The late and great comedian Frankie Howerd had a memorable line tagged to many of his routines. He would regularly complain to the audience that we were rowdy saying, ‘Titter ye not’. If the laughtermaker were around today and still treading the boards, he would surely change the tagline to ‘Twitter ye not’.
The networking giant has lost, dare I suggest, hash-tag brownie points for allowing people to mention the wholly innocent Lord McAlpine in connection with child abuse claims. While Lord McAlpine is absolutely right in instructing his legal team to pursue damages, the proceeds of which he will donate to Children In Need, there is an element which is worrying. Certainly the BBC is responsible for a shabby, lazy and disastrous probe into child abuse in a children’s home in North Wales broadcast on Newsnight and according to The Lawyer magazine, a settlement has been reached. But is pursuing the few thousand people who tweeted and retweeted on the subject really necessary? The fact is that Twitter and Facebook are the 21st century equivalent of a chat in the pub over a quiet drink. But of course there aren’t enough greedy lawyers to hang around every snug waiting for someone to say that a certain footballer is a ‘lazy xxxx’ and then collect the money. Today, all a lawyer with a cash slot machine in his eyeballs needs to do is type a few words into a search engine and hey, thousands of mugs who have said something about a ‘celebrity’ are there for the taking.
So what is the answer? How does an ordinary Joe using Twitter know what is potentially libelous? Are we entitled to express our opinions when we believe issues need to be raised? Yes, it’s true, those people who jumped on the completely false McAlpine bandwagon were wrong. But again, is repeating what someone says a criminal offence? We surely don’t want to go down the route where millions of blogs (like this one) are subject to possible litigation, but on the other hand we don’t want people sending malicious lies and rumours viral. The best chat rooms and forums have moderators who make sure the boxers punch above the belt. But that idea is impossible to police throughout the Internet.
The bottom line of this is that the Internet has revolutionised our lives, mainly for good. We will never completely stop the spammers and scammers, nor will we ever stop online pub talk reaching audiences of millions. While completely understanding Lord McAlpine’s anger, there is really no need to go for the thousands of people potentially implicating in spreading the malicious rumour. The BBC should pay up for a disgraceful piece of journalism. The bloke from the snug deserves a slightly wider berth.
One thing the late Sir Jimmy Savile will not be doing is resting in peace as horrific evidence emergence of his predatory sexual advances towards teenage girls and vulnerable people. From the BBC to government departments, it appears that no-one was able to nail the former miner and, pardon the expression, clunk click him into a cell for a lengthy sentence. Far from being punished for what looks increasingly like a scheming and manipulative pursuit of girls for sexual gratification, Savile was courted by the establishment presumably because it was good to be associated with an iconic figure who raised millions of pounds for charity.
Savile’s decades of alleged abuse over the 60s to the 80s mirrored our society at that time. The sexual exploitation was often carried out by people who were paid by the state to look after or act as role models for its most vulnerable members. From care home staff to clergy, from teachers to care workers in special needs long stay hospitals, once the doors were shut (we now hear that Savile had a set of keys to plunder inmates at Broadmoor Hospital), it was open house for the abuse to take place. It will be interesting to see how much the establishment knew about Savile’s alleged crimes and how far and high the network of abuse spread. This article in the Independent by Paul Gambaccini forecasts that much more evidence will be uncovered.
Of course, abuse of children continues to blight our society today as the case of the paedophile ring in Rochdale harrowingly showed. But in the case of Savile, it is clear that it was a lethal combo of power and iconic status that enabled him to carry out the alleged attacks with impunity. This obsession with celebrity and fame was particularly misplaced with Savile, a B-list player who somehow manipulated TV chiefs into believing he was a superstar. Once this iconic status was confirmed, Savile had the freedom his alleged perverted actions craved. In short, he knew he was untouchable, the poor girls he allegedly abused had the right to remain so themselves.
Their heartbreaking tales of fear and humiliation are terribly sad and they leave a public already reeling from tales of incompetence among some social work professionals. Our clients at Care Images are hardworking, diligent and caring people who have chosen a career in care to help people. Savile’s legacy also affects their work because some of the country’s less scrupulous news organs will use his case as a stick to beat social and charity workers.
When Savile died a year ago, his coffin was visited by well-wishers before he was buried. This macabre ritual – reminiscent of former Soviet leaders who would lie in state for days as thousands of people paid their respects – is sadly poignant. The odious Savile, it seems, was not only lying in state, but while alive and kicking, was lying in bed abusing young girls with the keys to the room provided by the state.
