Looking Up

it's been a rough week, cinematically speaking.

First we watched the engrossing and unsettling 'Beasts Of The Southern Wild', and then last night I found myself in front of 'The Road'. The latter being one of the most disturbing movies I have seen in quite some time.

For those of you who haven't seem them, both films share a similar theme; a father struggling to protect their child from forces beyond their control. While bleak, the message is the same, that while the father dies, he has managed to bring his child to enough of an understanding that they are equipped to begin life without him.

Heavy stuff, and while 'Beasts' paints a picture with shocking relevance to the economic disparities that exist in the US, one hopes that the scenario in The Road is metaphorical rather than portentous. But for me, both films also carried a very personal subtext. One that had my stomach in knots from the first frame to the last.

I'm pretty good with my hands. I like problem solving, I'm OK with tools, and I can be creative.
All of this should allow me to indulge in that very male fantasy of convincing myself that I could protect and provide for my family in extremis. I've built shelters. I've killed fish. I've even skinned a rabbit. I am MAN. Hear Me Roar. etc.

But I cannot indulge in the unconditional fantasy. It is all too obvious that I would be screwed in a 'survival situation'. If I made it through the first few months without succumbing to some kind of infection (which I struggle to do in this most first world of situations without medication by the lorry load), then I would most likely be first into the pot. Hell, I could even join in and eat my own legs for starters.

In living with paraplegia, I have learned to *unfortunate analogy alert* tread a fine line. I am independent. I contribute economically and socially, I am a fully engaged and involved father. Penny even went to Portugal last month, leaving me alone with TWO KIDS for a whole weekend (Please send medals to the usual address).

But I am also all too aware that it doesn't take much for me to fall off. Persistent UTI's are annoying, but can also mean spending a few days in bed. And let's not dwell on last summer's extended hospital stay with septicaemia, or the exhausting 'bad day' battles with pain levels above the normal 'general unpleasantries'. I take five or six different medications every day, I need five or six intermittent catheters a day, and then there's the wheelchair and the pressure relieving cushion. And all of this is just the 'treading water' stuff. I'm reasonably fit and active, but I still have other issues that need attention and medical support.

But the biggest battle in my daily life is the mental one. It's not what I think about, but rather what I don't. A good illustration: I don't like accepting help from people. This is partly because I'm bloody minded, and I need to know I can manage in case there isn't someone on hand to help me. But there is another reason. In accepting help, I am being reminded that I am disabled. This is why I don't like 'ring for assistance' signs instead of ramps or whatever the assistance is needed for. I Don't want assistance. I want to be able to think about something other than my limitations.

It turns out that my film-viewing tastes now reflect this desire, too.  Perhaps I'll put off watching Into The Wild for now. I might also steer clear of re-watching Touching The Void....

I recently wrote an article for The Guardian, in which I interviewed two psychologists with experience of spinal cord injury.

The article was intended to highlight the impact that simplistic reporting of complex medical research can have on people learning to live with SCI. The headline,
"Spinal injury cures: balancing hope and expectation," sets out the need to keep a sense of perspective.

Now, while I will often read the 'below the line' comments on articles I have written, I rarely get involved in the discussion. This is partly out of a sense of professional pride; if I have written well, there should be no need for me to elaborate or clarify. But I have also found that such discussions can quickly move 'off-piste' and end up on topics that are barely relevant to the original piece.

However, in the case of the Guardian piece, I did weigh in when I was accused of, "[reinforcing] the myth that living with paralysis is manageable."
In truth,  wasn't really sure what I was being accused of. Living with spinal cord injury is not a myth, nor is it unmanageable. There are around 40,000 of us in the UK doing just that. Managing to live can take many forms. While we will all live with some level of emotional pain, and depression is not uncommon, some people with SCI actually enjoy their lives. This does not mean that they would not opt for a cure if one were available.

Next, Professor Paul Kennedy was accused of "tak[ing] hope away from people."
A peculiar accusation when Kennedy is quoted as saying,
"The hope is that, if we can do something about the injury, of course we should. But the expectation is that we help people to get on with their lives as they are now."
Hardly the words of a man devoting his life to dancing on the fragile shards of broken dreams.

It soon became clear that I was now the subject of attention from a couple of people with a specific agenda, one that they describe as 'cure advocacy'. The obvious corollary of this title is that I am somehow 'anti-cure' for suggesting that people need the tools and support to get on with their lives as they are now.

As the discussion continued, I was accused of being anti-cure because I somehow liked my life as it is now, complete with all the pain and complications of SCI. One of the contributors comments became very personal and quite bitter.

I pride myself for being quite thick-skinned when it comes to such discussions, and I wasn't particularly upset, more surprised and puzzled that these people would turn on me in such a vitriolic way. The implication throughout the discussion was that I was somehow responsible for preventing research into an effective cure.

