2018 and all that.

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Onward and upward...

I have been very quiet on the writing front for the last few months, as far as blog/journalism is concerned, but I have a cast-iron excuse...

For most of 2017, I was working on a new book which I am really excited about.
The project different from my previous book in many ways, and yet eerily familiar in others.

This time out, the project is a collaboration: I am helping a friend to tell his story. I can't say too much at this stage, except that it is a white-knuckle ride of a tale, that it too involves spinal cord injury, and that it will be published by Penguin in Australia in August/September 2018.

Away from the coal face, or should I say type-face... See what I did there? Clever, huh?
I am feeling pretty settled into a rather slower-paced existence in small-Australian-town-by-the-ocean, although there are certainly times when I miss big-English-city-at-the-centre-of-the-universe.

For starters, I spend a lot more time here dressed in rubber with a tube in my mouth. Snorkeling. I'm talking about snorkeling, of course. Why? What did you think I meant?

Having spectacular scenery the ocean on the doorstep is a profoundly enriching experience, if inevitably bitter-sweet. Sand continues to be my nemesis, and as it's usually between me and the ocean, I am constantly frustrated by the waves reaching out so tantalisingly.

In truth, the sand is not the only barrier to my enjoying the ocean. Bitter experience has led me the realisation that the effect of being in the surf can be recreated at home. All I'd need to do is climb into the washing machine with a bag of sand. The rough and tumble of the waves is made all the more dramatic when you are sat on the sand unable to move your legs. Wave one knocks you onto your back, wave two goes up your nose while you're still trying to get your balance after wave one, and then wave three drives sand into every orifice.

However, there are still some locations along this most beautiful of coastlines where the water is calm and access is possible. And that's when I get to feel the freedom of drifting in the water, suddenly weightless, my legs floating behind and the world is my oyster...

Well, actually an oyster is my oyster, but I don't really like oysters, so that's irrelevant, except the oysters do become relevant when it comes to getting in and out of the water, and that's where the wetsuit comes in. I have customised mine to include an extra layer of neoprene in the seat so that I can drag myself over rocks and sand with relative impunity.

And if anyone tells you I'm wearing the wetsuit because I can't deal with the cold water, I'll deny it, of course.

So, we're we're into March, and I'm still thinking about what my resolutions for 2018 should be.
Go with the flow probably sums it up. I will update this blog more often, and give it a facelift soon. But that said, it's taken me nearly three months to finally post this, so don't hold your breath.

What I have been doing for the last few weeks is trying to get off one of my pain medications. It's called Gabapentin, and it's been in the news a lot of late, which reports of people taking it recreationally, which I really don't get. The first time I took it twelve years ago, I was away with the fairies for about twelve hours, but that effect soon abated.

In trying to get off one of the drugs I've been on for twelve years, I am confronted with the reality of living with chronic pain. It gets worse for various reasons, but never falls below a base level, and the accumulated effect of sleep disturbance can seriously affect cognitive function and mood. This what led me to go back onto the stuff after ten days, or more accurately ten nights, when even sleepers had little effect beyond the first hour and a half. Interestingly, I did have more dreams during the few hours of sleep I snatched over the course of a week and they were really vivid too, which is a worry as it makes me wonder if the Gabapentin is shutting down that most creative part of my brain or affecting my memory.

I do share concerns that many others have expressed about Gabapentin and it concerns me that I've been on the stuff (as well as amitriptyline, the single most difficult drug to spell) for so long that I can't help but wonder what effect it has had on me in waking hours  as well as when I'm asleep.

I will continue to explore other options once I've had a review of my neurological condition, which hasn't been done for many years, but for now the focus is on being productive when I'm relatively awake, and basketball which, while it hurts for hours afterwards, seems to trigger an endorphin that can reduce my base pain levels for several days after.


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A quick post to celebrate my donning a different hat (I really have far too many), this time getting back to art.