The real truth surrounding the terrible events at Hillsborough in April 1989 when 96 football fans were crushed to death has finally come to light. The Independent Review Panel has found what decent people have known for 23 years, that lies, deception, slander and deceit conspired to rob grieving families of the truth of what happened to their loved ones. The ubiquitous Sun newspaper and its editor at the time Kelvin MacKenzie both offered grovelling apologies as soon as the report hit the Internet and there will be a number of serving police officers, former politicians and legal advisers who had led us to believe that the Liverpool fans were to blame for their own deaths, who will be anxiously expecting a knock at the door from Mr Plod. And justifiably so too, for the report makes very uncomfortable reading. We now know that documents and witness statements were manipulated, that the security resembled an episode of Dad’s Army and that the stadium itself was not fully safe for one of the biggest sporting events of the year. MacKenzie’s orgy of abusive editorial comment directed at people who had gone to watch a football match was nothing short of disgusting – hopefully he will never get a decent night’s sleep again as long as he lives. And it would be interesting to hear what the prime minister at the time, one Margaret Thatcher, has to say about the report given its findings surrounding incompetence and negligence of the police and ambulance services.
But there is one point about this horrific event that has never properly been addressed. The FA Cup semi-final was between football’s big-two of the time, Liverpool and Nottingham Forest, and Sheffield was geographically the right neutral venue (although as we now know clearly wrong in terms of ground safety). But why on earth were the Liverpool fans given the Leppings Lane end of the ground and not the much bigger ‘home’ end where the Sheffield Wednesday fans stood? With respect to Forest, Liverpool, even 23 years ago when English football was not the global brand it is today, had a much bigger following than the east Midlands club. It was surely obvious that more fans from Liverpool would turn up with or without tickets and so the massive crush outside and inside the stadium would have been much more manageable if the Liverpool fans had a bigger area to go into. That the Football Association did not think of the consequences of this is staggering, especially as the same teams met at the same venue the previous year with the same arrangements, and the Leppings Lane end then looked dangerously full.
Hillsborough had precedents; Bolton, Ibrox, Bradford to name three of the bigger football tragedies over the years. But Hillsborough will stand out because of the vitriol aimed at the victims – indeed it would not be going too far to suggest that the cover-up orchestrated by the powers of the time was made easier because the scapegoat of Liverpudlians being drunken louts was so much part of establishment thinking that they assumed the country, with the help of Mr MacKenzie, would buy it.
The families of the victims knew better and their tireless campaigning has finally seen the truth emerge. As for Mr MacKenzie’s tirade against so-called drunken louts; it is he who should be serving behind bars.
When neurosurgeon Lutwig Guttmann launched the first Paralympics in 1948 he could hardly have imagined the event 64 years on. From the humble beginnings of a makeshift athletics field at Stoke Mandeville Hospital to a global reach of hundreds of millions of people, the Superhumans (as UK TV broadcaster Channel 4 has dubbed the competitors) will display their immense talent in front of sell-out crowds at every venue. A combination of huge sponsorship money, South African athlete Oscar Pistorius whose ‘blade runner’ prosthetics and talent have won over millions of fans from the able-bodied Olympics and the excitement of a summer the British people never want to end are making these Games an irresistible prospect. In London 2012, disability is at last cool. Even The Sun, never known for taking on social issues ran a front-page splash today on squaddie Derek Derenalagi who had been given up as dead while on duty in Afghanistan and who will be ‘going for gold’ at these Games.
At Careimages, we are proud of our involvement, albeit small, in highlighting disability (learning, physical and sensory) issues through our photographs and blogs. And to celebrate the Paralympics we have commissioned photo-journalist Julio Etchart (julioetchart.com) to provide images from the Games. His shots will not only reflect the athleticism of the Superhumans but also of able-bodied and disabled people watching them, as well as interesting background reportage that Julio specialises in.
We respect and admire the Superhumans but there is still much work to be done for the also-rans in the world of disability in relation to access, inclusivity and prejudice. I understand that Channel 4 need to raise the ante and a strapline with Superhumans will put bums in front of TV screens, but my wager is that disabled people round the world would rather be seen first as humans, equal to those with two legs and so-called intellectual ability and as a first resort being able to watch a film in a cinema and fly on a plane with them.
