Where on earth has the sky gone?
I first became aware of MS over 60 years ago when my mother was diagnosed. I was in my mid-teens. MS was not so easily recognised in those days (I’ve heard it said that one of the early, so-called tests for MS was sticking the person who may have the illness into a steaming hot bath and if they couldn’t get out then that was that!) and her symptoms had been something of a mystery. She was a highly intelligent lady with a degree in French which she taught at a local school. Her MS became progressively worse so that by the time of her death, in her mid-fifties when I was 21, she had lost virtually everything.
Fortunately, 57 years on my MS is still nowhere near as severe as hers was but my mother’s dreadful experience has made me only too well aware of what some must be experiencing and I’m always wary of what MS may have in store for me. As a result I’ve tried to live a very full life, gleefully seizing opportunities with both hands whenever they come my way. Ironically, perhaps, the more my MS symptoms have progressed the more I’ve tested myself - indeed some might think to the point of reckless abandon. I’ll let you be the judge of that by describing a few of my aerial adventures. First, however, I need to describe some of the ways that MS affects me.
For me the words that best describe what MS does to me are balance (or more accurately lack of and resultant falls), fatigue and frustration. An altogether coarser person than I am might justifiably refer to these as MS’s three effing Fs! About three years ago my ‘F1s’ became an almost daily occurrence. Inside the house, thanks to my protective posterioral padding, I would normally get up off the floor, little the worse for wear. The kitchen, with its silky- smooth tile flooring, was an altogether different kettle of fish. It became my MS Venus Flytrap. The floor would have made a skidpan to test the mettle any would-be rally driver. I was easy prey, a real lamb to the slaughter. But it was a fall onto a pavement, on the way to a friend’s house, that heralded my first visit to A & E. The pavement won in my very short-lived attempt to defy gravity. I found myself I sitting on the pavement surrounded by a small group of helpers. Happily, a few stitches later, I was fine.
My next visit to A & E was a year or two later. I had been walking our flat-coated retrievers and had got as far as the front door when one of the dogs caught me off balance with its sudden, excited lunge for home. I staggered and swayed, like the proverbial drunk, trying to regain my balance, only to end up head-butting the brick door-surround. It won, so off to A & E anew, more stitches, but once again I was fine. My next couple of falls from grace were courtesy of sudden dashes by those with a leg at each corner of their torsos but by now I was getting the hang of these impulsive headlong charges and manouvered myself so as to land on a body part much better protected than my head. The local council's Falls Unit averted further falls by providing me with an excellent walker. These days said walker is a Godsend, both inside and outside the home.
Fatigue is a word well known to most MSers. It's my belief that if you haven't felt tired by doing next to nothing for little more than a few nanoseconds you haven't got MS.
Frustration must be one of the less obvious, but very real, symptoms of MS from finding it difficult, or downright impossible, to do simple everyday things which used to be accomplished in the bat of an eye, without conscious thought or effort. Take tying shoe-laces or doing up shirt buttons: pre-MS, like any fully abled person, these and a raft of other things would be done quickly and instinctively. Now each feels as though I need to book a half-day slot in my diary to do and, even then, the outcome often hangs in the balance. But whatever land mines are in my path, I’m an ardent believer that life MUST go on and we HAVE TO make the best if it. The best of it can still be pretty good if we really do make the best of life’s many offerings.
So that’s the briefest of canters through my MS history. I hope what follows gives hope to any MSer reading this and feeling fed up, or downcast. Excitement and fulfillment are still very much there to be had with determination and a willingness to embrace something beyond the everyday. However, some non MSers may choose to think I should be certified!
Most normal, sensible people regard flying as a (mostly) fast, comfortable, affordable and safe way of getting from A to B, having a good time at B, then making their way back from B to A in the same manner. ... Boring! ... In the last eight years, precisely because I’ve had my MS baggage, I’ve done my level best to fly in ways which are different - and never, ever boring as you’ll see. I might leave the aircraft in mid-air, go round in circles and get out where I got in, or travel outside the aircraft rather than inside. It's called skydiving or wing walking. It's good fun and a very good way of raising funds for really worthwhile causes. In those years I have raised about £7,000 for charities dear to my heart – immeasurably more stimulating and satisfying than sitting in an armchair feeling sorry for myself.
