Dealing with the NHS, dealing with the monster

A small addendum. This should be compelling stuff but you might not be compelled. Just know in advance that it's an important story about my parents who I can't thank enough. As I type this I am at their house. Things are hard but it is for everyone.
I want to add in my favourite picture of my favourite carer (amongst a few) Marge taken in Summer 2017. This is what she wrote about this book/blog. at the end of this there is also a youtube link to the 'too long' speech I sort of bumbled my way through at my 40th. You get the idea.
"For anyone facing a massive struggle in their life, this ‘read’ is a must. It tells the story of a young life devastated and the hard fought for ‘acceptance’ needed to find a way forward. It took you years my dear friend, Dom Pardeybut you are back in the land of the living. Well written."

  

THE POINT - from book to blog

Like dealing with any monster, it’s ok to be afraid.

It’s not rocket science. This was going to be a book but another 40k words with a single finger might have been a lot for the writer with one finger. Readers would have struggled more too, now it’s just a long blog post, there's a cliché for our times! I don’t know how the ‘diving bell and butterfly’ man did it?  Instead of a short book it’s just a long blog post but I’m pretty sure this is a better message to the world. I’m sure there are overlaps with the blog and I hope inconsistencies are at a minimum, none of this has been copied and pasted, this is all out of my head. It is honest. I am a little ashamed of some of my blogs. It’s what anger did to me. I hope this is more level headed. It can be read standing alone from the blog, there’s no swearing because I think it is aggressive on the page. Used creatively in conversation it can be funny. Otherwise, I’ve let it go. It may or may not be coincidence that a lot of my friends have young children.

 Being in the proximity of an NHS hospital is probably why you’re reading this or you’re one of my mates, you may not think it, but it is the absolute best place you can be if you have a health issue (probably the being near a hospital bit), otherwise this is just a good story with a few decent thoughts. I won’t pretend to have the answers. They have pulled off miracles getting as far as A&E. Be aware, the Health Service is still a monster. A benign monster, rather than one hiding behind the door waiting to scare you. Always have this in mind, the NHS is the best thing in the world, just watch the documentaries. It is certainly the greatest thing in Britain and we spend £2Billion a week on it, it’s important enough to be expressed in per week terms, the universal language for... What, how much? – you’re probably not thinking ‘worth every penny’  as you and your loved one seem to wait forever only to find things get cancelled, but this is the mindset you have to embrace when you get in the system. They know their apples. It’s just a bunch of people, trying their best.

 I suppose my qualifications for writing this are that I spent over three years in hospital between December 2005 and Spring 2009 (my memory of exact timings is very poor) after a blood vessel weakness that I knew nothing about (an AVM that I was born with apparently, haemorrhaged), net result, a massive life-changing stroke (I’ll never walk or feel normal again) which I was lucky to survive at the age of 28, I’m now 41... The short answer is to hope against hope you’ve got a friend, partner or parent or you are that person who unconditionally loves someone and you trust them – because this is more for them to read. Treat this as a project, paid in love. I’m not some sort of hippy by the way, I used to be a project manager, so pretty far from a hippy. Be ready for this person to be the most important person in your life, they probably already are, but physically caring for someone is exhausting and requires patience. People drop off the radar over the age of 30 because they have their own lives, families and problems. Realise that doing anything has always been hard for people even if they don’t have disabilities. If you were used to making a mobile phone call and people just dropping what they were doing, forget that. Don’t, for goodness sake, lament this in front of them. People prioritise and sadly but correctly, you’re not very high up that list. So this is as much about acceptance as anything else. If you’re remotely impatient, become used to sitting in traffic jams not getting lane envy, start thinking ‘this’ll get there eventually’. It eventually will. This isn’t just another self-help book full of half baked platitudes and sugary truisms, because the idea of me writing a book on ‘staying positive’ is a bit laughable, I have changed a lot but not that much, I can probably be described as a bit cynical! Nor is it an ‘NHS for dummies’, the director of the NHS probably couldn’t even write one of those, poor, but brilliant fella that he must be, he’s called Simon Stevens by the way and he’s done it since 2014, the NHS is incidentally 70 years old in June 2018, which is an incredible thing considering how much the country’s health needs have changed in that time – when it started, the amount of TB was one of the biggest concerns. Stevens probably took the job thinking ‘I could make a real difference here’. I even saw a thing where prince of darkness Alistair Campbell (Tony Blair’s spin doctor, responsible for ‘the dodgy dossier’ (the claim that Iraq could fire nukes at us in 45 minutes)) Campbell said ‘you can do the most good in politics’ but politics and the NHS seem to be a poisoned chalice like no other. The ultimate ‘damned if you do, damned if you don’t’ jobs. I admire their idealism for taking them and I believe they want to do good. Same goes for Matt Hancock MP, the current Health Secretary who will always be ‘Matt’, my first housemate in London. His political ambitions have gone much further than anyone ever could have guessed. The fact that they somehow get on with it as the NHS gets punted around like a political football is impressive. I am absolutely not going to mention politics in this, because someone gets alienated, nor is this about meditation or Buddhism. The content is for everyone. It is just about being:

less nihilistic, yes we are insignificant in the grand scheme of things;

less misanthropic, we have to trust people;

be less selfish, we have to always be thinking of others, we are something to other people, and what we do affects others as much as ourselves;

Summed up, it is ‘plan for the future, we’ve got to!’. Any of those stances is not consistent with living.
I know I’m middle class and I have had more opportunity than most and if I was ever nihilistic, misanthropic or selfish, I’ve done my time I reckon.