Guttmann’s legacy lives on and we are delighted to represent his vision through Julio’s lens. Watch out for the images, they reflect a very different world from 1948. Maybe, just maybe, after these Games, people will start using the word ability to describe disability.
Fast backtrack a year, with parts of the UK in flames, rioting and looting, the country seemingly in freefall. How had our green and pleasant land become so unpleasant, even repugnant? And with the Olympics only a year away and the world’s greatest athletes arriving and hundreds of millions of people watching our every move, there was an inevitable and justifiable aura of doom and gloom.
So how did we turn it round? The cynic in me suggests that it was money, the billions of corporate and government money that bought us love, medals and a logistics triumph (not to mention the 80,000+ volunteers – including myself), or ‘games makers’ as we were spun in corporate speak. But emerging from my cynical skin, there was something quite remarkable about these Games, remarkable inside and outside of the citadels of sport which produced so much drama. The fact was, that for two weeks London became a wonderful place to live. People out there who frequent public transport as I do will testify to the fact that the buses, trains, underground and DLR, whether near or far from a venue, were full of hope not despair. We interacted, helped, conversed and enjoyed. Daily issues which blight our society and which emerged with so much venom a year ago; race, class, hatred, envy, greed, selfishness and violence were wiped off our streets, our buses, our roads, our pubs and our estates by the awesome feats of not only our Olympians (and step forward Mo Farrah and Jessica Ennis for their gigantic efforts) but also by modern folk heroes led by the irresistible Usain Bolt and Michael Phelps.
When a human being’s run, swim or striking of a table tennis ball arouses senses hitherto the monopoly of great composers or artists, we know we have reached a Utopia where meritocracy trumps colour of skin, class and lifestyle. And that is what happened in London, we became a meritocracy. The best won medals, the rest were awesome too. The rest of us watch with admiration and respect, qualities that were conspicuous by their absence in last year’s inferno.
Surely it is only sport that can make such an impact on people’s lives. I’m sure the chattering classes – conspicuous by their complex analysis of art, literature and music – would argue that the pen is mightier than the fencing sword and it is ideas, literature and jazz music, not volleyball and boxing that shape the world. Not so. Sport’s simplicity and accessibility are perfect entry levels for the likes of Nicola Adams, the young woman from Leeds who took gold at boxing who has won the hearts and minds of the nation. And one year on from meltdown UK, for every youngster from a sink estate who wants to emulate Nicola, and walks into a local gym with a dream of earning gold rather than looting it, we have the raison d’etre for what has been the greatest show on earth.
Guest blogger Geoff Gunby writes a moving article about the nature of depression and his own battle with it.
I’ve never had any problem telling people that I have suffered from depression, because, in my experience people just don’t want to know.
Their eyes glaze over and their faces take on that ‘let’s talk about something else’ expression. You just know that you might as well have told them that you’ve just cut up a herd of cows with a chainsaw.
This almost magical effect, it just doesn’t apply to strangers or passing acquaintances, but also to health professionals, nearest and dearest and friends I’ve known for years. Something about it embarrasses them. Nevertheless I don’t want to launch a diatribe about how the world won’t listen or how uncaring people are because I don’t believe that things are that simple.
If people are annoyed when someone says that he or she is depressed we have to ask why. Time and time again I hear it said that we citizens of the western world are faced with an epidemic of depression. It’s life shortening and costs working hours. There seems to be no easy explanation of why this should be given the comparatively easy lives we have. There is something there, something huge and yet somehow imperceptible, like the elephant that has been in the living room for so long that it has ceased to be something worthy of even the most flippant comment.
But what could it be, this group secret of which mention must never be made? This dark mass in the corner, that takes up so much of our time with its constant demands without our being ever being really aware of its over-solemn occupancy? The mention of which brings out such a quiet rage in the people around us. As with anybody else all I can do is to look back at my own experience of what Andrew Solomon terms ‘The Noonday Demon’ and try an make a few connections.
In 1970, when I was nine years old, Unilever sacked my father. He had moved to the seaside town I grew up in to work for Birds Eye foods in their laboratory. As part of a general rationalisation of assets the lab was relocated and my Father suddenly found himself surplus to requirements. The effect on him was quite stunning. It was as if a miniature atom bomb had gone off in our middle class home, the fallout from which would never entirely leave us.
