Well fancy seeing you here...

Hello and welcome to the rambling rollercoaster of useless ponderings, strung together in what the internet calls a "blog," and the voices call a waste of everyone elses time.

Please check your sanity at the door (along with your dignity, logic, principles, good taste and prejudices against daftness.)

"I am here to seduce you into a love of life; to help you to become a little more poetic; to help you die to the mundane and to the ordinary so that the extraordinary explodes in your life." -Bhagwan Shree Rajneesh

Monday, 27 December 2010

And Now For Something Completely Different

As I am the only one of my siblings who has (happily) not yet begun breeding, this Christmas the family was scattered around visiting other children and grand-children – with a smaller local gathering planned for New Year. Like many people, I’m not very keen on change when it is thrust upon me, and am particularly averse to it when it involves traditions which I enjoy the comforting familiarity of. I’m still vaguely traumatised by Katie Melua replacing Kirsty McColl on the Pogues re-released ‘Fairytale of New York’ a couple of years ago, so knew that I may very well be uncomfortable with the idea of not spending Christmas day with my close family after almost a quarter of a century of doing just that. As with any variation on a classic, this re-mixed Christmas was always going to feel a little odd – but rather than sulking or resisting the change, I thought that I would use the opportunity to do something completely different.

I’ve long wanted to be more involved in community volunteering, and thought that this quiet Christmas might provide the perfect opportunity to exercise my atrophied humanitarian muscles. It’s not easy to be a slightly misanthropic humanitarian, but it’s a similar inner-conflict to being a cynical idealist, so is a contrary state of being which I have learnt to accept. In late October I began emailing local charities and organizations who I thought might be working with disadvantaged members of the community this Christmas-time. Restricted slightly by the limited public transport and the fact that I don’t drive, I took a chance on contacting the church that sits at the top of my street. It’s been here longer than I have, but the last time I was inside it I can’t have been much more than about 7 years old. A friend of the family had invited me to a Sunday School program which had been set up during the summer holidays, and I went along because someone said that all the stories were told with puppets, and that all the hymns usually reserved for school assemblies would be accompanied by guitar. (I had a very sheltered childhood and that seemed intriguingly novel.) At the time it seemed fun and friendly, but I didn’t go to more than a couple because I felt very out of place. I shouldn’t have, as I knew several of the other children there and I was familiar with the fables and bible stories being so cheerfully narrated, but even then I just didn’t feel like my faith fit their formula. I very much enjoyed Religious Studies at school, but didn’t ever feel compelled to sign up to any of the religions we covered. I liked bits from them all, and for me that was good enough. In many ways it still is, though I put more faith in science and people than I do much else. That said, I still have room in my life for some spirituality, and like the “safety net” of thinking that there is something out there in case I screw up. I don’t need to analyse it or explain it, and don’t feel the need to probe it further. People of faith often have some difficulty with this, because they want me to commit to one or other god/religion, and seek to categorise or convert my non-specific ‘hope’ into a tried-and-tested ‘belief’.

Partly because of this unsuitability, I had mixed feelings when the church got back to me at the end of November with a list of seasonal suggestions for helping out over the holidays. The opportunity they offered was perfect in so many ways; so local it was within spitting distance of the house, on Boxing Day so that I didn’t have to leave my grandmother alone at Christmas, and it was an event for lonely and disadvantaged residents (which, due to my Social Worker gene, pleased me more than the convenience). I was apprehensive though, because I remembered how out of place I had always felt there – and was fully aware that I hadn’t set a stiletto’d foot inside a church for more than a wedding, christening, funeral or carol concert in nearly a decade. The event they had organised was a Christmas service with carols, followed by coffee, a buffet lunch, and then an afternoon of entertainment, and was open to anyone with nowhere else to go; asylum seekers, the homeless, immigrants, singles, vulnerable people, and the elderly.

When arranging to help I had politely opted out of the morning service, and arrived later to prepare lunch and set the tables. The church has undergone major redevelopment recently, and is still only half-finished. I’ll admit to feeling a little overwhelmed by the now-unfamiliar building, and the sea of equally-unfamiliar faces whose accompanying names I’d forgotten almost before I’d finished shaking their hands. Putting my discomfort and the redundant introductions aside, I busied myself with the tasks set by the Leader of the Kitchen People. It was obvious immediately that the warm and approachable women in charge of today’s buffet had limited experience catering for charity. I grew up helping with the New Year’s Eve buffet at the Community Centre my grandfather ran, and helped with it almost every year from early childhood until his death when I was 19. Whether it was gathering balloons, buttering bread or – my very earliest job putting hundreds of sausages on sticks – I’d participated in a lot of buffet-cooking on a budget. These ladies, though all very nice, obviously had not. The food was lovely, but the presence of a pack of luxury Organic Jersey butter meant that their inexperience of low-cost cuisine was rather telling.

Within minutes of my arrival I was slicing baguettes for the garlic bread, and it became apparent that the ovens were no longer working. (It became apparent because the electricity for the whole room shorted.) Wondering how there could be a smell of burning when the oven was out, it was soon discovered that the smoke was coming from the electrical socket the oven had been plugged into. Due to the building work, the electrical supply to the points in the kitchen hadn’t been connected, so the Leader of the Kitchen People had plugged it into a 13amp socket on a reel of the builder’s extension cables. This shouldn’t have been amusing, but a long-standing joke between friends and me has been that none of us are saintly enough for churchgoing, and would probably be struck by lightning if we ever entered one at all. As I was stood a couple of feet at most from the oven and power-socket when it burst into flames, a little corner of my smoke-blackened soul wanted to jeer a triumphant “Ha! You missed!” in the direction of the church hall. More appropriately, I suggested that we take the trays of half-cooked food down the street to finish them off in my home oven, because the alternative was to serve little other than crusty bread and cherry tomatoes.

