Wednesday, 14 October 2015

Fortune Favours the Bold ... and the Fortunate!

Of all the songs that I remember Joan Baez singing, there is one that I always recall first ... "There But for Fortune". Written by Phil Ochs, but made famous in 1964 by herself. Have a listen to the simple but effective lyrics ... 

Several events this year have reminded me, poignantly, how much we are at the mercy of fate. Whatever we do to try and gain and retain control of our lives, there are times when we cannot possibly achieve that. We may all suffer bad luck from time to time, but, fortunately, for many of us, we will escape severe, life changing misfortune.

Since the beginning of this year, my wife has lost a close, career long friend at far too young an age; my son and daughter-in-law lost their baby, Samuel, at four weeks of age; my daughter lost a baby at thirteen weeks gestation; my niece's husband, whilst doing something as inconsequential as cleaning out their refuse bin, slipped a disk in the lumbar region of his spine.

But this was no ordinary slipped disk! Mark suffered the severest slippage the senior surgeon reported that he had ever seen! His medical condition is referred to as 'Cauda Equina Syndrome'. He spent over four months in hospital, for more than half of which he was at that world renowned centre of excellence in spinal injuries, Stoke Mandeville Hospital in Aylesbury, Buckinghamshire, England. He is now home, but in a wheel chair and, for short distances on crutches. He is a sporting, physically fit young man in his early forties. He is also very bright, but occasionally under confident and inclined not to push himself forward, which is partly why I am writing this now. I think he is also inclined to underestimate his abilities and his value. He and my niece have two children, a boy of three and a girl of nine years old. Mark has lost substantial motor and sensory response in his left leg, whilst his right leg is barely half way useful. He cannot even stand without support.

We called in on Mark on Friday, and he has clearly adopted a remarkably positive attitude. He is very busy trying to organise and sort out the rest of his life, along with Sarah, his extremely hard working, very supportive and utterly dedicated wife. Their attempt at getting some expected assistance from Social and Occupational Services, with the sort of equipment that he will need to resume his life at home, met with little or no help at all. Had they not been advised to push a little harder and complain, we might have assumed that this would be one more depressing impact of the 'austerity' that is so badly affecting the needy across the country. 

The response to the complaint met with a better response and some basic equipment has been provided, like a ramp to get in through the front door and crutches. This is beside the fact that he is a 'patient for life' at Stoke Mandeville and can therefore call or visit them anytime, albeit by appointment, to seek help from their expert outpatient team. But they are a three hour round trip away from Stoke Mandeville. 

Underneath the positive facade, there is the occasional glimmer of a young man haunted by flashes of disbelief and he himself admits he does regularly suffer those moments. 

I am posting this because I feel very fortunate ... and because Mark and his young family have not been. It is becoming very clear that Mark will still need to raise funds for equipment to give himself a chance of recovering and making adjustments to life with a revised set of abilities. One of the (many) objectives is a FES (Functional Electrical Stimulation) machine. The FES is rather like a TENS machine, only bigger. This is designed to tackle significant muscle wastage, which is particularly prominent in his left leg, and is having all sorts of side effects. One side effect is that the muscles and core support in his back are suffering an imbalance, which, apart from causing pain, will affect his mobility and his morale, and does threaten additional problems that he can really do without. The FES machine is relatively new in the UK and, you've guessed, expensive. 

Amongst the activities that are most likely to motivate him, Mark is intent on maintaining his involvement in sport. He used to enjoy football (and did some coaching at a local school), squash, badminton and, perhaps his first love, golf. He may not be able to involve himself in these again, in the same way, but he has talked to the wheelchair basket ball fraternity and, as luck would have it whilst he was at Stoke Mandeville, he was able to watch the Para-Badminton World Championships at the Guttman Sports Stadium (adjacent to Stoke Mandeville Hospital) and to meet and talk with some of the competitors. Professor Ludwig Guttman was asked by the government in 1943, to establish the National Spinal Injuries Centre at Stoke Mandeville Hospital and is credited with being the founding father of the Para-Olympic movement in the 1950's, which started out as the Stoke Mandeville Games.

An additional challenge for Mark is that viable clubs around the country are few and far between. A common story seems to be one of how hard disadvantaged people have had to fight (and pay) for their desire to be involved in their chosen sport, let alone for equipment they need to live any kind of of normal life. 

To this end, Mark's squash club, the Hinckley Squash & Racketball Club, have set up a JustGiving fundraiser for him, having expressed in their mission (on the JustGiving page), that they want to help to buy Mark the right sort of equipment to enable him to participate in sport. In the words of the the Club, the value to Mark in both physical and psychological terms, is massive! The Club have organised a 24-hour 'Squashathon' starting at 7pm (GMT) on Friday, 16th October and finishing at 7pm on Saturday.

It might help to read the explanations under the following headings, lower down on the right hand side of the JustGiving page: "What's the problem we're trying to solve?"; "Why do we care about this?"; "How will the money be spent?" and "When will the supporters see the difference?". I think this effort by the Club reveals chiefly how popular and how much liked Mark is as a person, not to mention his skills as a sportsman. 

The JustGiving appeal page is here: 

For those, who love sport and were fortunate enough to be active in it, but who have been so quickly disadvantaged in the middle of their lives, Sport is truly a lifeline. It is easy to see why and how the Paralympics have become so important and so popular.

I applaud the spirit and courage of both Mark and Sarah and our thoughts (and actions when you need them) are with you always.