• Sheila Excell

New wheels – a saga in five acts

Before I launch into my tale, which I very much hope will raise the odd smile and chuckle, I’d like to share how I came to write this. In the 35 years I’ve had MS, I’ve got well used to the downs it brings with it. But with an incredibly supportive husband, two daughters, three grandchildren and others, I’ve always bounced back. At heart, I’m a very positive person. I certainly try to be bright when I am out with people, but believe me, when I’m at home I quite often shed the odd tear. It does help and is there anything wrong with it? I don’t think so. It helps to relieve tension.

I really thought I had accepted my condition, but when, in short order, my husband, Tony, was diagnosed with Parkinson’s, my dad passed away, we had to have our dog of 14 years put to sleep and my carer was away for a long stretch, I was really struggling. And then I learned of Nigel’s project to edit a book of funny stories about things which happened, only because of somebody’s MS. I won’t pretend it set everything to rights, but it gave me lots of pause for thought and reflection. Going back through the years, despite the irrefutable fact MS is a horrible illness, I realised there was plenty to laugh about, even if that wasn’t always obvious at the time. And, have my Tony and I laughed about some of my and our escapades and scrapes!

My new wheels saga begins when, with some trepidation, I inform DVLA (the British driving licensing authority) that I can no longer reliably and quickly enough operate the pedals of the car with my feet. I love driving and was fearful that my licence would be taken away. It would have been a real body-blow, my life would be turned upside down (yet again!). When the DVLAs answer arrives, I pick the letter up, hands trembling and simply stare at it, full of impending doom, every bit as though I am trapped in front an out-of-control steam roller, about to meet my maker. I’m sure you can imagine (and maybe even heard), the whoop of delight and relief when I see that I can continue to drive, albeit only with a car with controls adapted to my situation. That means getting an automatic, but little matter. Yippee! I can still drive😀😀😀😀😀.

Around this time, I also need to start using a wheelchair. Psychologically, I find this very tough indeed. I remember back to when I was diagnosed with MS. All I could see ahead of me was being wheelchair bound, the beginning of the end. That’s bunkum, of course, as I now know. But I am as stubborn as any mule and resisted, fiercely. I begin to have heated exchanges with Tony, until he says, “If you don’t take to the wheelchair we won’t be able to go out as a family”. He’s right of course, so I am compelled to give in.

Back to driving. We decide to purchase what was for us a rather posh car, albeit three years old. It is an Opel Escona 2000 automatic, if that means anything to you of a certain age. In order to get to the garage, we have to take a train, which means my first outing in the wheelchair. This turns out to be part one of the saga. I don’t remember much about the train journey, other than the fact that it was an old slam door charabanc and that my husband and I are unceremoniously ushered into the guard’s van, (disabled travel 1980s style!), so I guess we didn’t encounter any great difficulty at that stage.

On alighting from the train, walking along the platform, me in my wheelchair for the very first time and feeling most peculiar, an elderly gentleman somewhat condescendingly pats me on the head and says to my husband: “There, there, isn’t it a shame?” I’m shocked, stunned, horrified, furious and much more. Firstly, why address my husband and not me? Thinking about it now, the phenomenon of not addressing a disabled person, directly, was obviously the reason why BBC radio entitled its long radio disability programme: “Does he take sugar?” How utterly patronising, as though I’ve lost all my faculties, just because I am in a wheelchair. As if to prove how wrong he was, quick as flash, I retort with a viperish:There, there, it’s a shame that you’re so ignorant”.

He is so surprised that I’m actually capable of speaking I don’t think he knew what to do with himself and simply scuttles off, tail well and truly between his legs. Tony pushes me away, ready to burst into tears. What an earth goes though people’s heads I angrily ask myself? Are they so stupid as to think they’re uttering words of comfort, or are they just woefully insensitive? I can only imagine it is his cack-handed way of saying he is genuinely sorry to see me like that. How times have changed, in the main.

Onward we go, out of the station and onto the high street for act two. At the bottom, we have to cross a busy road. As we approach our crossing point my anxiety levels begin to sky-rocket. My head starts to fill with all manner of disaster scenarios. Tony is of course totally new to ways of pushing a wheelchair. Moreover, how to put this without upsetting him and causing him to censor the following, he’s a man given to action rather reflection. More of a bull than an owl. Anyway, he spots a gap in the traffic and makes a dash for it. To be fair, he had no choice if we didn’t want to wait for hours as the road was very busy.

On reaching the other side, in his haste, my Tony forgets to tilt the wheelchair back, so the front wheels ram against the kerb, with an almighty jolt. We come to a crunching dead halt. Such is the force of the impact I’m unceremoniously catapulted out of the wheelchair and sail, headlong, over the pavement and into an empty shop doorway! It’s at moments like this many say their lives flash before them, but it all happened so quickly there was no time to have any thoughts, or feelings, other than the simple and overwhelming sensation of hurtling, headfirst through the air. Mercifully, only my pride and self-respect are hurt. Upon landing in a sprawl of limbs, I quickly look back and see Tony has been less lucky. The counter-veiling force to me being ejected into space was him being smacked by the wheelchair handles in a very painful place indeed! And does he squeal. Well, more of an anguished holler. All I can say is: it was lucky we already had children! Despite this, my husband hadn’t learned his lesson! Somebody must have helped me up, but in the shock and embarrassment of it all I just don’t recall.