Almost 100% of the (I’m sure astronomic) healthcare costs that were spent on me by the NHS are I hope going to be worth it, some days I can’t believe I’m alive to tell this, writing this is making me realise the lengths that the NHS and people have gone to, to take care of me throughout my life. Not that anyone would care to find it, I’m sure there is background dirt out there but no-one achieves anything by throwing stones at someone in a wheelchair. A massive health problem is a massive leveller. I have survived in big part due to having the most unbelievable help. The story in this bromide (or whatever it is) I hope gives a bit of hope and perspective to people who can only see an abyss. I tried writing a blog but it was too unfocused (you might notice). Too easy to talk about the latest news and stray into dangerous ground, people have said I sounded angry, I probably was but after 13 years I’ve got some perspective, all I want to do now is to be helpful. The key is to become more accepting (It’s in danger of being a theme). I saw a thing calling it ‘micro-ambitious’. By all means be ambitious but be realistic. We’d all love to change the world. Just accept that there is too much luck involved. Now get back to being micro-ambitious about the Health Service.

 Everything you do is because someone else has donated their most valuable commodity, their time.

The thing I try to remember, even if I am often a pessimist, is to resist the temptation to slip into pessimism when there are people around. I’m still not good at it!

 In Britain, we seem to be natural pessimists. All those bloody insurance adverts telling us to ‘plan for the worst’. I try and ‘plan for the worst, hope for better’. English Optimism!

I know that sounds like dishonesty. I’m sure that could be logically argued. What I think it is, is pragmatism, but tinged with wanting to live, not just survive. I’ve argued till I’m blue in the face that you should just tell people you are feeling terrible but there seems to be an epidemic of people who excuse what they say:

 ‘the trouble is I’ve got no filter’

or

‘it’s only words’

or

‘it’s just an opinion’

That makes these people sociopaths! but you need people so be nice, whilst telling the truth. That sounds obvious and stupid but when people decide not to make the effort anymore or it feels like they’re lying to you, it is the worst feeling in the world.  I know it sounds silly in a book giving advice but try never to sound ‘teachy’ (or like you’re lecturing) – people hate it, for every nice story about a fondly remembered  school teacher or nice memory, there seem to be a hundred recalling the bastards who bullied or something people hated.  School was bittersweet for all of us. We met friends but we also met enemies. Respect to teachers is how I try and leave it. The moral of that story is never be sounding like you know better than anyone, people don’t like it. Default to diplomacy, tact and respect even when people are obviously being horrible.

I see the following bit of knowledge everywhere these days – be it on telly, social media or the internet:

‘Make a contribution’

well, I agree with it, but, difficult, given any talent I had to do that appears to have gone. I don’t make a habit of agreeing with Noel Gallagher, even if he might be a musical genius whether you like Oasis or not. He said ‘people produce art if they can’ I don’t pretend this is art. I say it till I’m blue in the face, again, that doing anything takes energy, it does too, and that seems to be the domain of the young, healthy and energetic – remind twentysomethings that it is the best stage of life, even if it is a selfish stage. Selflessness, the subtle art of just doing things for other people without expecting anything, or without anyone knowing seem to have vanished in a social media cloud.  People have said ‘at least you enjoyed yourself before your stroke’. There were some great bits and I am making new great bits now (it is obviously a bit tinged)! Work for everyone is a necessary evil that just has to be done, lucky you if you can coincide earning money with having a laugh, doing something you love, looking forward to going to work. I’ve always said that the key to a person is having a good work-ethic: That might be the secret to life I think? Someone once told me that ‘writing was an all consuming energy’, all I can say to that is ‘oh dear’. However, if this helps one person, it will be a good start, and it is the correct direction of travel. There, English optimism!

Subheading about Social Media – For what it’s worth

I know posting this on social media makes it sound weird. Social Media has poisoned the world in my opinion, just look at the tweets from the US president. Social Media should exist for sharing funny things and staying in touch with people. It should be for nice things, that’s pretty much it. They say they’re ‘making the world a better place’. I dispute that sometimes.

 ‘Ghost’ (ie ignore) anything unpleasant or anything that may start a row. Sometimes it’s worth making a mental list of what to Ignore, it’s like approaching the internet in exactly the opposite direction! Online spats have no winners. I have all too often made the foolish mistake of not ignoring things that irritate me and I’ve been provocative, I’ve probably done it in this.

On the strength of that, you could argue that ignoring everything is the way forward! That is utter stupidity ‘if you stay in the middle of the road, you get run down’ or words to that effect, or that worst of things, accused of hypocrisy. Just don’t do it! By all means, do what you want, just don’t do that!