The truth is, those of us living with SCI make up approximately 0.065% of the population, and we are competing for a limited pot of resources when it comes to research. Many areas of medicine have wider benefits, such as preventing pressure sores, which cost the NHS around £3 billion per year to treat.

There is also a danger that trumpeting every small advance in finding a cure for SCI can give the wider population the misconception that the job is all but done, and those who do donate to research charities may shift their funds elsewhere.

Since the article, I have gratefully received a number of very supportive messages, including one from a molecular biologist who has been injured for 35 years. The view from the front line is as follows,
"There will be no magic for a few years yet. Will we get a bit better? Possibly, but sitting in a clinic waiting room, or becoming a lifer in physical therapy is a waste."

There is no valid rehab versus cure debate. Living with a spinal cord injury is really tough at times. Anyone who has read my book will know the difficult realities of day to day life with SCI and the pain and anguish of trying to come to terms with such a dramatic change.

Yes,we all desperately want a cure. It's just that during the 'inbetween days', some of us want to get on with making the most of what we have left.

Here's an article I wrote for today's Guardian about managing hope and expectation of a cure for spinal cord injury.

It's fool's day again. My day. The anniversary of my spinal cord injury eight years ago. This inevitably causes a degree of introspection to permeate the beginning of April and while it gets further away each time, the thought processes haven't changed.

I can say that the pain is less than it was on those first few anniversaries (by this I mean the existential pain rather than the neuropathic). I spent much of my morning routine waxing lyrical about the joy of stepping into a pair of jeans instead of rolling around on the bed struggling with an activity that can best be likened to trying to get two unconscious snakes into a pair of undersized legwarmers. It is still a mystery to me just how to predict the behavior of my extremely uncompliant legs; the knees bend and the hips rotate, but that does not account for the way my feet tend to come up and shoot out sideways when I try and direct them into an item of clothing. There is a certain amount of demoralisation that comes with feeling exhausted from the acts of showering and dressing.

Part of me revels in such frustrations, for it reminds me that I'm still in here somewhere. I can remember activities that I haven't been able to do for eight years. I can tap into half a life of memories that connect me.

But there is another perspective on my daily annoyances that can be of comfort: Much of my current frustrations were not part of my life a few years back because they come from tackling tasks and activities that I would never have imagined could be a part of my everyday life. As I have gradually reinstated some activities like work, playing sport or shopping, it is easy to forget that for some years after my accident, getting up, showered and dressed left me with a feeling of achievement.

It should be a point of pride to observe that I now get this buzz from wrangling the kids, writing 3000 words on a subject that is new to me or training a new group of wheelchair skills trainers.

And as Penny pointed out this morning, today is a better day than it would have been had I not survived the fall.

So, first up: Happy New Year. Yes, it's been an age, and I have a number of excuses lined up, but none of them are particularly strong, so let's just move on, shall we?

I am pretty exhausted, mind, but that's the result of a weekend spent training up another new tranche of wheelchair skills instructors for the very lovely people at Back Up.

It's very satisfying to be able to contribute to the programme in this way, and nice to know that I can still make a decent fist of teaching. I used to train people in a professional capacity in a previous life. By this I mean before my spinal cord injury, not when I was stonemason to Hatshepsut in 1450 b.c. Because I wasn't).

But what I have found particularly interesting about the weekend just gone, is how passing on these skills makes me reflect on my feelings when I deliver a session. Many of the wheelchair skills sessions that I deliver tend to involve working with one or two individuals in general hospitals or other units. The participants are part of a widening group of individuals who have very little contact with any of the 13 specialist spinal centres in the UK.

There are a number of reasons why this might happen; it could be a lack of available beds at the time of injury; they may have complex other medical issues; it could even be the result of an attempt by their health trust to keep the funding in-house.

But whatever the reason, these people miss out on many essential components of rehabilitation, including knowledge and resources that can have a big effect on their ability to reach their full potential post-injury. Part of what we do is to offer a glimpse of what life might be like; the everyday, driving a car, going on holiday with the family, flying long-haul; just mentioning these things in conversation can have a real impact.

I used to find these encounters emotionally exhausting. Discussing the predicament other find themselves in can quickly shift the glass-half-full perspective that many of us rely on to get through the day. But with experience, I have found that I can sense the post session dip and keep myself busy and distracted. And for the last two years, I have enjoyed the process of training a new crop of wheelchair skills instructors. As well as a sense of satisfaction that comes with teaching anyone anything, the process of trainer training gives me a reminder of just how valuable the wheelchair skills programme is. It's also good to be reminded that I am not alone, and getting together with other instructors of a similar experience is a great way of recharging the emotional batteries.