It has been far too long since I last put an exhbition together - painting tends to be the activity that is most easily bumped by the pressures of making a living, parenting, etc. - and I was delighted when Jamie and Bruce at the Little Blowhole Art Bar in Kiama presented Penny and I with the opportunity to show together.

Since moving to New South Wales from London I have been fascinated by the cabbage trees (Livistona australis) that pepper the paddocks of the region. Wherever these trees are found, they stand as an echo of the rainforest that once covered much of the area. Quite why the cabbage tress were left is far from clear. There are numerous theories, from a desire to keep a tropical feel to the landscape, to the use of fire to clear the undergrowth after the forest was logged.

As the paddocks are used to graze cattle, there are no new palms emerging, so the trees that can be seen are all hundreds of years old. The trees have also played a totemic role for the Tharawal (or Dharawal) people indigenous to this part of Australia. There are songlines that tell of the trees having been spread throught the coastal areas of NSW, and the heart of the palm can be eaten, although this kills the tree and was therefore only consumed at special events or in lean times.

My desire to record these magnificent trees led me to use calligraphy brushes and ink to lift them out of the landscape and present them in a new light, highlighting their individual forms and in stands of multiple trees. The work has almost sold out now (although I am happy to take commisions!), but here's a link to the online gallery: http://www.pennysadubin.com/#/echoes-in-the-landscape/



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This post has been a while in coming, as I have been a little unsure as to what I was feeling this time. Most years, when April 1st comes around and much of the world turns foolish, I reflect upon my accident and the changes in my life that ensued.

For those that don't know, I fell from a tree and broke my spine on the 1st April, twelve years ago. As each year rolls around, I never tire of the irony that this date represents for me, especially when the Health Service launches a campaign to reduce accidents among the mobility impaired and calls it "April Falls Day".

So, each year, I look back on my accident, the impact it had on me and my family and friends (virtually no-one has a spinal cord injury alone, and the impact on loved ones is often under-recognised), and I think of all the things I have done since, in spite of, or even because of that accident and my paraplegia.

It's a mixed picture. If I could go back and have another crack at it, I would choose a different path, but where that divergence came would be a hard choice. I'd probably still want to do the tree surgery, because that stuff is cool. Climbing huge living structures and doing what we can to keep them in good health is a great thing to do. It's also exhilarating.

Perhaps we might have made the move to Australia earlier? Started a family sooner? The list of options is endless, and all of it is completely irrelevant. We have but one life, and the path we have taken cannot be erased, only learned from.  Or something like that.

So as I can't have a do-over, I am stuck with two areas to focus on. The good and the bad (but what of the ugly? I hear you ask. Dear me, you really need to update your cultural reference points. That film is virtually as old as I am).

The bad is a long list, and one which has not become much shorter, save an initial flurry of activity in the first couple of years post-injury.

Not being able to walk or run sucks. Not being able to kick a football with my kids hurts a great deal. As does not being able to walk on soft sand, feel the grass between my toes, ride a surfboard, go seriously off road on bush tracks, etc. Then there's stairs, of course...

Being in constant pain sucks. All the time. It never gets easier. And it colours everything that I do and feel and think.

Not being six foot three anymore. Or thereabouts. Having to look up people's noses or try and work my way to the front of a crowd. Not being able to change lightbulbs, clear gutters, reach things on high shelves, etc.

Becoming the unwilling recipient of people's ill thought through platitudes that are usually intended to make me feel better, but only serve to provide succour for the messenger. Yes, there are people worse off than me. Yes, things are better now for 'people like me' than they were twenty or thirty years ago. Yes, technology and modern medicine is doing amazing stuff, and may even find a cure one day. No, I don't believe in God, and certainly don't see what I'm supposed to get out of your musings over what a non-existent supreme being may have had in mind when 'He' selected me to have a spinal cord injury. All I really want to do is get out of this fucking shop/car park/changing room/theatre/balaclava, etc.

So. That's the glass half-empty.
But on the plus side:

I have gained some great friends and learned from their fearless approach to life after injury (sadly, I have lost some of them along the way, and that hurts greatly. Death feels like a huge injustice).

