Ten.

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April 1. A memorable date for most, with it's association with pranks, high-jinx, tomfoolery.

April 1. A memorable date in this household for a different reason.
On the 1st April 2005, I fell from a tree, dropping six meters and landing on a garage roof. I suffered one injury: a displaced a single vertebra in my spine, all but severing my spinal cord in the process.

Ten years on, much has changed. My paralysis has not changed at all in the intervening years, but my life continued, and while my spinal cord injury will always be one of the most significant events in that life, it did not mark the end. Every day I face the consequences of my injury; the constant pain, the complications of bladder infections, the difficulties in accessing the beach or the mountains, the inability to lift my children onto my shoulders, the list is long.

So how to mark the anniversary? This is a quandary that all of us who have experienced a profound injury have to deal with. It's hardly a time for celebration, for while I have heard a number of people describe their injury as one of the best things that ever happened to them (usually because of what they have achieved since), this has always struck me as a strange statement.  Do they really have such a low opinion of their 'pre-injured' selves? That without a life-threatening injury and the prospect of life with a permanent disability, they would have amounted to nothing?

What I have learned is that I am capable of adjusting and adapting, and that some things that I used to consider important are not. I have also learned much about the challenges and obstacles that many people deal with on a daily basis, many of which come in the form of negative social attitudes or a mere lack of consideration.

I have also learned that my sense of self has not changed. And with this, my expectations have also remained. These expectations also form the basis of my every encounter with the social and built environments.

If your shop/cafe/toilet block is not accessible to me, why not? I hope you have a good excuse, because I have a forensic approach to what constitutes a 'reasonable effort' when it comes to universal access.

If you wish to talk over me, make assumptions about me or treat me as if my life is a matter of public record, be prepared to cop a mouthfull. It will happen. Trust me.
(This last one puts me on somewhat dicey ground, having written an 'unflinching' account of my experiences. The word was selected by my publisher, btw.)

I now have two children. My oldest is soon to be ten, so both my children have only known me with a spinal cord injury. They have taught me much.

Partly, this has come through my need to explain to them, which requires me to crystalise my thoughts on what I can and can't do, what we should be able to share, and on the role of a father.

They have also taught me through their ability to accept and move on. They know that I am different to other fathers, but their expectations generally gauge perfectly what I can and can't do. Hide and seek? Sure. Pillow fights? You betcha. Kicking a football? Less so. 

And through all of this, I have my beloved wife Penny. Her resilience, sense of humour, patience, positivity and loving support have shaped the last ten years in more ways than I can begin to describe.

So, how mark this anniversary? We decided to go for a bike ride.

Kangaroo Valley provided the scenery, my hand-cycle provided me with the transport (albeit bloody hard work. It's not the most ergonomic rig, to say the least), and we went on a leisurely 10k ride through beautiful scenery.

kv.jpgPenny then rode back to the car, sparing me the larger hills, and I lay on my back in the grass, staring up at the clouds and the trees and reflecting on the similarities and the differences between today and when I stared up at the clouds and trees after falling from one of them.

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In the last ten years, much has changed. Not least the place I currently call home. In the move to Australia, I drew much of my confidence about such a big change from our ability to adapt to the profound changes we faced when I fell out of that tree.

It also taught me that things can come at you from out of the blue; profound, life-changing things; things that you couldn't begin to imagine how you would cope. But we do. Most of us do. And in so doing, we learn the things that really matter.

Fiji: Passing on the baton.

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or 'Fiji, part the second'.

Holiday over, it was time to get to work. The road trip from Nadi to Suva took around three and a half hours, and provided great window-gazing opportunities to see the sugar cane fields and to get a feel for the volcanic landscape. We also passed through some traditional villages, one of which was heavily policed as the President was making a visit. Most of the police activity seemed to be focused on the roadside stalls selling fresh cooked sweetcorn. In the car we speculated that foodstuffs were being impounded bodily as a security precaution.