Social Media seems to have become a huge passive aggressive playground and somewhere ‘liking’ something then forgetting about it forever is the norm. When you can’t run or are bad at dealing with online bullies as you can’t argue fast enough or read and type quickly enough, find your real physical actual friends online and stay in touch with them. Do not make proclamations about how bad anything is and be careful taking the piss out of people. It is often funny but people gradually seem to bruise no matter how many times they reply with a lol. Banter suffers from the law of diminishing returns. Perhaps the odd picture of you smiling in hospital or elsewhere reminding people you’re alive is all that’s needed. Being able to stay in touch this way is Golden. I used not to trust people who could bother but didn’t.

 I got over that and now realise that there are some people out there who don’t need another resource to contact people, they often have busy enough lives, and some people are best left to obscurity. It is my major method of communicating these days. I am lost without email or facebook and bulletin boards in the early days, but I hope anyone who uses them knows how humans are being manipulated like laboratory animals by facebook. The nice aspect of facebook is the talking to our friends bit and helping remember, in my opinion for what it’s worth.

Subheading about my parents – For what it’s worth

 I wasn’t really talking about my parents enough and they can’t be left in the corner (baby they can’t). I was pretty lucky. They were those people I utterly trusted. They loved me unconditionally even if I was a vegetable at the time (They were selfless). It must have been awful for them seeing their youngest child in that state. It was unbelievable. Coming in the ambulance and visiting me in hospital on most days (from their home in south England (a round trip of something like 100 miles until a friend put them up). Plus my old man writing an email bulletin (often daily) about what was going on in hospital. No-one asked him to do it, he just did it. He must have taken what pictures are here. Dad is one of those English Optimists who has spent his life planning for the future, always working, saving for people like me when he could have spent it on himself, paying tax, obeying laws and paying his Insurance, he didn’t inherit anything. His cancer scare at the time of writing (Late July 2018) is terrifying, not least for him.

I often say of mum that ‘if she were famous she’d be a national treasure’. She is one of those people who is all about staying busy. Despite being in her late seventies, people would never believe she was that age. The garden at home is far too big and beautiful

to believe that a septuagenarian is responsible for it.

I think the two of them balance each other. Dad is the practical one and Mum is the gregarious one. Between the pair of them, they are the classic English optimists which is what you need from your advocate in hospital. As an aside, even though I wished no-one had to experience any of this I take a bit of solace in thinking I have created a project for them to stave off any boredom in their retirement, this has also brought the family together, cliché that it is. I also like to think that when their house was struck by lightning and burnt down in late summer 2006, They rebuilt the house (it was insured thank goodness) and the new house is much better. It even has wheelchair access now. It is an unbelievable story and took special people to get through it.  Wow, just wow!

because they were visiting me, it might have stopped them being there, to see their dream house burn to the ground and maybe go with it. They were left in the clothes they were standing in. Dad also had a Pulmonary embolism. Me being in hospital having helped is a massive stretch, but you draw what slender mercies you can. Life is full of ironies, don’t we love/hate them?

Chapter 1 – Rushed to hospital. Get the word out!

The last thing I remember at about 1am on Christmas day 2005 was thinking ‘what a lot of people’, I was drunk as a skunk, as was everyone – I went to the loo. ‘What a lot of people, this is Christmas Eve isn’t it?’ I thought to myself. The last ever pre-stroke thought I ever had. The next thing, an instantaneous thing, was waking up in this white place being unable to move, unable to speak and feeling a bit like I’d had an accident. I often console myself and other people for what it’s worth that during a coma there is no suffering, no pain, no dreaming, no boredom, no struggling to wake. It is like a general anaesthetic, an imperceptible switch. Like sleep, without the dreaming. If there is a way to go this might be it! However, any relative or friend looking on at an unresponsive loved one hooked up to a bunch of machines for weeks in a hospital must be the worst thing, just waiting for news that the hospital staff don’t know! ‘He’s really fighting’ or ‘he’s really strong’ sound good but he or she really doesn’t know, expectations are managed and that old chestnut ‘stay positive’ will make the awful situation less awful, for your visitors. Don’t forget, you’re as important as the patient now. I think physical proximity of friends and family does help though. Even if I remember nothing, everything I have ever heard points toward a feeling of comfort helping the person in the coma. It’ll help you feel less bad too.

Apparently a friend of mine’s son, an apprentice Electrician at the hospital snuck in to see me, but I was catatonic and unresponsive. Hearing that a few years later was a brilliant thing. I knew nothing about it at the time. But the fact that he did it at all is the most wonderful thing. My point is, big positive surprises do amazing things for the body, the story I like is that my dad went to visit his lifelong best friend in hospital in France. Apparently Stewart (he’s the bloke in the kilt)

was dying. Dad showed up out of the blue. Stewart got much better. Stewart is fine now. I can’t prove anything, but it sounds like dad saved a life there. Apparently the body responds to hope.

If you’ve got a friend in hospital:  Get the word out, people answer that call to arms.

