Thursday, 19 December 2013

Access Denied

You may remember that this past Sunday I shared an article written for the Daily Mail by Sophie Morgan. Sophie had planned a night out at the famous Ritz hotel but there was just one problem. Sophie is a wheelchair user and was therefore unable to ascend the stairs at the front of the hotel. No dobut someone asked her, as they often ask me, whether or not she can walk at all. This is the standard question of any assisting staff when they learn that you can't walk and that you would like their help. You can't walk? Not at all? Preposterous. Everybody can walk a bit, can't they? No. Sophie got in to the Ritz, but only through the back door via a grubby sounding alley lined with black bins.

Anyway, this got me thinking about a few things. And we all know how dangerous that is. Firstly I thought about how amazed I was that the Daily Mail should carry a story championing the rights of anyone who is not a middle class, white, able bodied person, but also I thought about my own experiences of access problems complicating my social life down the years.

Not that it is just a problem when you want to go out for a meal and/or a few drinks. Earlier on today I tried to leave the building which shall remain nameless for my lunch, only to find that someone had parked a big white van as close to the exit door by the disabled car park as they could without actually driving through the building. I had to go all the way back and through to the other side of the building to exit through the main entrance/exit, and then go back on myself to get to where I wanted to be. I could have especially done without this extra journey today as I am not feeling very well at all. On Friday, just three days after avoiding dialysis by the width of the gap left for me by the white van driver, I hit the ale very hard indeed. I've had a variety of problems since. Bladder pains, kidney pains, nausea, dehydration. You name it, I have had it this week.

All of which is especially worrying with Christmas coming up. I recognise now more than ever the need to look after what is left of my ravaged organs, but I'm frankly quite buggered if I am going to hang around for another 20 or 30 years grimly drinking coke and 'getting the crisps in' like the old mizzo from Early Doors. It hasn't helped that in order to reinforce my belief that everything is alright and I'll be able to celebrate Christmas properly, I've had to get up and go to work. Some would argue that the sensible thing to do would have been to phone in sick and relax, try and get myself right for Christmas, but I'm troubled by the thought of justifying going out on Friday night if I haven't turned up to work through the week.

Back to the plot and Sophie's little predicament. The fate of all wheelchair users to some extent. Undoubtedly the biggest problems arise when you, as a wheelchair user, have the temerity to want to mix it socially with the rest of society. We all know the tale of how my dearly departed friend Paul and I were ousted from a club at which we were the most regular customers for being a 'Fire Hazard'. In so doing, and although we didn't know it then, we gave this column its name. Sophie comments in her piece that some of the access problems she has faced have prompted her to want to just stay in and share a bottle of wine with her friends. That's Sophie's Choice. But that approach is not for me, I must say. It's letting them win. If I want to go, I go and bugger the consequences. The only difference between now and when I was first embarking on my journey of drunken debauchery at about 19 is that now I'm less inclined to want to go anywhere if it is going to cause me more problems than it is worth. But rather than stay in like Sophie, I'd probably just go somewhere else.

I had no such decision to make when I was a teenager. I remember a few months after splitting up with my ex-girlfriend we had found out that she was in Crystals nightclub in town. Crystals was the most putrid, granny-grabbing dive in the town, up against some pretty stiff competition I can assure you. It was what Obi Wan Kenobi might have called a wretched hive of scum and villainy. I had always known it wasn't very accessible and never had the inclination to go, but at that particular time I was going through a transitional period. I'd been dumped and I wanted to know why.

So I climbed the stairs.

Ignoring the queue I headed straight for the entrance door, bailed out of my chair (wildly assuming that some disapproving bouncer would carry it up the stairs for me, which amazingly they did), and proceeded to climb up the stairs on my arse. Step by step. Like a toddler. I hadn't decided what I was going to do when I got in to see my ex. I was either going to beg her to come back or I was going to smack her over the head with a fire extinguisher. I wasn't sure which. In the event, and after all that hard work and the absolute mortification of my friend who tried in vain to pull me back from this madness, my ex wasn't even there. I can't even remember whether my friend bothered to come in with me (he'd have had to be lifted in as he also uses a wheelchair) or whether I just toddled back down from whence I had came. My actions were extreme and ridiculous, yet they stand now as a shining example of how not to let access issues beat you down. So long as you don't mind the fact that everyone thinks you are certifiably insane. I did something similar at Lineker's Bar in Blackpool with no real motivation that I can think of other than to not let the bastards win. I was out with some university friends who suggested going in. I gave it a go, I got in.

Another great display of bonkers barrier-breaking was provided by the aforementioned Paul who, some years later, found a novel and splendidly stupid way to overcome the fact that the lift in Nexus nightclub was not working one night. Well, that's what they told us. The old 'the lift is not working' has been offered as a stock excuse for not letting the crips into nightclubs since Stephen Hawking was a rampaging, 17-year-old lager lout. Well he might have been. Anyway, Paul had spotted the fact that a group of Saints players had chosen to frequent Nexus that night. The question of why would you go there when you are on the money they were on is one of life's imponderables, but there they were. Presumably unsatisfield with the company on the ground floor, Paul persuaded one or all of the Saints players to help carry him up the stairs to the second floor. Maybe he wanted a change of scenery, maybe he just wanted to see the view from the balcony, I don't know. But like me, if he wanted to do something there was little point in trying to persuade him not to. It took me several hours to find him once he'd gone up there. I wouldn't mind but he didn't even support Saints. Hated them. Their every victory was a dagger through his very soul. Not that there were that many of them to worry about in those days.

With that in mind he would not have enjoyed the Saints end-of-season bash that my other friend Paul and I (all of my friends are called Paul, it keeps it simple for me) managed to crash into after one of our Super League Grand Final wins some years later. They all went to the Sin Bin, formerly Appleby's. I had never been to Appleby's previously, partly because of it's pitiful attempts at accessibility, but mostly due to the fact that its hey-day was well in advance of the time when I took to the bottle. I missed that particular boat. In latter years the Sin Bin was called Imperial, a bar known only for the fact that it was the location at which Saints' star Sia Soliola was beaten up by a group of rotweillers. I mean bouncers.

Back when we went (and probably still to this day) the only way in for wheelchair users was to be physically lifted up the stairs by anyone willing. Fortunately Paul and I were drunk enough to allow this to happen. We're not really the heaviest of men, so none of the Saints players seemed to blink too much at the prospect of hauling us up a few stairs. It wasn't until we got inside and had a drink or two, however, that I remembered that we would need disabled toilets. Which they didn't have. Of course not. They were never going to. So I did what any disabled person possessed of a penis might do in an emergency and took a bottle into the kitchen. Whereupon I found a certain Saints player of old in a compromising position with a star-struck young lady. The sights we have seen. But when you've got to go, you've got to go.

Notable mentions in the category of apalling and lazy attempts at access also go to the Yorvik Centre in York, where you have to book three days in advance if you are a wheelchair user because they can only have one inside the buidling at any one time, several castles which allow only access to the ground floor and justify this by charging you less, and quite a lot of Spanish and European bars which are ok to get into, but should you try and empty your bladder you will find the toilets behind a door of the kind which Alice In Wonderland needed a magic potion to negotiate. And who could forget the Chinese Buffet in town, whose policy it was to leave a note on their lift informing potential users that it was out of order. Why? To stop the people who shouldn't be using it from using it. But doesn't that stop the people who should be using it from using it too? Well, yes.

So the moral of the story seems to be that if you have a disability which general consensus suggests prevents you from doing a certain something, while you are still young enough not to care bloody well do it anyway. Even if it does make you loook ridiculous.

Tuesday, 10 December 2013

Old Before I Die

I went to the hospital today. To the nephrology clinic. The kidney specialist, in other words. Members of my family may want to look away now as I recount the tale of this extraordinary, terrifying but ultimately positive and encouraging visit.

Those of you who regularly frequent these pages will know that in the summer, upon my discharge from Whiston Hospital, I was told by a urologist that not much had changed since my last scan six years previously. That news was the culmination of an agonising day's wait for the scan results, made more unbearable by irresponsible talk of permanent catheters and piss bags by doctors who knew about as much about my personal circumstances as I do about The Apprentice.

Imagine my surprise then when I was told by Mr Khalid, yet another new specialist I had never laid eyes on before, that I could expect to begin dialysis treatment for my ailing kidneys within the next two to three years. Two to three years. When he told me I let those words hang in the air for a second, unable to conjure up a sensible, coherent reply. While dialysis treatment is not a death sentence, not by any means, it is at least a life changing course of action reserved only for the desperate. The gravely ill. So to hear this was not so much surprise as abject horror. With all the reassurance of a Tory politician letting us know that we are all in this austerity thing together, Mr Khalid informed me that I wouldn't need to leave work, that they could train me to administer the treatment to myself at home, and that following the treatment a kidney transplant was definitely a viable option. So long as I don't have any heart problems. You know? Like the sort of palpitations that accompanied my raging potassium levels just a few months ago.

So at this point I am trying to think of what I can do in the three years I have before my life changes forever. I'm working on my Bucket List as he talks to us about going along to see the Dialysis Education Team on my next visit which, again reassuringly, won't need to be for another four months or so. I've always wanted to go back to Australia after an all too brief visit to Adelaide in 1993. It was a basketball trip. My fellow basketballers reading this, past and present, will know that that basically means the inside of hotels and sports halls. Not bright lights, wonders of the world or Christmas on the beach. Although we did see a real live koala bear in the foyer one night. So there's that. And I'm going to New York next summer. I'll very probably be in Little Italy on the night England play Italy in the World Cup in Brazil. Which just leaves going on a cricket tour with the Barmy Army and having a novelised version of Memoirs Of A Fire Hazard published. It's a lot to cram into three years.