Wheelchair basketball. As a consolations for not being able to play football anymore, it's a cracker. Wheelchair tennis is pretty good too.

I don't have to stand for national anthems. I never liked all that stuff, nationalism, flag waving etc. History is on my side on this one.

I have a different sense of what's really important in life (but maybe that just comes with the years on the clock and being a parent).

I have less time for superficial conversation. But I'm not sure I was ever very good at talking about superficial things unless you count football. Which you shouldn't. Because it isn't.

I am more confident in my ability to overcome challenges. This could be facing another day when feeling a bit shit, but more often it's just about working out how to do stuff.

I am more confident about tackling new things. "How hard can it be?" is usually what's going through my head when I am faced with something for the first time.
That's the glass half full.

 So now I face my thirteenth year, post-injury. The kids are both at school full-time, I am having my first art exhibition for a very long time in August (if I pull my finger out and get some work done), and I have just signed a contract with Penguin to co-author a rip-roaring tale of survival against the odds (if I pull my finger out and get some work done) I will say no more at this juncture.

In a change with tradition, I have decided to switch to a smaller glass. And guess what? It's full.

Finally, I would like to write a few words in honour of Daniel Turnbull, a man who touched many lives. This is what I shared when I learned of his passing,

Me sitting in a wheelchair, heading off the ward for the first time. Barely out of bed four weeks after breaking my spine, and this dapper chap in a wheelchair, sharp suit and shock of blond hair gives me a smile and says hello. Suddenly, a future doesn't seem quite so impossible. He was visiting a patient in his role as a solicitor, but he had time for me too.We talked about the accident. My accident. Well, mostly I talked and he listened. I think I cried a wee bit too. But he allowed me the space. He understood. I felt like I had joined the most fantastic club that no one ever wants to become a member of. I felt stronger.

I also noticed that he only had one castor wheel on the front of his chair, as he back wheel balanced his way around the spinal unit. Didn't have the time to get a replacement fitted, he told me with a grin...

Rest in Peace, Dan. Your life was far too short but, boy, you made it look like a lot of fun.


A clear view and a sit down lunch.

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It's been an interesting week so far, and it's only Monday evening...

The last two days have been peppered with incidents that illustrate some of the more unusual awkwardnesses of living with a spinal cord injury (things even more awkward that trying to pass off 'awkwardnesses' as a word).

Yesterday morning I finally got down to the rock pool for a swim, something I have been promising myself for some time, but somehow I always find an excuse to make it too much of a hassle. Inevitably, my swim coincided with a high tide, and while I thought I was past the peak, I still returned to the edge of the pool to find my wheelchair was rather more damp than is good for it. I shall now be spending most of this week replacing the bearings as they seize up, one by one (incidentally, have a guess how many sets of bearing there are in a typical wheelchair. Nope. Not even close. Ok, I'll tell you: 12. Twelve of the bastard things).

Still, I am resigned to the effects of the ocean on my chair. It goes with the territory, what with living by the ocean.  And the dampness of my wheelchair when I got out of the pool was as nothing compared to the dampness of my wheelchair after got back into it in my new wetsuit which, I have now discovered, hides goodly amount of water in various nooks and crevices that is subsequently released by sitting.

No matter. I felt serene after the swim, and the sound of the waves crashing always soothes my soul, so I headed back to the carpark feeling relaxed.

A little too relaxed, as it turned out, because I forgot to apply the brakes on my wheelchair when I transferred into the car. This is a bad habit that doesn't usually incur any adverse consequences, unless I am on a hill. On Sunday, I was on a hill. Not only that, but the slope ended in a drop off the sea wall, against which the waves were crashing with some vigour.

All I could do was dump my mask and snorkel into the door pocket and utter, "No. No. No." to myself as I watched my wheelchair, replete with my wallet, mobile phone and car keys, snake lazily down the slope towards the edge. Thankfully, and perhaps inexplicably, my chair turned sideways and came to a halt a meter from the edge, and all I had to do was wait a couple of minutes and ask a passer-by to wheel it back over to the car.