My waking up in the Matrix (a 90s movie that if you think about it, is the Terminator without a Terminator). This ‘waking’ moment happened three weeks after Christmas eve. Mum’s head came into view and said ‘you’ve had a bleed, it’s mid January 2006, you’ve been in a coma for three weeks. If I think about it now I thought ‘I really ruined Christmas’ and ‘how did anyone save me, surely no-one was at work?’ I am naive. The A&E staff apparently love the question ‘When are your opening hours?’ This is where praise of the NHS will be at it’s most paean. Thinking about it is the most humbling thing I have ever committed to this medium. It already is a 7 day service. I hate to think what I put the Ambulance Crew, A&E and Intensive Care staff through, let alone my parents, friends, family, then girlfriend. When I woke up, the mind races ‘I’ve caused all this trouble, I’ve really messed up, what have I done, I need to get back to work!’. Rest assured the patient won’t just wake up and start giving people jip. Considering I was 6’3” and about 16 stone of unresponsive lump, this is miracle territory. It makes me realise that these people really are brilliant! They got me down a steep flight of steps and only dislocated my left shoulder apparently (they call it sub-lux), apparently I was having a seizure, and then a fit. They got me into Charing Cross Hospital in Hammersmith hyper acute stroke unit by another miracle (10mins drive from my uncle’s), scanned me in an MRI machine somehow, gave me a craniotomy (ie drilled a hole in my head to release the build up in pressure inside my skull which is the #1 killer from bleeds on the brain, they aspirated my chest when I developed pneumonia (paralysis means you can’t clear fluid/mucus from your lungs automatically when you are horizontal so they fill with fluid and you drown, I’m not sure what aspiration entails but it sounds not straightforward, they inserted a feeding tube through my nose down my windpipe somehow into my stomach which apparently I kept unknowingly pulling out with my functioning right hand. That must have been grim. They catheterised me. Grim. There are two things that stuck with me from this horror story that I learned years later. 1. Apparently it was a good job I wasn’t conscious. 2. How amazing is the NHS? The point here is that following something so serious my chances of survival were miniscule. Never indulge in ‘What if’s?’ These people are the experts. Hysteria helps no-one.

 It’s humbling stuff. I don’t obviously know any of this. It is pieced together from what my parents tell me. I was in Charing Cross hospital for seven weeks. When I woke up after three weeks, I didn’t really know much. They must have had to hoist me in and out of a wheelchair and feed me through a tube for the best part of the month after I woke up. The incontinence must have been awful and difficult for anyone to bear. Apparently, they put me through physiotherapy, occupational therapy and they gave me speech therapy. It is surprising what you can get accomplished with a thumbs up, a thumbs down and giving someone the middle finger, and a good go at a smile. The old cliché about ‘it taking more muscles to frown than smile’ might be factually true, I don’t know, but in practice it’s nonsense – they obviously forgot gravity! It’s not that easy but do try, it makes such a difference to the people around you! I remember the tilt table in Physiotherapy,

the sheer weight of my head when I was strapped into the vertical position. With no muscle use in the neck I couldn’t hold my head up. That is the focus of early physiotherapy if learning to walk again straight away is not an obvious option. If you can, get up on your feet as soon as you can because it’ll soon become pretty obvious that walking with any sort of brain injury is very difficult, your body feels too heavy to be in that position and your legs feel too weak to support you, they still do 13 years on despite loads of physiotherapy, pretty much three times a week – even the skinniest people will think this and feel in danger of falling. My mum once said to me ‘when little kids are learning to walk they get up when they fall over, would that I could get up! I love mum, but she misses the point sometimes! Same with Dad. He once told me off ‘can’t you be less tired?’

 You’ll absolutely need some grippy slip-on slippers, hospital floors are that shiny lino, plus in bed, tissues and wet-wipes are wonderful to have so visitors can clean the dribble off your mouth as dreadful as that sounds. The best physio advice I ever got given was: ‘if you’re sitting down with your legs in front of you with the soles of your feet on the ground it’s virtually impossible to fall forward’. I’ll probably get sued now.

In speech therapy it took me six weeks to learn to speak again, you soon learn that your voice is formed by the control you have over certain muscles. Another incentive is that when you can speak again, you can eat and drink again. My advice here is to just let them do their thing, because this treatment is like winning the lottery in monetary terms, do as much treatment as they offer you even though all you want to do is sleep. Despite this, gently ask for more. Charing Cross hospital was probably the only hospital in the world that could have saved my life because they had a new hyper-acute stroke unit so remember, most of this is luck. It is the little gains you make at the Edges that made the difference. That’s the really hard work for the patient while everyone is working hard keeping you alive! The hospital multi-disciplinary-team (someone representing the medical staff, the therapists, the nursing staff and the particular hospital administration (that particular NHS trust) then negotiate on your behalf with your Primary Care Trust (PCT), in my case Southwark (where I was a resident and a taxpayer), to fund all that and find a rehab bed which amazingly they did, at the Frank Cooksey Rehab Unit c/o  the Maudsley Psychiatric Hospital, Kings College in Camberwell, South London). It took a few weeks but in that time somehow my parents put the word out and even if I couldn’t speak, visits from anyone felt like oxygen. In that situation, you feel uniquely vulnerable and seeing anyone familiar feels great, in my case I was fortunate having my girlfriend, my parents, friends or family visit me most days on the 10^th Floor High Dependency Unit in Charing Cross hospital. The people you develop a rapport with are the staff.