And then the tide turns. I get my reprieve. Early in the conversation Mr Khalid had said that my kidney function is at 24% and that, for a man of my age, that percentage should be somewhere in the 60's. Then later, Mr Khalid places my kidney function at 28%. Looking for something to hang on to I pull him up on this, but he responds by telling me that either way, they are not going to last much more than the two or three years he has already estimated. I'm disconsolate, desolate, inconsolable and all of those things, but I want to know how that can be when the urologist at Whiston had said that not much had changed in six years.

"It was only 30% when I had my scan six years ago." I say;

"How can it be that it has fallen only 2% in six years yet you expect it to pack up completely within three more years?"

"Was it?" asks Mr Khalid;

"I'm so sorry. I did not know that. You can forget that two or three years, then. It probably won't happen that fast. I'm sorry to have upset you."

He continues on this theme, apologising to us profusely while he and Emma have another discussion about how it can be that he can come to wild conclusions when he doesn't have all the information. After Whiston in the summer, I am beginning to think that this is how all specialists operate. Scare the bejesus out of the patient and then everyone will feel so much better when it turns out not to be as bad as first feared. It's dizzyingly clever when you think about it. I came out of there feeling euphoric, a whole new approach to life developing at a searing pace as I plodded over to complete the formalities of the blood tests. If I wasn't doing it before I am going to start living for today in a big way. I will require dialysis and probably a transplant one day, so I have to keep that at the back of my mind and live my life accordingly.

All of which could be bad news for Memoirs Of A Fire Hazard, which considers negativity and cynicism as it's stock in trade.

"Well tonight I'm going to live for today so come along for the ride..........."

Wednesday, 4 December 2013

International Day Of Lip Service

Before we begin with today's offering I just want to share something with you.

I had been in the disabled toilets at the place which cannot be named for literally five seconds when there was a knock at the door. I was still decent at that point so I opened the door. There was nobody directly outside but out of the corner of my eye I could see a man actually running away as fast as he could. I can only think that he caught a glimpse of my wheelchair and ran away out of pure shame. No doubt he expected that the person in there was not disabled, and just doing exactly what he was doing, using a facility that they have absolutely no right to or need for on the basis that real disabled people can't possibly exist. Then again he might well have been disabled, but if he was I haven't seen a disabled person run that fast since Oscar Pistorius. And if it had been Oscar he wouldn't have knocked, he would have just shot me through the door. Allegedly.

And so to the matter in hand. Yesterday I found out via the dubious gift of Facebook that December 3 is International Day Of People With Disability. Now the first question which leaped directly to mind was...'what for?'. Regular readers of this column will know that I am all for promoting the rights of disabled people but it seems to me that promoting those rights and awareness of issues surrounding disability for just one day a year is a complete nonsense. Why are we doing this for just one day when we should be doing it all of the time? You might just aswell have an International Day Of Wiping Your Arse, or an International Day Of Washing Your Bollocks. Respecting the rights of disabled people should be as automatic and mundane as either of these. That it is not is a sad reflection on our society not just here in the UK, but globally.

International Day Of People With Disability has been promoted by the United Nations since 1992. Assuming that 1992 was the first and that the suits didn't just sit around their table and say 'let's think about the cripples next year', we have now had 22 International Days Of People With Disability. Without bogging you down in the mathematics, that is roughly 0.28% of the days since 1992 in which some people somewhere may have taken a moment to reflect on disability issues. Or at least spent a couple of terrifying minutes walking around in their front room with the lights off to try and get an idea of what it might be like to be blind. Probably.

If it is not bad enough that we get only one day a year of respect and awareness of our tricky plight (or 0.28% of all days whichever way you want to look at it), it isn't even that well observed if my experiences are anything to go by. As I explained I wasn't even aware of it myself until yesterday, and the whole event passed me by completely. Nobody made a special effort not to use disabled toilets when they demonstrably don't have to, nobody knocked on the door and asked if they could take my chair for a spin just to get a feel for how I have to lug myself around on a daily basis. Nobody I know had a dart at using a catheter the size of a boa constrictor. Nothing. International Day Of People With Disability should actually be called International Day Of Lip Service. I actually don't know who observed International Day Of People With Disability or what they did to observe it. It is all very reminiscent of 'Kiss A Cripple Day' which, although clearly a made up and fruitless ruse by some chancer trying to attract attention from the opposite sex, would have been a wonderful opportunity for you able bodied people to demonstrate just how aware you are of disability issues. I can't remember what date Kiss A Cripple Day is, but what I do know is that only Emma was a willing participant in my world. Reports that Joss Stone and Jennifer Lawrence left the country and hid on Richard Branson's remote island until it passed are unconfirmed.

Next week, I participate in International Day Of Not Ranting At The Ignorant.

Monday, 2 December 2013


Memoirs Of A Fire Hazard has been censored. Gagged. Had it's mouth zipped like the gimp from Pulp Fiction.

I wouldn't call it a reprimand, but it was made clear to me today that I am no longer permitted to mention the name of my employer on these pages. Furthermore, I am not allowed to include the name of my employer on my Facebook profile if I am then going to go on to describe a negative experience at work. I don't write about work very often anyway. There is very little humour in getting up half an hour before you go to bed, and then spending eight hours or more staring at spreadsheets or processing travel claims. Very little mileage in publicly alienating people who probably have it in for you anyway. It's a battle that is unwinnable. Believe me I would much rather be writing about falling out of my chair or leaving my wheelchair wheels at home than anything that goes on in the office. Yet should I feel the need to write about my occupational travails in future I will have to do so without revealing the name of my employer. Failure to comply might very well result in my being blown to bits by an out of control robot built for law enforcement, but more likely they will settle for informing me that I am in breach of their internet usage policy. Presumably persistent breaches of this policy will result in their corporate behemoth foot connecting with my backside. The Thought Police have pulled down my pants and thoroughly rogered me.

It seems that my employer does not want to be linked in any way to the fact that I sometimes have a shitty day within their exalted premises. That's bad press. Apparently there is such a thing as bad publicity. But there are a couple of things about this. Firstly, I am a depressive. It is perfectly possible that I could fall into a vault of tits and chocolate and still have a shitty day. Less likely than during a day at work, but still possible. There is no rhyme or reason for a depressive, no logic. I don't know why I feel shit some days, and my employer really shouldn't feel so responsible. It is not necessarily a reflection on them. Secondly, how many people do they think will get a negative idea of the organisation from my columns? I noted darkly earlier today that over the last few days I have seen at least five photographs of food on Facebook which have received twice as many 'likes' as anything I have ever written. I'm so small time that you can barely see me. An average of about 70 people visit these pages when a new article is published, many of whom no doubt take one look, think what the fuck is this, and go back to the 27 episodes of The Chase that they have in their Sky+ planner. Yet my employer still wants to silence me.

All of which throws up wider questions about censorship. On the whole I am dead against it, but even more so if it affects my own work. If someone wants to watch mindless violence or sweaty sex then that is their choice. Likewise if I want to write and therefore inform a third party that actually work was quite crappy today because certain people who always remains unnamed in any case are behaving like arseholes, then I should be able to do it and be left in peace. This column might be of piddling importance in the grand scheme of things but for me it is catharsis. A chance to blow off some steam, write down words that I wouldn't say in front of my mother, and generally release tension. Without it I would probably end up rocking backwards and forwards and dribbling for large parts of my day, and I would be incapable of serving my employer in any case. Removing the name of my employer may seem like, and probably is a small price to pay to allow me to go on steam-blowing, but if we are to censor it in this fashion then where will it end? Maybe with my employer enjoying even further input into this tin-pot operation. Maybe I could email it to the press office and have them check over it before I hit publish. Or perhaps they could write it for me. No doubt they have an army of monkeys sat at keyboards just waiting for the nod to take over the creative side of Memoirs Of A Fire Hazard. Well, they might if it were that important.

Disclaimer: The views expressed here are my own and do not represent those of my employer, for whom everything is fluffy and wonderful and criticism or the merest hint of employer dissatiscation is anathema.

Tuesday, 26 November 2013

..........Of Mental Health & Sledging

I know you don't like cricket. Or at least, the majority of you probably don't. It's an acquired taste, requiring a level of patience and intellect that might not be attainable if your brain has been fried by I'm A Celebrity. But anyway, Jonathan Trott's departure from the England tour to Australia has thrown the issue of mental health back into sharp focus.

I like to think I know something about this. I've never been diagnosed with a 'stress related illness' but I have had crashing lows and sought counselling at certain points. The term 'stress related illness' almost feels like something specific to cricket in any case, following similar tour departures from Marcus Trescothick and Michael Yardy in the recent past. Depression is a more common term, but perhaps that is rather more taboo in the macho world of competetive international sport.

Whatever you want to call it, it usually starts with a trigger. It doesn't have to be anything that might ordinarily be considered majorly traumatic. It doesn't take a death in the family or the destruction of your house to feel depressed. But there is usually something, at which point the illness takes over and magnifies the trigger by a million gazillion per cent so that whatever it is that has kicked the whole thing off seems so much more important than it might have done otherwise.