As I put my wheelchair into the car, I felt like I had dodged a bullet, and that the day was going to be great. I swung my feet into the car and slammed the door with enthusiasm. Unfortunately, my diving mask wasn't in the door pocket as such, but was hanging half out of the door pocket, and this happened:

mask.jpg So that was Sunday.

Today's incident involved lunch. I was sitting on the floor at lunchtime, adding a new door strip to the back door in a bid to stop a lake forming in the laundry whenever it rains. Penny brought me a piece of toast with feta, tomato and basil. Seeing that I was engaged on the task in hand and not wanting the dog to get my lunch, she hit upon the practical solution of putting the plate on the seat of my wheelchair.

I can't honestly remember having a conversation about the plate of food, and once I'd finished fixing the door, I pulled my chair around and hopped back into it. I say 'hopped', but it's a bit more of an effort than that implies. It also involves me bending forwards and facing the ground as I haul my arse into the air and try and stick the landing.

Three hours later, and some time after having made and eaten my own lunch, thinking to myself, "I'm sure Penny asked me earlier if I wanted some lunch..." I got out of my wheelchair again, only to discover a plate under my backside. A plate containing the squashed remains of the feta and toast. The absurdity of it all.

In truth, I am extremely lucky. More so than my wheelchair not ending up in the Pacific. I am lucky because I have 'good skin', which is to say that it doesn't mark easily. For some people with spinal cord injury, sitting on something as unyielding as a plate for three hours would be certain to cause a problem that could in turn lead to a pressure sore, and a prolonged period of bedrest. In extreme cases, pressure sores can lead to serious infections and even death.

So all in all, I'll take the broken mask, the seized bearings and the squashed lunch. Not only is it all just 'stuff', but they also represent the baggage that comes with being able to live a full and active life.

Welfare or investment?

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My latest piece for the Guardian discusses the political opportunism of linking the National Disability Insurance Scheme funding to cuts in welfare funding. It's funny how funding for projects like NDIS is never given as a justification for not implementing tax cuts for top earners and big business. Perhaps funny is the wrong word. Infuriating, maybe?

NDIS has the potential to offer a net saving to the Australian Government but they refuse to discuss it in these terms, despite the reams of evidence offered by numerous independent studies, instead preferring to use it as an emotional gaming chip in an ideological battle.

You know what they say?

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An interesting encounter in the car park of our local shopping mall last week...

As all of the disabled spaces were filled, I had to park in a bay and a half in order to allow sufficient space for me to get my wheelchair out of the car. This is not uncommon, and particularly frustrating, as there are no wide bays other than those near the door. I don't need to be close, I just need to have enough space. It would be great if car parks either provided a couple of wide spaces much further away from the doors, or even have one or two bays for wheelchair users only.

So, I had opened the doors and I was getting ready to pull my wheelchair off the back seat, when I see a man strolling towards me through the parked cars.
"You're parked a bit wide there, champ."

Champ? CHAMP? If I was in a 1950's Science fiction movie, and I was an 8 year old boy called Johnny or Biff? By all means call me champ. But I am not. So please do not.

"I can't get my wheelchair out otherwise." My mission to explain kicks in again.
Ah, yes." He nods sagely. "Must be hard for you."
"It can be." I reply. Oh, how I wish he'd make it a bit easier by sodding off.
Then comes that most irritating of questions: "You know what they say?"
How can I possibly know what they say? To start with, to which 'they' are we referring? I mean, that's important. It might even reveal what language I should expect, let alone whatever cultural bias or world view is playing a role. I consider just saying, "Yep. I know exactly what they say." But unfortunately this reply only pops into my head a few days later. Next time...next time...

My silence is interpreted as, "No, I don't know what hey say, but this is me hanging on your every word. Please bestow upon me some words of profound wisdom."

"God only lets these things happen to those who are strong enough to cope."
Boom. Not for the first time, I am presented with what is supposed to be a comfort in my time of need.