Going on to the garage, to collect my new car, begat act number three. It comes as we are heading down a slope, towards a crossing point, in order to traverse the river Medway. Again, being wheelchair novices, neither of us gives a second thought to the fact Tony is sporting leather soled shoes and the slope down to the river has quite a slippery surface. One minute we are proceeding sedately downhill, the next, the forward momentum of my weight, plus that of the wheelchair cause his feet to go out from under him. He’s simply skating along the slipway for a few seconds, every bit the novice skier totally out of control. He’s had to let go of the wheelchair and, splat, ends up on his bottom.

That leaves me heading straight for the river, gathering speed of course and panicking as it gets closer and closer, all too rapidly. How an earth am I going to get out this, my frazzled brain asks itself while unhelpfully locking out any constructive thought? Mercifully, from his recumbent position, Tony has the presence of mind to shout, “put your brakes on!!!” Quick as a flash and in a purely reflex reaction, I grab the brakes and more by luck than judgement, I manage to stop, far too close for comfort. To this day, I still don’t know how I managed to find the brakes as I didn’t really know where they were, let alone how I avoided losing a finger in the spokes of the wheels as they whirred round furiously.

Unharmed, once across the river and not in it (!) we realise we are a little too early to collect the car, so we stop for a drink at a pub: a welcome opportunity to calm our jangled nerves. There are a few steps to mount in order to get in. I think it safer, given my disability and all that has happened to us already that day, for Tony to help me up. He takes my arm. Two gentlemen are leaving as we negotiate the steps. They give me a decidedly disapproving look. In riposte, my husband says, “Don’t look so worried, she will be much worse when she comes out!” Typical of our sense of humour. Thankfully, MS still hasn’t robbed us of that. Should it ever come to pass, that really would be the end.

The fourth act of the new wheels saga happens as we’re ‘walking’ to the garage. A man comes out of a department store, piled sky high with wallpaper and paint. He doesn’t see me in my wheelchair and lands right on top of me, with all his shopping sprayed across the pavement. He picks it all up, in a whirlwind of flailing arms and promptly skedaddles off, saying not a word. I can only suppose I was below his very restricted field of vision, overladen as he was with alI manner of stuff. I don’t know who was the most embarrassed. I guess, by his actions, he must have been.

As I’m sure you can imagine, I really am so relieved to finally get to the garage, collect the car and head for home, after such a very eventful day. On the way, we stop off at my brother’s house, to show off my lovely, gleaming car, but as the saying goes, ‘All that glitters is not gold’. As you may have guessed, this ushers in the start of the fifth act. Although it turned out to be the final one, it was the most protracted chapter. Anyway, my car is duly admired by my brother, we say our goodbyes, get into the car and, and, and ……. Nothing! It won’t start. It was a real John Cleese, Fawlty Towers moment, where the car is mercilessly thrashed across the bonnet with a tree branch, to within an inch of its life.

My brother is a mechanic so he whipped up the bonnet but couldn’t find anything wrong. For no logical reason we turn the engine over a few more times, trying to start the wretched car. For whatever reason, bingo, it decides to spark into life, and we shoot off home, pronto. All is well for the briefest of interludes. But was it really? Anything but! It took just a few days for a mini plague of new problems to rear their ugly and unwelcome little heads. First the starter motor packs up, so back to the garage again. Then the alternator, back to the garage once more. It was beginning to feel as though we are attached by some invisible elastic, which every nth day would catapult us back the garage, leastways, excepting the times we didn’t need a tow-truck. Just to ring the changes, one time when we’re in the garage we pick up a nail which is lying around in their yard. At least they the decency to replace the tyre free of charge.

By now so many things have been replaced I’m beginning to feel a bit more confident about the car. So much so, that we go off on holiday in it. And how does the car repay our trust? You guessed, it did so by breaking down, yet again. We phone the garage where we bought it. They book us into a nearby garage after I refuse to travel all the way back to them, not least because the odds are we’d end up in another Basil Fawlty moment. By the time we get to the local garage it’s all but deserted with the only living soul a young mechanic packing up to go home. But he turns out to be my knight in shining armour. We explain the problem, he lifts up the bonnet, embarks on a quick but purposeful looking battery of prods, pokes, tugs. In a flash, he finds that we’ve got a loose earth strap and tightens it up. It’s been the cause of all the breakdowns. Alleluia!

At this stage you might be wondering who was paying for all these repairs, which y now meant that getting on for half the car half been replaced. Most certainly I didn’t! But what incompetence on the part of the garage we bought the car from.

I’m pleased to say that this tale of woe has a happy ending. Thanks to the Opel Escona, with its hand controls, I was able to drive, trouble free, for another 10 wonderful years, albeit I only clocked up 10,000 miles, or so, in all that time. So, never is it truer to say all’s well that ends well. By the way, the car’s registration number was TKN 461 T. Perhaps destiny was trying to tell me something with the letters TKN. Was it Time, Knowledge and Nurture required, or perhaps Trauma Kit needed Now!

Sheila Excell, Primary Progressive MS

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