Nevertheless the suggestion that 'sledging' had anything to do with Trott's illness seems far fetched. Australian batsman David Warner told a salivating press corps that Trott's dismissals in the first Ashes test were 'weak' and 'poor', an assessment which England captain Alistair Cook believed was 'disrespectful'. But while we are on the subject, sledging should only be allowed if it is funny. Australia captain Michael Clarke has just incurred a sizeable fine for telling James Anderson to 'get ready for a fucking broken arm'. This is a base level of playground bullying lacking even the merest trace of humour, and the fine is therefore justified. Regardless of what Shane Warne thinks. Cartainly it is not up there with James Ormond who, upon being told that by Mark Waugh that he was not good enough to play for England, retorted that at least he was the best player in his own family. Or Sir Ian Botham, when being asked by Rodney Marsh 'how's the wife and my kids' answered that 'the wife's fine, the kids are retarded'. Thinking of ways to enforce this a friend of mine came up with the idea of having a panel of comedians decide on which sledges are funny and which are not. He suggested that the panel should contain Frankie Boyle, a man who to my mind has no place in public life, witless arse that he is. So instead I suggest we leave it to the crowd. Announce the sledge over the tannoy and see if the crowd laugh. If they don't then you're getting fined. Seems fair enough to me.

The truth is we don't know what Trott's trigger was. None of us have any idea what is going on in his mind or in his private life which causes him to waft erratically at Mitchell Johnson's leg-side bouncers. We're told by the England management that Trott has been managing this condition ever since he came into the England team some four or five years ago. I have been managing my bouts of despression for far longer than that, and they have only improved in the last 12 months or so since I just stopped over-thinking everything. A consequence of that, however, is that life becomes a bit of a hamster's wheel. You get on when you wake up, pedal around furiously in an attempt to just get through the day, then you stop for a sleep. Work, eat, watch tv, sleep. But the point is it's a routine which leaves you precious little time to let your mind wander around dangerously.

Perhaps that is what Trott needs, or perhaps like Trescothick he needs not only counselling but medication. Mental health is very much an individual thing, with no set symptoms or cure. No one size fits all solution for every single sufferer. But people need to be tolerant of it, which has not always been the case in the sporting world. That old machoism again. Witness John Gregory's disbelief that Stan Collymore could ever be depressed given the size of his pay-packet. It's never as simple as that. Although we should probably remember that this is the same John Gregory who, upon being told by Dwight Yorke that he wanted to leave Aston Villa to join Manchester United, later reported that if he had had a gun he would have shot the Trinidadian striker. Really John? It's just a game.

Sport pales into insignificance when you can't be certain you are going to make it through the day without suffering a nervous breakdown. It did for me. It is no coincidence that I stopped playing basketball at a very difficult time for me personally. I've been called 'mentally weak' (among other things) for my troubles. I am not, clearly. I go through things every day that many people cannot imagine and there is little doubt that my problems are inextricably linked to my disability. How are able bodied people meant to understand that? Mental health problems are not the result of weakness, but of illness. Although my disability contributed to mine, Trott's problems show that it can happen to all sorts of individuals, with all sorts of different personal circumstances. We cannot make wild assumptions and generalisations with something so complex.

I never went back to basketball, and neither Trescothick nor Yardy played for England again following their episodes. Not to say that Trott will disappear from the England picture forever, but he faces a very tough battle to get back firstly to health, and secondly to the England batting order.

He might well decide that cricket isn't worth it.

Tuesday, 19 November 2013

Guess Who?

I'm not famous. In no way, shape or form am I well known. I'm Not A Celebrity, So Leave Me Here. Very few people in St.Helens are famous. Probably only Johnny Vegas can say that he is well known outside of the M62 corridor. It's an injustice that some of the people who have played for Saints with such distinction down the years (and in particular Steve Prescott after his super-human achievements before his tragic death last week) are not well known in Tunbridge Wells or wherever but there you go. That's another blog.

I point out my lack of celebrity because I got recognised on Friday night. By a taxi driver. He came to my house to take me, along with Emma and her mum and dad, into the town centre. We were going to the Chinese Buffet in town. There was nobody famous in there either. Only I got recognised. By a taxi driver;

'Oh I remember you from Sindy's' he said.

There are a number of things about this. Firstly, 'Sindy's' as far as I can ascertain, has not been called 'Sindy's' since my mum and her mates went there before I was born. When I was in the building it was called 'Lowie's', but even that guise has long since suffered it's demise. It must be fully 15 years since I went to Lowie's, and even then it was probably only because they briefly reduced the price of a pint of beer to 50p in a desperate bid to get the punters back in. The world was changing beyond their control. Staying in was becoming the new going out, especially after the smoking ban came into force a few years later. Even the fiendishly brilliant marketing ploy that was changing its name to firstly, 'The Plaza' and latterly 'The Orange House' couldn't keep people in the building.

Anyway, like I say it was all a very long time ago, so how does this man know me after all these years? The awful truth is that he might know me, he might not. He's taken a blind punt that it was me because he can remember, through the fog in his small mind, picking up a very drunken disabled person from the premises. Whatever it might have been called at the time. There is every chance that it was me. I confess, I was there. But equally, there is every chance that it was my good friend Paul who sadly is no longer with us. Or it could have been any number of people who happened to frequent the premises and have the temerity to do so in a wheelchair. Either way, can any of you able bodied people really say that you have to endure people who have met you once in or outside of a nightclub 15 years ago recognsing you on your way out for a quiet meal with the in-laws? It's worse than having the fucking paparazzi hiding in the bushes in my back garden. Celebrities have to put up with that sort of thing but they are paid a gazillion bazillion pounds for their trouble. I have a grade four administration job in a University. It's not the same thing.

But it's the uncertainty that annoys me. It might not have been me, but I'm usually too polite to point this out to people. Quite often when I am recognised, it isn't me. Brilliantly, I was once recognised by my friend's brother's best mate on the way home from the pub;

'Alright, Phil? Shit result for United, wasn't it?'

I think you have spotted the flaw in all of this. I am not Phil. My friend Phil is Phil. Yes he has a wheelchair,but it is there that the similarities between us end. Ok, we are both miserable buggers but is it any wonder when we have to put up with bullshit like this? This man, who to be fair might have drunk half of Thatto Heath dry by then, continued to insist that not only was I Phil, but that I actually gave a flying fuck about Man Utd's result other than to take great joy in their misfortune. Several attempts on my behalf to deny being Phil or the much greater indignity of supporting Manchester United fell on deaf ears. Or insanely drunken ears at the very least. Can your ears get drunk?

No matter. This ambiguity can sometimes work in our favour. The inability of able bodied people to look above the wheels and identify someone could be all I need to commit the perfect murder. You could put me in a Usual Suspects-style line up with five other wheelchair users and there are able-bodied people out there who would not be able to pick me out had they witnessed the crime. Some of them couldn't narrow it down any if two of the five people in the line-up were women! Because to them there are no male and female wheelchair users, only people in wheelchairs. We are continually desexualised and dehumanised. The third gender. Whenever I go abroad I marvel at their ability to put a disabled toilet within the confines of either a gents or a ladies toilet area. Meanwhile Britain continues to be mysytifyingly unable to make this kind of scientific breakthrough. The third gender must have it's own room, and while it's about it, it must put it's hand up at the bar and ask Miss if it can have the key to get in. It's either that or wet yourself. You fucking choose.

If people aren't going to look above the wheels (and I don't think there is time to tell you about the occasion when some kids mistook me for another local man called Malcolm who not only cannot power his own wheelchair manually but can't actually verbalise due to the severity of his disability) then we might aswell just all have a great big game of Guess Who and then we'll just become whoever is on the card we end up with. Have you got glasses? Have you got blond hair? Are you wearing a hat? Are you fucking Albert or Morris or Ged?

Even I don't know now.

Wednesday, 13 November 2013

Falling Down (Again)

Let me tell you about my day.

Normally my life is a pretty dull affair. I get up, I go to work, I go home, I eat, I watch telly, I sleep. There are sporadic periods of neurotic angst thrown in to spice things up now and again, but for the most part I've become a rather dull version of myself now that I'm into my late 30's.

But today was different. And not in a good way. The morning was unremarkable, except for an unwelcome fire drill. Every Wednesday morning the fire alarm goes off at work and is duly ignored. Everyone knows it's a test. But today it went off for a second time. In a this-is-not-a-test sort of way. So we grabbed our coats and headed outside. For me this means waiting next to a lift which has recently been shut off and needs to be operated by a colleague with an evacuation key. All of which delays my exit long enough to ensure that when I get outside I am at the back of an army of students discussing I'm A Celebrity, TOWIE and Embarrassing Bodies. When I finally found my colleagues the freedom of being outside the office had clearly got to some of them. The level of banter was beyond banal.

An hour later I risk another foray into the outside world for my dinner. It was an ill-fated decision to say the least. As I was crossing the road three of my work colleagues walked up next to me. I asked them where they were going and they told me that they were going to Hemingways, which is a cafe just across the road from work. I go here often, but this looked like a girlie lunch and I didn't want to impose. Besides I had already half decided to take the risk of heading into the city centre. I say goodbye and we go our separate ways.

As I'm rolling down Stanley Street in Liverpool, towards the city centre, I'm thinking of just about everything except where I am going and what I am doing. Suddenly, quite inexplicably and unexpectedly, I hit a crack in the pavement. Before I even know this I am on all fours on the pavement, crawling around groping for my wheelchair. It's all very undignified but I manage to stop it before it rolls through the front window of the bloody Lobster Pot. As I do this, at least three people stop to try and help me. Everyone means well, but there are times when you wish that they didn't. It may sound harsh, but wouldn't it be better if, in this kind of embarrassing scenario, everyone just turned the other way and pretended that nothing had happened? Unless I'm mortally wounded then I don't really want help after falling out of my chair. I'm not mortally wounded, but my left wrist is very sore. You can write your own jokes about that.