Obviously, the other patients are people you empathise with but the staff are really important to bond with, I suppose that is obvious. The staff are the ones who make you feel safe. If you are expecting decent treatment from anyone leave any of your stereotypes and imagined prejudices aside, and that goes for your visitors too. This should be self-evident. The Health Service is the most multi-cultural organisation in the world. I say this because I saw Healthcare Assistants turn. These people are only human. It is a tough job and unhappy people are difficult to deal with. People say hurtful things. When you can’t speak, try and be cheerful and smiley. If you complain, national pastime that it can be, however you do it, do it sparingly, you don’t want to be the ‘boy who cried wolf’, hospital staff are wonderful people but they close ranks quicker than policemen. If there is one thing people get from this, it is to let things go. This is nothing like reverence or deference. I have tried to let things go and writing about it probably isn’t helping, if anything it is too cathartic, but feeling terrible at anyone actually having to do anything for you is just something that is part of being human. It is the loss of dignity in not being able to do things for yourself. On the one hand it seems to make people feel great to help others, on the other it repels people. It might have something to do with Englishness or the concept of dignity, I don’t know. They say guilt solves nothing. I think it is important to have it but to be able to let it go is more important for getting on with life. It’ll certainly help you be less tearful and pathetic. I’m not a psychologist. Or a doctor!

This is taking the NHS for granted, ‘the safety net of the safety net’. I hate reducing things to money, but we all do it! We all know what we can’t afford. That is: Anything, especially thousands of pounds worth of anything, 10s, 100s of thousands – the magnitude of it staggers me and this is a service this country has. Amazed? We should be. I am saddened, no horrified, that Charing Cross Hospital in Hammersmith is being closed. They probably haven’t saved as many lives as Penicillin but they saved my life and to me, it’s worth something intangible. I don’t know what’s happening at Charing Cross now but if this book says anything is that genuine gratitude makes the world go round.

Chapter 2 – Frank Cooksey Rehab Unit, Kings College Hospital, Camberwell

I spent at least seven weeks in Charing Cross Hospital which is a measure of it being  serious (remember £1000s of pounds to the NHS, perhaps per day) Bearing in mind I could barely speak this is the crux of what I’m saying, it is about you pretty much being unaware and being ok with other people taking massive decisions that you’d normally take yourself. It’s not comfortable but you have to trust someone. I know not everyone can trust their parents like I can. My mum and dad may have been in their seventies but you cannot put a price on what they did for me. Every time I call them up on it, they just say ‘that’s what parents are supposed to do’. It is a refreshingly old fashioned attitude in a world where I see people prepared to walk over broken glass for their small children but older one’s are forgotten. Thank goodness we never forgot each other.

Charing Cross hospital handed me over to the Frank Cooksey in February 2006 with a preliminary diagnosis of a haemorrhaging sub arachnoid AVM having caused the stroke. An AVM has been explained to me as a blood vessel weakness, a structure where an artery goes straight into a vein. Usually, the high pressure in the artery gets diffused through capillaries before going into the veins which have a much more delicate structure than the thick walled elastic arteries. It was basically a short circuit and blood out of blood vessels kills tissue, it makes me realise how fragile we are. As the advert says stroke is like a fire in the Brain. AVMs occur all over the body and people don’t know they have them most of the time, but there are big problems if they bleed and apparently the older or more stressed you are the more chance there is that they leak. It’s like having a ticking time-bomb with a broken clock apparently. Apparently they’re a troublesome structure anywhere in the body and in the brain can cause epilepsy. Apparently, there’s a lot of that word ‘apparently’ in neuroscience and in medicine in general, it’s all probabilities, like quantum physics apparently.

 The only reason I survived at all, was because I was young and relatively healthy, I had quit smoking, and been going to the gym for the best part of a year, I console myself when they said ‘this could have happened in your 40s, for starters there is no way you would have survived, but you could have had a wife and kids’ – it is cold comfort, but nonetheless, some comfort.

This was only a preliminary diagnosis from a scan they had given me in the 7 weeks in Charing Cross. I don’t remember this but photo’s prove it, they had once put me in a transport ambulance to get me scanned at the National Neuroscience hospital near Great Ormond Street

(remember this must have cost the NHS thousands, feel like you’ve won the lottery just to still be here). I don’t even know, but I’d guess this trip was part of the diagnosis. Kings College needed more information so they gave me an angiogram, an unbelievable procedure where they float a microscopic tube up your Carotid artery into your brain, squeeze in some contrast dye and take X-rays all the while being able to see your blood vessel layout and control the microtube in your body and head via a live x-ray camera. That is incredible. I grew up in an era when Innerspace was considered to be a blockbuster movie and the science in that is nonsense.
Following this angiogram there were consequences:

1.      The Frank Cooksey neuroscientists could give me a final and accurate diagnosis, they could tell the size and exact location of the AVM, therefore it’s severity and  make plans for getting rid of it.

2.      The 2^nd consequence of this angiogram was I got ‘superbug’ MRSA in the puncture wound where they had inserted those Microscopic tubes.