So to Nadi. The main purpose of my Fiji trip was to deliver a peer to peer training programme for Fijians with spinal cord injury on behalf of Motivation Australia.

First, a little luxury.  My co-trainer Lisa Chaffey and I were booked into the Grand Pacific Hotel where we were to hunker down and plan the job. The hotel provided us with rooms at a discounted rate, and we provided feedback on wheelchair access in return. I can report that the room was generously proportioned and easy to get around The bathroom was also spacious and included a wide, folding shower seat and was laid out in a way that made transfers easy.

However, I must report that the indoor zen garden was not very wheelchair friendly, as it consisted largely of soft sand. In future, they may wish to tarmac it.

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Zen and the art of wheelchair maintenance: Stay out of soft sand.

Lisa and I spent a few days with Lauren from Motivation Australia, working through the training material we would be using, and working out how best to approach the week. I was immediately struck by the contrast to peer training in the UK, where one could safely assume that participants had accessed a broadly similar rehabilitation programme in one of the thirteen spinal units around the British Isles.

Instead we realised early on that flexibility was going to be key, and that we couldn't assume that those we were working with had been exposed to even the most rudimentary knowledge about spinal cord injury. Another telling experience came whenever we travelled to downtown Suva to grab a bite or do some shopping, perhaps best summed up when Lisa asked,
"Why is that man staring at me?"
She immediately remembered that she wasn't in Melbourne, and we realised that our presence as wheelchair users on the streets of Suva was causing something of a stir. The general reaction of unashamed staring drew from me my usual response, which is to stare unashamedly back. This was inevitably met with a smile and shout of "Bula!", accompanied with a thumbs up or a proffered handshake.

Preparation over, it was time to leave the colonial luxury of the Grand Pacific (where the staff had, for some reason, decided that Lisa and I were husband and wife), and we made our way to the training venue, a theological college on the outskirts of town that was perfect for our needs.

On Sunday evening we met the participants. In the first hour I learned that one of our number was unable to transfer from wheelchair to bed without an overhead handle. In ten minutes, I taught him how to make this transfer without assistance or a monkey bar. This was the first time he had done so. In twelve years.

This example sums up the nature of our task. I have always felt passionate about my role as a peer to peer trainer, as I was fortunate enough to be given such guidance when I was going through rehab and it had a profound effect on me (it's all in 'the book', you know).

In Fiji, I was expecting a lack of resources; Fiji is not a wealthy country. But what struck me most was the lack of knowledge. During the week we spent working with ten disabled Fijians, their family members and carers, and staff from Spinal Injury Association of Fiji, we covered topics that I was briefed on as part of the patient education programme at Stoke Mandeville, including bladder and bowel management, and avoiding pressure sores.

To put this knowledge in context, these issues don't just affect quality of life, they can have a profound effect on life-expectancy.  When Professor Ludwig Guttmann founded the first spinal unit in 1944, most people with spinal cord injury died within 2 years from infections caused by pressure sores or renal failure caused by poor bladder management.


The week in Fiji was exhilarating and exhausting. We developed a great atmosphere, with everyone throwing themselves into the training with enthusiasm. As well as the sessions on health issues, we ran extensive wheelchair skills training and some sport sessions. Again, we had some significant wins, including finding a way for one of the participants to self-propel in her wheelchair for the first time since she was given the chair seven years ago.

The aim is for this group of participants to stay in touch and meet regularly to come up with some peer led activities that they can organise for themselves with a view to attracting other people with disabilities to get involved.

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photo courtesy of Motvation Australia

The farewells at the end of our week were emotional, and this wasn't purely down to the kava... There was a tangible sense that our sessions had helped to widen the horizons and expectations for everyone who took part. This included the trainers as well, because we learned along the way too; that is the nature of peer to peer training.

We intend to stay in touch with our participants and over ongoing encouragement so that the course has a significant legacy. And in future? Who knows... maybe other Pacific islands could make use of our services...