The lunch-time that never ends moves on to Burger King, where another well-meaning able-bodied person gives up his seat for me. There are literally no other seats available, so it's a kind gesture. The kind of help you want if you are hungry and have just suffered the indignity of doing an Ashley Young in a busy Liverpool street. Just as I am about to leave I run into an old mate from my old basketball team. He tells me that he is not married any more (he got married about five minutes ago as far as I'm aware) and that he and another of my friends aren't really seeing much of each other. I tell him to get it sorted and promise to get in touch. I'll probably end up playing referee as the two of them try to outdo each other in the field of vodka-induced pettiness, but a good night will be had by all nonetheless I'm sure. As long as I can get the two of them in the same room.

I'm very late back for work by now and yet I run into another acquaintance. I relay my falling-out-of-chair story and he dazzles me with tales of going to Italy, Amsterdam and Sydney. This man is hardly ever in the country. Not a bad way to live your life, and it is genuinely nice to catch up with him. Same goes for the other bloke. A rare positive on a day of absurd levels of indignity.

The next of which comes at the Boots across the road from work. Not only have I hurt my wrist on my lunch break, but it also transpires that I have a searingly damaging dose of the screaming ab-dabs. The shits, not to put too fine a point on it. I need something to stop it, quickly. Again I have made a poor decision. All I asked for is a standard box of Immodium. The type you can buy over the counter almost anywhere. This isn't Breaking Bad. I'm not trying to buy Crystal Meth. I just want to stop shitting. At that point I am shitting through spaces which consider the eye of a needle to be spacious and roomy. Yet they are not going to sell me the tablets. They ask if I am on any other medication and, without thinking it through and lying blatantly, I admit that I am on medication for my kidneys and my sodium levels. If I had known that the inquisition which followed was going to take place I would have lied. I just never expected it to be a problem. It caught me off guard. Rather like the shits itself does. So anyway I am there fully 10 minutes waiting for the Boots staff to stop conferring about whether I can take Immodium without spontaneously combusting. The staff and I have a staggeringly unintelligent circular conversation about this and I'm reminded of the Monty Python sketch in which the man goes in for an argument and complains that all he is getting is contradiction. This isn't an argument. Yes it is. No it isn't. And so on.


At last, mercifully, thankfully, they agree that it is safe to sell me the Immodium. Who would have thought it? I've only been taking it for a bad stomach for pretty much my entire life. It would have served the jobsworth right if I'd have failed to hold on any longer while I was waiting and endured a Spud-From-Trainspotting soiling moment. That doesn't bear thinking about, clearly, but there might be those who would consider shitting on someone's shop floor to be a suitable form of revenge for contributing to the delay in halting my illness.

I'm feeling better now, you will be glad to know, although my left wrist is still a little bit sore. It's only ten to 5, however, and I am about to phone the chemist about my other medication which is often a challenge that Anneka Rice would baulk at.

It's just another day.

Tuesday, 5 November 2013

14 Years

I always seem to start my pieces with something negative, and let it go downhill from there. It's not intentional. I suppose it is just who I am. In fact, I wasn't going to write this today at all. It's alarming and depressing to note that my blog quadruples in popularity when someone dies.

But there's a bigger picture here. Today marks the 14th anniversary of the death of Paul, a man oft-mentioned on these pages, and I want to mark the occasion. This is the best way I know how to do it. And rightly so that he should be mentioned because he was a great man in so many ways, and was taken cruelly and inexplicably from us at just 26 years of age back in 1999. So much has happened since then. Often I think about this. What would he have made of everything that has changed in the intervening years? How would he have felt about the sad loss of Jo a couple of weeks ago? As I write his team, Manchester City are 4-1 up at half-time against CSKA Moscow in the Champions League. At the time of his death they had not long since won promotion to the second tier of English football after a barely credible play-off comeback against Gillingham at Wembley. It's hard to imagine City playing against Gillingham again any time soon, cup draws notwithstanding. And he would have loved that. That and Wigan's Grand Final and Challenge Cup double this year, the first time any team has achieved that since Saints in 2006. I can assure you he would not have thought very much of that.

Which takes me back to Easter 1996, the first season of Super League summer rugby. Until then we had spent far too many an afternoon freezing our proverbials off at either Knowsley Road or Central Park as all the important fixtures took place in the winter. It's strange to think now that I actually went to Central Park with him on numerous occasions. I'd never go and watch that wretched mob now but at the time it seemed like a natural and sensible thing to do if Saints were playing away. How very old fashioned. Paul probably talked me into it. We both loved our rugby and so the opportunity to go along and cheer on our hated rivals' opponents on any given day was one we relished.

But back on that April day in 1996 we were both at Knowsley Road legitimately supporting our own teams. The only obstacle to a good day being had by all (aside from the result inevitably about to put someone's nose out of joint) is that we were rip-roaringly drunk before we got within half a mile of the ground. I remember spending more time than is reasonable before a game in the Bird I'th Hand pub on the corner of the road where the old ground used to be. I was only going to get worse. We arrived at the ground to find the very limited disabled area three deep. Paul used to joke that half the Wigan-watching disabled public spent every hour at the ground watching the grass grow, so it was no surprise to find them occupying their seats already. And it wasn't as if we were early. Nowadays I can get into the new stadium five minutes before kick-off and still be guaranteed my space. Which is how it should be in a civilised world where I have paid in advance for a ticket. But in those days it was first come, best dressed and we were stark bollock naked. Metaphorically speaking.

So I left him there. You would think that as the one on enemy territory Paul would be the one to bolt, rather than sit behind the crowded mass of people trying to squint between gaps to catch a glimpse of the action. But no, it was me. I left him there on his own and went back to the pub, a lone impostor who had only got into the ground so late because I was somewhat prolific at suggesting we go for a beverage before games at St.Helens. To be fair he rarely argued about it, if ever. Anyway, somewhere in the midst of my unbridled joy at the 41-26 Saints victory (Danny Arnold scored a hat-trick and blew a kiss rather pretentiously at the Sky camera which I loved at the time) I gazed into my pint and felt some sympathy for him. I knew he would be fuming, insisting that none of the Wigan players get their wages this week, and questioning the parentage of the referee.

I'm afraid that the post-match celebrations back at the pub are a bit of a blur. If he was here now I doubt he would remember them any better because he was busy drowning his sorrows with some enthusiasm. It wasn't until a few weeks later when we were at another game at Knowsley Road together that we happened to notice someone familiar in the match programme. They were running a 'face in the crowd' competition, the winner of which would receive a prize from the Saints club shop. To the disgust of both of us we looked a little closer to find that it was him. He had been photographed at some point during Saints derby win, looking tipsy and quite glum. I was affronted at the idea that a Wiganer had won the prize, and he was affronted by the very notion that he would ever touch, much less wear, any Saints merchandise.

But he did. It wasn't a replica shirt or even anything noticeably peppered with Saints logos. Instead it was a rather smart and almost neutral looking blue sweatshirt baring the name of our sponsors at the time, McEwans Lager. For months, maybe a couple of years afterwards he wore it regularly for basketball training, a constant reminder of the day he was the 'face in the crowd' at a ground he talked quite happily about burning to the ground most of the time. In jest, of course. He was a peaceful man at heart. All of which seems to me to be a good deal more ironic than a black fly in your Chardonnay, and above all a great memory.

'Maybe you're the same as me.....we see things they'll never and I are gonna live forever.......'

Wednesday, 30 October 2013

Back To The Hospital

I'm afraid that following on from last week's rather sad entry this column isn't going to get a great deal cheerier. I have to take the story back to the hospital. I feel a terrible compulsion, a duty even, to finish the tale.

So we left me having just received some relieving news from the urologist. It's Thursday tea-time, July 25 2013. Emma has to go. Apart from the odd trip to the scanning lab with a bag of piss on my knee, she has been by my side for the last 17 sleepless hours. Both of us are sleepless, but she is bedless. She's spent the entire time sat in a less than luxurious chair trying to help me make sense of all the rubbish that has spewed forth from the mouths of medical professionals. She can't take tomorrow off work aswell and, since I am now just mildly grumpy and suffering only from palpitations I am assured will get better, it is better if she leaves me to it and tries to get back to normality. She will be back tomorrow night when they inevitably refuse to discharge me.

Taking her place are some members of my family. I really appreciate their visit though it drives me quite mad at times. Without them here, all there is to do is stuff my face with junk food (which hurts because I'm getting oral thrush from all the drugs I have been on) and listen to the craziness going on in the ward around me. More on which later. For now my dad, my sister and two of my cousins are kind enough to visit in what is still, despite the improvement in my fortunes since seeing the urologist, an hour of significant need.

'I'll give you a kidney'. says my cousin Jo.