You may remember the hospital ‘superbug’ scandal of 2006, where they were describing hospitals as ‘filthy’ in the newspapers. Nonsense, hospitals are very clean. Superbugs are bacteria that have always been there, they’re just getting more resistant to basic antibiotics which are being used too much. I even heard a story where they were using antibiotics rather than  encouraging hygiene in some industry or other.

People who end up more ill, or worse, dead as a result of superbugs are the old, frail or very unlucky. Superbugs are horrible things but extreme cleanliness in hospitals is the only way to deal with them. Blaming hospitals for being ‘filthy’ is just a petty and unconstructive, fundamentally lazy insult to hospital staff. A starting point to combat them was an ‘ultracleanliness’ initiative. Remember the appearance of antibacterial gel everywhere? It’s probably been around for years. I just never realised, I was too busy wading through filth.

To get rid of the  MRSA they gave me a ridiculously strong antibiotic called Bankomycin. When they gave me this intravenously, they must have done it too fast (or so they said) because I got a condition called ‘red man syndrome’ which I can only describe as feeling like being under attack from inside your body, like little axemen are pummelling the insides of your blood vessels. You go bright red too. It’s not great and you think ‘I’m going to die here’. I’d go so far as to say it was the worst thing I’ve ever been conscious for in my life and there was worse to come. It’s hard to think thousands of pounds but that is what it must have been.

Speaking of which, a few days later, a man who spoke like an airline pilot calling himself an ‘interventional neuroradioligist’ came to talk to me about giving me an angiogram to get rid of my AVM. Ie a brain surgeon by a different name. This time, they were going to give me a general anaesthetic. I was nervous but pleased I was going to be out for this. He did warn me ‘you may not survive this’. My advice to anyone is just ‘Well, if you die now, you die now’. It must be hideous for your friends and family, but just let the patient quietly contemplate ‘what will be’. Nothing to be done. Again, this must have been thousands of pounds. Someone who I would never imagine getting upset did so just before this procedure and I still can’t believe it over a decade later.

So, I didn’t die, but after the procedure, the surgeon told me, he’d got the microtube into the AVM but couldn’t proceed with the cauterising chemical because he couldn’t be sure it would just destroy the AVM, it could have destroyed healthy bloodvessels. All that for nothing.

Around about this time, I had one of the most important visits in my entire life. I had started work in July 2004 at John Lewis department stores for Childrenswear, Toys and Crafts in buying in Head Office. I’m not just saying this, but John Lewis really is a company for it’s workers, my friend Vicky took a job offer from them after the way they treated me. I was a bit of a numbers monkey for them but the best thing about the job was getting to run a big team in merchandising (a function of buying), even though I had no experience of merchandising, I was good with numbers and people and working hard. In my humble opinion, managing people teaches you a sense of responsibility and purpose that only parents truly have, to this day, I still think it was the making of me. Anyway, my point was that one day the Merchandising director and the Chairman came to see me. To this day, I still can’t work out how they found the time. I put away my middle finger  (my speaking was still rubbish!) and made lots of noises about ‘staying positive’. It was like being visited by two rock stars. My bosses secretary also organised a ‘sample sale’ that raised several thousand pounds for the Frank Cooksey ward.

Unbelievable.

CHAPTER3 – Putney Royal Hospital for Neurodisability, Drapers Ward

You soon learn when you’re in hospital that any sort of change is good... So pretty much from the time you get somewhere in hospital, any sort of move is good. For your visitors sake, you go to where the parking is cheapest and their journey is easiest, you only realise years later, from the patients point of view, it’s actually where the patient trusts the staff. I would never have left Frank Cooksey knowing what I know now although the parking at Cooksey was terrible, they weren’t great at haircuts too! I think it’s in a totally different place now.

I had heard about this rehab charity hospital in Putney that is on the list of rehab hospitals that the NHS fund, amazingly at one point it was called ‘The Hospital for the Incurables’ (years earlier) –can you imagine how depressing that would be?. This must have been in Summer 2006 about asking my NHS funding authority (Southwark Young Person’s disability fund) if I could get my rehab moved. I think at this point, it’s right to point out that people who’ve had a neurological event don’t actually realise how selfish they are being – the logistics alone, are enough to give anyone a nervous breakdown. Humility and realisation do come. Just do believe that all these people are doing their absolute best even when it doesn’t feel like it. Aside from the innate human desire to help people, it is hard to understand why people work in these places. I got moved to the Royal Hospital for Neurodisability in Putney in Autumn-ish 2006.

Change was initially good. It felt like a forward step, and it seemed like an easier place for my friends and family to get to, remember, visits are like air. I discovered a few things though. I stick by what I’ve said about the staff, sadly on Drapers ward a lot of staff were drawn from several agencies, so often, it would be different people every day, plus there was a larger pool of therapists so you’d very rarely see a familiar person and even if they share notes on patients, especially in physiotherapy, it felt like starting from scratch every time, indeed, it hardly seemed they knew anything I’d done in the Frank Cooksey – make sure it doesn’t feel like that for the Patient, otherwise it feels like any forward momentum from moving hospital is worth nothing and it’s difficult to feel like doing any therapy. Such a shame because they seemed to have great facilities and therapists bar one. In occupational therapy, where at the Frank Cooksey an OT had run the therapists so you saw them walking around and they felt part of the place, it particularly didn’t help that I couldn’t stand one particular occupational therapist that kept being put with me, I’m sure the feeling was mutual.