Occasionally one gets the opportunity to write on a subject that feels really personal. My article on the wonderful Motivation for Ingenia Magazine was one of those opportunities. Enjoy.

I was in the playground with Rosalie last week, when a boy of about five approached me, staring intently at my wheelchair. Braced for the usual playground encounter, I smiled and waited for the inevitable question.

"Why do you need that?"
Ever, the wit, I replied,
"Why do I need what? My coat?"
My interrogator rolled his eyes.
"No, those. The wheels."
"Ah, I see. Well I need them  to get around because my legs don't work."
I began the mental countdown for the usual follow up, "Why don't your legs work?"

Except it didn't come. Instead, I watched a mental penny fall into place as the boy nodded sagely.
"Oh, I see now." He said. "Because I saw a dog the other day, with wheels instead of back legs, so I bet his legs didn't work either."

And with that, he scurried off to rummage in the sand pit.
"Ah well," I sighed to myself.
"Glad to be of service."

OK, I know this is a departure from my usual musings, but bear with me. For those not versed in the latin names for our native trees, Fraxinus excelsior is the native Ash tree that populates these shores, and which is doomed to all but disappear from our woodlands.

The spread of a fungus called Chalara fraxinea, coupled with a rather complacent attitude within the forestry industry means that we are likely to lose 90% of our Ash trees in the UK. This is a real tragedy with serious consequences for numerous other plant and animal species whose habitat is largely dependent on this vigorous populator of our woodlands.

The Ash tree has played a significant role in my life too. Not in a 'Yggdrasil' Viking Tree of Life sense. Let's be clear, I don't worship trees. But I do love 'em, and I appreciate just how valuable they are to every other organism on the planet.

When I was a kid, I spent my summers in the mountains of Austria (see recent post), doing what every boy dreamed of, namely wielding a knife and making stuff out of branches and yomping around the woods pretending to be soldiers/adventurers/etc.

Around the garden of our family cottage, the boundary hedge contained an abundant supply of Ash, the distinctive silver bark and black shoot-tips easy to spot among the other trees and shrubs. Being so fast growing, it was ideal for making bows and arrows, walking sticks or frames for shelters. I can still smell the sap released when the bark is shaved off, and remember the 'crack' that echoed when a bow was over stretched.

Later, when I was training to be a tree surgeon, we climbed lots of ash trees. They were a good contrast to the more slow growing species as the branches were spread further apart, making rope throwing and climbing much more challenging.

Then on the 1st April 2005, it was from an Ash tree that I fell, breaking my spine and suffering permanent paraplegia. I have never attached a great significance to the symbolic elements of my accident. Indeed, I still occasionally wear the shoes I was wearing when I fell. Somewhere in storage I have my climbing belt cut in two by the Paramedics who treated me at the time.

And while this may seem obvious, I bear the tree no ill-will. It is not as obvious as it sounds; lots of people who suffer a spinal cord injury struggle with reminders of whatever led to their accident. Not me, however. The most difficult aspect of dealing with the details is that I miss climbing. Getting up among the branches, feeling the tree flex in even the slightest breeze, feeling the bark under my hands, flicking ropes over branches, moving around the canopy, all this felt right. I felt like I was able to recapture the childhood pleasure of climbing trees while contributing to their care.

I am deeply saddened that we face the virtual extinction of yet another native species. And with the projected temperature changes predicted through climate change, we are likely to lose others in the near future, too. Fagus sylvatica, the Beech would be greatly affected by a temperature change, as would Quercus robor, the iconic English Oak tree.  Especially as even a modest warming in mean temperatures could lead to a blossoming of diseases like the suitably dramatic sounding sudden oak death.

I know that in the grand scheme of things, plant and animal species are locking in a constant waxing and waning over time, but when this process has been accelerated by something as crass as the profit motive it is really depressing. Remember, seeds from British Ash trees were exported to continental nurseries, and returned as contaminated saplings a few years later. Plant species don;t normally cover such distances in such a short time frame. This means that any chance of a resistance to a particular pest or disease is seriously compromised. Even a wind borne spore would be unlikely to arrive in so many places simultaneously.

For my kids, the Ash is likely to only exist in the collective memory, as the Elm does for my generation. A sad thought indeed.

After more than seven years post-injury, life in a wheelchair has become almost 'normal'. I say almost, as there are still occasions when my brain tries to engage my legs in activity, usually when I am caught in the moment.

When Arsenal score, for example. Every fibre of my body wants me to leap in the air. Luckily, this hasn't happened. I say luckily for two reasons.
Firstly, I suspect the officials of the club would take a dim view of a wheelchair user in the disabled supporters section miraculously leaping to their feet.
Secondly, I sit beneath a low concrete section under the upper tier, so were I to suddenly  extend myself to my six foot threeness, my head would meet concrete at around five foot nine, and the stewards would be reassured that whatever disability had suddenly been cured, would almost certainly be replaced with a brain injury.