It's the first thing that comes out of her mouth when she sees me. Or at least it is the first thing I remember her saying. She might have asked me how I was or how long I was going to be in or something, but looking back at it now my memory is almost certain that she skipped all of that and just decided instead to offer me one of her kidneys. As kind an offer as this is it has a couple of basic flaws. Firstly, I don't need one and, despite what nonsense has been discussed by the medical people so far, nobody has suggested that I do. Secondly therefore, such an offer could be construed to be a little on the negative side. As if I don't need one right now, but trust me our kid you bloody well will do one day and then what will you do? While Jo and my sister Helen discuss at length which one of them will be donating the kidney that I don't need I turn to the men, my dad and my other cousin Alex for a less dramatic level of conversation. Alex has brought me more football-related literature than I am hoping to have time to read in here. I'm pleased that it will relieve the boredom when everyone has left, but find out later that concentrating on trying to read actually increases the intensity of my palpitations. That kind of luck is unsurprising to me. Things have been a bit that way in the last few weeks.

Before they go Jo and Helen kindly agree to go to the hospital shop downstairs for me (I'd go myself but I'm still attached to a large bag of urine). They return with the greatest gift a hospital patient can receive. Yes, there is some junk food because I'm about to be bored enough not to worry about how my mouth is, but there is also a fan. Not just any old fan. A Spiderman fan. Writing this three months later I can report that I still have it. As I type this I can see it sitting on the old PC in the corner of the room. The PC that broke about six months ago and just sits there uselessly while I manfully carry on trying to write blogs like this on my laptop without losing large chunks of articles due to its erratic nature. It's been ok so far tonight. I need something wooden to touch.

With Emma and the rest of the family gone I really start to notice my fellow patients on Ward 1C. The first thing I notice is that three out of the four of us are called Stephen or Steven. The one exception is the man to my left, Michael. Michael seems to be profoundly deaf and can only speak at a very hushed volume. To my eternal shame I don't know any sign language despite the fact that there were one or two deaf children at my school. So even if Michael had wanted to communicate he would have been up against it with an uneducated communicator such as myself. I don't think he is much in the mood for it anyway. At one point during his stay he has four or five members of his family and medical staff around his bed trying to convince him to go for the infamous camera down the throat scan. I never find out exactly what he is in here for but I am happy to report that Michael eventually agrees to go for the scan, so hopefully his condition has improved since then. He was moved to another ward in the middle of that very night for reasons you never get told nor really feel it is your business to ask. Hospital is a bit like that.

Also moved that night is Stephen/Steven number one in the bed opposite mine. But not before he has found time to describe to me his love for all things military. He was in the army, and is here now because of the after-effects of a blast in Afghanistan. His lungs got damaged by the cloud created by the explosion. He can't eat or drink anything without throwing it back up. He also is going for the infamous camera down the throat scan at some point. Only he is a lot more cheery about it. His best army tale is of his friends in the boxing team. Anyone of them, he assures me, could easily be a world champion in the professional ranks. Not being the shyest person in the world I can't stop myself asking the obvious question. If they could be world champion boxers (who don't forget make millions of pounds) why would they not do that instead of going out to obscure parts of the world risking their lives. Particularly in a conflict which began in what can best be described as morally, politically and legally suspect circumstances. They just love the army, he explains. The camararderie. The mess halls. I nod enthusiastically while scepticism engulfs my entire being. I like Stephen/Steven number one. He's both prinicipled and thoroughly entertaining. But quite mad, I fear.

Stephen/Steven number two lying in the bed diagonal from me is not so entertaining, but he has it rough. He needs to take on oxygen at regular intervals due to whatever disease he has been struck by. Not only that, but I count five times during one day that he has to endure the dreaded blood gases test. This is no ordinary blood test. I had one myself in the observation ward early in my visit, and the pain is pretty shocking. The injection goes right into the bony part of the wrist just where it meets the bottom of your hand. His dismay at being subjected to another of these tests increases with each one and it is hard to watch. It's also hard to get to know Stephen/Steven number two. When he is not being violated by blood gas tests he mostly sleeps and breathes heavily through his mask. He is also moved to another ward in the middle of the night before the end of my stay.

Eventually the others all settle down to sleep for the night. With the palpitations preventing me from hitting the land of nod I just lie there listening to the sounds of the hospital. The nurses chatting, the deathly howling of what sounds like a tortured child down the corridor, and the thunderous beating of my own heart, particularly at the precise point when my sleep-craving eyes attempt to shut.

Wednesday, 23 October 2013

A Sad, Bad Day

I told someone I would stop scribbling this pointless drivel. But my head is positively spinning with the events of today. So call this catharsis. Or call it pointless drivel. Whatever.

At about 10.50 today I learned that one of my oldest friends had passed away. A former friend if we're being ultra analytical about it. I hadn't seen much of her in recent years due to her dopey but quite understandable choice of partner, but when you have known someone since you were three years of age it's always going to have an effect if you lose them, regardless of the current set of circumstances. There are a lot of memories which come flooding back. More on which later.

Ten minutes after learning this I had to go into a meeting at work. At which point I was laboriously moaned at for half an hour about things that are not remotely my fault. Basically I was hung out to dry and made to feel like a lazy loafer when in fact my workload is barely credible. So by 11.20 or so I am shocked, saddened, fuming and a little emotional. The second meeting of the day was a blessed relief. When the rage takes hold of me at work I can poison the atmosphere with the best of them. I was far better off discussing equality and diversity issues than sitting at my desk quietly steaming and resenting every moment of it.

So back to Jo, my friend who passed away yesterday. Like the countless people with disabilities who I have known and lost before her, she deserved better than this. She was just 40 years old. There is no sensible reason why someone with Spina Bifida should pass away at that age. Jo had some health issues recently and spent some time in hospital over the last 12 months, but it still came as a major shock to me to learn that she had gone.

Thirty-five years is a long time to know someone. You end up with a lot of history, not all of it that sensible. Every year we would be made to play Joseph and Mary in the school nativity play. We probably didn't mind at the time but it became a source of great embarrassment to both of us. Particularly for me in the last few years when I made the transition from being a simple non-believer to an out-and-out enemy of religion. Jo kept her faith all along. I think she found some comfort in it, especially after the passing of her mother from cancer a few years ago. Truth be told, I'm not entirely sure she ever recovered from that blow emotionally. She was very close to her mother and I think she relied on her for many things before her illness.

I have other silly Jo memories. When I was about six she dumped me for someone called Carl Lynch. Quite what an eight year old and a six year old were doing believing they had a relationship is one for the psychiatrists to work out, but I remember being very upset and angry about the whole affair. Angry and upset would come to be the things that I excelled at the most, culminating in my latest meltdown at work today I suppose. All of which pales into insignificance in the context of what has happened to Jo. It's all just so bloody unfair. Shit meetings and poisonous office atmospheres are probably options that she would snap your hand off for given the opportunity. In that respect I should think myself lucky, and I do. Relatively speaking.

Sadly Jo has not been so lucky and she will be sorely missed by many people. Myself included. It doesn't matter how long you have gone without seeing someone, the finality of knowing that you won't have the opportunity to see them again is difficult to come to terms with. Add in the fact that she was a similar age and had the same disability as I do and you could find yourself going down all kinds of fearful, paranoid roads. Why were she and all the others before her chosen to leave us while I carry on poisoning atmospheres and trotting out pointless drivel?

I don't know, is the short answer. And I'm not sure I want to think about it too much. I'd rather think about the positive memories of Jo. Before the dopey partner. Before the tragic passing of her mother. And before the onset of what turned out to be a catalogue of ailments which have taken her far too soon. Goodnight Jo. You didn't get a fair go. But you'll always be remembered fondly.

Tuesday, 24 September 2013

The Hospital Drama - Part Three

A cancelled scan is not ordinarily a big deal. I'm sure there are many of you reading this who have, from time to time, suffered the inconvenience of having scans, maybe even operations cancelled. But the thing was this. My scan was going to reveal the extent of my kidney damage over the last six years. It would determine whether or not I would be allowed to continue to urinate through the conventional body part. And it was cancelled because of a mix-up with a couple of porters.

What I perhaps should have known but did not was that porters have absolutely no authority to decide what time a patient can be taken for a scan. That's not that surprising. They are porters, not medical people and so to have them scheduling scans seems a stretch. What is surprising is that they don't seem to know this. They have no business offering anyone any more time to 'settle in' to a ward they have just arrived on. No matter how distressed and possibly terrorised the patient might be. And I was.

And so it was not long before the arguments began to rage. I was rather pointlessly (or so it seemed) trying to explain to the nurse that I did not refuse to go for my scan and that rather I was twice offered more time by the porters. There were more phone calls back and forth. The initial upshot was that since I had not gone at the agreed time, for whatever reason, my slot in the running order had been taken and the best they could do was fit me in first thing the next morning. It's understandable that they want to work to a strict schedule. They have lots of patients to see and very probably cannot afford to waste time waiting for me to decide when I am sufficiently calm to turn up. The first signs of a weakening in their stance comes when the nurse who had been making the calls offers me a CT scan. This will involve the tedious, painful ballache that is having more injections in my already Incredible Disappearing Veins but at least it would be done today.

No it wouldn't. Another bogus offer had been made. While they had room on their schedule to conduct a CT scan, they then informed me that actually this method of scanning was not recommended for patients who had damaged kidneys. Something to do with the dye they use when they are pricking holes in you. A part of me was relieved at not having to go through the whole human pin cushion thing but a significantly more sizeable part of me was further distressed at this news. It was around 3.00pm at this point. Under the terms of their offer I now had to wait another 18 and a half hours to find out my fate.

Another phone call was made to the lab. If the 10 minutes or so that it took was any barometer, the next 18 and a half hours were going to feel like several lifetimes. Yet finally it was worth the wait. The nurse came back and informed me that, miraculously, unfathomably given their previously adamant refusals, I would be able to go for my ultra-sound scan at 4.35 that afternoon. The chances of pissing through a hole carved into my person had not reduced any, but it was some comfort to know that I would not have to wait so long to get the news.

