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How a bit of limbo-dancing, MS style, helped me out of a real jam


by Penny Stevens

Before I explain how, when and why a wheelchair user with MS ended up limbo dancing, there are a few things you need to understand about me. First and foremost, ever since my more tender years I’ve been an avid gardener. It’s to my eternal regret that I grew up in an era where earning a living from gardening was not seen as a fit and proper career for a girl. My school pointed, nay forcibly shoved me away from horticultural college and in the direction of being a secretary which I did for more than 14 years. And loathed it. Thank goodness times have changed for girls of subsequent generations. With hindsight, I suppose having missed out on being a horticulturalist did for me what flinging high octane fuel onto a barely smouldering fire does - served to ignite my passion for gardening as a hobby. But unlike the ephemeral inferno which dousing with petrol creates, my passion has stayed with me for more years than modesty permits me to admit. My son says I all but live, eat and sleep in my dearly beloved garden. MS has clomped its way across my passion for gardening, for both good and ill. Decreasing mobility, to the point of being a wheelchair user for 19 years, has obviously constrained what my green limbs and fingers are able to do. But there have been huge positives as well, some of which came complete with very welcome surprises. My mobility declined in lockstep with my ability to do what really I wanted to, in un-adapted garden. My first bit of good fortune was to be a beneficiary of Mid Cornwall Life Styles, a small local charity which gave work to unemployed youngsters and, rather fittingly for me, to people with a range of disabilities. The charity gave me the labour to remodel and re-landscape my garden to make it wheelchair conquerable. All I had to pay for was the materials, but they were limited to £500 lest their clients had latter day Capability Brown ambitions. Lady Luck certainly shined on me with the project. I had a really talented, fully qualified landscape designer who, although he has significant cognitive impairment, could still conceive wonderful designs but was no longer able to do the calculations. Happily, I could and did the maths. So, hand in glove, we re-designed my garden around five raised beds (constructed from old horse jump rails, which I find a bit ironic given that the last thing I can do is jump!). In these beds I grow anything from raspberries to radishes and roses to runner beans, all totally doable from my wheelchair. My team of ever willing, genial, conscientious workers included two young lads with learning disabilities. I see the whole bang shooting match as a magnificent testimony to how passion, liberal dollops of ingenuity and willpower can overcome disability. Another stroke of great gardening good fortune came in the form of winning £3,000 in an MS Society raffle. That allowed me to have a big, made to measure glass house manufactured and installed. It’s plenty big enough to house all my horticultural wheelchair frolics and follies and while away many an hour there, sheltered from the chill of Winter. Before I finally get to my ‘limbo dancing’, you should also know that I’m an intensely shy person, but at the same time, possessed of a streak of adventure, which some may say occasionally borders on the reckless. The fact that my little granddaughter calls me ‘Crazy Lady’ best describes that aspect of my persona. A few years back, I needed a new wheelchair and at the time, the NHS assessment would only provide a manual one, which would have been next to useless for running the village youth club and helping out at the village school. I didn’t have the means to buy the electric model I really needed. To raise the wherewithal to purchase ‘Daisy Boots’, as I came to christen my new wheelchair, our village heroically staged a series fundraising activities, one of which was, unlikely as it may sound, me doing a sponsored hang glide. On the day, I was strapped papoose like to the instructor. How on earth could a wheelchair user manage to get airborne I hear some of you ask. Well the problem turned out to be how to avoid being shot skywards prematurely. One moment I was standing there, lashed to the instructor in an ungainly bundle, with the hang glider’s wings flapping and billowing overhead, observing a man straining every sinew on the end of a rope to keep us on the ground. The instant the guy let go, we were catapulted skywards off the cliff edge and into thin air, jettisoning terra firma and terra immobility far away. How exhilarating and above all, liberating it was. The flight was supposed to last 20 minutes but in the end, it was more like 40 minutes because I was having such a good time. My only moment of terror, well more like mild apprehension, was how the landing would be, given my lack of mobility. But as it was, I was expertly manoeuvred back down to earth with all the gentleness and care of a mother placing her new born into a crib. This