With lunch rescued and tables set, it was time to mingle with some of the event attendees, who were a very mixed – but over-all very lovely – bunch of people from all kinds of backgrounds. After coffee it was time for people to sit down to lunch. After my first gaffe – continuing to set Christmas crackers on the tables while they were saying grace, until I realised I should step back and stand still – lunch went pretty smoothly. Everyone was fed, and chatting to some of the other volunteers was nice. After setting out the food and making tea, I found myself seated between a particularly friendly couple who lived and worked locally and who were both fun, lively company, and a sweet Zimbabwean lady who had no family in the country. It was when chatting with the volunteers and other ‘regulars’ that I encountered the only nagging awkwardness of the day, which came every time anyone asked me which church I worship at, or asked how long I had been coming to theirs. Quietly saying that I am not a churchgoer and was just helping out seemed to satisfy some, and they were additionally thankful that I had spared my time for complete strangers. Others wanted a little more detail, and continued to advocate their different services to try and persuade me to join them. None were too pushy once I aired my Agnostic card, which I was pleased about. I had hoped to overturn the unfortunate stereotype all too commonly encountered in other religious folk, which involved any attempt to convert me, but was unfortunately unsuccessful. There was only one particularly dogged attempt to get me to come along to their services, but I think it backfired a little. I’d noticed a little leaflet placed on the table near me when she returned from fixing herself a coffee, but my only temptation to look at it came from the overwhelming desire to graffiti it. The leaflet had “The meaning of life is ____.” printed onto it in bold blue letters, and had I not been surrounded by disapproving people then I would have succumbed to the impulse to scrawl “42” in the blank space, a la Douglas Adams’ answer to the ultimate question in Hitchhiker’s Guide to the Galaxy. While they were watching the film, I was sneaking a photo of the leaflet to announce my compulsion via Facebook as a way of preventing myself from fulfilling it in plain sight of the congregating Christians.

Not long after this, I was given the leaflet and told that it detailed an educational program designed to “explain Christianity”. She then asked me what I knew about the Alpha Course. Well, this presented the second point of awkwardness, because the only thing I really know about the Alpha Course comes from articles and documentaries by Jon Ronson, where he exposes the emotional manipulation behind the charismatic and persuasive approach, which at its zenith encourages speaking in tongues. I think she realised that I was unlikely to follow it up at that point, but I took the leaflet because I’d spent two hours wanting to do this:

A short clip where Ronson provides a brief but suitably sceptical description of the Alpha Course:

The entertainment for the day turned out to be not all that different to my Sunday School experience, as in the very same hall after lunch a man sat down with a an acoustic guitar, and vainly attempted to get people to sing along, before letting them play games instead. The only difference now was that instead of snakes and ladders they brought out a Nintendo Wii, which one of the younger volunteers attempted to teach a couple of old ladies how to play. The games were gradually replaced with quieter pursuits, as a handful of people settled into a game of scrabble, and everyone else relaxed into comfy chairs to watch a movie. Since puppets had been pivotal to my previous encounter, I was amused that the film chosen was Muppet Christmas Carol, bringing them to the fore once again.

Most people go to church to find God; whenever I go I find Jim Henson.

One older lady who was either Jamaican or Ghanaian giggled solidly throughout the movie, muttering to herself throughout the plot and gripping my arm while bent-double with laughter whenever any of the mice or Rizzo the Rat came on-screen. When it was over she asked if “the local library would have the book the film was made from” and asked who it was by. Considering that there is a Charles Dickens museum in Portsmouth, which faithfully recreates and preserves the house he was born in, it is uncommon to come across anyone who doesn’t know at least a little about the man. Dickens is such a traditional and iconic part of our local and national literary heritage that it was odd, for a moment, to find someone who was discovering him and his most famous Christmas tale for the first time. It was also lovely, because all the magic and laughter and emotion which I associate with my own childhood memories of the film was present in her experience of it, which was charming in its purity. She was thrilled with every scene, and completely wrapped up in the colourful cast of characters. It was a delight to witness, knowing as we explained Dickens to her that there was such a wealth of literature for her to explore next. Though if she’s hoping for a version of Great Expectations featuring Kermit as Pip and Miss Piggy as Estella, then I fear that she will serve only to confuse the librarian.

It was a very nice day on the whole, which succeeded in changing my Christmas routine enough that it was not only fulfilling, but far less strange. Before today my impressions of the local church had been limited to guitar music, puppetry, people trying to convert me, and a fear of catching fire. Now? Well… I’ll always associate it with sausage rolls too.

Wednesday, 13 October 2010

A Difficult Decennary

I don’t expect anyone to read this, but it needed to be written…

This week is a strange one for me. I’ve written before about how odd the annual anniversary of my surgery is, and how peculiar it always feels to remember back to an age when I was so poorly. This year I feel it more keenly than ever, as it marks a decade since an unassuming medical team at a local hospital saved my life.