Shortly after the relative high (I was taking any encouragement on offer at that point) of getting my scan appointment back, there came the setback of another encounter with our friend the lady doctor from earlier. Mercifully she had not come to discuss my future toilet arrangements but instead to interfere with my genitals. And not in a good way. Quite matter-of-factly, almost cheerfully, she informed me that she needed to place a permanent catheter into my you-know-what. Why? Was this a rehearsal for what life might be about to be like, post-scan? The explanation was actually that they needed to monitor the flow of my water for a sustained period, maybe a day or two. So from the original prognosis of being in overnight until they could control the potassium, I was now resigned to at least the next 24 hours and probably 48 in the hospital. Not only that, but I would have to suffer the great indignity of having my knob grabbed by a twenty-something, smart-arsed female doctor who I had already decided I did not like. And it wasn't just the knob-grabbing I objected to, but also the insertion of a catheter which seemed roughly the size of a garden hosepipe. That had to hurt. It did.

There followed a pointless argument between myself and the doctor about my level of discomfort (both embarrassment and pain) as opposed to the level of necessity of the permanent catheter according to the urologist. I hadn't even got to speak to the urologist yet, but I was being assured by this doctor that the permanent catheter was the only real way to monitor my condition. It seemed odd to me that of all the many doctors who insisted on prodding me and asking me personal questions on my arrival, the one person they had not sent to investigate me personally was the urologist. Before I could think of an alternative the female doctor had me in her grasp and began inserting the hosepipe. She suggested I might feel a pinch, which was rather like telling Joan of Arc that she might start to get a bit warm.

When the porter arrived I did not hesitate this time. Interestingly they did not send either of the two who had contributed to my predicament. A third porter was tasked with the job. In truth, they could have sent Hannibal Lector to trundle me down to the scanning lab and I would have taken my chances of not being devoured with a nice chianti somewhere along the way. Getting on to the chair which was to transport me was not at all straightforward. With a permanent catheter inserted it was actually very complex. Wherever you go, it goes. Eventually I managed to clamber on to the chair and, carrying the most unsightly and humongous bag of what can only be described as my own piss on my knee, was wheeled off to have my long-awaited ultra sound. By the way, not only do porters not have the authority to schedule scans, they also don't see it as part of their job description to help you complete your journey to the lab. I was left in a corridor for a good five minutes before a member of staff came out to wheel me in to the scanning lab. Another dance with the piss bag ensued until finally I was on the table getting smothered in gel. I was relieved to note that it was not cold. Last time I had an ultra-sound the gel had been freezing cold, just adding to your anxiety and the feeling of wanting to be anywhere else but on that stretcher.

I was taken outside into the corridor a few minutes later, scan complete. Again I was made to wait for a porter to pick me up so we could make the undignified return journey of the wee carriers. An hour later something incredible happened. A man I seemed to recognise approached my bed and began to pull the curtain around it. Not a man I had seen since I was admitted, but someone from a hospital visit in the past. My old urologist. He walked nearer to address me and explained that he had seen the results of my scan. I winced inwardly and awaited all manner of possible calamities about to unfold. Except they never did. He told me that there had been very little damage to my kidneys since my last scan. He also said that a permanent catheter (for longer than the day or two that he also informed me that he had in fact ordered the female doctor to initiate) would be no good for me and that I should continue to use intermittent catheters. A permanent catheter would only increase the risk of infection in my case, he said. A wave of relief shot through me but I just felt drained, physically and emotionally after everything that had unfolded in the last 24 hours or so. What he could not tell me was how to stop the palpitations which I was still experiencing, although they had become something of a side issue. For that I would need to consult with the other doctors, including my new girlfriend.

I was not out of the woods just yet.

Wednesday, 4 September 2013

The Hospital Drama - Part Two

So we left me on my way to bed after an evening spent in the not so splendid surroundings of A & E at Whiston Hospital. The next morning, after a pretty uneventful night I woke up early and watched the Saints game. It was a triumph which I will not bore you with here, but I was still not feeling as I should. I passed the rest of the day watching all manner of shit television programmes which I inexplicably insist on recording despite the fact that, unless I'm off sick, I have no hope of finding the time to watch. The White Queen? Come on. I am vehemently against the monarchy so why do I give two shites about the antics of Richard III? And besides, isn't that just rhyming slang for taking a dump? I followed this rubbish with a quite awful film called Battleship in which Taylor 'Friday Night Lights' Kitsch goes out to sea to fight seemingly indestructible alien vessels. I can't recall exactly how it ended because I was becoming ever more focused on my deteriorating condition. I'm guessing Rihanna whailed the aliens into submission.

It is difficult to describe how I felt. I had the anxiety of wondering what acidosis might be, and of wondering whether I had done the right thing in discharging myself the previous evening. Despite my not very big or clever Facebook status announcing that I had, I was starting to get the feeling that I almost certainly had not. That feeling was only added to by the fact that I was still experiencing waves of palpitations. By the time some intellectually challenged woman had contrived to trap herself in her bedroom with a psychotic killer in an episode of Luther I was really struggling to achieve any peace. So I went to bed. Not for long.

At about 1.00am I woke up suddenly with some serious palpitations. These were much stronger than anything I had experienced up to this point. My heart was pounding at 1000 miles per hour and I was panicking wildly. I felt like I might have a heart attack, which might sound fanciful but if you are experiencing something like this for the first time your mind wanders to all sorts of dark places. That it was during the dead of night in the pitch dark only added to my hysteria. After a couple of attempts to get back to sleep I gave up and got up. Every time I would get close to dropping off to sleep the palps would ramp up again to the point where breathing became something I had to think about. Added to this was the chilling tingle down my arms which is closely associated with heart trouble. I didn't get any more sleep on the couch but at least I had stopped disturbing Emma.

On Wednesday I remember (aswell as more shit television) a long telephone conversation with my mum. She was concerned about what I told her about the kind of night I'd had, and about what acidosis might be also. Somehow, even though normally I am the kind of person who would jab myself in both eyes with a pitch fork before I'd agree to go into hospital, I had agreed by the end of our conversation that if I had a repeat of the palps that night then I would go straight into the hospital. By the time Emma and I went to bed I hadn't talked myself out of it. It seemed like I had no choice at that point. It was the only sensible course of action. The palps were not just going to stop of their own accord. And they didn't. Within 10 minutes of going to bed, and again just at the point where I was about to drift into sleep I jolted up as the palps swept through me again. Heart pounding, arms tingling, I woke Emma and we got straight up and prepared for the hospital. We were expecting a somewhat longer stay this time so we actually packed a bag of overnight essentials. It was a grim thing to have to do, given my rising phobia. Yet at this point all I wanted was for someone to do something to stop my heart pounding so violently. I didn't really think about how many nights in hospital that might entail. At the back of my mind was the fact that I knew I was heading face first into that scary kidney scan also, but again there seemed little alternative.

We can probably skip the A & E part. It was almost identical to the events of two nights earlier. Blood tests, blood pressure, ECG, waiting. And waiting, and waiting. We spent what remained of Wednesday night in the observation ward. I was zonked out on a bed trying to slow down the palps but suffering from sleep deprivation. Emma was in a chair next to me suffering similarly. As morning arrived we were visited by at least three, maybe four doctors who each wanted to carry out an examination and ask the same questions. Have you got any pain? Are you on any medication? Are you allergic to anything? The final doctor who examined me was accompanied by a young female doctor. The doctor count was rising faster than my phobia at this point. What they said plunged me into a world of terror and, with a mind like mine, no small amount of depression and anxiety. Having been told by another doctor that I should only be in one more night, just until they could reduce the potassium which had risen again, this new pair had other ideas. They began talking to me about my kidney scan from six years earlier, this despite the fact that I had always been adamant that I did not want to know if there was nothing they could do to improve the situation. They were not deterred as they went on to describe how I might be treated to the delights of a permanent catheter, or another surgical procedure which basically entails bypassing the normal method of urinating and having your water escape from an altogether different, artificially created, orifice.

The deadly duo left me with that thought for a few very dark hours indeed, until I was finally, at about 1.00 Thursday afternoon, moved up to an actual, real ward. As the nurse pushed my bed around the different corridors en route to the ward I remember catching a glimpse of the doctor who had wanted me to stay in on Monday night. She made eye contact but didn't say anything to indicate that she recognised me, but I couldn't help but think that she would be thinking 'I told you so'. So now not only was I depressed and feeling hopeless, I was fairly humiliated also. Finally I arrived at Ward 1C where two nurses immediately greeted me. Nurses are great, don't get me wrong, but I was not at that point ready for the way they went about their business as if I hadn't just been told that I might need life changing surgery. To them I was just another patient, just another day in the life and they couldn't see what all the fuss was about. I was so edgy that I was very reluctant to even allow them to take a simple swab of my throat, something which I was informed is mandatory for anyone who is a guest in these dubious surroundings.