My first foray, at a time when I could still walk with a single stick, suffering just the occasional fall, was to get sponsorship for a skydive on behalf of what was then my local MS therapy centre. I volunteered to take part in what someone else had suggested, so did not do any of the organization myself. I had no worries or fears in the run up (ha ha!) to the jump but was nonetheless comforted to be one of 10, half of whom were experts. My expert jumper and I were the first out of our aircraft, having been lashed together as though Siamese Twins. He got me to slide to the open door whilst on my backside. I tried to look down to admire the view from 12,000 ft, with not even a window in the way, but he pulled my head back - I think he feared, mistakenly, that I might have second thoughts. Anything but. I was more than ready to rock and roll. A further heave and we were on our way down. Wow! It was absolutely fantastic, breathtakingly so. What an experience! Out of this world (well the latter would have required another 300,000 plus feet in altitude, perhaps save that for another day!). I loved it.
We had plenty of time to take in the views which were simply stunning and way better than I’d ever seen from a plane, the top of a building, cliff top, or whatever. We hurtled earthwards, picking up speed to about 130 mph when suddenly there was a loud crack (meaning a noise, mercifully, not a jagged hole!) above our heads. Apparently the expert had pulled the cord and the parachute had opened. Boy did it slow us down. Looking up, I was mightily relieved to see a cloud of green and yellow silk above our heads - the parachute. We were now vertically inclined rather than flying horizontally in freefall. Less obviously, we were also falling much more slowly, which was just as well as I had no wish for my body to be spread messily over the airfield on landing.
My Siamese Twin signaled that I could guide us by pulling on the cords in a certain way, but that proved beyond me, so I just sat back, as it were, and continued to enjoy the view. My Twin gave the pre-arranged signal for me to lift up my knees to my chest and keep hugging them. When my feet touched the ground it was with no more of a thud than if I’d stepped off a dining room chair. Apparently my Twin had done this about 4,000 times so had got the hang of it. That skydive raised about £2,000 net. So I’d got two thrilling bites at THE most succulent cherry: the thrill of the jump and the joy of raising such a worthwhile sum for a cause dear to my heart.
I did nothing of note for the next seven years but then the deaths of a close friend and our two flat-coated retrievers within 6 months of each other decided me to do a sponsored wing walk to raise funds for Cancer Research UK and the MS Society. This time the arrangements were down to me but with lots of very willing and able help from the MS Society.
I think the image of a biplane conjures up for many people something from the days of the ‘Red Baron’ in World War 1 but it’s the normal type of aircraft for wing walking as one’s weight is spread more evenly, side to side. The operators - Aerosuperbatics - were great. I realized that, as a 77 year old with Primary Progressive MS, there might be problems, not least in ensuring that I got onto the biplane's upper wing. So my wife took me to Rencomb Airfield for a test session before I took to the sky. The operators were brilliant: helpful, cheerful and always ready to give a helping hand.
When doing something unusual, I always start by looking for something to steady myself with or grab to haul myself up. So when getting into position for a wing walk the first stage - the lower wing - is easy as there are plenty of handholds. But getting to the upper wing was a real pig as there was little to grab hold of where I needed it. If you can imagine clambering over a foot-path stile to a field, well it’s a bit like that except the upper wing is ten-feet high and you don’t encounter many ten-foot stiles! The good news was that one of the professional wing walkers was an ex-gymnast and ex-ballet dancer and was there ahead of me to give a (very welcome) helping hand.
I huffed and puffed, pulled and pushed - goodness how - but got to the upper wing eventually and felt really pleased with myself as all systems were now GO! My grin of triumph would have made a Cheshire cat envious!!
That wing walk was an ‘interesting’ experience but, as a novice walker, the pilot was permitted to do little more than climb, dive and bank to the left and right. A riveting experience for a minute or two but a bit pedestrian, as it were . Although I raised about £2,500 I wasn’t satisfied as I’d set myself a target of £5,000. There was nothing for it but to have another go, this time with a more challenging aerobatic walk now that I was officially no longer a novice.
So I lined up loop and barrel roll no less. The latter attracts much greater interest, probably because there’s more to go wrong!