At the time I knew things were bad, but had no idea quite how serious. Even now, looking back it’s all a topsy-turvy mess of memories and ridiculously warped perceptions. I recall how normal that alien situation eventually became – how necessity drove myself and my family to perceive some astonishingly awful trials as everyday occurrences, because in their familiarity they had become casual routine.

At fourteen years old I identified more with some of the younger parents than I did with the infants with whom I shared a hospital ward. Though deteriorating daily and desperate to go home, on one ward I spent my time chatting to a young mum whose toddler-daughter had been admitted following complications from her diabetes. I don’t remember her name, but I think the little girl was called Rebecca. The mother was young and had been raised within the mistrustful culture of many poorer cities, so was vary of the doctors and health visitors who had been trying to help her. The more she struggled with her daughters’ illness, the more help they tried to offer her, and the more worried she became that they’d take her Rebecca into care if they discovered she wasn’t coping. I remember long conversations where she’d tearfully recount the occasions when she had hidden in her flat with the little girl, trying to keep her quiet because a social worker was at the door, and the mother was scared even to let them in. They’d been alerted by the hospital because the pair had missed several paediatric check-ups. Rebecca’s mother said that the reason she had missed the check-ups were that she couldn’t always afford the bus fare to get her daughter to the hospital. Rather than asking for help, she had grown more and more fearful of displaying any weakness, lest it be used against her. After a few days of talking her round, and promising her that social services would be able to help her get to the hospital, and wouldn’t take her daughter away, the little girl was discharged and her mother promised me she’d take advantage of the help that was being offered.

A week later when Rebecca came to the hospital for a check-up her mother came to the ward with chocolates for me, her relief evident, the burden lifted somewhat from shoulders only a few years older than mine. She finally found the courage to break away from the scaremongering whispers of the council estate she grew up on, and allowed to social workers to visit her home and chat to her about her daughter. Together they’d sorted out the benefits she was entitled to, and helped her arrange travel for the little girl to the clinic.

I recount this because I remember it more clearly than I recall many of the details about my own circumstances. There was so much information buzzing about the place, so many people coming in and out, and so much crap to deal with (in both literal and less literal senses) that focusing on trying to make a difference became a way to derive some purpose from it all. My father reacted similarly to the situation, staying with me at the hospital the 9 weeks I was there, but putting in more hours than ever as unofficial social worker, grief counsellor and therapist for the many exhausted and struggling parents whose children were my contemporaries.

All the while time was ticking. We didn’t really know how fast at the time; not even the doctors knew how close I was going to come to being beyond their assistance. As I said, so much became normal that I stopped complaining about the pain, I just learned to get on with it. Daily rituals became learning opportunities for me and for the staff, who were more used to caring for younger children and made the most of the opportunity to finally converse with an articulate guinea-pig. They all wanted to know if I could feel the crushed tablets going down the nasa-gastric tube, and what the high-calorie feed tasted like, if I could taste it at all? I vividly remember the strange coldness as they’d flush the pills down with clean cold water to avoid the tube blocking, and the weird release of pressure following a little extra force when it did block, which made my stomach gurgle and made the gentle nurses wince.

My life revolved around various escape plans. Most days that meant that I would have my Dad or other visiting family take me down to the canteen where we’d try and spot presenters and producers from City Hospital, with whom we all became quite friendly. Other times it meant sitting in the Burger King in the hospital foyer, trying to collect all the Pokemon toys and dreaming up schemes to claim the most-coveted Pikachu. (Which we knew was selling for a lot of money on Ebay but could never persuade the staff to let me have.) Even if it was freezing cold I’d insist on going out to the fish-pond outside the main entrance, where I’d sit and nibble home-made sandwiches brought in by my Nan; throwing the fat, ethereal koi carp more than I ever ate myself, and occasionally chucking in a penny with a wish. The main escape plan however was a burning desire to go home – a desperate need which found me sobbing and desolate on more occasions than any physical suffering ever did. I made it home twice during that long stay, once for 14hrs, and the second time only for 7. Each time I’d persuaded the doctors that I was feeling a bit better and they’d given in to my begging to go home. Each time my condition worsened drastically from just the effort required to leave the hospital, and I was rushed back in by ambulance. The last of those times I remember what a treat it was to be pushed around our small local Tesco in a red cross wheelchair, picking out the food I’d been craving while incarcerated on the Children’s Ward. I’d been on a high-calorie diet for months and was encouraged to eat all the things most children are strictly rationed, but hospital food was forever lacking in flavour or nutrition, and the canteen also had its limitations. The meal I chose for my dinner was a puff pastry chicken pie; a pre-hospitalisation favourite and one I had missed the most during a brief period on a milk-free diet where pastry was forbidden. So pleased was I to sit down to this highly-anticipated meal that I – unusually – devoured my portion with gusto, enjoying my food for the first time in almost two years, without worrying about the pain and sickness which would, inevitably, follow. I was devastated when it made me just as ill as I had been when admitted to hospital in the first place, because not only did it seem a cruel denial of something I had been looking forward to, but it was a very difficult defeat for someone as stubborn as myself to accept.