Just at the point where they were helping me to transfer from my observation ward bed to the 1C bed a porter came in and announced that he was here to take me for my kidney scan. I let out an expletive and wondered aloud how it could have taken them nine hours to get me on to a ward but only a matter of seconds to disturb me again to take me for my scan. I'd already had one scan which I thought would be enough, but I was now being advised that I would need an ultra-sound. The porter seemed to empathise with my plight and offered to come back in 10 minutes. To give me time to 'settle in'. I was glad of the respite so I agreed, but within two minutes another porter arrived to take me for the scan. I explained that another porter had agreed to give me 10 minutes only moments before and he, like his colleague, was unfazed by this and agreed to let the other man come back for me at the agreed time. Only nobody came back. Half an hour passed. Then an hour. Soon after that I could hear one of the nurses arguing my case. She was telling whoever she was speaking to that I had been told by not one, but two porters that I could have a little more time to adjust following my arrival. This debate carried on for a few more minutes before the nurse came into the ward to explain the outcome of the discussion.

The scan would not be happening today. So the possibility of life changing surgery would continue to hang over me for at least another 24 hours. I was booked in for another scan at 9.30 on Friday morning. But for today my scan was cancelled.

Friday, 30 August 2013

The Hospital Drama - Part One

I haven't written anything for a while you may have noticed. For the past three weeks that has been due to the fact that I am world class in the field of laziness. However, for the three or four weeks before that it was due to the fact that I was either ill, in hospital or both.

It all started the week I came back from Portugal. By the way I will finish that story also. There are a few more things that happened on that holiday that I'd like to tell you about but that's for another time. For now I had gone back to work on the Tuesday after we got back to the UK. For the first couple of days in work everything was fine but by the Thursday I was beginning to feel very peaky indeed. I had booked Thursday afternoon off that week anyway because the Ashes series was starting. What? There can't be anything better to use one's annual leave on than vegging around on your sofa watching a couple of sessions of test cricket. Especially the Ashes. People who say it's boring just haven't got the patience or, dare I say it in some cases, the intellect to appreciate the longer form of the game. Anyway I didn't see any cricket that day.

I went straight to bed. Obviously I have had illnesses before but it would normally take a particularly nasty bout of the bubonic plague to stop me from watching the Ashes. This must be serious, I thought. I was feeling nauseous without actually being able to vomit, had an impressive variety of bladder and kidney pains and was roasting hot. The fact that 2013 was one of those rare years when summer actually arrives was not helping in all of this. Anyway I just gave up and went to bed as I say. By the time Emma came home from work at about 6.00 I didn't feel any better. I got up briefly but I don't remember eating anything before going back to bed a few hours later.

I had planned another afternoon off on the Friday but that wouldn't be necessary. The symptoms had just got worse and so I called in sick. Annoying when you know you are only due in for three and a half hours but this was getting perilous. In any case I am quite sure my colleagues had had enough of me wretching at my desk and having to look at me as I turned ever more green. The weekend I remember passed in a blur of illness and anti-biotics but by Monday I was starting to feel a little better. Not much, but the improvement led me to believe that I might be alright to go back into work the following week after four or five days rest. That was what I thought before I went to the hospital for a blood test. Because my doctors kept insisting that my water test results showed no evidence of an infection I had agreed to go and have a blood test. There had to be something there if the anti-biotics were making me feel slightly better so I thought that a blood test might show something up that the water test had not been able to. All of which was straightforward enough. I still felt rough but it was no great hardship to get the blood taken. It was not until I got home and tried to rest again that things got tricky.

At about 4.00 I was watching some over-rated Robert Redford film about a man who runs for office in California (or somewhere) and then finds out that everyone and everything about Californian (or wherever) politics is corrupt. Who would have thought it? Anyway before I find out what happens to this man the phone rings. It's my GP. He tells me that the blood test I have had earlier in the day shows that I have very high levels of potassium. So what? you may ask. He also says that high potassium is extremely dangerous for the heart and that I need to go into A & E as soon as possible to have treatment to lower my potassium levels. He tells me that if I do not go for the treatment then the condition I have is potentially fatal. Potentially Fatal. He actually uses that phrase. So little more than a week ago I'm on a beach in the Algarve with hardly a care in the world yet today I'm going to die. Potentially, obviously. How things change. At the precise moment he tells me this, and I can pinpoint it exactly in my memory, I start having heart palpitations. Small at first, like the feeling you get when you have a bit of a fright. Maybe like you think you have forgotten something important, but then it goes away when you realised that you have remembered it after all. My palpitations only subsided temporarily though. They began to return every few seconds, even as Emma and I had a pointless argument about whether I should go for the treatment or not. I said I wasn't going but Emma said I was, and it kept on like that for a little while until I reluctantly agreed to go.

It had been a long time since I had been in an A & E department. Hospitals just aren't for me. I don't trust doctors and I'm paranoid enough to believe that the health service considers those of us with physical limitations to be expendable. If I were to write a list of names here of the people I have known with various disabilities who are no longer with us and who left us at a ludicrously young age it would take you the rest of the day to get through it. There are countless, some of them really close to me, others just acquaintances. But it scarcely matters. Once you have seen death among your peers you start to wonder a lot about your own mortality. How am I here and they are not? Something went wrong somewhere. Surely someone could have done something? I remember one morning I was on the school bus and we pulled up outside the house of one lad to pick him up. There was a black van outside the house which didn't mean that much to me at first. At that age I had never seen anything like it. But the lad had died that morning and presumably the van was there to take the body away.

Anyway, I consider that the best way to avoid adding your name to the list is to not go to a doctor or a hospital unless you absolutely have to. Just don't let them get their hands on you and complicate things, is my philosophy. As long as you feel well, who gives two shites if your kidneys are working at roughly the same level as your legs? But of course now, as we go back to the plot, I'm being told I have heart problems. Potentially Fatal heart problems. Now this is different gravy. I know my kidneys aren't going to kill me just yet but my heart? How do I know what state that is in? I've never had to have a scan or an ECG or anything. What I do know is that it is currently palpitating at the rate that Usain Bolt turns his legs over in the 100m. Still, at the back of my mind is the knowledge that it has only been doing so since the doctor told me I had Potentially Fatal heart trouble and so maybe the palps (as they became known) are a self-fulfilling prophecy. I'm ill because I'm being told I'm ill. Or something.

At this point the first of my paranoid theories about hospitals is crushed. I had been expecting to spend at least three, maybe as many as six hours waiting around with my palps before seeing anyone who resembles a medical professional. This despite the receptionist's suggestion that it would be 'about 40 minutes'. I wasn't having that. My only memories of being in an A & E department are of endless waiting, with around one person being called in to see someone every hour or so, or so it seemed. The receptionist was wrong, but only in as far as it didn't take as long as 40 minutes for my name to be called. I was ushered into a small room where I told my story so far, and then was taken down a corridor into one of the examination rooms. There was some waiting at that point but nothing on the scale I was expecting. That would come later, but for now it wasn't long before a young man came in asking more questions and informing me that I would need some further tests. What they call 'obs'. Observation or something. Basically what they mean is another blood test, a blood pressure reading and an ECG. Unlike earlier in the day the blood test was particularly difficult. The young medic, apart from looking like a villain in 24, was the first of several cack-handed medical staff who had an inability to find a worthy vein in either of my arms and so just settled on a strategy of butchering me. That's not racist by the way, the 24 thing. If it is then the makers of 24 are racist. Regardless, our friend stabbed me three or four times before he was happy that he had taken a good enough blood sample.

Of course the other thing about this particular Monday was that Saints were playing at home to Wigan that evening. Being off sick and feeling decidedly off colour I had already resigned myself to the fact that I would not be able to go to Langtree Park as I would have normally. But I had thought, before the call from the doctor this afternoon, that I would be able to continue my convalescence in front of the television watching the game. I didn't really expect the win that eventually materialised but that wasn't the point. It was just about seeing the game. But that didn't happen. What happened instead was that I was hooked up to a drip for the next two hours and had various forms of fluid pumped into me in an attempt to lower my potassium levels I supposed. Though it was mostly painless one of the fluids, a type of glucoze or some such, caused my arm to feel a little dead when it was entering my system. It felt like I had been punched in the arm repeatedly. It got a little too uncomfortable at which point the nurse came around again, messed with a few wires and syringes and helped it ease slightly but not quite satisfactorily. It would take 15 minutes for all of the fluid to drain into me and so I just had to put up with it. All the while trying to find the best position in which to ease the heart palpitations.

At the end of this I had expected to be able to go home. Not so. I was then transferred to another room. An observation ward. Not quite a real ward, although I got a bed, but not quite an examination room either. There we waited, and waited, and waited. All this time I had been thinking that it was the people in A & E who made you wait when in fact they had nothing on the people in the observations wards. We had been told that I would need to speak to a doctor before I could be discharged. The trouble was that there weren't many of them about and they were still busy wandering from patient to patient handing out their daily titbits of bad news. I was getting very stressed. I had not stayed in hospital since I was about seven years old, and that as I remember had been some laughable attempt to 'straighten my legs' or something. What 30 years of avoiding hospitals while watching your peers pass away in sizeable numbers does is cause a phobia. At this point, I wasn't staying in hospital unless my life was at genuine risk, and not just because I was missing the game.

Finally the doctor turned up. I can't remember her name but she was very nice. As surprised as I was by that, I wasn't surprised when she didn't give me the answer I was looking for. She told me that she thought it would be best if I stayed in for the night so they could monitor me. My potassium had lowered (after yet another blood test) but they still wanted to take a longer look at me. I was adamant that I was not staying but she said that they would need to see further evidence that my potassium was continuing to decrease to be comfortable with discharging me. That would mean another blood test and another couple of hours waiting around for the results. It was already after 10.30 in the evening by this time. There was one more thing she could do, she said. She could take a blood gases test, the results of which could be obtained more quickly. Within about 10-15 minutes. That sounded good to me, though I would come to loathe blood gases tests as things progressed. For now I was quite happy to have another injection, this time in the vein that sits right on the bone between your wrist and your hand. It's lot more painful than a standard blood test, although this doctor was quite skilfull because I don't remember thinking that at the time.