Dad had never been an easy person, irritable, violent, perfectionist beyond all reason, but he had always had a kind of energy which got things done, kept the garden tidy and kept him interested in life. Thus I had always forgiven him his excesses. Overnight, it seemed, things just came to a halt. The grass on the lawn that he had been so proud of grew two feet tall, the vegetable patch was abandoned and he spent long hours on the sofa with his head in his hands. The swing at the bottom of the garden hung rusty and useless as yesterday’s cliché, love and kindness were a thing of the past. Too proud to claim benefit he heaped humiliation on himself by borrowing from his own father to pay the mortgage. He argued with and struck my mother on several occasions. He subjected me to mental torture, making me stand in front of him while he told me how awful my life was going to be, how I would grow up friendless, and how I had no idea about anything. Of course at the time I didn’t understand what was going on only that I didn’t like it.
I had no idea that my father was depressed, had perhaps suffered what people used to term a nervous breakdown. In time, my mother went back to work as a teacher, my father got a job in the NHS and things were OK again. Except that they weren’t.
Between my parents things were never quite the same again and in my eyes, my father, who I had once worshipped no matter what his faults, was effectively dead. Someone to get money from if possible and to otherwise be avoided. In this period and the loss of direction that came with it were laid the foundations of my career as a delinquent, my failure at school and my inability to take pleasure in anything I later achieved. In other words the template for my own future depression.
I can’t say for sure when it started. All I know is that as my twenties progressed, I began to be aware that things weren’t right. A disastrous love affair, a pointless MA in Media Studies, moving to London with no clue as to what to do, the constant anxiety about the epilepsy which was slowly starting to control my life, the death of my beloved grandmother from cancer; all of these caused me pain, but wouldn’t it be the same for anyone? Nobody can go through life without some sorrow but people carry on and yet somehow I found myself less and less able to do so. There was something, something more, isolating me, colouring my thoughts. darkening the future, something I couldn’t get a hold on.
For years I carried on, writing novels that were never published, doing odd jobs, buying a house, getting married, travelling around, seeming to be having a good time. Yet all the time experiencing a growing emptiness, hearing an ever louder self accusatory voice pushing me towards taking my own life. Down and down I sank until there really seemed to be no hope. I had stopped working and gone on Disability Benefit because of my epilepsy and gradually I became paralysed to the point where doing anything was an almost unbearable effort.
On the surface yes, I was moving forward, was learning to paint, thinking of moving to Portugal but underneath it was hopeless. And still I just thought it was me. Finally my GP sent me for counselling after I had been to see her about something else but still it didn’t really register. I think the low point was when I told a friend’s wife not to take her kids to Disneyland because Walt Disney was a tool of the CIA. She just snapped and for about an hour berated me for being so miserable. Next day I went and sat by a pond in a park in Chester and cried for hours, watching the rain fall into the dead water.
And then it was over. My marriage broke up, I didn’t go and live in Portugal, met someone else and had children with her. And I was happy for the first time since I didn’t know when. Afraid that the darkness might just come back some day I’ve asked therapy on a couple of occasions but have given up after being made to do a kind of phone quiz and then been told that I may have been depressed but that it was now ‘in remission’.
So maybe that’s it, everybody’s happy nowadays, if a little anxious, just that I can’t help wondering what happened to me. So many books, so much research, so much pontificating, all pointing to the simple truth that everybody has their own depression. Mine wasn’t too bad, after all I’m still here, even if it did last a long time. And yet there has to be a common thread somewhere, surely?
For me the thread that leads back to the elephant comes not from looking at depression but from those who are not depressed. From the relative ease with which I cleaned out my life and started afresh. The whole process took on its own momentum – with my wife went her friends, her inlaws, a whole existence. Really I behaved so oddly that only my true friends stuck with me and it was all for the good. Change your life and change yourself. Use your choices.
Of course things are not quite that simple. But still it seems to me that the oh-so-polite anger that lies behind our friends’ refusal to acknowledge our pain is their own fear that it could happen to them. They too are simply running out of choices, and the choices they do have don’t amount to much. Surely you, sad as you are, can see that we are both the same? A tempting elephant but surely much too simplistic to cut it in the nervous world of pachyderms. Or then again…
Today we’re very privileged to publish this guest blog from Geoff Gunby, a long-term sufferer of epilepsy, who has now been seziure-free for over two years. He talks about how this remission has effected his outlook on life.