At the risk of repeating myself, one of the more distressing aspects of this statement is that I know from personal experience that some people can't cope. They are crushed by the experience of spinal cord injury and all that it entails, and they check out early. I have lost friends like this.

I'm sure that some people derive strength from their faith. I can imagine how it could offer sense where there is none, to feel that there is some grander plan which they can't understand, but which ensures that everything will turn out alright in the end.

But for me, the idea that there is some omnipotent deity who could have intervened but chose not to because I was strong enough to cope, is no comfort whatsoever. Even more upsetting is the idea that such a supreme being chooses to allow young children and their parents to go through the terrifying experience of having cancer, or a rare medical condition that suddenly cuts a life so very short.

So what's my point?
Well, if you want to talk to me about life with a spinal chord injury or disability in general, then by all means ask. But pick your moment, and perhaps introduce yourself first before you launch into a discussion about some complex and potentially emotionally charged issues.

If you want to drop some half-arsed platitude on me? It doesn't help. Really, it doesn't. Especially if it's some folksy, crumb-of-comfort, superstitious bollocks. Things don't always happen for a reason. Nor do they only happen to those who can cope. And while I'm on the subject of simplistic-philosophies-which-have-no -practical-bearing-on-everyday-life, while it is true to say that there is always someone worse off than me (or you, or anyone else. As long as they are still alive, that is), this is not a helpful observation. I am not they.

Enough. I think you get the idea.

Taking the woof with the smooth.

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Another long hiatus from this blog, for which I can only apologise. I now realise that I haven't even made reference on here to my most recent Guardian piece: On the language of politics.

Anyone who has had a conversation with me will know that I am not overly sensitive about the language that I use. Indeed, I often revel in the more 'colourful' means of expression that English can offer.

But there is a clear distinction between face-to-face conversation and political speech. The parameters of conversation are defined by the individuals engaged in it, and misunderstandings can usually be noted and addressed. We all do this all of the time, whether we are fully aware of it or not, as facial expression and body language will often draw attention to any misunderstanding or confusion. We have all applied some kind of adjustment to the way we speak according to our audience, be they elderly relatives, plumbers, financial advisers or neighbours at a football match.

But when people in elected office (or indeed campaigning for election) deliberately choose confrontational language intended to shock some and belittle others, the impact is more profound and dangerous. We have seen how the rise of Trump and the Brexit vote have led to a newly emboldened far-right (there's really nothing 'alt' about it. It's fascism, whether it be with a big or a small f), and an increase in attacks on minorities.

From a disability perspective, there is much at stake. In recent years there has been a greater acceptance of the principal that people with disabilities should be able to participate fully in all aspects of society, but the same time, there has been something of a hardening of attitudes toward those in receipt of state support. This has been fed by columnists in print and broadcast who have made their reputations by 'telling it like it is'. This usually involves telling it like it isn't and throwing in a few choice phrases intended to fire up the 'left wing liberal elite' (a phrase that suggests some kind of sinister cabal who gather to plot new ways to crush the dreams of their helpless victims, such as billionaire racist-misogynist hoteliers, financial traders-turned-political-rabble-rousers and Jeremy Clarkson. I am yet to find out how to join).

The reality is that said columnists and broadcasters are living in just as much of a bubble as those they claim to be fighting. The more they claim to be the voice of 'the man on the street', the more likely they are to have come from a position of privilege far-removed from said man, and the real cost of all this socially divisive vitriol will be borne by those on the margins of society who rarely have a voice.

We should of course celebrate language in all it's most colourful, sharp and even insulting forms. But there is a time and a place. Conversation is fine, and the arts offer opportunities to push the envelope, but those elected to public office really should behave like adults and leave the language of the playground behind.

All of which is NOT what I wanted to write about, as you may have gathered by the title of this post. We now have a dog. I am a dog owner. I'm sure I will come to terms with this over time, but it's a huge adjustment. The unthinkable occasionally happens and we have to find ways to adapt to our new situation.