As promised the doctor came back around 10 minutes later and confirmed that my potassium had dropped again. But still I was not being discharged. That was because she also told me that they had found something called acidosis as a result of the blood gases test. She couldn't explain what that was, or whether it was a genuine threat, or even whether it was a new phenomenon or something I had always had given that I had never had a blood gases test before. She wanted me to stay in to explore it further, and to take a closer look at my kidneys. That meant another scan. At this point I had not had a kidney scan for six years. I was absolutely certain that they must have declined considerably in that time but I really didn't want to know. Like I said, if you feel well then just get on with it until you don't. I stuck to my guns and told the doctor that I was not staying. She brought me a form to sign to confirm that I was discharging myself against their advice and I was more than happy to do so. I felt fine apart from the palps which had eased, and which I was still sure were only there because the doctor had frightened me earlier. Having had the ECG earlier, I was confident that there could be nothing wrong with my heart because they would have mentioned it. I signed the form and we went home. Not in time for the match and I was too tired to watch the repeat that night. I would watch it in the morning.

But my troubles were not over. Not by a long way.

Tuesday, 9 July 2013

Portugal - Part 3

Have you even read parts 1 and 2? I only ask because different people have said different things to me about each one and it seems that some of you have read one and some of you have read another and some of you have read both. I don't want to waste your time by forcing you to go over old ground or anything, I just think some of this crap might make more sense to you if you have read each of the previous two installments.

On Sunday morning a man stole our seat at the breakfast table. There were no recriminations, no whailing or gnashing of teeth as they say, it just happened and nothing was said. We'd got up at around 8 in order to get down to the restaurant for around 9. We had plans to visit the Tourist Information Centre and then leave ourselves enough time to do whatever came off the back of that. Which was nothing, but more on that later.

For now there we are in the restaurant, trying to find a free table. It's very busy so we end up somewhere near the back, but it's a table for two with not too many other seats close by so it seems like a suitable enough place. I pull the chair out of the way. I could transfer on to it from my wheelchair but I am a lazy bugger at the best of times and I didn't feel much like transferring into and out of my wheelchair every time I wanted to get up for another course, or a brew or a glass of juice or whatever. Besides, I'm already aware of the possibility that someone might steal our place if we leave nothing there to indicate that it is taken. So I move the chair and we go off to the breakfast buffet.

We only grab a bowl of cereal for now but this takes long enough in the crowds. It's very busy. We get back to our table a few minutes later to find a man sat there with a plate in front of him, about to tuck in to his breakfast. He has put the chair which I moved back at the table and is sitting on it. Clearly he has not given any thought to why it had been moved. Now, he just looks at me like a frightened deer looks up from his grazing when he hears a suspicious noise, and then goes back to his bacon and eggs. We find another table and resolve that moving a chair away is not going to be enough in future. We'll have to get our juice first and place that on the table before we go off to find our food. If that doesn't work there is always my hat, but I'm worried about it getting stolen also. It's every man for himself in this place.

This is the bit where you might need to have some knowledge of what is in the first two pieces in this surprisingly elongated series. The first thing we have to do after breakfast is get the room situation sorted out. We had been promised an opportunity to look at a room with an ocean view (which we had booked and paid for, but not got on account of some access concerns) and then decide for ourselves whether to stick or twist, as it were. However, yet more light years pass by in the reception queue before we are told that there is not a room available to view just yet but there will be by 11.00 if we would like to come back then.

We leave in search of the Tourist Information Centre. Which does not exist. We have only walked a short distance and made a couple of left turns before we find a map mounted on a small billboard. It has every single place of interest in Vilamoura marked on it. Supermarkets, mini-golf, car-parks, the beach, the marina. Everything. If there is a Tourist Information Centre it will be on this map. We walk on a little longer and pop into a shop which is advertising excursions. Glancing quickly around at what's on offer we ask about the possible whereabouts of the Tourist Information Centre and are told that it is 'in the next city'. The lady, who to be fair has better English than I have Portuguese, does not however seem to have the required vocabularly to expand on where the next city might be. Lisbon? Porto? Braga? Weston Supermare? Copenhagen? We don't know and it scarcely matters because we are likely not getting there today anyway. There is no time to go to the next city, wherever it is, before we have to get back to the hotel at the agreed time to finally sort out which room we will be spending the next six nights in.

Just after 11.00 we return to the hotel, do the queue dance (not a lot of movement but a very regular, slow tempo), and are eventually given the key to room 234. Easy to remember, not so easy to live in. As we had suspected (and so to be fair had the receptionist but that wasn't our beef with him) it has a very narrow bathroom doorway. Staying here would mean jumping out of my chair every time I wanted to pay a visit, and placing another chair in there for me to climb on in order to use the mirror to wash, brush my teeth or shave. I'm willing to give it a crack if the ocean view is that important but Emma won't hear of it. She's not happy about it but she's also insisting that we are better off where we are in the junior suite. It's hard to disgree. So we stay put, hand back the keys to 234 and pay for another six night's key rental for the safe deposit box in room 126. Another €15.

In the absence of any tourist information we go back out on to the marina to look for some other entertainment. After a long, long but highly pleasant stroll we happen across a row of stalls selling sea cruises from the marina. A greying man who speaks reasonable English if a little too quietly and creepily hands us some leaflets. We pore through them quickly and decide we might like something a bit shorter than the three hours we endured in Tenerife. The memory is still vivid of all those people vomiting into their sick bags on the choppy seas that day. I'm not normally sea sick, but after three hours of looking at other people go green and baulk you can't help but feel a little queasy yourself.

In the literature we find a two hour cruise called the Sunset Cruise. It sails in the later part of the evening, meaning it might offer a little respite from the searing heat, but the key thing is that it is only two hours in length. We think we can cope with that amount of time without being sick. Hell, we might even enjoy it. We ask the greying, quiet man about it but he informs us that the Sunset Cruise won't be sailing. Furthermore it never sails because there is never enough interest in it. He needs at least six people to make a booking to make it worth his while, he explains, but since he won't take any names or accept any money for it it is going to be incredibly difficult to reach that particular target. So in effect what he is saying is that it is a non-cruise. A mythical cruise like something out of a Sinbad movie. It's Jason And The Fecking Argonauts. Do we get a Golden Fleece as a free gift just for enquiring? No. Not even a free Parker pen. We get to make another choice or bugger off. After some more deliberation we opt for the three-hour cruise which looks as though it might provoke the least vomiting. It sails at 4.00 this afternoon and we are to return here to the marina at 3.45 when he will tell us where the boat is. As if it is a game show with clues or something. Where's Anneka Fucking Rice?

When we get back there the secret of where the boat sails from is staggeringly underwhelming. He tells us to go to the end of the marina (some 30 yards from where we are currently situated) and wait in a raised area in the shade where we will sea the boat come in. More waiting then, but mercifully the boat is on time. It is a catamaran but, having been assured by our friend that it is fully accessible we discover that this is only really a half-truth. Three-quarters, maybe. There are ramps down from the marina to where the boats are all docked but as we approach our catamaran I turn left towards it and discover a large ramp leading to it. It's a ramp, so that should be fine right? Wrong. It is a ramp with little raised grooves on each side of it, the reason for which is a mystery to me. I have to be physically lifted over these and then over the slight gap between the 'ramp' and the boat. So it's accessible if you don't mind being lifted on in your chair by two burly Portuguese men who don't speak much English. I don't, but some people might.

The cruise itself is enjoyable enough but our prediction that three hours might be a little overdoing it is not far off the mark. An hour or so in the boat stops near the rock formations and the caves at which point you can, if you are able, get off the boat and on to a small dinghy which takes you into the caves for a closer look. Emma changes her mind about whether to do this at least twice but ends up having a go anyway. She can't drink the sickly white wine they have offered us (it's free, at least) so she's sober enough to be able to step down on to the dinghy. I remember thinking that everyone else was being helped with their life jackets as they prepared to get on to the dinghy, but Emma and I seemed to be invisible. I'm pretty sure this is the curse of one who spends too much time with the likes of me. I have a level of invisibility at times that Harry Potter's cloak could not help you match. Anyway the man ignores her but she manages to sort out the life jacket herself and off they go. A small boy has a life jacket on but finally decides that he won't get in the dinghy. His parents try to coax him in and he screams the proverbial blue murder. In the end his mum goes alone while his dad waits with him. While they are away I finish Emma's wine while some of the people for whom there was no room in the dinghy (including the little boy and his dad) dive into the water for a bit of a swim. They're making two trips so they will get their turn. There's an acoustic version of Eye Of The Tiger playing on board which I quite like, but can't for the life of me fathom out why anyone would bother to have found it. It seems painfully obscure but no doubt it is on one of the many cash-cow Rocky Soundtrack albums that have been churned out down the years.

The cruise back to the marina is long and I start to feel a bit green towards the end. By the time I am hoisted off again by the burly men I am pleased to be back on land. We're off out for our first proper evening meal of the holiday this evening. Since we are so fond of Nandos, we have chosen to sample some of the chicken piri piri on offer at one of the many restaurants for which we were handed leaflets on our travels yesterday. It doesn't turn out to be quite like Nandos.......