It was then that I knew, regardless of the doctors’ hopes and my own determination to be fine, that observation and maintenance was no longer enough. They needed to intervene and operate, despite the dangers of the surgery and the massive and invasive nature of the operation and its aftercare. Such a drastic step was it to request such a course of treatment that my doctor had me assessed by a pair of psychologists who had to certify that I did indeed understand the gravity of the situation and wasn’t looking for an “easy way out”. I knew it was dangerous, and I was as scared as anyone is when they face something so uncertain, but I also felt deep in my bones that it was necessary. I was exhausted, but more than that, I knew we had exhausted all the other options, and I didn’t have what it took to try them all again when they’d had no effect. I’d borne the difficulty of the 20hr per day tube feeds to keep my weight viable, and tolerated the 60-plus tablets I took each day, but no more. It had kept me alive, barely, but that just wasn’t good enough any more. So eventually, they operated. It wasn’t until later I found out that when they had opened me up things were worse than they had realised. Because I’d grown accustomed to managing the pain and other awful symptoms, they’d failed to spot just how far my condition had worsened. We were told that if they hadn’t operated when they did, I would have deteriorated so much within the next few days that the operation wouldn’t have done any good. Discovering that I came so close to losing my life before I’d even had the chance to take charge of it has always felt slightly unreal. I think I have always felt a little detached from that particular aspect because I was at an age where every teenager feels invincible, immortal, and had never lost anyone close to me. I had no understanding of death, let alone any comprehension of my own threatened mortality. I had known that dying was a possibility, but saw it as something which could happen – if all else failed – but I never believed that the doctors would fail. With every unsuccessful treatment followed the presentation of another. More tablets, a different diet, more invasive tests. It was a relentless merry-go-round but never one I had considered finite. The thought that they would eventually run out of ideas was one which never really resonated with me. Doctors were clever, authoritative figures who made people better. They’d always managed to sort me out before. Being the product of a school system where the people in charge are omniscient, omnipresent beings who must be obeyed meant that I didn’t question the ability of those in charge of my case then. Providing I did as I was told I would get better. And I did as I was told most of the time. I argued with the doctors when they refused to explain treatment plans to me satisfactorily, but compromised in the end. Bar the occasional tablet flushed down the sink or thrown out of the window in exasperation (I blame myself for a generation of mutant pigeons on the south coast) I complied with every round of treatment eventually. Which was why they finally operated, despite the risks, when I asked them to. It proved to be a far from easy option, but one I cannot regret because it saved my life.

When sorting through paperwork recently I stumbled across some poems my father wrote while we were living in the hospital. Some of them are too personal and too heart-wrenching for me to reproduce here, but because they set the tone of the period more than anything I can rattle off, I will share a couple of them.

Tears flowing silently
Down slowly reddening cheeks.
Emotions contained and hidden
Bursting forth from within
Like a watery volcano.
Rivulets streaming across a rounded landscape,
Pouring silently over the crevice edge,
Falling to the floor below.
An outpouring of grief,
Unexpected yet necessary,
To promote day to day survival
And encourage strength to continue.
Not distressing, and without shame,

© Dave Lawrence 2000

I still believe that the whole experience was much harder on the people who love me than it ever was for me myself. I was so overwhelmed by the daily grind of the circumstances and the struggle needed just to live at that time that I didn’t have the opportunity to be distracted by the fear which so consumed them.

I’ve relayed a lot of information about nothing in particular, and it doesn’t do justice to the desperation of the situation I was in then, but then I am not the sort of person to wallow in the worst moments of my life. It’s not easy to escape, especially at this time of year, but that doesn’t mean it has to rule my every moment during other times. While I wish my family hadn’t had to experience the incomprehensible lows and feelings of helplessness that my illness presented them with, and while I often regret the things my adolescent illness prevented me from accomplishing, I can’t wish it away entirely. I am the person I am because of the experiences I have endured. The saying “What doesn’t kill you makes you stronger” is a tawdry cliché, but one which has some genuine application here.

By many peoples standards I have done little with the last decade of my life. I’ve not travelled extensively and am not at the peak of a career. I’ve not begun building a family of my own like so many of my peers, and also had to forgo my ambitions regarding higher education. I still live with the fallout of such major illness even today, and the issues which have followed continue to frustrate and challenge me. But I’ve been published in almost as many books as there have been years since the operation, written features for many different magazines and websites, petitioned the government for better health education in schools. I’ve guested on a panel advising on patient welfare, begun designing my own range of jewellery and learning how to manufacture it. I’ve also collected a glorious, varied and astonishing group of friends and dazzling acquaintances, and have stumbled through adolescence making many of the same mistakes as everyone else, and coming out the other side just as screwed up as the next person and twice as flawed – but still generally pretty pleased with the person I am because of it all.

Most importantly, I survived. I’ve had ten years which I nearly didn’t get, and regardless of the challenges I’ve faced and the limitations I am still wrangling with, that is a remarkable achievement in itself.

The second of my father’s poems captures the spirit of the attitude we were all left with better than anything I could say to end. So I will finish by saying that I will never be able to thank my amazing Dad enough for supporting me through the worst of times, despite him battling his own anguish, and will always be grateful to him and my Nan, Grandad, auntie and friends for all they did to help keep me sane (ish) and as positive as possible during a part of my life we were all struggling to accept and understand.

Nothing is as precious as time.
Each moment of our very existence
Is to be savoured, not wasted.
No-one is so prophetic
As to know what lies in wait,
How time can be lost,
And once gone
Is gone forever.
Live and enjoy,
Use every second, every breath
To make the most
Of time on the planet,
As when it is past
It can never be recovered.

