of that one, you godless creature you.
The idea is to fill my head with nicer noise, with beauty and hope and the story of Jo Barry, an elite dressage rider who also tumbled down a rabbit hole into the nether world, but has wondrously managed to climb back out again. In December 2014, four days before Christmas, Jo was in the outdoor school exercising one of her top horses. Corchapin, a chestnut gelding known at home as Colin, was a younger half-brother of Valegro, the Olympic champion. Jo and he were in a very happy place. The partnership had had a great year, scooping several national championships, and they were fast-tracked for greater success on the UK Lottery Performance Plan. Jo, a former junior GB squad member, several times ranked Rider of the Year and a protégée of the Olympic gold medallist Carl Hester, felt her dream of getting onto senior GB teams was within touching distance.
She finished the schooling session and eased Colin into walk, letting him stretch and cool down on a long rein. Jo patted him. The session had gone well.
Nobody will ever know what happened next. Although there were people around, no one witnessed the incident. Jo was spotted lying motionless on the ground, Colin standing nearby, sand on his saddle and knees. Had he stumbled? Had something spooked him? Had he fallen on her? The priority was to call an ambulance and get Jo to hospital as quickly as possible. Once there, it became evident she had sustained serious head injuries. Scans revealed compression of the pons region of her brain. The pons is part of the brainstem at the base of the head; it’s the bridge for communication and coordination between spine and brain – possibly the most vital of the vital bits.
When she woke after ten days in an induced coma, Jo could remember nothing. In the weeks to follow, she learnt the extent of her injuries. She couldn’t walk, her speech was very limited and quiet, and the movement on the right side of her body was severely compromised … It was as if, she says, it had gone into a deep sleep. She had double vision. She left hospital after two months, walking by then, but horrendously weak and with all her fitness lost. Her life had been saved by her riding helmet but her career, far from going stratospheric, seemed doomed.
It’s just over three years later and I sit in my wheelchair by the edge of the same outdoor riding arena, watching the same Jo Barry training one of her promising young horses, already a winner at lower levels. When they pass me, so close I could almost touch them, they suck out my breath with the magic of what they create together: the sheer presence of the horse, the gleam of his coat, the creak of tack and soft thud of his hooves. And on his back, Jo, impossibly slight and still, holding the power together with her hands and legs and poise in the saddle. In their wake, as they pass, the air swirls. It is a kind of velvet violence, the same sensation you get from being really close to a professional ballet dancer performing on stage, when you glimpse the enormous power and self-carriage needed to create art. That place between idea and reality, between trying and not trying. When Jo asks, unseen, through her legs and hands, the young horse throws out his limbs in controlled grace, lea
rning how to stretch and collect and move sideways, his neck arched in soft submission. Rider and horse as one. My all-time fairytale. I find myself in a little-girl reverie.
Dreams are often lost but dreams can be found again and I am here, a witness to their turning. Jo’s catastrophe had a much happier ending than mine – fantastically happier. Every day after her injury, she dedicated her energy to getting her body and brain back. Four months after her accident, heart in her mouth, she got on a riding school horse. Her right side wanted to curl up and she had little control of it. She could hardly believe how difficult she found the basic requirements of riding; it was something she had started as a three-year-old and she was now in her thirties. How could it be so hard? She spent the next three months riding friends’ steady horses, battling the fatigue and allowing the movement in the saddle to rebuild her core strength and connections to her limbs. Sometimes she wondered if a comeback was possible. But muscle memory kicked in and her nerves started to reroute and reconnect. Riding at any level, but supremely so at hers, demands that the brain marshals and coordinates every bit of the body. Her sport, by sheer chance, offered her the most perfect all-body physiotherapy for neurological damage.
By summer, she was back on her dressage horses again. By autumn, she was competing. Her recovery was stunning. So was her dedication. Three years on, in every sense, she appears whole again and is back at the top, winning with younger horses, training with Carl Hester, creating art every time she asks a dressage horse to perform. Like everyone who has had damaged wiring, she monitors her body constantly. She’s a perfectionist. She says she’s not yet back where she was, but she nearly is. Her speech, when she’s tired, can be a beat slower, and she feels her right side is still marginally weaker. But her body is still improving; she gets hours of physiotherapy on horseback every day.
Jo on Humphrey winning again. A triumph of neurological recovery.
There are strange symmetries at work here although, horse-wise, Jo and I inhabited different worlds. The level at which she operated, a driven professional, was light years beyond me. Yet we were both victims of random chance and we know the implications of life-changing injury. And in our struggle to recover our bodies afterwards, we are both steely and committed. Neither of us, I suspect, knows when to stop trying. Perhaps she is one of the few people who really understand why I risked getting back on a horse.
Our accidents have had different outcomes, but hers is a remarkable triumph and mine … well, mine is not a tragedy. I’ve finally worked that out.
Afterwards, we sit talking in the barn between the rows of stables. One of the livery horses is reaching over his door. I allow him to explore my hair and my wheelchair with his rubbery, prehensile lips, dropping strands of haylage in my lap. His touch closes my throat and makes the roof of my mouth clot with emotion. I want to tell Jo about the beauty she creates with a horse, want her to know I understand her struggle and give her my blessing to go on to greater things. To ride on, although I can’t. But the words don’t come. They sound silly, corny, too fey.
Instead, I remind her that it’s only been three years since her accident. ‘That’s nothing,’ I say, surprised by my own intensity. ‘Nothing. Neurological recovery keeps going. It just takes its time.’ I tell her that it’s been eight years since mine – and only recently the toes on my right foot regained some feeling, while my foot placement is still improving.
