Motivated

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So... we've had the old, now for the new:

A few years back, I interviewed David Constantine, one of the founders of the charity Motivation, for an article I was writing for Ingenia.

I'm a huge admirer of the work that David and Motivation have done over the years, and I must confess to being flattered when he suggested that I had something to offer the charity, and that I should get in touch with Motivation Australia after our move from North to South.

I did eventually act on this suggestion and, cut long short, I was invited to use my skills as a trainer for an upcoming training course in Fiji.

It has now upcome, and we shall be leaving these shores on Thursday. After a week's holiday with Penny and the kids, I shall be meeting up with the team from Motivation Australia and travelling down to Suva and on to the campsite where we shall be training a group of people with spinal cord injury so that hey may offer peer-to-peer support on the island. The potential that we may be able to pass a peer-to-peer baton along is hugely exciting.

The trip promises to be something of an adventure, and will offer two very different sides of life in this Pacific republic. First will be the famous welcome and majesty of white sand beaches, snorkeling and tropical island exploration.

After the break comes the serious work, and an opportunity to see what life is like for disabled Fijians, adjusting to life after SCI without the same level of professional and economic support that I try hard not to take for granted. People with SCI in Fiji experience a high incidence of secondary preventable complications, and a significant proportion of the population of Fiji still live in a subsistence economy; a very different life to that which is to be seen in the big resort complexes that bring in vital income from tourism.

The material that we shall be delivering covers virtually everything that I was given during the patient education programme up at the National Spinal Injuries Centre at Stoke Mandeville, over a period of three months.  In Fiji we will have one week.

It is very exciting to have another opportunity to use the skills that The Back Up Trust honed  in me. Time to hit the ground rolling....


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15/1

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A new year. New adventures, and some of the same old same old.

Out with the old first, methinks.

A relaxing swim in the rock pool  five minutes from home the other day. It's easy for me to get in and out, so I'm happy to head down there on my own for a few laps.



So, there I was, sitting on the edge, enjoying the glow and tang of the ocean I have just emerged from. My reverie was punctured by a man who came over to see if I needed any help. I politely declined, at which point he began to tell me about his mate who had broken his neck and was now quadriplegic.

This is not a new occurrence. People will often strike up a conversation about a friend or loved one who has suffered a spinal cord injury, and for the most part, I'm happy to have these conversations. On a few occasions I have been able to share some knowledge or insight, perhaps even learning something new myself.

That said, there are occasions when I would rather be anonymous, lost in my own thoughts or even free of them. Staring blankly into space with the gentle his of waves in the background is a pleasant way to spend a few minutes.

On this occasion, the conversation quickly developed a surreal quality. My 'new friend' laid the groundwork, interrogating me about how I had my accident, and sharing his opinion of his friend's ex-partner who couldn't cope with having a paralysed partner (sadly very common. There's no blame here. It's a very difficult situation to have to deal with, and these conversations only make me admire my wife Penny's ability to drag me through the dark times).

Having shared his views on someone else's relationship, he decided it was time to discuss my sex life.... Yes I do have kids. Yes, one of them was conceived after my accident.
"So you can still get it on in the bedroom, then?"
I wondered if he always moves so seamlessly into this line of questioning, or whether he saves it for people in wheelchairs. Or maybe he keeps it for people not in their wheelchairs, and therefore unable to make a quick escape...

I deflected the question with a polite smile and stared intently at the horizon, wondering if there was any chance that a shark would leap the wall around the rock pool and seize this idiot by the face, dragging him under and preventing him from ruining the vibe at one of my favourite places in the world. No such luck.

Still, he did go on to reveal his cognitive process.
"If I  couldn't do it any more, I couldn't go on. That would be it for me. Game over."
So now we know what he values most in life.
At this point I turned my steady gaze on him, and replied, "You don't know that. Yo have no idea how you will cope until it happens."

He nodded slowly, before excusing himself as he was headed to the pub for lunch.
And relax.

I have had similar conversations in the past, many times. And while people think they can imagine what it's like to become paralysed, the truth is they have no idea. Really.

So if you are able bodied and you see someone with an obvious disability, do come and talk to us, should you wish to. Listen well, because we make offer some insights. We might not.We might just not feel like talking. We might even be rude, because some of us are just arseholes, same as some of you are.

But please, resist the urge to tell us how well or badly you think you would cope if you were in our situation. Especially as you probably have no idea what our situation might be, only what you have assumed.  And let's not get into a 'nuts and bolts' conversation about sex in the first  two minutes. You wouldn't do it at the check-out in a supermarket or on the bus.

And, yes, I know I did cover the topic of sex in my book, Looking Up, but that was on my terms, and just me and the keyboard. I shared what I chose to share. Face to face with a complete stranger? It's none of your business.