© Dave Lawrence 2000

Friday, 14 May 2010

The Importance Of Being Idle

It’s M.E Awareness Week, and one group of sufferers is organising a march to highlight their campaign for more research into the illness. While I support the cause, I can’t help but think they’ve failed to fully consider the implications of their chosen fundraising method. With a strategy straight off’ve The Apprentice, they’re urging sufferers of M.E/Chronic Fatigue Syndrome to join their mini-marathon, to draw attention to the difficulties faced by people who are often so tired their mobility is restricted. Next week I hear they’re helping out with the sponsored Archery at the local School for the Blind…

The Guardian has attempted to do their bit by publishing two articles about M.E/CFS. The first flits between being so incomprehensibly scientific that the majority of their readership wouldn’t bother to look past the first paragraph, to denouncing M.E campaigners as radical nutcases. There’s very little worthwhile information in the article, which basically tells people that an American charitable trust believes M.E/CFS is caused by a retrovirus, but that independent and governmental scientists have failed to replicate their findings. It’s amazing just how much they managed to write about the fact that they’re still none the wiser – but following the assisted suicide of Lynn Gilderdale by her mother Kay, Chronic Fatigue Syndrome is still a hot-topic.

During the trial and the accompanying peak in media-interest, I was infuriated by the ignorant and incredibly biased coverage, which presented it as a terminal illness, or disease with no hope or potential for management. This is, of course, ridiculous. I’m a living testament to the fact that it is entirely possible to be certifiably-knackered and yet still make enough of a nuisance of myself in the world for my life to have some meaning. Lynn Gilderdale’s case was extreme, but her desire to end her life stemmed from a terrible depression, which was influenced by – not the sole result of – her M.E. Since her tragic case (extremely rare in terms of severity) hit the news earlier this year, I had yet to hear a medical or media professional make any of those points clear. In the first of the guardian articles “The Trouble With ME”, amidst the irrelevant information and radical opinion, one consultant does offer some sensible thoughts:

“Alastair Santhouse, consultant in psychological medicine at the South London and Maudsley NHS Foundation Trust, was deeply concerned by much of the press coverage, which depicted ME/CFS as a terminal illness and wrote to say so in the British Medical Journal. "It was being talked about in terms of the euthanasia/assisted suicide debate," he said. "It is an awful illness – chronic, unpleasant and very isolating – but it is not a terminal illness. There are treatments available and they are not perfect but we as a profession should not be giving up on people.”

The second of their articles is billed as a “first person account of living with Chronic Fatigue Syndrome” but is misleading for its brevity, though with the best of intentions.

The truth about life with M.E/CFS is a little more balanced – which of course is often far too dull for the British media! Yes, there are dramatic lows, which would probably elicit a couple of hundred pounds from Take A Break magazine if every desolate detail were exploited in full. It just wouldn’t be a very fair picture of life with M.E/CFS, which is the thing sadly lacking from the illnesses recent surge in popularity.

I began having clear problems with fatigue ten years ago when I was just 14, and failed to recover as expected from the serious illness which had blighted the previous two years of my life. No one could understand why I wasn’t showing signs of improvement when I should have been, and it became clear that the fatigue wasn’t simply a symptom of medical-malaise, but was a distinct issue in-and-of itself. M.E/CFS is more than just fatigue, it is a collection of rather nondescript symptoms which vary from person to person, but are very much centred around being incredibly tired.

The fatigue is a soul-crushing exhaustion, the like of which I have never experienced as the result of a long, hard day. It isn’t the sort of tiredness you get after a terrible day at work, or even after an extra-tough slog in the gym. It’s a mental and physical weariness more akin to the debilitating weakness you feel when you have a really bad case of the flu, or the worst hangover you can imagine – only without any of the fun the night before! The fatigue is complicated by severe aches and pains, which make muscles tremble and bones feel like they burn alternately with fire and ice. Also headaches, confusion, inability to concentrate, nausea, sensitivity to light, dizziness, lack of apatite, poor memory, and a raft of other issues mean that to some extent every day has to be negotiated through that fluey-fog. What marks out a good day is the ability to do normal things in spite of it, because it fades enough to be manageable after a few hours of being awake. On a very bad day, it doesn’t fade at all. Next time you wake up on a cold day, feeling rough, and you are so desperate to go back to sleep that – for a few seconds – you honestly can’t envision how you will drag yourself out of bed, imagine what it would feel like if that desperation lingered all day. If there was no way to shake it off with a shower, or a bit of willpower. How would your life change, if that overwhelming need for slumber was the overriding feeling for more than a few minutes, and you couldn’t muster the physical or mental energy to move yourself out of bed even if it were on fire around you?

That’s what most M.E/CFS sufferers have to contend with every day, some for a few minutes, and some for weeks or months at a time. I consider myself lucky that, in general, only the first hour or two of every day is like that for me. On a bad day when it doesn’t recede, I’ve known it take half an hour before I can force myself out of bed – which might not sound like much, but trust me, it’s really annoying on a day when you wake up needing a wee!