She breaks into a rare, quiet smile. She gets it. And I caress the horse’s nose as best I can with my fist, then say goodbye.
Ten days later, Jo makes an astounding comeback and does what she thought she would never do again – winning the GB national winter championship with one of her young horses. Since then, her career has taken off again in an extraordinary fashion and she continues to sweep the board at major competitions, often achieving around the magic eighty per cent score. Hers is a story of fierce optimism, which gives this book its best possible ending.
Specialist Spinal Notes
There can be no realistic self-help manuals for life with a bust spine. No how-to guides on living with knackered bodies, numb fingers or clouded minds. No pamphlets on ways to stay patient, hopeful or alive. The complexity of neurological damage defies generalisation. We’re all variously stuffed in our own way and we have to learn how to cope. Here’s what I’ve found out.
1) Your hands will improve and will continue to improve. They will get stronger and less clawed. You will learn to cope with what you have better.
2) Get in as much gym as you can before you leave hospital. You won’t realise what you’ve lost until it’s gone. Private specialist rehabilitation is expensive.
3) Remember your shoulders will wear out. Take up wheelchair sport by all means but remember shoulders are not designed for propelling bodies. To preserve them, choose the lightest chair possible. Keep as thin as possible (it’s bloody difficult), and consider getting some kind of power assist if you’re pushing big distances.
4) Be assertive about being pushed in your chair by the well-intentioned but ignorant. Don’t let people move you around without asking. But do seek help when you need it. The vast majority of people are very kind once they understand.
5) Manual chairs are better if you can get by with one; obviously paraplegics can, but tetraplegics too. They’re easier, neater, lighter, less hassle, more flexible, less problematic on steps. Try power-assisted add-ons for manuals like dynamo wheels, SmartDrive, PowerPack, PowerGlide, etc., before you go for a fully powered chair. Lots of different devices around, like the Firefly or Batec motorised scooter attachments. See (9) below.
6) Power chairs are great if you have to travel any distance under your own steam but they can make you feel more paralysed and disabled. Plus they wreck the house, banging into things, and it’s much harder to get close to worktops, beds, etc. The choice is a minefield. Get specialist spinal advice. See (9) below.
7) Go to some of the big disability exhibitions – Naidex is the main one – and look at the gadgets, aids and inventions. It’s the best source of finding out who’s doing what. Technology is racing ahead and we must be hopeful. See (9) below.
8) I tried an exoskeleton (the Rex) and it was fun but bulky and utterly impractical for day-to-day life. For specific jobs, terrific – some surgeons and dentist with spinal injuries are apparently using them to continue working.
9) In the early days, don’t rush into buying the latest device/chair/mobility aid. All of us, a few years down the road, have lurking in the garage something expensive and unsuitable which we bought without enough experience, now gathering dust.
10) Get a colostomy if you’re a tetraplegic. Don’t wait until things are desperate. Do it as soon as you can. It’s life-changing; the single best decision I made. Wish I’d had it done before I left the spinal unit.
11) Remember you know your body best. Better than newly qualified district nurses, A&E staff, most general nurses, your GP. Tell them loud and clear what you need.
12) Indwelling catheters and bladder infections. My life was transformed by an open-ended catheter which ended six years of recurrent bladder infections. At time of writing, that situation holds. Touch wood. Qufora or LINC Optitip are available on NHS in 2018 – there will be more developments – researchers are now trying very hard on the catheter front. Keep pushing, keep asking the specialists.
13) D-mannose supplement. I started taking two pills a day at the same time I started the open-ended catheter. I haven’t had an E. coli infection since. D-mannose might be the reason, it might not – but I’m not stopping it to find out. There’s some scientific evidence supporting it, and several incontinence professionals have urged me to use it: it’s a sugar which is not absorbed by the body, but as it passes through the bladder it is latched onto by the ever-present E.coli bacteria, and the two things are harmlessly excreted together. That’s the theory. I like it. I’m going with it. I don’t cut down rowan trees either just in case I upset the fairies.
14)
Life as a para or a tetra evolves. It is like starting a new life and growing up. Where you are now is not where you will be in a few years’ time.
15) Please support the charity Spinal Research. There will be some kind of cure some day; the more we fund-raise the more likely we are to see it in our lifetimes. In 2018, research pioneering gene therapy to dissolve scar tissue within the cord is showing genuine, serious promise, funded by the Medical Research Council, Spinal Research and Wings for Life.
16) Ignore other people’s timescales, especially if you have an incomplete injury. Conventional wisdom says you plateau and recovery stops after six months, or a year, or eighteen months. Nearly a decade on, little things are still improving in my body.
17) The attitude prevailing in spinal units and the NHS is one of stifling expectation about neurological recovery. They don’t have the staff or budgets to do otherwise. They could be sued for giving patients false hope. Always bear that in mind.
18) If you like black humour, and let’s face it, you’ll never have a better excuse, study the cartoons of the late John Callahan. A movie of his life, Don’t Worry, He Won’t Get Far on Foot, came out in 2018. ‘I try not to dwell on paralysis,’ John once said. ‘Unless I want a Chinese takeaway and the person with me doesn’t want to go out in the rain to collect it. Then I subtly bring the conversation round to the fact that I’m quadriplegic. That way, I know I’ll be looking at egg foo yung quite soon.’ His fans included Richard Pryor, Bob Dylan, Robin Williams and Bill Clinton, but the disability rights lobby don’t like him. ‘When you see someone laughing like hell and saying, “That’s not funny,”’ P.J. O’Rourke once wrote, ‘you know they’re reading John Callahan.’