by Melanie Reid
From then on, doggedly, and to a large extent unconsciously, I played the glad game. When those toes wiggled, a flame had ignited inside me. There was a chance that I was going to regain movement. For the sake of my boys, I was going to tackle this injury with every resource I could.
Had early events in my life shaped me into an optimist or was it in my genes? The writer and broadcaster Andrew Marr, a Scot by birth and inclination, has a motto, ‘Temperament is fate’; he believes that the attitude with which we approach life largely determines where we go. Hence the distinction between the classic English melancholic, the pessimist you might best describe as alone and palely loitering in some graveyard or other, and the Scottish Protestant, a kind of enduring optimist, cheerfully bound by work-ethic – Aye, lassie, the only place where money comes before work is in the dictionary! – but prepared to enjoy life nevertheless. Of the two national types, like Andrew, I fell into the latter category by both nature and nurture. This is no doubt because, as a child, there had been no such luxury as moodiness; my father had the monopoly on that, his moods ruled the household, setting the tone for the day; often the week. For anyone else to be sulky or depressed would have been too much for our mother to bear. So my brother and sister and I were brought up to regard bad moods as the ultimate indulgence, a truer stamp of a rude, spoilt brat than ponies or parties.
Escapism was through reading. And as a confirmed bookworm, in a time long, long before the internet, my formative years were indoctrinated by literary heroines from a previous age. It’s bitter-sweet now to revisit my best friends on the printed page – those feisty, tomboyish, ever-optimistic, old-fashioned little girls who acted impulsively, got into scrapes – and, little did I know it, set a curious template for my life. Re-reading them now – whoa! Have I been acting out some kind of WASP morality tale for fifty years, since first I ventured under the bedclothes with a book and a torch? Was I trapped in the moral fable whereby a nineteenth-century God visited terrible revenge upon disobedient, wilful, lively females? L.M. Montgomery’s Anne of Green Gables, while ever upbeat and hot-heated, was lucky: she survived unscathed but for a near-drowning and an unfortunate case of dyed green hair. Jo in Little Women was an inveterate tomboy although she managed to avoid injury. But look what happened to Katy and Pollyanna. Susan Coolidge’s heroine from What Katy Did, bless her, was a thoughtless harum-scarum, forever ripping her clothes and being late, who ensured her downfall by being defiant and sulky. Banned from going on a swing in the woodshed, she went on it nevertheless. The swing was dangerous, but her aunt hadn’t told her this, believing it was sufficient to issue orders to a child without having to explain why. When the rope pulled from the ceiling Katy fell and damaged her spinal cord.
Her once active limbs hung heavy and lifeless, and she was not able to walk, or even stand alone. ‘My legs feel so queer,’ she said one morning, ‘they are just like the Prince’s legs which were turned to black marble in the Arabian Nights. What do you suppose is the reason, Papa? Won’t they feel natural soon?’
‘Not soon,’ answered Dr Carr. Then he said to himself: ‘Poor child, she had better know the truth.’ So he went on, aloud, ‘I am afraid, my darling, that you must make up your mind to stay in bed a long time.’
The saintly Cousin Helen, also unable to walk, cause unspecified, comes to visit a distraught, depressed Katy, and teaches her the lessons of disability. Katy, she told her, must go back to school.
‘It is called the School of Pain,’ replied Cousin Helen, with her sweetest smile. ‘And the place where the lessons are to be learned is this room of yours. The rules of the school are pretty hard, but the good scholars, who keep them best, find out after a while how right and kind they are. And the lessons aren’t easy, either, but the more you study the more interesting they become.’
‘What are the lessons?’ asked Katy, getting interested, and beginning to feel as if Cousin Helen were telling her a story.
‘Well, there’s the lesson of Patience. That’s one of the hardest studies. You can’t learn much of it at a time, but every bit you get by heart, makes the next bit easier. And there’s the lesson of Cheerfulness. And the lesson of Making the Best of Things.’