I recently commented to a Facebook friend on the subject of seventies rock lyric, a song by Hawkwind about nuclear war, that somehow, back in the day, it was almost reassuring to have the apocalypse at hand, that at least one knew where one stood. There was a definite something to fear, no matter how much one tried to ignore it, and this allowed songwriters, for example, easy access to a sense of meaning and importance. Never mind that the end of civilisation as we knew it was a constant and real possibility which nearly did come to pass on several occasions, well it didn’t and we’re here now, lets be glib and why not?
But we’ve all done it, posted something and then spent the rest of the day in frenzy of remorse, all the time wondering if it’s not to late to delete the evidence of one’s stupidity, raking over and over how one has just exposed oneself in all one’s crude shallowness to the baleful gaze of the great rational out-there, who are all, even as you sit transfixed, about to unfriend you and then share with everyone you have in common what a fool you are, leaving you in virtual limbo for ever and a day. Anyway maybe I was feeling stubborn, maybe I just had an attack of proportionality, but I just let it stand and of course, needless to say, no one did any commenting, complaining or unfriending, even if they had been finally confirmed in their suspicions about me.
Besides the fact is that people do tend to be more at ease with hardship than uncertainty and that this is mirrored in the suicide rate actually going up at the end of wars or during times of economic improvement rather than with the enemy at the gate or in the trough of depression and this was what I would like to think I was really alluding in my post – to that in a strange way its much better to be done for, to be in the depths of despair and to be able to give up rather than to have to face up to deciding what to do next and to the fact of your own uncertainty and growing realisation that there are no givens.
In the past I have suffered from depression and whilst it is not an experience I would recommend to anyone the fact is that one does become habituated to it in the same way as one might to being unemployed or in prison. More relevant to my present circumstances and to this line of discussion is the epilepsy from which I have suffered for the whole of my adult life and from which, due to good doctoring and my having made some lifestyle adjustments, I am now enjoying a remission which has lasted for over two years, constituting the longest time I have been well since I was 14.
For 37 years I have suffered from scary petit mal seizures and from over the top grand mal tonic clonic seizures. I’ve collapsed into freezers in Sainsburys and lived on Bonjela for days without end. Every day of my life has have spent in the shadow of this life threatening illness, the only positive aspect of which is that, like a character in a story by Doestoevskii, that patron saint of the epileptic, I can never remember what has happened.
I have spent my life working out how to get enough sleep, making sure I get and take my medication, all the time worrying about the effect it is having on me, calculating the risk in climbing stairs and ladders, visualising roads and hillsides as places upon which to collapse and die, woken up in hospitals not knowing my name hundreds of times over, having screamed and turned blue and cheated death by a whisker, suffered the pain over and over of a bitten tongue or a scraped face or bruised pride and just carried on and carried on until all this has become my normality, a normality to which I have to say I became adjusted and in the end clung to with all my might. I was ill and that was that.
And now that things are better, now that I have taken the time to realise that without alchohol I would have had few if any seizures, reviewed the implications of this and taken the step of stopping drinking, having faced up to the addictive nature of the drink/meds combination, what I am left with is a whole lot of fear. It may be that I have simply got better as many epileptics do if they make it past forty, but still I can still look back over a life shaped by an illness and think what if?, what if?, and it’s like standing on a clifftop facing away from the edge. I think what if, what if? what if I’d died, what if I’d chosen to live earlier, and of course, as with all such questions the answer is that there is no answer, only the future.
Yes. I am now confronted with all the issues that my illness helped me avoid ranging from ‘am I really that bad at chess?’ to ‘can I succeed as a painter’, from ‘how can I make a living?’, to ‘can I be loved for who I am and not merely as a dependent?’. The whole of my life has changed and with it has come massive uncertainty, penetrating into every aspect of my daily routine and everything I do, should I think of learning to drive?, should I buy a bike and dice with the London traffic?, should I finally finish with disability benefit?, am I still ill?, should I aim to cut my medications?, just how does one cope with the social anxiety of going to a party straight and being surrounded by boring middle aged people drinking and taking drugs like there was no tomorrow? Questions, questions and more questions and I love it. Nothing more than everyday worries and yet so so precious. Through my experience as a long term patient I can see them as something to be grateful for rather than something to run away from or to ignore.
