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A Fox Lake Blog

Clear the Roads!

Many years before I was injured a colleague once described the experience of being driven by me to a meeting in Cheltenham as, and I quote, “both the most frightening and the most erotic experience of my life”.  In my defence we WERE running late and it was an important meeting but still God knows what the poor man would make of being driven by me in a car with hand controls whilst paralysed from the shoulders down.  Especially if said man had been in the car with me the day my foot got stuck under a badly designed pedal guard, jammed onto the accelerator and hurtled the car rapidly over 90mph.  Luckily I was on the M18 at the time and it is one of the motorways that still has a hard shoulder so I was able to get across the lanes and then lean on my brake hard enough to slow the car right down despite my foot still pressing the accelerator – but not enough to actually stop.  Then I had a problem.  One hand is on the lever that controls both brake and accelerator and, in this instance, braking as hard as possible.  The other hand is holding the steering wheel to hold the car in lane on the hard shoulder and now I have run out of hands to do anything else with and the car is still moving.  What I needed was a, well, handy third hand to knock the damn thing out of gear.  As I lurched along the edge of the motorway I considered my limited options. 

Option a) let go of the brake lever and reach over with right hand to gear lever and put it into neutral. This would see me accelerate like a nutter briefly on the side of the motorway but at least I would be able to hold myself in lane.

Option b) let go of the steering wheel with my left hand and hope that I can knock the car out of gear before I veer into the adjoining slow lane and possibly the path of an oncoming lorry. 

Then I remembered one of the ‘safety’ features of my car is that you can’t do anything with the automatic gear lever unless you are pushing the brake pedal.  So option b) it was unless I wanted to do my whole journey home lurching down the M18 until either the Traffic Police came to enquire exactly what the hell it was I thought I was doing – and probably arrest me for failing to stop when required – or the brakes overheated and faded and I ended up being chased down the hard shoulder at speeds of over 100mph by aforementioned constabulary before wrapping myself around a bush/tree/the armco and finishing the job my horse started.  

I let go of the steering wheel and grabbed the gear lever into neutral, did not veer much off lane before I could grab the wheel again and came to a stop.  Frightening, yes.  Erotic?  Definitely not.

Generally though, being able to drive is a delight for me, if not for my passengers although I have been mightily impressed by the sangfroid of many of my friends who have clambered willingly into the passenger seat and only whimpered quietly occasionally.  I have read several times that other disabled people love driving because they feel ‘normal’ – that when they are in their car no-one can tell that they are disabled but sometimes I feel bad for fellow road users around me when I display some annoying driving due to my disability.  Modern cars have lots of buttons – radio, satnav, thermostat, vents, aircon – all designed to be operated by hand because most people are driving with their feet. When you are on hand controls – as my M18 experience demonstrates above – doing anything other than simply driving becomes a loaded choice and usually means that you have to wait until coming to a stop at a traffic light or junction to have a hand free to twiddle other knobs as required.  This also means that the person behind you is wondering why the hell you haven’t moved off yet and it takes some serious set-up planning if you are driving somewhere on your own which is going to take several hours.  You really don’t want to have to go through the rigmarole of pulling off the motorway into the services with all that entails just to forward onto the next song on your playlist or take the temperature down two degrees.  

The other thing you have to master is car transfers.  As I said back in the Barbara Bus days – the fact that wheelchairs and cars are not compatible sizewise has probably never crossed your mind. It is possible to get vans that allow you to wheel directly in and drive from your wheelchair but I have always been a bit of a petrolhead and faced with an impressive array of available machinery thanks to the Motability scheme, I would rather have eaten my own arm than settle for a large box on wheels; eminently more practical and sensible as the box may have been and as I have been CONSTANTLY reminded by Himself as he wrestles with my latest, tiny hot hatch. Sample conversation:  “Do the seats lay flat in this to slide a wheelchair in?” Me: “No – but look!  I can change the colour of the lights on the dashboard!!”  

A quick aside on the Motability scheme.  There are vanishingly few advantages to having a spinal cord injury but gaining the benefits of Motability is one of them.  Motability is a charity partially supported by the Government but mainly financed by ordinary donations, that supplies the severely immobile with transport.  It used to supply the less immobile with transport too but flagrant abuse of the system inevitably led to the rules being tightened.  I have heard tales from car salesmen about young men coming in insisting that their disabled granny really did want a M3 series BMW in that particular metallic purple and with extra low profile tyres.  Bingo waits for nobody, it would appear.