The little fellow?

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As often happens, this morning's routine was interrupted by the doorbell. I was no longer in the shower, but attempting to pull various items of clothing onto my half uncooperative body. I'd nailed the socks and the t-shirt, but that was about it.

I grabbed a towel and arranged it on my lap (always a tricky tactic, as it's easy for the towel to get caught up in the wheels), and went to the door. The visitor was the post-office worker who does the parcel round. She's very understanding, and will often leave any parcels on the doorstep if I'm indisposed, so I assumed that she needed a signature. Not so.

 opened the screen to take the parcel from her, when she said,
"There's the little fellow."
Well this is embarrassing, I thought. My towel must have been dislodged. Still, she didn't really need to say anything. She could have been more discrete, perhaps turned on her heels and left me to re-arrange myself.

I looked down to find that my little fellow remained under shelter, and then looked up to find her proffering a large, heart-shaped lollypop. At that moment, I realised that she had actually said, "Where's the little fellow?" Referring to my 3 year old son, whose teeth she is obviously determined to destroy.

Luckily, I had displayed a rare inability to say anything, and I like to think she didn't notice my confusion, or the beetroot red that must surely have taken over my face.  Next time, I shall hide.

One year on.

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A couple of weeks back we celebrated our first anniversary of moving to Australia. The year has passed in the blink of an eye, but I thought this is a good time to reflect on the differences between life in a small NSW coast town and life in east London.

The experience of the last twelve months has reinforced my view of life in London; the city is a source of tremendous energy that amplifies the influence of day to day experiences.

When things are going well, living in London is like grabbing the terminals of a battery. There is also a sense of being at the heart of things, in a city that has a genuinely global presence, where one can meet anyone from anywhere, where one can draw on the influence of every conceivable culture from around the world.

When things are not going well, living in London is like being trampled. Every activity becomes complicated by the presence of a seething mob of chaotic self-interest that cares little for the problems one is faced with.

By contrast, living in 12,000 miles away in a town of 3500 people does not feel like being at the heart of things. Culturally, the town's population could hardly be described as 'eclectic'. It's also impossible to hide, as one meets the same people every day.

But there is certainly a feeling of genuine willingness to help, and of an easy going atmosphere that makes it very easy to relax. Perhaps a little too easy, as the days can drift by without the external compulsion to action.

Away from the social interactions, there can be little doubt that life nestled between the Pacific Ocean and the mountains afford us spectacular views and easy access to some of the most stunning scenery one could ever hope to step into every day.

The kids love it. They swim, they spend much more time outdoors than they ever could in London, and they have made good friends after an inevitably rocky start. It's a big ask to arrive in a small community where most of the kids have been together since they started pre-school.

My experiences thus far have been mixed. In work terms I feel a touch isolated, and I haven't yet broken into the Australian market, despite positive initial contact with many commissioning editors. That said, I haven't been trying so very hard, as I have been distracted by other matters (spending three and a half weeks in hospital didn't help), and my focus has been divided as I try and kindle an urge to paint into a roaring drive that sends me into the studio (garage) in a blur of brushes and pigment.

And this is where the difference between London life and here comes into sharp focus. Life here is easy. We have space and time. It is up to me to find the discipline to get out of a holiday mindset and knuckle down. Anyone got a spare protestant work ethic?

Unusually for this here blog what I done here, I have not as yet mentioned the spinal aspect of my life.

There is little doubt that many aspects of life in a wheelchair that are easier here. We have enough space to be able to easily access different chairs and other bits of kit. Many more houses are accessible, as single story places are much more the norm. The average temperatures make bulky clothing less of an issue when getting around, and there is less unpleasant stuff to wheel through on a trip to the shops.

However, it is very hilly here (see previous  comment about being by the coast and the mountains), and there is a dependence on the car that makes pavements sporadic and often inaccessible. Drop kerbs are located next to disabled spaces, but they are positioned with the assumption that the wheelchair user is the passenger, so for me to park in such a way as to be able to get the door open means blocking the easy access dealing with the inevitably enormous kerb.

There are other aspects of life here that present more of a challenge than the landscape, but I will save that for another day.

In summary, we are still here. We have had no epiphany, no crystalising of a decision as to where our long term future lies. Maybe that's not the way these things work for most people.
 
If we have learned anything from the last 9 years, it's that change happens and we don't always have much control over it. But we have also learned a bit about our resilience, and that makes facing the future a little easier.

So for now I will continue to leave my tracks in the sand, and deal with rusty bearings for a little longer...
 
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The deeper that sorrow...