All that, when viewed on its own, quite obviously makes life incredibly difficult, but that’s not the whole story. Yes, it certainly makes even the most mundane day-to-day living more of a challenge, but does not make everything impossible. People are adaptable creatures, it’s what has helped us colonise the planet and remain at the top of the food chain for millennia; growing and expanding as we develop new skills and behaviours. Such is life for someone with M.E. For every symptom that creates issues, there’s a creative solution being implemented by somebody. Plenty of people manage a variety of incapacities without allowing their lives to grind to an agonizing halt. Amputees use wheelchairs or prosthetic limbs, ugly people get jobs on the nightshift, and those with M.E/CFS find ways to work around their constant fatigue. Tiredness this severe is a disability, but not a hopeless one. Admittedly, at its worst there is nothing to be done but surrender to it and rest – but at other times a moderate approach allows for far more normality than many people would envisage. Many sufferers have families, many others manage to hold down jobs - they just do it all with that fluey-fog lingering overhead, finding ways to get around the difficulties they face when their illness clashes with their aspirations or responsibilities.

The best explanation for the energy-compromise we all make is “The Spoon Theory” – written in the early part of the century by Lupus sufferer Christine Miserandino. (It can be read online here, and I really, really recommend it.) The condition she has is different, but the management is the same. People with M.E/CFS have a limited number of units of energy per day, and even the smallest tasks cost units. Getting out of bed? 1 unit. Showering? Another unit. Getting dressed, hair and makeup, making breakfast, eating breakfast, watching morning telly… All individual units expended before you’ve even left the house in the morning. Once you’ve used up your full reserve of energy, that’s it. You’re exhausted and couldn’t do anything else even if you had the mental energy to want to - which, if you’ve run out of units, you simply don’t. Most people begin each day without knowing exactly what they’re going to do, open to the possibility of spontaneous ideas or activities. Those with M.E/CFS don’t have that luxury, or at least not without having to trade off on the other things we might have planned to do.

I manage my fatigue by working from home, having a laptop not a PC, being incredibly anti-social when going through a bad patch, and taking to my bed to rest whenever possible like a spoilt Victorian aristocrat. I know that if I have a busy day ahead, I have to rest up the day before, and write off the day after, in much the same way others would prepare for a marathon drinking session to celebrate a birthday. You know you’ll pay for it after, but that’s a compromise you decide you’re willing to make.

All of that adds to the complexities we are all faced with when going about our lives, but it certainly doesn’t mean life is in any way “over”. Unfortunate as it is that there are people like Lynn Gilderdale who never find a way to live with their symptoms, they are in the minority, and the message that it is possible to have a life and a disability is one that needs better representation in contemporary media. Until we understand the causes of M.E/CFS, the least we should do is report a balanced take on the consequences faced by the people living with it.

Now I’m off to lie down, because I used up a unit writing this blog post, and have to have a rest before I can get my lazy backside downstairs to make the cup of tea I am yearning for. (Yes, this was as much of an endurance-test to write as it was to read). On second thoughts, as you'll be needing tea of your own, you can make mine too. Go on! It’s M.E Week! I’m the centre of attention here. Me, Me, Me, Me, Me.

Tuesday, 23 March 2010

Painting By Numbers

In an overdue bid to mark World Poetry Day (celebrated on the 21st March) here's the press-shot from the Valentine's Big Screen shenanigans outlined in my previous entry. (I'm the pallid looking creature in the pink scarf, and this photo illustrates both my dislike of daylight illumination against my blueish-white Twilight-tan, and the face that my face always freezes into the least flattering grimace whenever there is a camera present.)


As you can see it was rather a motley crew of local women participating in the event, though I think that had more to do with the format (love poems) and the fact that it was the middle of the working day on a Tuesday afternoon. While I'd like to say that only the creme-de-la-creme were selected for press participation as part of some elaborate marketing strategy championing fiery-female literature, it's more likely that schoolgirls, retirees, pensioners, council workers from the offices neighbouring the square, and my unemployable self were the only ones available at such short notice.

The poem that was originally adapted into an animated image for the Big Screen event was a crown cinquain titled By The Light. I've always struggled to write on demand - and have even more difficulty practising any economy with words when it comes to any of my writing; be it a hastily scribbled post-it alerting passers-by of the fridge to an unexpected deficit of cat food, a blog post, or an article for a magazine. Abusing my allocated word count and my readers' patience has been a stumbling block since the days of school-essays, and cinquains force me to write outside of that familiar, comfortable style.

A cinquain is a five-line poem with a very strict syllable count; two syllables in line 1, four in line 2, six in line 3, eight in line 4, and two again in line 5. A butterfly cinquain (another favourite in this style) repeats that pattern, but inverted. A crown cinquain such as the one featured here repeats the 2,4,6,8,2 structure five times.

Those very strict parameters are the reason I find it both a challenge and a joy to write cinquains. These poems require endless editing and sculpting to fit within the constraints of the style - constantly snipping down my preferred verbose similes and wildly meandering metaphors until all that remains is enough skeleton imagery and emotion for the readers own imagination to flesh out. This is always an incredibly daunting task for a writer who seeks solace in literary loquaciousness, but is equally thrilling for my inner logophile, and is an excuse to crack open my mental thesaurus. (That sounds like I keep a disturbed dinosaur around to help me find alternative words, which though not my current editing method, does sound like more fun than that irritating paperclip who lurked around Microsoft Word on all the computers at school.) There is also something charming about the purity and simplicity of cinquains that appeals to me. Without having to worry about making sense of any self-imposed rambling structure, I find myself free to really focus on the imagery at hand, while also challenging the importance of every word. It's an entirely different perspective for me, as so much of my work relies on the swirling rhythm of the overall piece, with far less emphasis on many of the words used to create it. My usual manner of poetry is literary pointillism - becoming clearer as the details blend. Cinquains necessitate an opposite approach, and it is this polarity which first attracted me to the style.