And so it goes on, and so I re-read it after fifty years, ensconced in my wheelchair, part of me wanting to laugh very darkly, part of me feeling the hair stirring on the back of my neck. Cousin Helen spoke also of a lesson of Hopefulness and a lesson of Neatness. Katy must ‘to Love’s high class attain/ And bid a sweet goodbye to pain.’ The contemporary me winces at the cloying moral lesson but as a child I cannot remember passing judgement. Almost by osmosis, I absorbed it.
And Eleanor H. Porter’s Pollyanna joined Katy on the bookshelves of spinal disaster, a much more saccharine orphan altogether, who went through life teaching unhappy adults how to play the ‘glad game’ – the premise being that no matter how bad something seemed, there was always a reason to be glad things weren’t worse. And hey, guess what, Pollyanna, sunshine on legs, is hit by a car and ends up in bed, unable to walk.
‘But, Aunt Polly, I feel so funny, and so bad! My legs feel so – so queer – only they don’t feel – at all!’
She sobbed wildly for a minute. Suddenly she stopped and looked up. ‘Why, if I can’t walk, how am I ever going to be glad for anything? … Father said there was always something about everything that might be worse; but I reckon he’d just never heard he couldn’t ever walk again. I don’t see how there can be anything about that, that could be worse – do you?’
Pollyanna, who is, to be honest, rather insufferable, soon recovers enough to gasp: ‘There is something I can be glad about, after all. I can be glad I’ve had my legs.’ So pitch-perfectly gruesome was Pollyanna that psychologists coined the term Pollyanna Syndrome, also called Pollyannaism or positivity bias: defined as an unrealistic optimism; having an excessive (and even harmful) belief that all things will have positive outcomes, no matter what; a tendency to remember pleasant items more accurately than unpleasant ones.
But wasn’t it extraordinary? That two classics of children’s literature, two of my seed-corn books, were stories in which the feisty heroines met the worst fate short of death, the thing universally regarded as the ultimate catastrophe: paralysis. Oh, how transgressive did a young female circa 1900 have to be to be punished so terribly? Very little, it seemed. And in order to find redemption for offending true femininity, they had to suffer and strive to find a way back to normal healthy life.
In fairness, it wasn’t just women trapped in this kind of morality play. As a child I was entranced by an obscure short story by Rudyard Kipling, ‘The Strange Ride of Morrowbie Jukes’, practically unreadable now because of its inherent racism, but still intensely haunting, the story of a sunken village in the desert where ‘the Dead who did not die, but may not live’ had established their headquarters. Jukes, feverish, riding his favourite pony full tilt in the night – I think that was the bit I liked – tumbled into a vast sand trap where they incarcerated the Hindus who had apparently died of cholera but who revived just before their bodies were to be burnt. There was no way out of this mythical, bestial place where humans stole, murdered and ate crows to stay alive. ‘Morality is blunted by consorting with the Dead who are alive.’ Jukes never stopped trying to escape, of course, and finally escapes from living death when his manservant throws down a length of rope and hauls him up the steep sand walls.
So they had lived with me over the years, and so they must have returned to crowd my unconscious during the long nights in hospital, that motley headstrong crew, the ones who found a way out of scary situations, who escaped paralysis and the fate of the Dead who did not die yet may not live. (A pretty fair summation of paralysis.) Anne, Katy, Jo and Pollyanna, Kim and Mowgli and Morrowbie Jukes and Stig of the Dump and Scout Finch and the cast from Swallows and Amazons, Nancy, Peggy, Susan, John, Titty and Roger, forever optimistic, always turning adventures into triumphs. Perhaps my psychological battle to refuse to accept a bad
diagnosis was half-won on stern, old-fashioned bookshelves, all those years ago.
It’s a dangerous game, looking back and granting bits of your life significance in hindsight, making the past fit the present, making links and causations between random events decades ago and reinterpreting them in the light of today’s random events. But somewhere along the line, for sure, I was imprinted with the knowledge that it was always best to be positive. Nobody ever gave up in my world. False hope was always better than no hope. You could never be sure how things would turn out. I always believed that my injury, terrible as it was, was just one more challenge I was going to overcome. Sometimes the odds against you are stacked so high that there is nothing left to do but ignore them and fight. Against all the medical evidence, perhaps out of sheer stubbornness, I decided I was going to reclaim myself; I was going to do it because it was my body and nobody was bloody well going to take it away from me. Not without a fight. That for the sake of those who loved me I could come back from this in some shape or form. I knew I was strong, both mentally and physically: a coper, a sceptic. Nobody told me what to do. My job was to test the evidence.
