by Melanie Reid
19) If you’re young, be disabled and proud. Normalise it, be militant, embrace identity politics. Society will allow it. Don’t be like me. Happily, younger men and women with unconventional bodies are operating in a world where kindness and inclusivity are powerful social forces. They’re able to write a new narrative about the beauty in disability and flaunt it on catwalks. They don’t want to be able-bodied. They want to be seen as ordinary and one day they will.
20) The politics of incomplete spinal injuries are complicated, but chances are you may be incomplete if you’re reading this – more and more people in spinal units are there as a result of improved emergency protocols. When I was an inmate, one of the mentors from the local spinal injury charity was a man who walked on sticks. All the other mentors were complete injuries in wheelchairs. Within the spinal world, at least at that time, the focus was very much on catering for the needs of the latter and there was a certain attitude to those with some mobility. They were called – and the label had a certain edge – walkers. At Stoke Mandeville, where I once swam in the inter-spinal unit games (I came last by an embarrassing two minutes) I heard a woman who won a race bitchily dismissed as a walker – by implication, a bit of a cheat. Some in the wider disabled community regard anyone who seeks to leave behind a wheelchair as some form of betrayer. Their identity is firmly in a wheelchair and those who strive to escape it are letting them down. On some internet spinal forums, for every dozen messages exhorting the need to work hard and never give up, there will be at least one from the wheelchair user who reacts with weary cynicism to the evangelism of exercise. Could anything be more damaging for public perceptions of paralysis, one poster asked bitterly, than ‘someone hobbling up on stage and telling the audience that through hard work and perseverance, they were able to overcome?’ This emphasis on effort and willpower would make the public look at people in wheelchairs and assume they just weren’t trying hard enough, otherwise they’d be walking too.
21) It took me ages to realise how many of us are neither complete nor walkers, but exist in a non-functional torturous limbo in between. Our bodies were irrevocably damaged, but a lot less than some. But there’s nothing to do about it but try and keep what function you have going and hope science gets a move on before you get too old.
22) And the final secret weapon? A Dyson hairdryer. Spilt pee, leaking bags: sooner or later, every single spinal patient gets their trousers wet. The best by far secret weapon is the ridiculously expensive Dyson – immensely powerful, fast, and light to hold. Can’t face the hassle of getting people to change you? Pee not too smelly? Be rescued in seconds.
Acknowledgements
Snatches of this book will be familiar to those who have followed my journalism in ‘Spinal Column’ in The Times, but most of what’s here is the previously untellable story. In order to protect the identity of NHS staff, and my fellow patients in hospital, I have disguised most people, changing backgrounds, gender, injuries, and names. Suffice it to say that no fiction could do justice to the craziness, camaraderie, humour and utter despair of a spinal unit. My grateful thanks go to my fellow inmates in the unit in Glasgow, now part of the new Queen Elizabeth University Hospital. All of us were in our own way trying to make sense of a foreign land. In this account there is, unavoidably, a fair amount of bad language, bodily detail, pee, poo and vomit, most of it mine, but that, I’m afraid, is the unvarnished reality of chronic illness. Much though I wish it was, this is not a miracle story. Its message is not that everyone with a spinal injury, with enough hard work, will recover some function. Some won’t. Every single injury is different. There are no generalisations, no judgements. No one is less brave than anyone else. We all endure paralysis in different ways. My experience is that neurological improvement is more long-term, more persistent and possible, than the medical profession is able to allow. No one should ever give up hope. Equally, no one should be condemned for not trying hard enough. When you exist in the world of chronic ill health, hard work is a given – every hour, every day, whether seated or stumbling.
Gratitude beyond words goes to my beloved family – my husband David, my son Dougie, my brother and sister and their families in the US and France. While love gave me reason to continue, the NHS enabled me to do so. It seems invidious to mention anyone from a huge cast in Glasgow, but Susan Gilhespie, Mariel Purcell, Leslie Wallace, Christine Eden and Gillian Irvine did more for me than they will ever realise. In the immediate aftermath of my accident the St John Ambulance and crew of Royal Navy SAR Sea King XZ920 delivered me to hospital far faster than seemed possible. My then editors at The Times, James Harding, Magnus Linklater and Anne Spackman, were amazing, facilitating my emergence as a magazine columnist and saving my life in yet another way.
I am grateful to Martin Hunter for allowing me to use his photographs and to Greater Glasgow & Clyde Health Board for the MRI image of my neck. Revisiting the last nine years has not been easy and I would like to thank my editor at 4th Estate, Helen Garnons-Williams, my agent, Jenny Brown, and my copyeditor, Rhian McKay for their sensitivity and quiet encouragement. Countless small acts of kindness changed my world. My dearest friends know who they are, proven kindred spirits.
Especial thanks though to Judy, for proof reading, Carrie and Kathy, the emphysemic gym assistants, Janis for sending me a postcard every week for a year, and Eilidh, Sally, Mona and Susan for stocking the freezer with food for Dave. When I was due to come home, local farmers, unasked, arrived in a fleet of huge tractors to repair the farm track to our house. Annie Maw, herself paralysed, was a stranger who rescued me from despair, Gregor Fisher became the greatest of allies. So too Tanya Alexander and Sara Smith, who got me back on a horse, even though it ended badly. Thanks to Paul Lough for getting me driving again, Dennis Stevenson for mentoring and Angela Mudge for being supremely matter-of-fact about everything. Dr Judith Sim from Edinburgh University gave me insight into medical sociology, and Peter (Andy) Wrate taught me a valuable grounding in Buddhism. In the unlikely event I ever succumb to religion, it will be to Buddha. My readers from The Times have been heroically loyal, supportive, kind, clever and amusing, sustaining me through thick and thin. To John Witherow and Nicola Jeal, my present editors, thank you. At home, I could not have done without Janice, Barbara, Anna and Sarah; my now retired district nurse Helen; and my present and former GPs, who have gone the extra mile for me despite their workloads. Through the friendship of Mary Hope, I am honoured that the dressage rider Jo Barry chose to share her story of neurological despair with me. And finally, thanks with ribbons and bows on to Andrew Marr, an old pal, long-time hero and sadly now fellow crock, who has been kind enough, in the face of a vast workload, to write the foreword.
About the Author
Melanie Reid was an award-winning columnist at The Herald in Glasgow before reporting and commentating for The Times from Scotland and then on the Comment pages. Having broken her neck and back in a riding accident in 2010, she writes her Spinal Column in The Times Magazine every week.
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