On a final note, I would like to thank Lofric for providing me with intermittent catheters during the trip. It was great to have the confidence that comes with single use catheters while travelling.



Fiji: part the first

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SO, Fiji then. First came the break:
We flew out to Fiji together for a family holiday, staying at a small resort with accessible accommodation called First Landing. The flight was a few hours late in landing, so our first experience of Fiji came under cover of darkness. It is a strange experience to arrive in a new country, drive to you accommodation and check in with very little sense of your surroundings.

The heat and humidity were obvious, as was the sense that this was the rainy season (one of two seasons Fiji enjoys, the other being the dry season). The enthusiastic leaps of frogs on the paths and the darting runs of the geckos revealed the tropical nature of our surroundings, and the resort was nestled among mature trees, coconut palms and lush shrubs.

On our first morning, we swam in the pool as huge drops of warm rain fell all around us. This set the tone and pace for the rest of the week. The accommodation was well appointed, with a strong pragmatic quality to the solutions that the resort had come up with in terms of access.
The cast concrete shower seat, for example:

showr.jpg               concrete furnishings make for a sturdy accessible shower.

We did go for a couple of trips out, firstly to Lautoka to visit the food market, so that we could take advantage of our self-catering accommodation. When we arrived in the small city our travelling circus immediately turned heads, something I put down to my front wheel attachment, which makes my chair into more of an offroader, essential in a city where the footpaths are very cracked and uneven. In hindsight, the wheel had little to do with the interest we attracted, but I will return to that subject in part 2.

Having stopped for a lunch of Indian food, we headed for the market, where I edged my way between the produce piled on the ground around the outskirts of the covered market, inching along trying to avoid leaving  a river of pulped fruit in my wake.

The trip to the supermarket was a step too far, as the gradient on the ramp into the shop was 1 in 2. Instead I sat outside with my son on my lap. As we turned so many heads, I inadvertently said out loud,
"Everyone's staring at us."
This is not the kind of comment I like to make in front of the boy. At 3 years old, his capacity for shy is easily triggered, and I was worried that he would feel uncomfortably.
He clearly was, but his response was not that of a shrinking violet.
Instead he shared his observations with the crowd.
"THAT MAN'S STARING AT US!....SHE'S STARING AT US!.....THOSE KIDS ARE STARING," etc.
I soon became uncomfortable at the way he scrutinized people so blatantly.

Our second outing was on a catamaran out to the miniscule island of Savala, a blob of sand with a shelter, kitchen and a few kayaks on it. To walk the coast of this land mass would take about 10 minutes.

On the outward journey, we stopped above a small reef and everyone dropped into the ocean for a bit of snorkeling. This is something I enjoy very much, especially as it's an activity I can share with my daughter, so I threw myself enthusiastically into the water with everyone else. In case you are thinking, gentle reader, that this is one of those yarns where I end up flailing around in the Pacific, unable to access the ladder back onto the boat, fear not. We had already scoped out the other boat that accompanied us which had a water level platform at the back, so I knew that I could get aboard. I then got to ride on the back step as the boat tore through the water. I held my ankles tightly for fear that one of my floppy legs might slip into the water and the wake would suck me into the ocean like a child eating spaghetti. 

However, while the staff were very helpful, communication was not their strong suit, and so Penny and son were dropped off on the island while daughter and I were still in the open water. It was a nervy 40 minutes on the sand before we arrived and I was reunited with my wheelchair.

Desert islands are very picturesque places. However, they are not very wheelchair friendly. In fact, the combination of soft white sand, palm tree roots and briny water make them positively hostile to anything with greased, moving parts (oh, matron, etc). Luckily, the staff were very capable, and happy to push me around the island and haul my sorry carcass out of the ocean after I had enjoyed another swim.

Untitled.jpg           beached as.

Our week was soon over, and I left Penny and the kids to enjoy a final day by the pool while I met up with the rest of the team from Motivation Australia and we journeyed down to Suva for the business end of the trip. But that's a tale for another day...

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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.

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