But still incredibly I find when things get a bit much there is that same voice prompting me to take a chance and have a drink, smoke and joint or stay up all night and it has me wondering, how many others are there in the same boat or worse, people for whom getting better is not so much not an option as just a little bit too scary to contemplate, who are holding themselves back just because they can’t face the questions. Of course there are limits to what people can do, to what extent simple willpower and clean living can do to bring about recovery, but the eternal debate concerning to what extent being labelled ‘disabled’ is in itself disabling will, of course, run and run. As will all the other questions.
I admit it; I’m a grumpy old man always complaining about kids doing this and that. Yes, the truth is that I’m just jealous that my 12-year-old can read War and Peace in the time it takes me to text a message and when he can tear himself away from i-this, i-that, I say ‘Please can you do some homework,” and get a stare that resembles Celtic and Rangers fans after a particularly feisty Glasgow derby.
But there is one thing that does get on my nerves and that is kids, and I mean young kids, who are literally glued to their phones. I hear stories from teacher friends who complain that kids in Year 7 are constantly messaging, texting, Facebooking (the verb will be in common use within five years), anything except LEARNing. Step onto any bus and you are confronted by a raft of hand-held devices held by kids as young as seven.
But of course there is a worrying side to this seemingly inescapable march to technological meltdown. In my day, bullying meant a good hiding in the playground; today it’s much more sophisticated with texting replacing the the boot and with parents seemingly in much less control of their youngsters than ever before it came as a pleasant relief to see this product hit the market this week.
Bemilo represents the first time a phone company has addressed the problem of our children’s obsession with the mobile phone. But the really good thing about Bemilo is that the concept is about enabling rather than punishing children. The company is to be congratulated for helping children use their phones safely with the fall-back of their parents monitoring and controlling their usage in case they run into problems.
On this piece on Radio 4’s You and Yours programme some older sounding kids objected to their parents being able to ‘snoop’ on them. But I applaud this company for caring about kids who can’t speak up for themselves, who need a phone to let mum and dad know where they are and who can be part of the technological zeitgeist without worrying about the consequences.
Anything that enhances safety of children gets our approval; this product looks like the perfect way for a parent of a nagging child to say ‘yes’ knowing that the child will be protected.
For some reason, inexplicable to me, sport assumes a great importance in my life and millions of fellow sports addicts. In my case it is football and cricket that are responsible – depending on which way you look at it – for me wasting or enjoying thousands of hours of my life either playing, watching or officiating (I qualified as a cricket umpire two years ago).
Followers love the excitement of their chosen sport and there is nothing like the banter in the pub or workplace (or both if you happen to be the landlord) after a controversial event or match.
In these difficult economic times sport assumes an even greater importance in enabling people to escape to a place where the grass is greener and where your favourite team or sports star is keeping you on the edge of your seat. That is, of course, unless you want to watch the event live. The cost of attending live sports events is becoming increasingly prohibitive to a growing majority of already dispossessed people in the UK; fancy getting a season ticket at Arsenal (to name but one of many Premier League football clubs)? Don’t expect too much change from a grand. Want to spend an enjoyable day in the sunshine at Lord’s this summer to watch the England-South Africa cricket Test or England-Australia one-day international? That’ll be £128 or £160 please. And let’s not even go near the price of attending F1 Grand Prix, and dare I say in this season of sporting nationalism, some of the Olympic events (and that’s if you are lucky enough to get through the Stasi-like application process online).
As in all these situations, the first past the finishing post of nabbing the best seats in the grandstand are our old friends the corporates who treat their clients and suppliers to the sounds of munching of canapes and gentle clinking of champagne glasses while the rest of us slump in front of a TV (and if you don’t have SkySports at around £25 a month then even that is not an option).
I can live with upper-class toffs strutting around Henley or Ascot – these genial annual bashes are part and parcel of the sporting calendar and take us back to an era of debs, bounders and tiffin. But to see our mass spectator sports acquiescing without a fight to the power of big business is truly sickening. And though I really hate to hanker on about ‘the old days’ (at my age there is more to look back on than forward to), I can remember a time, not so long ago, that a day at a Test match and entry to watch Arsenal would set you back about a tenner, or even a fiver. A time when the stadia were heaving with people appreciating the finer points of their sport rather than the current crop of corporate hangers-on. A time when supporting your local club or sport meant something more than a physical presence. And a time when the greed of fat cats was confined to Ascot.
We are publishing a powerful and moving piece today on our blog from Nikki Kyriacou a graduate of photography, whose mother Maggie died from complications around MS last year.
I knew Maggie around 30 years ago when we were both working in residential care homes for adults with physical and learning disabilities. She was a joy to work with, a wonderful communicator who loved people and life.