For the most part, life and the places I live it are familiar from where I'm sitting. However, this means that when I do revisit a pre-injury experience, I am less well prepared for the feelings invoked than I was when it was a regular occurrence.

Finally, after the disappointments of a summer spent in hospital with septicaemia and cancelled holiday plans, we managed to get away for a week of mountain air. (The hospital stay will be the subject of a posting soon, I promise, you lucky people.)

Having spent all of my childhood summers in the mountains of Austria (my mother is Austrian), it is a landscape that makes my heart soar, and one that I feel very much at home in. I am keen to pass this passion on to my children, so I was excited about spending a week at Flackl's in Reichenau.

I was braced for a bittersweet experience, especially as I am experienced enough in the ways of the wheel to know that a mountain must come close to a sandy beach in terms of a darn-fool holiday venue for a wheelchair user. It was still pretty tough. Even modest woodland walks involved very steep slopes, and while we were able to get to the top of the Rax, the chunky limestone paths were extremely challenging. Having spent so many hours walking up and down these mountains, I felt a pang of disappointment at not being able to follow the tracks along the ridge line. The simple pleasure of putting one foot in front of the other, of being an all-terrain vehicle, of immersing oneself in the landscape. Instead I felt static, immobile, compromised. 

Still, the choice is simple; either I accept the revised version of previous pursuits or I drop them all together, and I certainly found enough pleasure in being there. The air is fresh, the water delicious, and the scenery beautiful. That said, I am also sure that there are other solutions to the challenges of alpine scenery that I have not yet fully explored, without going as far as to get one of these, tempting as it is...

 Another problem that comes with visiting the mountains is the diet. Living on meat, beer, cakes, cream and chocolate is fine when you're walking up rock faces for eight hours a day, but when life takes a more sedentary turn, ten thousand calories a day can be pretty exhausting in itself. Luckily I shed about 5 kgs in hospital over the summer, so there was capacity available, but I hanker after the days when my work was mostly physical and I could eat whatever I wanted anytime.

Still, seeing as we were in a family room, alcohol consumption was limited by early nights. It is a challenge of parenthood that is hard to get around. In your mind's eye, holidays involve evenings enjoying a glass of wine in the bar, conversation pouring forth. In practice, one is more likely to be in a darkened room, drinking wine out of bathroom cups and sucking on a bag of crisps for fear of making too much noise and waking the snoring children.

Perhaps this is the point. Our lives our constantly changing. Even if we are able to revisit previous passions, they are often different, affected by experience and changed perspectives and circumstances. If one accepts this state of flux, then the pleasures of past experiences can still be enjoyed, seen from a different vantage point.

In the past I have only ever visited Reichenau at the height of summer. On this trip, the autumn colours revealed that forests I had always thought to contain only fir trees are half deciduous.
 

More controversy at the velodrome, and this time the Paralympics eclipses the Olympics.

    Disputes over front and back wheel crossovers can be assessed on video playback, while riders 'admitting' to throwing themselves off after a bad start can have their claim retracted by the rest of the team when the heat begins to build. Pendleton loses, HIndes wins. However, Paralympic cycling has today seen a much more hotly contested controversy.

C4 rider Jody Cundy was last to go in the 3km time-trial. As he left the gate, something was clearly amiss. He immediately raised his hand and everyone assumed that a restart would surely follow. Only this time, the UCI commissars concluded that the poor start was due to rider error and not a technical problem. Cundy was immediately disqualified, provoking angry scenes in the centre of the track as the distraught rider threw water bottles and screamed in anger at the officials.

 With road cycling just emerging from the most difficult period in the sport's history, and the cloud over Lance Armstrong threatening to re-open tender wounds, track cycling has always been viewed as a purer sport, less tainted by controversy.

 While the sport continues to attract new audiences and with subsequent Olympics increasing the amount of world class tracks available for international competition, new viewers will continue to be baffled by some of the decisions reached by the commissars.

However, some may see the commissar's absolute authority and the rapidity with which decisions are made as a strength rather than a weakness in track cycling. The programme continues to roll on and we are spared lengthy legal disputes and protests.

 This is a big sell to make to a new public, and until spectators have been bedded into this aspect of the sport, we are likely to see departing Olympic and Paralympic visitors emerging confused and angry from their first live Velodrome experience.

 Cycling is not alone. All sports have to balance the desire of the circus crowd for a spectacle, and the integrity of the rules and a need for officials to be seen to be impartial. However, could it be that disqualifying a competitor from the host nation is the quickest way to demonstrate impartiality?