In my case, I have spent the last twelve years railing against selfish dog owners who let their animal shit anywhere (believe me when I say this is right up there as one of the most frustrating aspects of getting around in a wheelchair), or those with staffy/mastiff/pitbull/hyena/cerberus cross-breeds. ("He won't 'urt cha!" Yeah, as long as I don't move a muscle or 'show my fear'. If the dog decides to bite, there's nothing anyone can do about it, short of sticking your finger up the dog's anus, apparently. If the reset button on a computer was located in a similarly enticing location, we'd all still be using typewriters).

Of course, our dog is different. He's called Mack, he's a rescue dog, and the way he shies away from sticks makes it quite obvious that he's had some rough times in his first 18 months of life. His poo smells of roses and floats just off the ground as it makes its own way to the bin. Okay, it doesn't. It's poo, it's horrible and it has to be picked up. And if you are in a wheelchair, then this also involves wheeling around with a bag of poo on your lap. He also farts. Quite a lot. The first day we had him, he managed to let one go just as I was bending down to pick something up off the floor so I ducked right into it. It was so bad that couldn't see for about ten minutes afterwards.

I had hopes of training him to help get me up the hills of this small town, but we would have had to get a team of huskies for that, and they're really not suited to the Australian climate, and our requirements for a dog were already complicated enough. We needed to find an animal that was okay with children and chickens, and not afraid of the wheelchair. This is one of the best things about getting a rescue dog. You can approach the charities with a details list of requirements, whereas a puppy is a lottery.  Although the top of the list of reasons for getting a rescue dog is that they need loving homes, and if more people opted to do so, then the puppy industry would be less supported. There are many unscrupulous breeders who keep puppy farms that operate in appalling conditions, and with sought after cross-breeds (labradoodles, etc. bred because poodles don't molt) fetching huge sums of money, the rewards are high.

So, we are now a family unit of five, and probably only a second car shy of 'living the dream'. Woof.


Under the knife to stop the stabbing.

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Recent developments in a Denver hospital have, despite my best efforts, set my mind a whir with possibilities...

As anyone who has read my ramblings previously would no doubt testify, I am often to be found pouring large buckets of cold water over any 'early breakthrough' stories that offer solutions for spinal cord injury.

This was probably brought most clearly into focus when I wrote a piece for The Guardian a few years back, and inadvertently courted a storm from self-described 'cure-advocates' who even went so far as to suggest that I wasn't interested in a cure for spinal cord injury because it would affect my position as an occasional contributor to the newspaper.

I still tend toward cautiousness whenever I read a story about a medical breakthrough relevant to my injury. This is partly driven by a jaded cynicism when it comes to the media reporting of medical stories, but mostly it's an act of emotional self-preservation. To draw an analogy: Sometimes my daughter will ask me if I ever try to move my legs (just in case my paraplegia has gone, but I've just forgotten to check). I understand the question, and it feels important that I do try and move my legs sometimes, if only to remind my brain what he thought process is, should a cure ever come my way.

However...  When I was first injured, I devoted a great deal of effort and energy into trying, willing my legs to move. I felt that if I could only solve this neurological puzzle, I'd be able to get back to my old life. Admittedly the morphine that went so far in defining my emotional state during the first couple of weeks rather scrambled my thinking, but after reality finally bit I learned that trying to move my legs caused a rising wave of utter panic, and the effort required to overcome that feeling was immense.

So I learned not to try. And so it is with the guarded welcome that I give to any medical breakthrough, first looking at the timeline between concept and viable treatment, then looking at how my individual situation affects the likelihood of me benefiting from said treatment.

But every once in a while, something comes along that gives me hope, despite my best efforts at keeping my unfeeling feet on the ground. And the latest surgical treatment of SCI pain is one of those somethings.

Because for me the one thing above all else that makes having a spinal cord injury really, really shitty is living with near constant pain. all the other stuff- the inability to walk, the effort required to negotiate even small hills, the challenges of bladder management and recurrent uti's, the impossibility of accessing the beach and the surf, the inability to kick a ball with my kids, etc.- is coloured by chronic pain.