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I was shocked and saddened to learn of the death of Andrew Farrow. It has taken me some time to decide what to write on here, if anything at all, for his family will be suffering greatly, and I would hate for them to feel that I am intruding upon their grief. Writing this feels somehow presumptuous, especially as I have never met the rest of the Farrow family.

 

Andrew and I met back in 2008, when I found his blog and discovered that he had recently read my book. There were some striking parallels in our stories; we were both injured falling from a tree, we had lived in the same places, we even discovered that our families shared mutual friends.

 

Over the past six years, we also shared the trials and tribulations of living with paraplegia, of parenting, and the challenges of setting off along a different career path. Looking back through previous blog entries, I found seven references to Andrew; occasions when his experiences so closely matched my own and were so succinctly reported that I wished his words had been mine too.

 

I would like to think that we provided each other with succour during some of the darkest days, times when physical or emotional pain was such that only the intimacy of shared experience could offer comfort. I certainly gained hugely from Andrew's supportive words, and I would hope that I was able to offer him some support when we shared those 'glass-half-empty' moments.

 

We laughed too.  Big, raucous laughs at the absurdity of life. Giggles over small embarrassments and the awkwardness we had inspired in members of the public determined to help.

 

I met Andrew face to face just once. We had lunch and a chat beside the Thames when he was up in London.  Although our families never met, this was not for want of trying. Our plans always seemed to fall through; complicated by the unpredictable circumstances of complex lives, and then further confounded when we moved halfway around the planet.

 

Still, I felt that we would always keep in touch, and that our paths would certainly cross again at some point in the future. Andrew's passion for sailing had also taken him down a new and exciting road, and I greatly enjoyed learning of his exploits under sail.  Andrew was aiming high, as usual, with Rio 2016 firmly in his sights. As with everything else he did, he offered insight that resonated way beyond the immediate passion.

 

Sometimes this insight was painful to read, especially as I shared many of the same battles. Make no mistake, living with a spinal cord injury is hard, especially if one has a chronic pain condition that has the potential, on a bad day, to tarnish every waking moment. But often, Andrew was able to offer a quote that drew some inspiration from the dark times, such as the words of Khalil Gibran, for example: "The deeper that sorrow carves into your being, the more joy you can contain."

 

So Farewell, Andrew. Thank you for your wit, your insight and your emotional support. I feel honoured to have had you as a friend. May the wind always be at your back and the sun upon your face.


Enabled

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I have for some time now written a regular column for Enable Magazine in the UK, and I have decided that some of them might make for an interesting read here on my blog.  I will only share those which are still relevant so, fear not, there will not be any entries about what to wear at the London Paralympics, etc.

Here's a link to my latest, on the Enable website: Enable Magazine

Too much pressure...

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This post has been a long time coming. As to why? Well, perhaps the fact that any names (including that of the hospital) are absent may offer a clue.

I am no stranger to hospitals. Since my spinal cord injury in 2005, I have clocked up weeks of ward time. After the initial three months rehab, there was the removal of my spinal metalwork, followed by more than five years on the outside.

This run came to an end when I developed septicaemia in 2012, which resulted in a five week stint, interrupted when I was discharged and readmitted twice (I should point out that I was far from happy with my care during this time, but this was due to the delay in making me better rather than them making things worse). The treatment consisted of lots and lots of antibiotics, until a 'peri-urethral collection' was drained by a radiologist with a syringe, an ultrasound for aim and a talent for darts. With my feet behind my head, I watched in awe as she hit the target first time. Abscess aspirated, the infection went, and I got home just in time to carry the Paralympic torch in Hackney.

All fine and dandy until May of this year. What appeared at first to be a UTI that I couldn't shift became more complicated as blood tests revealed my liver wasn't happy, and the febrile episodes became more frequent. Rather than waiting for my temperature to hit 41c (as it had in 2012. Rigors are best avoided, people), I checked into my local hospital.

Just to clarify, this is not a small country hospital with starched nurses and doctors in aeroplanes, but a 500 bed urban hospital.

On admission, I was put on I.V. antibiotics, and through a combination of CT and MRI  scans a bacterial collection was identified in the same area as 2012 (my abscess, not the torch relay. If the collection had been found in Hackney, I would have been in better shape).

The urologist decided that the best course would be to drain the area surgically, thus making sure that the area was fully clear, in case some residue had been left behind in 2012.

When I came out of theatre, I was informed that I had a 'corrugated  drain' in place to ensure the area is fully drained, after which the area would be dressed, and allowed to close over time, so that it closes from the inside out, ensuring no cavity is left behind.

The drain itself looked like a ribbon cable from an early computer, and was a couple of centimetres wide. My scrotum, on the other hand, was the size of a space hopper, and almost the same colour.