Sadly abuse of the system by this type of greedy and selfish prat has meant that definitions have had to tighten.  As a result many genuinely disabled people have lost their transport and over the last few years what was an astonishingly extensive list of available makes and models has shrunk and continues to diminish.  However, even given these issues, it’s still a wonderful scheme, if you qualify.  Essentially the charity supplies you with a brand new car, adapted for your disability, in return for a deposit (variable on the cost of the car you choose but can be as low as £500).  You keep the car for three years and everything is paid for on it – servicing, tyres, insurance, car tax, recovery – in return for a monthly proportion of your Personal Independence Payment (PIP) as the lease cost.  All you have to pay for is the fuel.  The independence and freedom conferred by being able to drive cannot be overstated.  For someone like myself, living in the middle of nowhere with only a dirt track in the village not passable by ordinary wheelchair and with no public transport, not having a car would mean I would literally be imprisoned in my own house.  As we come out of the experience of lockdown, many of you reading this now know what that feels like and I’m sure you can imagine what it might be like to contemplate that lack of freedom for years and years on end. 

So, back to car transfers.  As a quadriplegic I am not strong or stable enough in the arms or torso to swing myself from chair into car seat so I had to learn to slide across a transfer or banana board.  (Another genuine sample conversation:  Me “Can you pass me the banana board?”  Friend:  “Why is it called a banana board?”  Me *contemplating yellow, banana-shaped board* “I have no idea”.)

The board bridges the gap between wheelchair and car seat and it’s actually one of the easiest transfers to learn to do because, whether getting into driver or passenger seat, you have a door in front of you to lean on that, theoretically stops you falling forward onto your face.  I say ‘theoretically’ because I have in fact achieved exactly this twice – the first time when leaving hospital to do a home visit with the hospital OTs to see what adaptions I required.  On that occasion I was scraped off the ground by the driver and the Head OT and I agreed to a collective amnesia about the fall to avoid a vast amount of paperwork.  The second time the wheelchair moved sideways due to a dodgy brake and the board fell off the seat, depositing me into the very small space between wheelchair and car door.  Luckily – and these are the sort of things you ALWAYS have to think about when as incapable as I am – I had already placed my phone into the door pocket so I could reach it from the ground and request help to unptretzel myself from the floor.  Obviously, falls like this don’t really hurt because you can’t feel properly but they are dangerous as limbs can easily get twisted and break brittle bones and restricted blood flow means that skin scrapes and cuts are extremely slow and difficult to heal.  So ideally, you try to avoid them.

My first car transfer at home was not what one could call smooth.  I was still physically pretty weak, even a year after my accident and the situation was not helped by me choosing a Mini Cooper with wraparound seats as my first vehicle – but – as noted earlier it made lovely engine noises and you could change the interior light colours.  Himself came to help.  I placed board between chair and car.  So far, so good.  I started to push myself out of chair to halfway across board and then didn’t know where to put my hands.  I tried grabbing hold of the steering wheel, lost my balance, hit the windscreen lever instead and turned the wipers on.  Himself leant in to help as I lurched and hit the lever again, squirting him with screenwash.  At this I got the giggles and collapsed backwards into the car. On another occasion I managed to fall forward and split my lip open on the gear stick.  Graceful it was not.

Once actually IN the car I had to relearn to drive which was harder than I had anticipated. Fellow Yorkshire road users were subjected to crawling along behind me at 15mph in narrow lanes as I tried to become accustomed to steering one handed and not muddling ‘down’ with ‘forward’ on the other hand. Adjusting to momentum and changes of direction is also tricky without any torso muscles although, from the way Himself frequently grabbed the dashboard on corners, it seemed that he was suffering from the same problem.  As the tweet that introduced this chapter indicates, to start with I did occasionally require co-driver action from my passengers and sometimes tricky decisions have to be made at junctions and at night.  The switch for the indicators and headlight dip is on the accelerator/brake lever but this was being operated by my right hand which only has about 20% function, if that.  So I did not have – and still don’t have – the finger dexterity to flick switches whilst also pushing the lever forward to brake.  Cruising into a junction therefore requires careful timing to ensure that you leave yourself able to brake, then indicate, then brake again otherwise you confuse everybody by indicating way earlier than ‘normal’ or not at all.  Also, on bends at night you can EITHER brake before the bend OR dip your headlights but you cannot do both should an oncoming car suddenly appear.  Somewhat selfishly I generally opt for making it around the bend in one piece.

After a few weeks of shuffling around the lanes, I got to the point where I could feel relatively confident that in an emergency situation I could rely on my reflexes to push a lever to stop rather than expect my paralysed right foot to do anything and I ventured out onto faster A roads and from there dual carriageways and, finally, the motorway.  Then I went to the nth degree and embarked upon a three month course of specialist neuro therapy in…Cambridge. Unfortunately at the time there was virtually no specialist exercise rehab in the North so this meant I had to drive from Yorkshire to Cambridge twice a week – a total of 800 miles.  Many lovely people volunteered to come with me to share driving and their company during this time but there were still weeks when no-one could make it and I had to do the trip on my own. I mention this because 18 months after I started driving post injury and the nearly 10,000 miles I had clocked up just going to therapy for three months, someone casually happened to ask me where I had taken my hand controlled car driving test.  