Everything takes effort.
Sitting still and reading the paper, for instance: I can't sit still for twenty minutes without some kind of episode of sharp pain. And it's not just because of the appalling standard of current political discourse.

Going to sleep: I have to find the mental energy to face the twenty minutes of increased pain. I have to allow it to flow over me, to build to a peak and then subside before I have any chance of getting to sleep. The irony of this is that the more tired I feel, the less I feel able to face going to bed.

Playing sport: It hurts. I know, it hurts most men nearing 50 who don't devote some time in every day to an exercise regime (and probably hurts those who do, too), especially if they then attempt to chase a ball like an over-excited puppy in traffic.  But the pain the day after basketball training sucks. On the plus side, the base levels of pain for a few days after that definitely improve.

Playing with the kids: At some point in any game, I have to break off and focus on my pain to get past a wave that is impossible to ignore, regardless of how many water pistols/Nerf guns/cushions are aimed at my head.

Right, self-indulgent gripes done with. The point is that the video below does seem to signal a significant clinically viable breakthrough in the treatment of SCI induced chronic pain. I shall be watching the story very closely indeed.

Here's the video:

Celebrating mediocrity.

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My latest piece for the Guardian is about celebrating us losers who keep coming back because we love the sport we play.

Inevitably, it has courted a few 'typical bloody Guardian' comments below the line that have clearly been written after reading only half of the article. he question I'm dying to ask is,
"If you consider the Guardian to be lefty p.c. rubbish, why are you reading it?"
Perhaps one day I'll join the fray, but for now I'm happy to stay above the line.

Ouch. Ouch. Ouch...

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...or 'Bringing Spike back into the room.' For anyone who has not come across this character before, Spike is the name of the pain that I have had to live with ever since my spinal cord injury in 2005.

It's been a while since I've talked about pain on here. I'm not sure why, as I'm happy to discuss it. It does help sometimes, although there can be occasions when it makes people feel awkward because they want to offer help or comfort, and I'd rather not make people feel awkward. About my pain, obviously. When it comes to any other topic relating to spinal cord injury, then I view making people feel awkward as my sworn duty.

As part of my 'Mission To Explain', I have decided to offer this 'Mission to ExPain'. Get it? Get it? Here are a few thoughts about living with chronic pain that may help to shed some light on what this entails.

1) Not all pain is the same.

1a) Some is useful.
If you hit your thumb with a hammer, your body reacts in a series of ways: Your thumb will immediately swell to the size of an apple and pulse alarmingly, while you leap two meters into the air and hover long enough to let out an ear-piercing screech. No, wait... that's only in Tom and Jerry.  Instead, your nervous system will send a flurry of signals towards your brain. As these signals pass along your spinal cord, they will compete with all of the other sensory information traveling along similar pathways (the feeling of your shirt sleeve on your arm, the warmth of the sun on your hand, the recently dropped hammer hitting your toe, etc) and will be vetted for importance. Your body may even take remedial action before your brain receives the signal, by initiating a 'reflex' response in the form of sudden withdrawal of the injured area from the source of the injury.

In this scenario, the pain serves a vital function, in warning us of a threat to our well-being and demanding action. This is a 'good thing' especially if the stimulus has not gone away, e.g. your trousers are on fire, there is a shark hanging off your foot, etc. as it gives us the opportunity to try 'not to die'.

1b) Some isn't useful.
With chronic pain, the signal traveling to the brain may be caused by 'static' due to nerve damage, or might just be the result of the pain 'gates' being unable to differentiate between the warmth of the sun and the trousers on fire scenarios and attaching the same significance to both. It might even be the nervous system trying to find a method of communication where the usual channels are no longer open. For example, one of the hardest aspects of my ongoing battles with urinary tract infections is that the first signs of a flare up always coincide with my hammering foot long, red hot knitting needles into my thighs (this is of course a figure of speech). I know something's wrong without necessarily knowing the exact problem. I also live with pain that is caused by the nerve damage at the site of my spinal cord injury (neuropathic) and pain resulting from problems associated with sitting all day, such as the stiffening of muscles and shortening of tendons and ligaments (musculoskeletal).