Added risk leads to added interest and the potential of more sponsorship. Skywards we went. The biplane was flying at up to 140 mph which, combined with winds gusting at 40 mph on that day, made for a fiercely penetrating combination buffeting my poor face. The pilot had briefed me that he would waggle the wings before starting the loop, or barrel roll, to check that I was happy for him to proceed. I should give the thumbs up if AOK. Trouble was that I was never sure whether it was the pilot or the wind which was waggling the wings. So I gave the thumbs up anyway to make sure I didn’t miss out.
My loop and barrel roll were relatively straightforward - sorry sponsors - it was the wind which really set my nerves jangling. My head knew I was safe but my heart was not so sure. And there are times when the heart can be pretty convincing. When the wind gusted strongly, and I was thrown violently to one side, I remember thinking "Why am I doing this?" OK, my heart was winning the argument with my head at that moment, but I much prefer being described as a hero than having people feeling sorry for that poor old disabled chap. Self-respect means a lot to me.
The flight yielded so many exciting new sensations when we started off, and during both the loop and the barrel roll, that my poor old brain could not cope. The biplane tipped down to gather speed, then up ... & up ... & up ... then I was hanging upside down with fields above my head where the sky should have been ... then down we went - vertically at a rate of knots ... then we were back on what should have been an even keel. But the wind didn't agree. And the wind was right: that keel was far from even. But after a short period of what would probably have approached normality on a calmer day, we started the barrel roll.
The world went on its side, tipped upside down, then on its other side, righted itself, then back to where it should be when we headed back to the airfield. I think an expert would probably describe my sensations as information overload. I would not describe them as panic but I would not describe them as calm appreciation of unusual events either. I suppose it’s a bit like BEING safe and FEELING safe. Or being in the grip of a strong man or the embrace of a beautiful woman. The former is safer but the latter is so much more enjoyable.
The walk generated some spectacular photos of me hanging upside down with fields about 1,500 ft below (or should I say above?) my head, as in the illustration. The experience is one I shall never, ever forget. Clambering to the upper wing then fighting the wind would have been hard work for an able bodied person but for me, suffering MS fatigue BIG TIME, I was utterly exhausted by the time my feet were back on the ground. I only made it back to the Officers' Mess serving as the Airfield's operational centre with the help of my trusty walker and a friendly helping hand at each elbow.
But I was exultant. I had got to the upper wing, completed a barrel roll (I think fighter pilots liked to do one after a victory but were often told off for doing so), had videos taken of my walk from different angles and raised nigh on £5,000 sponsorship for my charities (as at the time of writing). I felt I had earned those single malts that night. Fittingly, as it was a biplane, there was the occasional double!
Before undertaking what to many I’m sure will appear a madcap escapade, I had become so used to feeling useless and a burden on those closest to me. But suddenly I’d become what able-bodied friends described as a hero and others as inspiring. Okay - a bit crazy, I’ll admit, but in a nice way. One lady thought I was certifiably mad but went on to say well done and sponsored me. If you think I am exaggerating, see for yourself the sponsor comments by clicking here and please feel free to leave your £ calling card (here).
In my experience few who do not themselves suffer from MS or are close to those who do will appreciate the frustrations generated by our disabilities causing us, contrary to our every wish, to become more and more of a burden on loved ones. So it’s particularly satisfying to achieve results which even able bodied people would find daunting - especially when those achievements generate funds for really worthwhile charities.
Life with MS can be very hard at times. But it can also be so good. There really is light at the end of that long and dark tunnel but we all need to do more to make the tunnel shorter and the light ever brighter by helping charities such as the MS Society. The research they organise is bearing fruit. They are not there yet but they are well on the way. But research costs money - lots of money. They need our help. With our help, MS really can become yesterday's news. So let's help today's good news
Unless you have a pathological fear of heights, I’d urge you MSers reading this to think seriously about doing a sponsored activity aloft to raise funds for charity. You could do an awful lot worse than a tandem skydive. It will get potential sponsors interested, it's good fun and not too difficult for a moderately disabled person. Getting into the aircraft is fairly easy. I was strapped to the experienced chap when inside. As I wrote earlier, you slide out of the plane rather than jump out. The next bit is great. Your expert opens the 'chute and guides you as necessary so that you land where intended. It's a fantastic experience. The expert takes any shock on landing and you've done it!
Don't feel sorry for yourself. Be positive. Help others such as the MS Society to help us all (in addition to the MS Society, the MS Trust, MS-UK and a number of local MS centres also organise parachute jumps and the like). Good luck and happy landings!
Primary Progressive MS