Beneath the bluster, of course, I knew the realities of spinal cord injury – there is no repair, no cure for paralysis – but I convinced myself that it was worth giving it a go. I had nothing more to lose. When Dr Purcell told me, with the mannered professional calmness of the spinal consultant – how often has she had to say those awful words? – that I would go home in a wheelchair, I told her that, with respect, I was going to try and prove her wrong. In response, I remember she tilted her head to me, an acknowledgement of … what, mutual respect, yes, but also sadness, weariness even. Hers was a tough gig.
Dr Purcell wasn’t the only one giving me wry looks. Susan, the queen of tough love, the creature I called the Hobbit because she was not tall, did it every day. It must have been tedious, trying to manage my expectations. She had had me from the start. Much later, I saw her initial paperwork for me, filled in within seventy-two hours of admission. After the rectum test by doctors had found no response, Susan, according to standard international practice for spinal injury, had carried out a pinprick test to assess how much sensation I had below the break in my neck. The answer was nothing. Seven-eighths of my body was a strange, warm-but-dead thing attached to my head and shoulders. Accordingly – how brutal it looked – she simply scored a thick black diagonal line through the section of the form relating to mobility. My chances of walking again were dismissed. Accordingly, my bleak Asia A classification. She had filled in the form after our first meeting in the high-dependency ward. In the box asking her to comment on the patient’s understanding of her injury, she wrote: ‘Knows she has broken her neck and back. Understands she is paralysed but says she wants to get better.’ The words were cool and objective. Later, we joked about what she should have put in brackets after it to underline the extent of my delusion. ‘Doesn’t have a clue, poor fool.’ Or even: ‘What a nutter.’
After my things-could-be-worse moment, but well before the toe wiggle, I had tackled Susan on my prognosis.
‘I’ll be able to walk on crutches, won’t I?’
This tough, cheerful woman, a real no-shit-sheila, shook her head. There was no false hope in spinal units, not on her watch.
‘No, because you have no abdominal muscles. Even people with abdominal muscles tend to give up on crutches in the end, because it takes too much effort.’
‘But I’ll use the crutches that go in your armpits.’
‘Nobody uses those any more. They totally wreck your arms.’
Traditional arm crutches, the type we think of from world wars past, are rarely used, in the UK at least. Used for any length of time, they can cause sores in the armpit and induce paralysis in the arms and hands. Saturday night palsy, it used to be called – from when you drink too much and fall asleep, your arm slung over the arm of the sofa. Or, even more quaintly, honeymoon palsy, when you fall asleep with your arm under your partner’s neck. Or take away the joy of drink and sex, and it’s just called plain crutch palsy, for the halt and lame, when the radial nerve near the axilla is compressed. Any kind of crutches, I was to learn, are of minimal use by the paralysed. Spinal injury is a planet rare and cruel unto itself. Bursting all available balloons, Susan told me that my big goal was to see if I could ‘transfer’ independently – that is, move myself from wheelchair into bed and back out again, using my arms to lift myself, swinging my bottom across from one seat to another. But this was not guaranteed. It required considerable arm and shoulder strength and my injuries might rule it out. My size was against me, because I was tall and strong and quite heavy, not wiry or petite.
She didn’t quite spell it out to me that without the ability to transfer I was probably destined to spend the rest of my life being hoisted in a sling by two carers, but the implication was clear. I could work it out for myself. Daily hoisting was one of the worst experiences of my injury, a humiliating process and a fate which I was utterly determined to escape.