sponsored deed done, along with many others, the target was reached. However, two years later the NHS revised their assessment so I decided to buy another ‘posh’ electric wheelchair for outings, highdays and holidays. So, ‘Nellie Dean’ came into my life. It was Nellie and me who were to star in my bit of impromptu limbo dancing. T’was Spring, which, as Robin Williams so aptly wrote, is - for us gardeners - nature’s way of saying ‘let’s party’. I had gone off to my local garden shop to stock up on all manner of goodies. When I got there, I was delighted to see they'd installed a handicapped lift. What bliss. I could breeze up and feast on the delights on the top floor. The lift required a key to unlock it. A trained staff member was on hand and was delighted to help. I whisked Nellie onto the lift. The man pressed the up button and we ascended at the stately pace of disabled lifts. He wore a really gracious smile and told me that installing the lift meant they were now seeing more and more customers in wheelchairs, which he was very pleased to see. What a good-hearted man I thought, but with his next breath I realised his motives weren’t quite as pure as newly fallen Alpine snow; he let slip the fact that the staff use the lift to carry all the heavy stock upstairs! Being slightly claustrophobic, I usually detest lifts, but this one was simply a platform, open on all sides. When we reached the top and the safety barrier had gone up, Nellie and I shot out of the lift, like a rat out of trap, impatient to scour the aisles. Like many, if not all, disabled people over the years I’ve developed a host of work arounds to allow me to be as independent as possible. In this case, that entailed perching an outsized plant tub, with handles, on my lap, into which I flung all manner of planting paraphernalia. Once I’d done with my shopping I called the same staff member to help me get back downstairs, in order to pay and exit. We got onto the lift ok, but when we landed on the ground floor, the safety rail wouldn't raise, whatever my helper tried. Nellie, me and my garden swagger were well and truly stuck! Something else you need to know about me is that things can often send me into involuntary hoots of laughter. I guess most people’s reaction to getting stuck, as I had just become, especially if they are apparently vulnerable, would be varying degrees of tension, worry and panic. But In my case, it triggered a rising tide of giggles as it brought back memories of what had happened a few years before. I was visiting Godolphin House, a Tudor Grade I listed National Trust mansion near where I live. I got stuck in the lift there with the owner’s son long enough for him to recount its 500-year history to me! Time traveling forward, to the here and now, my ever-solicitous member of staff dived under the rail and went in search of the manager, whilst there I sat, smiling contentedly, contemplating the glories Spring would usher into my dearly beloved garden. Such a contrast to the expressions and demeanour of the other members of staff. They were looking at each other, at the floor and shiftily sneaking glances in my direction, with faces which betrayed a mix of embarrassment and worry. But they didn’t know what I knew. I’d been coming to this place for nigh on 20 years as a wheelchair user. However, I can stand and stagger a few steps. The manager finally arrived, having phoned the lift company. Try as he might, he couldn't get the bar to raise either. He was extremely concerned, as it was the weekend and he said he didn't know whether the engineer could come and rescue me before Monday. Having doubtless run through all other options in his mind, he offered to saw the rail off. To which I retorted, with some vigour - “watch and learn!”. Whereupon a look of total bemusement spread, contagion like, across his face. I promptly stood up and got out of my chair, grabbed hold of something for support and 'limbo-danced' under the rail, backwards as there was no space to turn around. I then stretched across the barrier in order to fold the back of my chair down and thence managed to get to the hand controls and ‘drive’ it under the rail. For the staff, who’d only ever seen me recumbent in a wheelchair, perhaps the sight of me now walking was as miraculous as for those who witnessed Jesus curing cripples. Or they were thinking of that dreadful, deceitful Andy from Little Britain? Whichever, my efforts were greeted with a round of applause from both customers and members of staff. Nellie and I darted away from our adoring public, in search of my husband. We soon happened upon him, only to be greeted with a somewhat tetchy "where on earth have you been?" to which I retorted “I've just been limbo-dancing”. This elicited an even greater look of puzzlement and astonishment than I’d seen a few moments ago on the faces of the staff who’d witnessed my act. I hope you find this amusing. I still think about it and smile. Penny Stevens (Secondary Progressive MS)


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Edited by Nigel Bartram and illustrated by Olga Hendel