That is all a rather dreadfully technical dissection of this piece's creation, and possibly makes for a terrible introduction to a poem which - while pleasingly elegant - could hardly be described as substantial. Here it is however, presented as was required for a commission last year, with the image that inspired it.

By The Light
Copywrite K Lawrence 2009

If you've suffered through this much of the blog, your name is automatically entered onto next years' list of proposed recipients for the animal* version of the Victoria Cross, for bravery and endurance beyond the call of duty.

(*Even my influence has its limits.)

Friday, 12 February 2010

Fame and Misfortune

Yesterday I was rather rudely woken by a phone call from the council. Usually this would be reason enough to throw the phone out of the window, refuse to pay my taxes, and chain myself to a local MP until they apologised for all the heinous crimes the government has committed. (Top of the list being the war, I know waking me up would only come a close second.) This time, however, the call turned out to be a rather welcome surprise.

Two weeks ago local poets were asked to contribute love poems to a special Valentines Day exhibition, to be displayed on a big screen in the town centre. I didn't really have anything that I considered to be suitable for a family audience. The first 'romance' poem I ever wrote was about a prostitute at the Moulin Rouge, and the most recent - which was published in an anthology just before Christmas - was described by the first person who read it as making an "almost pornographic" use of metaphor. So, not holding out any hope of it being accepted as 'lovey-dovey enough', I sent in a piece I wrote in the summer of last year. It was inspired by a photo of a couple on a moonlit beach, and indulges itself in detailing the soft, seductive glow of lunar lighting on young lovers. I heard nothing back, and assumed that it had been discarded, because subtle amour hardly ever has a place in commercial Valentines events.

When Craig (or to give him his full title, The Man From The Council) rang me, I was told that the piece would not only be included in the exhibition, but that the Big Screen project is run by the BBC, who had to approve all the entries put forward by the council. It was then that he asked me if I could pop down to the town centre on Friday, because the local newspaper want to run a little Valentines Day feature on the exhibition.

So once again, I have accidentally wound up with a little more than I bargained for!

This is where the poetry will be screened on Sunday 14th February between 12pm and 2pm.

Unfortunately, though a rather rag-tag band of poets turned up to do the interview, the reporter got held up. The photographs were taken, but in the absence of the article I suggested that Mr Council Man Craig get consent from the contributors to have their work printed in the paper. That way the News get their valentines poetry feature, and the council get some publicity for their big screen event. We'll see if it materialises...

The day wasn't a complete waste of time, however, as my Max Clifford coup aside, I also met a couple of people from a local performance poetry group that I'd stumbled across a few days ago. The group meet once a month in a local pub, and mix open-mic poetry readings with live music, which sounds great, and certainly warrants closer investigation at their next event!

I wasn't surprised The News didn't show up for the interview, as they've been busy all day covering the latest step to regenerate the High Street. Today was the launch of a new homewares store on the site of the old Woolworths, which had lain empty since the company went into administration. Now former-Woolworths employees have set up "Alworths" in its place, and my stepbrother - who is now working there - was on hand to help them out with the grand opening!

It's good to know they're equal opportunities employers, isn't it?

It's not only the local news which has been busy of late, as I was also deeply saddened to hear in yesterdays National coverage about the death of a remarkable man; the fashion designer Alexander McQueen. Alexander McQueen was one of the most creative people in fashion, certainly within his generation. His catwalk designs were a spectacle - and whether or not you liked his shows, his talent and imagination was undeniable. He was a really ordinary sort of man; quiet and unassuming until broached about a subject on which he was passionate, and once riled he was well known for being outspoken and reckless. That said, he was never a poseur or a pretentious diva like so many in the fashion industry - or the celebrity circuit as a whole. He was the sort of Londoner you walk past in the street every day, or hang out with in the pub.

Despite his earthy roots, his innovative approach to colour, shape and style within fashion completely redrew the boundaries for catwalk shows, and he created some truly beautiful pieces of "art". Many wonder why the death of a glorified tailor is such big news, but they underestimate Alexander McQueen's impact on British culture and style. With a list of revered celebrity clients, and a reputation for eccentric genius, he may not have made the headlines of every newspaper - but you can bet he's dressed many of the people who did, and his inspiring outfits were often the reason they'd made the news in the first place!

Had his medium been paint and canvas, or film and CGI he would be considered an artist. Just because he created his masterpieces out of fabric and leather, doesn't make the loss of his astonishing imagination and daring eccentricity any less great.

McQueen's life in pictures from The Guardian

Besides, the man made the kind of shoes I'd sell my soul for.

The news also provided me with another 'nanecdote' this week, when the teatime coverage of the woman who killed her lover by poisoning his curry, prompted the following conversation with my much-quoted Nan.

Newsreader: "Mr Cheema, known as 'Lucky' was left blinded and paralysed before he died..."
Nan: "What did they say people called him?"
Me: "His name was 'Lakhvinder'. They said his nickname was 'Lucky'."
Nan: "Why do they call him lucky?! He can't have been that lucky if he was murdered!"
Me: "Well I think they called him lucky before he was murdered. I doubt they've started calling him that since he died."
Nan: "Oh, well, it doesn't really matter. Poor man's dead now. ...I've never much liked the idea of curry, you know."