 My key learning from Drapers ward was nothing to do with the therapists though, it was this: Make sure you get put on a ward with patients of similar post-stroke abilities. No-one in Drapers Ward could really speak! At least in the Frank Cooksey, I had been able to talk (albeit not that well) to one or two of the other patients – we thought of ourselves as ‘inmates’. It’s important to have that camaraderie, especially if you’re unhappy, the last people you want this to rub off on are the people who have made all that effort to come and see you. The best advice I’ve ever been given is:

 ‘always be grateful’

 John Stoker (my long departed grandfather) told my old man that. I can imagine he thought he was imparting some great wisdom.

I definitely didn’t realise at the time that next bit of medical intervention was the equivalent of finding Gold. Remember how that Radiologist guy had been unable to destroy my AVM?  Well, he had referred my brainscans to some other Neuro-scientists and they had recommended Gamma – Knife surgery, a terrifying sounding procedure which though is non-invasive – I joke that it sounds a bit like the thing that made the Incredible Hulk, is absolutely not pain free! The machine is in central London (the NHS pays a Harley Street surgery for the actual procedure) but the prep work gets done in the Royal London Hospital in Whitechapel. Now bear in mind this was in 2007 in the Victorian Building before the Royal London became the modern shiny thing it is now. Back then I remember feeling oddly positive about this adventure, remember, change feels like progress, you know the expression ‘change is as good as a rest’. That is too simple.

A procedure this complex is not a rest. The overnight in the Royal London hospital mixed shared ‘Sofia’ ward felt like a sleepless night in a Crimean war hospital. The NHS wouldn’t allow it nowadays. It would be considered inhuman.

For nights like this always ask for a sleeping tablet. I know I have to take prescription sleeping pills every night these days but the quality of my life is much better for them. After a brain injury, rest and sleep are the most important things apparently.

 That said, keep medication as low as you can. I think anti-depressants work for some people but are a scandal, they must cost the NHS millions. Imagine taking a pill for a headache and them saying ‘that might do something in three weeks’.

 People say ‘but you’re tired, why do you need sleeping pills?’ I reply with either of two answers 1. It’s hard to articulate, but I’m too tired to get to sleep without them, combined with this 2. I figure there are far worse things to be addicted to. A friend of mine says ‘sounds like a crutch to me?’ That is probably true, there are far worse crutches. This is based on conversations with friends and whatever I’ve listened to. I don’t pretend I know what’s what. The best I’ve got is right here.

Back to the Royal London. I’m sure they did great work but a positive slant on this is hard: In the bowels of the hospital at some ungodly time of the morning, they wheeled my hospital bed into a room and a bloke calling himself ‘a physicist’ held out this device called a ‘stereo-static frame’ he said to me ‘we have to screw this to your skull, give you a couple of scans to get the exact location of the AVM inside your skull relative to this frame, we then have to drive you to the machine, clip your head into it, it then takes the machine several hours. This was going to be the worst day I remember, I thought to myself again. It was too. I think I screamed when they screwed the frame onto my head. It felt like my head was in a vice, a heavy one. Thousands of pounds. Really?

I didn’t find this out till years later, but the Gamma Knife procedure had not been a success and my AVM bled again in December 2011. The consequences were thankfully not life changing but after waiting months for some special glasses it pretty much made those glasses unhelpful and reminded me how important our eyesight is. I went through a month-long stint where I couldn’t raise the eyelid of my left eye and following that and two month’s  where I would often miss my mouth on the left. Thinking about it now, at least my eye re-opened.

CHAPTER 4 – Putney Royal Hospital for Neurodisability, Transitional living Unit

I spent about six months trying to persuade the powers that be at Putney (here was a huge job for my advocates, I did eventually start calling them my LSP’s (long suffering parents) in my blog, not that they had the time to read it. I was convinced the TLU was the right place for me to be. The therapy at the TLU was a lot more psychology based, when you are used to Physical Therapy being the driver of change, then this seems strange. You don’t realise it at the time but hospital is a very safe environment and you don’t realise that you need help to do everything, in particular you need to be psychologically prepared for being outside hospital. It is terrifying – no amount of people saying ‘you’re being brave’ prepares you.