Nikki’s piece is much more than a chronicle of Maggie’s deterioration of health. it is a testament to the love and care provided by Nikki’s dad Soph and herself and we are delighted to publish this moving piece in memory of a very special person.
Although I grew up knowing my mum had Multiple Sclerosis, I have asked my dad to help me with this blog as he was mum’s full time carer.
It was back in February 1992 when my Mum lost her vision in her left eye known as “optic neuritis” where the nerve supply from the eye to the brain inflames and the vision pathway is lost within that affected eye. Although optic neuritis is associated with MS, not everyone who gets optic neuritis goes on to develop the disease.
It was a shock to my parents when this happened, especially as mum worked with adults with physical and learning disabilities in the early 1980s and knew what MS was, I was too young to understand what was going on. She spent 11 days in hospital on high doses of steroids to reduce the optic neuritis, which it did, but was told by her neurologist it may come back in the same eye or the other eye and that this was a sign of MS but needed to have a lumbar puncture to confirm that.
Mum was in denial as she didn’t want to have the lumbar puncture, and it was my dad that said you should have it done as it may be benign – another form of MS which didn’t mean she would get the symptoms. Eventually mum had the lumbar puncture (this is where they remove fluid from the spine and test for MS) about a year after the optic neuritis happened and it confirmed it was MS and mum was in tears as she knew what lay ahead having worked with people suffering from MS.
Things continued as normal and my dad gave Mum all the support she needed, but things did start to deteriorate; mum would be unstable walking and her vision was not as it had been (excellent at one time 20:20). She continued to work and also pursued her passion which was singing and started to sing in clubs and pubs in and around the north west of England. She was doing well and loved it so much that her MS symptoms did not bother her as she was focused on something positive.
Unfortunately, as positive as mum was, the illness started to take its toll and make her life more difficult and started to take medication which gave her bad side effects and her singing had to take a back step. In fact, it had a big impact on us all and even I had to stop going to my ballroom dance classes as dad couldn’t take me. It was hard for me and dad to see the person we both loved so much not being able to do what they wanted.
Eventually dad had to help mum with dressing and washing as it became too difficult for her. She started to use crutches to aid in her walking, but this did not last for long as she was falling and needed a wheelchair. She was looking depressed and started to feel a burden and dad would say to her: “In sickness and in health”. It became a round-the-clock job for him as mum’s disability was progressing and needed the care on a one-to-one basis. Dad, being a proud man, didn’t want carers from the community to do what he was more than capable of doing it, and better. “This is my wife, not a telephone number,” he would say.
Mum was finding it difficult to swallow and we had some near issues of choking, and at one time it was so bad we had to rush her to hospital – we can still remember that July day in 2001. It scarred us both. They advised that a peg tube be fitted to be able to feed mum directly into the stomach through a pump machine as swallowing even blended food was hard and drinking was dangerous as she aspirated (food or water goes into your lungs as you have no control over swallowing).
Her breathing became problematic as MS is a muscle weakening disease and she had to be given oxygen. Things were becoming harder in all our lives and were now becoming housebound and my dad was physically and mentally tired he never moaned, he just did what he wanted to do and that was look after mum.
It became even harder for him as mum started to have cognitive problems where it affected her speech and thought, so communication was very hard. This was putting stress on mum not being able to get words out but dad had a lot of patience and started to understand what the mumbled words meant, and would ask mum is this what you meant? If it is right then blink once. There were times when mum could blink once almost straight away, but MS at times makes it difficult and if she was not able to blink dad would think he had misunderstood her, and then she would have forgotten what she was trying to say.
Dad hoisted mum in and out of bed and into the bath with system fitted to the ceiling – this took the strain off him doing too much physical movement. Toileting became the biggest problem as mum became doubly incontinent. It became so out of control she needed to have a supra pubic catheter fitted into the bladder from a hole below the naval and unfortunately she also had to have a colostomy.
Dad was in a better frame of mind; he would say to mum, just think of how life would have been 100 years ago where these interventions were not available. This was dad being dad and converting negative thoughts to positives. He was always offered respite but he couldn’t accept it as he was so devoted to my mum.
Sadly on August 25th 2011 mum died and we were both heartbroken. She was 48 years old, too young. But on that sad note, we have all the good memories to look back on and we both believe that some day we will meet up again, and hope that mum has found perfect peace.