Chronic pain is often defined as any pain lasting more than 12 weeks. This doesn't mean every second of every day, but certainly at some point in every waking hour in my case, and it's been more than 11 years.

2) I can feel it in my bones.
Yes, it's the weather, and I know how ludicrous this may sound. I also know that there is scant scientific evidence to explain the phenomenon, but the weather seems to have a bearing. Cold is known to trigger greater instances of spasticity (or involuntary flexing of the muscles) and certainly can increase my base levels of neuropathic pain, but wet weather (or perhaps the low pressure systems more commonly seen on rainy days) also has an impact. I know this, because it's pissing down right now, and I'm on my second Tramadol. Which brings me to point number 3:

3) The drugs don't work.
As The Verve pointed out, 'The drugs don't work'. Well, that's not strictly true, but to describe them as working needs qualification. For a medication to be licensed for management of chronic pain, the threshold for success is lower than for the treatment of other conditions, and even if it is judged effective, it won't work for everyone and even those who have had success are most likely to be describing a reduction in pain rather than its elimination altogether. In mt case I take Tramadol for the worst of the musculoskeletal pain, and a tricyclic anti-depressant and an anti epilepsy drug for the neuropathic pain (both at a relaitvely low dose, but it took me about 3-5 years to get them down to such as there are withdrawal issues).

As a pain management consultant once explained to me, it is possible to make anyone's pain go away. It's just a question of how conscious they will remain. I certainly felt some benefits in terms of pain levels from medications that rendered me close to incapable of cognitive function. Fun for a short while, but not a long-term solution.

4) Chronic pain is more common than you might think.
Around two-thirds of people with spinal cord injury experience chronic pain. This may be associated with the original injury or the result of the extra burden borne by the shoulders.
In the wider population,. the WHO estimates that around 20% of adults live with some kind of chronic pain condition.

5) Sleep is a valuable commodity.
Sleep can also be illusive. For me, when I get to the end of the day and lie down, I experience about twenty minutes of severe pain in my legs. This is partly the change of position and the relaxation, but also the common experience of the switching off of distraction causing whatever was masked to come to the fore. The extra challenge is that the only way to get past this for me is to allow the pain to build to a peak and then subside. That means not wincing, clenching muscles or generally squirming. The problem is that if I'm not tired enough, this can go on for much longer, but if I am too tired, it can be hard to find the mental energy to be able to let go and ease into the pain.

6) Some pain is worth it.
If I train hard at basketball, then I will be in a lot of pain immediately afterwards and probably the next day too. But for the two or three days after that, base levels of pain certainly improve, not to mention the other health benefits of staying active, etc.

6) Pain is not always visible.

For many people living with debilitating pain, this can add to the problems they face. People will often find it hard to get past the 'well they look OK to me' voice in their head when it comes to understanding or offering support to someone with a chronic pain condition. In my case it's fairly obvious because there are occasions when the pain just demands my attention. I know that this can make people feel awkward, and they might say, "Is the pain really bad?" Yes. "Is there anything I can do?" Not really, except maybe don't mention it, and ignore the fact that I am squirming in my chair, frowning darkly, huffing and puffing or punching myself repeatedly in the thighs, trying to understand how my unfeeling legs can also also somehow create the sensation that they are being used as a knife-block.

It's hard for those close to the person with chronic pain.
I know that I am sometimes irritable and short-tempered with those close to me (therefore, if I am rude to you, consider it an honour. Unless I have just met you and you are an arsehole), and this actually makes me feel worse. As well as my having to learn to live with my chronic pain, I resent the fact that Spike also demands that my loved ones have to learn to live with me.


7) Swearing helps.
I mean, fuck it, that's just a universal life lesson, isn't it?


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