So there you have it. It's fine to have mental ex-girlfriends who try to poison you when you move on with your life, just steer clear of spicy food, for it will be your downfall.

While I'm scribbling this, I want to wish a very happy birthday to my other elderly friend, Anna, whose youth was finally ripped kicking and screaming from her clutches today.

Not sure what her excuse was before, but now she's hit her 'flirty thirties' Steve Thompson had better sleep with one eye open. ...And shower with the door locked when she's at Burnley's ground. Actually he should probably just have his kit on already under his clothes, and not shower until he gets home. To a place with CCTV. And lots of alarms...

Saturday, 9 January 2010

Happy-Slapped by a Gastroenterologist

Welcome to the first blog entry of 2010. I wonder how many blogs this month have begun with variations on that introduction? I'll try to be more original in future - without resorting to the gratingly-zany wackiness of the Rowntrees Randoms advert. If I ever try and begin a banana with a random postman then you have my permission to pour custard on my cherry tomatoes. ...For anyone unfamiliar with the ad in question - who now thinks I'm still hung-over from New Years' - watch this codswallop:

Following a lovely Christmas with the newly-reconfigured family, nasty colds meant that many of us saw in the New Year with bugs that probably warrant their own X-file. I'm not a patient patient, and my cold was always much worse at night than during the day - leading to many a comparison between myself and one of the Gremlins (post midnight-snack.)

Being unwell on holidays really shouldn't be tolerated. In the same way the French protested against wheel clamping by injecting superglue into the lock of every contraption they happened across, Mother Nature should be forced to rethink; as each and any one of us shoves an Olbas inhalator up the nose of every passerby who sniffles within our reach.

My unseasonal malaise began just before Christmas, when I had to attend a routine check-up at the hospital. Due to a family history of Ulcerative Colitis (and a personal one come to that), I'm required to undergo cancer/abnormal-cell screening every couple of years. Now, it's never pleasant, but always necessary - and means letting a strange man get closer to me with a camera than even Paris Hilton would allow...

Honestly, people complain about CCTV, and "living in a Big Brother Orwellian State" but they haven't the faintest idea just how much of a liberty SnappySnaps and Co. actually take. Some things just ought not be captured on film; like any time Les Dennis or Keith Chegwin take their clothes off, or the inside of my remaining digestive tract. Colonoscopies are like clinical happy-slapping: inflicting pain on camera. Gregarious film critic Mark Kermode calls it "torture-porn" when they do so in movies, but I really don't think that what they do to me biannually is for anyone's gratification.

Ever since watching the BBC's season of charming Alan Bennett monologues, I can't help but read these more mundane of my ramblings in his distinctive kitchen-sink-drama voice. I have at least one acquaintance who finds Bennett inexorably dull, which probably lends itself better to the comparison than I have the right to seek in any other respect.

Due to a lack of inspiration - and indeed motivation - to write of late, I've found myself falling back in love with an old flame. What is the object of my re-ignited passion? ...Jewellery design.

Although as a dedicated logophile words will always be my first love, I must admit to several illicit affairs with various aspects of colour, shape and form. From a pre-pubescent love of photography, to an adolescent admiration for design, I have always enjoyed the creative process of weaving something that did not exist until I saw how it should be. All my writing stems from very similar origins, and my enjoyment of literary and fashionable pursuits have long jockeyed for position. Usually the two work reasonably well in tandem. I am flighty, and tire of projects easily, so when I become disillusioned with one outlet for my imagination, I've always been glad of the other to fall back on.

Writing is the one I could not live without - I'm far too opinionated and narcissistic not to have some journalistic outlet - but my eye for colour and unusual shapes means that design is very important to me too. It's a natural part of the way I interact with the world - I see it as an artist, albeit not one of any groundbreaking insight.

Professionally, there is very little opportunity to write at the moment, and apart from my usual poetic outlets, I've been lacking in productivity. Some poets can sit and write about any given subject 'on demand' - will themselves into a mindset where their talent is readily accessible. I, however, have never mastered that skill. While all creation - be it within science or the arts - is a somewhat magical affair, instead of being an alchemic recipe for new life and ideas, mine is far more of a New Age bastardization of Paganism. I don't mix all the ingredients and come up with something astonishing - I must just hang around on the second Tuesday of the full moon wearing red knickers, and wait for a word, or an idea to spark something into being. As the full moon this month was on a Wednesday and my red kecks were in the wash, no sparks flew. So back to jewellery design it is.

As the company I was involved with before have cut so many of its staff, I am not in the position I was previously of being able to design exquisitely expensive pieces and submit them to a workshop for manufacture. For a while at least, I will be back to making the items myself. Hopefully it will give me the chance to expand my silver and goldsmithing abilities, as I get back into manufacture as well as design. Gemmology is a subject I retain a highly-geeky knowledge of, and a return to jewellery design is an exciting prospect.

If and when I launch a few items online, it will be via an Etsy store, and I will announce the details and promotional codes here, so that those of you who suffer my ramblings have some form of compensation for so doing. So watch this space! ...Not literally. It could be a while, and if you just sit there watching then I'll end up being reported to Watchdog as the person responsible for your deaths - like the DJ who challenged his listeners to drink as much water as they could, and one of them died. While inciting such idiots to follow their natural instincts is not a crime I believe to be too heinous, nonetheless it's not the sort of publicity I really need!

So have a Happy New year, and don't have nightmares...