CHAPTER 5 – Semi-Independent Living

When they started talking about putting me  in a home, I think it was my cousin who pointed out ‘wasn’t our great-grandfather the local builder in a London outskirt? Between my mum and her two brothers didn’t we have a few rental properties? One was vacant, and back in 2009, my brother was in charge of their maintenance as one of the many things that were part of his building roster. This is another area where I have been lucky to be alive. My brother, who I think might be a practical genius, whereas my sister is the ‘voice of reason. My brother somehow converted the house to be inhabitable in a wheelchair. It must have cost my parents a lot. Luckily my living costs are covered by a disability pension that John Lewis gave me, god, they’re amazing, an incredible thing which they didn’t have to give me. Most employers would have just washed their hands of me. Disability benefit has covered a bit, but only a little bit. My pension has meant that my parents have only had to take the initial financial hit not out of their cashflow apart from my wheelchairs, and I have lived off my pension. It is an unusual and unreal circumstance which I know will not happen for everyone. People call this ‘privilege’ or ‘entitlement’. I suppose it is if you’re throwing stones. It has been hard work for everyone and dare I say it for fear of sounding like one of those who makes their problems sound worse, it has been terrible, I have been suicidal plenty of times – it has helped my family get closer and I now appreciate better the lengths people go to. Relying on things is seen as ‘taking for granted’. I perhaps used to take my friends, family and carers for granted – I think I might have taken some people for granted, some  have drifted or have flat refused to care. It has been through sheer determination and staying in touch (ie like this) that I have maintained friendships. A friend of mine said ‘I have a nice relaxed energy about me’ Not sure what that means but it sounds nice. I like it. Because of my pension and living situation I have more than most. It’s still not much, but I think my most important thing I’ve ever learnt is to be prepared to spend it all on the people who help you survive. In practice this is my friends, my family and carers. Again, I have been lucky. I can’t afford to employ anyone, but the occasional dinner or concert is what I can afford. I’ve tried not to let this beat me. When I had the stroke, some friends set me up a crowdfunding type scheme called ‘the Dom Pardey Trust’ which bought me my first wheelchair and funds my physical therapy. It is a great thing. My physiotherapists are amongst my new best friends these days. Getting on with these torturers is so important. It maybe hard and I call it ‘torture’ but it is the most important thing I do otherwise I would get weaker and weaker and fatter and fatter. I just accept that I’ll never physically recover. I’ve learned to accept this. I remember when discussing rehabilitation goals at the Frank Cooksey in Feb 2006 ‘I want to walk out of here as if nothing has happened’. That hasn’t happened and I’m slightly annoyed they entertained my suggestion but I’ve let that go.

CHAPTER 6 – Conclusion, was this all worth it?

Well obviously not! It’s not a choice. It has taught me a lot about myself, which is why I’m writing this ten plus years on. This is too high a price for a bit of self knowledge. If it helps someone, It might have been worth it.

I think the old me would have said ‘life is ruined, I think it would be better if he had died’. In my darker moments, I sometimes think that. I met a quadraplegic lady

in hospital (I was in Putney TLU, she was in the main hospital) she has since died of heart failure only aged about 30 odd which is too young. She had once told me that when she heard she would have to go through the rest of her life on a ventilator in a wheelchair just moving her head, she had wanted to die. She was also against doing any sort of physiotherapy because the progress was imperceptible, not that I understood how she could do therapy. I have since heard miracle stories about locked in quadraplegics who are using wheelchairs, but those sorts of things are as likely as winning the lottery. I had to think fast. I could absolutely understand where she was coming from. Before this her calm gentle nature had been a real dose of perspective and inspiration, so much so, I’d introduced some of my visitors to her as an example of serenity. I’m in danger of sounding a bit Micheal Winner about this but my prescription for dealing with anyone is ‘an air of calm’ and anyone with a cool head, like Carlie, was a real inspiration. She must have been in a tough place mentally , It was over ten years ago and I still don’t understand how she did it, when I consider how emotional I got, I never once saw her get upset. I think she just accepted it. I suppose this does stop ambition in it’s tracks but properly directed ambition is about doing what you can to keep the people around you happy. You have to consciously decide you’re less important and be fine with that. That does sound a little bit like letting go of the self for about the umpteenth time and something out of a Buddhist text – but that is crossing a religious boundary. Religion or a governing philosophy seem to be about passing the buck or giving up your choicemaking and emotional freedom.

As much as the state and social media seem to have encroached on personal freedom, the more I see progress. It is the progress of rights for women and the disabled over the last century that astound me. I try and think whenever I see a dystopian series or hear about something as dystopian as the ‘Handmaids Tale or ‘The Hunger Games’. I first think, someone in a wheelchair would be the first to go, maybe they are? Then I think, liberal that I am, those are rights that will be protected as communication is too good these days to allow naked injustice. I’m sure there are umpteen examples that disagree but I don’t see the clock going backwards. It has happened in history but the pace of communication is winning so aggression and intimidation won’t be stopping progress for the perceived ‘weaker’ group. This starts to help me be a bit more of an English Optimist about the future. For what it’s worth Dystopia doesn’t care and the fact that I have survived for more than a decade means we’re not in a dystopia, no matter how vile the world sometimes seems. The world does care and if you take away anything from this. I hope it’s that. They say ‘man is the only species that leaves deliberate evidence of it’s existence.’ or that ‘in any given situation, you can judge a civilisation, by how the strongest treat the weakest’. And that is why Brexit is nonsense! I am a classic remoaner and I’m happy to be called that!

The only thing I want to provoke is thoughts – but it is easy to stray into dangerous ground even if I did that on purpose?!
Here are some more pictures - there are bound to be some repeatsHere's the youtube link to my 40th Speech
https://youtu.be/5c0IXOyRyNM