In order to speed up the reduction of the swelling, I was trussed up like a turkey in a double layer of some fetching synthetic stretchy underwear called 'Mollie Pants' to provide extra lift. For a week, I had my dressings changed twice a day, and everything seemed to be progressing well. The nurses did mention that they would need to keep an eye on the drain itself, to ensure it wasn't pressing into my skin.

At the end of the week, the registrar finished his ward round visit with a parting shot. After examining me, he mumbled that there was a small amount of ulceration that they would need to keep and eye on. Despite this being 7.15 am, alarm bells began to sound in my head.

To become a fully qualified paraplegic, I had to undergo a rigorous training programme that covered all the elements that would enable me to be considered self-caring. As a result of this training, even the mere mention of the words ulcer or pressure are enough to make me scurry for a mirror and embark on a spontaneous yoga session to allow me to, if not disappear up, at least scrutinise my own arse.

Having been in dressings all week, I had not had a previous opportunity to inspect the drain site or the area surrounding it. I pulled a mirror from my wash bag, and angled it between my legs to discover an area of very dark purple skin, with two angry red sores on one edge.

In having the drain pushed up against my skin, the combination of pressure and the exudate (the fluid draining from the wound site which can burn surrounding skin. See, I learned something) from the drain had caused a pressure sore 2cm x 3cm.

I was seriously annoyed. As far as I am concerned, this was an avoidable complication, and for it to happen to someone like me (I like to think I can fight my corner pretty well, and I've made it my business to learn as much as I can about SCI) was even more worrying. What if I had been incapable of self examination? What if English wasn't my first language?

The wound management CNC (a nurse consultant) was called, and she recommended an appropriate dressing, and a careful watch and wait strategy to find out just how deep the tissue damage was. 

A few days passed, and by the time she returned, the area had become considerably larger. During her absence, the colo-rectal doctor had happened to examine me (they got in on the act to make sure the original infection hadn't come from their end, as it were). On looking at the pressure area, he suggested getting plastics to have a look at it.

I mentioned this to the Wound CNC, and plastics duly paid me a visit. The registrar described the area as being necrotic and the kind of thing they only usually see with a bad TB infection or someone who is immuno-compromised. He put me on the surgical list for the following day.

The surgery involved the removal of the affected area (thankfully the scrotum has plenty of skin to go around), and after three days, I was packing my bags to go home when the plastics team paid me a visit with some bad news.

The tissue they had removed had been sent for analysis, which revealed an MRSA infection. There was enough evidence from previous tests to indicate that I was not carrying MRSA prior to the sore developing, which means I had a 'hospital acquired infection'. Suffice to say, I have made a formal complaint; I await the official response with interest.

Fortunately, I was able to leave with two lots or oral antibiotics, so my return home wasn't delayed any further. Yesterday I finished the course. Now I have to wait and see whether the infection is cleared or whether it will reassert itself. A nervous time, especially when my confidence in the standard of care I can expect to receive has been undermined.

Would my experience had been different had I had private medical insurance? It's hard to know, but from what I saw, it would only have provided me with free TV, and possibly a side room (although I don't know if such rooms are available for private patients, as I am not one). Perhaps private cover would have made it easier for me to ask for a second opinion, but seeing as there isn't another urology team for many miles around, I'm not sure how practical it would be for me to be passed on to another hospital.

My experience of the NHS has been far from perfect, but the principal under which the organisation operates does make it feel like one big institution, where moving from one discipline to another is relatively easy (depending on how stubborn the consultant is). The UK population still cares deeply about the concept of the NHS, even as the Government attempts to dismantle it before their very eyes.

During my stay in an Australian hospital, I overheard another patient describing how one of their relatives had meningitis and had been advised to seek treatment in a hospital elsewhere in the country, but couldn't afford it. Their inability to pay would make a difference to their long term prognosis.

At the coffee counter in the hospital, there is a tin for people to make donations. The money was to help a 2 year old child who was seriously injured in a fatal car accident. The money is to go towards the cost of treatment, a wheelchair and rehabilitation therapies.
In one of the wealthiest countries on the planet, why is it necessary to rattle a tin in order for this child to get the best care and rehabilitation?


In Australia, the Federal Government has just cut $50 billion over eight years from the health budget given to all of the states to provide healthcare services. The idea is to force each state to have to raise the money to cover the funding gap by increasing GST (Australia's equivalent of VAT) or by taking funding from other state services.

To hold the provision of healthcare for all Australians to ransom like this  is one of the most appalling pieces of political cynicism I have ever seen. It does not bode well for the future standard of care for those who cannot afford to pay for their treatment.

It could be you...

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