For everyone with a spinal injury, there was an elephant in the room. It was that looming, enormous question – will I ever walk again? – which haunted you in every quiet moment of your day, and at night was answered by your subconscious, when in your dreams you sprang to your feet and danced around, crying yes, yes, yes, I can walk again. Waking, you had a fleeting sense still of the elephant’s great grey hide pressing against you; could feel its hot breath on your neck, nagging you. Will you? Won’t you? it asked, not unkindly, but persistently. So everyone wondered, but pretty soon sensible patients accepted their diagnosis and the elephant went away. Then you got patients like me. One day I was in the gym on the handbike, sitting in my chair while my arms and shoulders cycled a few kilometres. Next to me, on a similar machine, only his had mechanised foot pedals, was Stoical, my acquaintance from hand therapy, whose feet were strapped onto the pedals, legs revolving.
Equipment-envy was my most recent affliction. Everywhere I looked I saw bits of kit I wanted to utilise to get better. Why wasn’t I on a machine which did that? I was a little shy of Stoical; he seemed very sorted, knowledgeable, self-contained. He wasn’t hanging around. I wanted to be like him. I plucked up the courage.
‘When do you think I’ll get to use the leg bike?’
He looked at me, glanced at my legs.
‘Are you complete or incomplete?’
‘I don’t know.’ I had never heard the expression.
He was trying, in his own plain-speaking way, to be gentle.
‘If you’re incomplete, you can get some recovery. If you’re complete, you never do. You must be complete.’
Next opportunity I had, I asked Susan about complete or incomplete. Complete spinal injury, she said, is Asia A, when there’s nothing below the break. Incomplete means some of the nerves are still connected and you may get fragments of movement and power back.
‘What am I?’
‘Complete.’
‘So I can’t go on the leg bike?’
‘No.’
In the absence of anything else to comfort me, I processed Susan’s words the only way I could – as a challenge. My family told me, as families have told loved ones with broken spines since time immemorial, that if anyone could do it, I could. Mindset was all. Change your attitude and you change your world. Temperament is fate. So I believed them.
Dear Dougie whispered: ‘PMA.’
‘What does that mean?’
‘Positive Mental Attitude,’ he said. ‘It’s what young people say, Mother.’ PMA in the face of all the odds.
By then, a very special mentor had adopted me. After my accident, piles of letters and cards had arrived for me, both in hospital and at home. For many months I was not capable of facing them, mentally or physically, and Dave kept them from me. To open them required reserves of manpower, willpower, curiosity, emotional strength. Focused on survival, I had none of those things to spare. Eventually, after several weeks, a friend persuaded me to
face a few, and I discovered a clutch all with the same handwriting. Annie Maw, a warm and wonderful stranger, had entered my life. Although she got no acknowledgement until much later, she continued to write to the hospital faithfully once a week for the length of my stay. Soon, although she didn’t know it, she became one of my inspirations. Paralysed in a hunting accident eight years before me, she drew upon her own experience to throw me lifelines, solace, dreams, and a deeper sense of understanding. She was a poetry lover and blessed me with John Masefield’s ‘An Epilogue’.
I have seen flowers come in stony places
And kind things done by men with ugly faces,
And the gold cup won by the worst horse at the races,
So I trust, too.
I did trust. There was no choice. In the beginning, my whole body was as dead. Then came the strange internal sensations in my legs, and after a few weeks the vaguest awareness that my legs were being touched when the nurses washed me. A tiny bit of feeling returned to my perineal area – I could also tell when my bottom was being towelled dry. Wasn’t this a hopeful sign? Minimal as the sensation was, it was enough to help in the long dark hours when one seeks, desperately, for something to hold onto. The changes were too small to log day by day, but over a little while I also became aware of sensations in my feet. Around my right heel, I could tell – just – when someone grasped my heel. It wasn’t like normal skin sensation; it was clouded, far distant, a faint signal from light years away. My legs began, as it were, to regain some minimal consciousness. Occasionally I managed to convince myself, usually wrongly, that I was getting some feedback from my joints. This feedback, known as proprioception, is an unconscious facility which we take gloriously for granted until it deserts us. If you have a normal spine, your nervous system chatters constantly and happily to your brain, telling you where your limbs are; it advises when the left knee is bent and the right knee must lock to bear weight; it tells you if your ankle is facing outwards, your foot misplaced, your hip is twisted. I kept trying to guess at what angle my legs were lying in bed, only to be disappointed when the nurses threw back the blanket.