“Er…my what?” I responded, a feeling of cold dread creeping up my (paralysed) spine. “Your hand controlled car driving test” the person patiently repeated.  “Which test centre did you do yours in?”  So it was that I discovered that I had to take a separate test – which makes perfect sense of course but nowhere in any of the Motability literature had it mentioned this necessity and, once again, as with pretty much everything post hospital, I was having to work it out on my own so I had managed to miss this requirement.  I belatedly consulted the DVLA which told me “Get thee to a driving centre like now” so I booked myself into my nearest one at Leeds.  To keep up the appearance that I had NOT already been driving all over the country alone, Dad drove me to the centre and I wheeled myself in to see the lovely people there.  

My assessment started with a long questionnaire over a cup of tea with one of the instructors.  Questions were asked and answered about injury, ability, function, driving experience, type of hand controls and then we got to the critical one.  “How long have you been driving your car post injury?” the nice instructor asked, presumably expecting an answer of “Oooh, about a month/six weeks”.  I took a deep breath.  “Um, 18 months.” I answered.  The nice instructor’s pen froze momentarily over the paper then, displaying the nerves of steel and general unflappability no doubt requisite in people who get paid to sit alongside newly disabled drivers on public roads, he calmly replied “I see” and wrote down my answer.  I waited for the reprimand or even to be told that my (unqualified) licence was about to be revoked but to my immense relief he merely said “Right, well, let’s get you in a car then”.  Which sounds easy but wasn’t.

First, the car was not the same as my car – which I’m sure comes as no surprise to anyone but when getting in your car relies upon being used to a certain width, height, door and seat placement and you are still very weak and useless from the chest down, even a small differential of a few inches can make the difference between being able to slide into the car and being stranded halfway with your face resting on the door frame and your backside hanging off the slide board.  So it was with me.  Luckily disabled driving assessments involve two instructors – presumably so they can at least hold someone sympathetic’s hand as they face certain death – so between the two of them I was unceremoniously shoved into the vehicle.  Then I faced a second problem.  The hand controls on this test vehicle were not the same as mine.  First, they were the other way round – lever on the left and steering with the right hand. Second the lever was pull forward to accelerate and push to brake.  Suddenly I was now having to hold my wheel with the hand that has virtually no grip and rely on a different technique to start and stop which is not conducive to accurate reactions should something unexpected happen – and this was Leeds. For those of you who have never tried driving in Leeds I would advise you just don’t.  A work colleague of mine, knowing I came from Yorkshire, once rang me in the office in London sobbing because she was mired in the circle of hell that is the centre’s one way system and couldn’t get out of it to find her meeting. She hoped that, as a relative native, I might be able to help.  I listened sympathetically and then told her it had been lovely working with her and did she wish to leave any money to a cat charity?

Doubtfully I regarded my ‘new’ controls and mentally kissed goodbye to passing any form of driving competence test.  “Right” said my lovely instructor, from beside me.  “Off you go then and I will give directions as we proceed”.  I started the engine and lurched erratically out of the carpark and onto the road.  To be honest, I don’t remember much about the next half an hour but it would be fair to say that I did not cover myself with glory.  Luckily I did not cover myself with pedestrians either but smooth progress was most definitely not made.  At one point I definitely lost hold of my grip on the steering wheel whilst negotiating a roundabout but since I was doing 3mph at the time this wasn’t as much of a problem as one might anticipate.  To demonstrate that I did actually know what I was *supposed* to be doing even if the combination of disability and new controls was rendering it unachievable, I accompanied my motorised perambulation with a running commentary such as “Right, traffic light changing to red ahead..so need to brake…need to brake…brakes…bollocks, OTHER hand, yes, there we go.  OK, changed to green, um, why am I not moving?  Oh yes, pull BACK to accelerate in this car, haha – different controls you know…WHOA, mind that cyclist..shit, was that a junction?” and so forth. 

I arrived back at the test centre (the turning for which I nearly missed and barely made, entering with an unexpected turn of speed and then screeching to a halt) very depressed and contemplating the loss of my newly found freedom and weeks of tuition in this test car before I would be assessed again.  “Well done,” said my lovely instructor.  “You’re all set”.  I stared at him, astounded.  “You can’t possibly be going to pass me on that showing are you?” 

“Oh yes” he replied cheerfully “I thought you actually did rather well”.  If he was telling the truth all I can advise you dear reader is that there are now even more reasons to stay the hell out of Leeds traffic. 

I clambered back into my Mini immensely cheered and hoped the lovely instructor was watching to validate his pass as I pulled smoothly away from the test centre in my own car to get hopelessly lost once more in the rabbit warren of suburbs.  My freedom was now official and the world was my oyster – or at least those bits of it I could reach by car and if there was someone waiting here to help me get out on arrival.  

#Mini still requires a co-driver. Responsibilities: Me: brakes, accelerator, steering. Him: headlights, gears, screaming.

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The ‘i’ Word

I was sitting alongside the exercise track by the beach trying to untangle my iPod headphones prior to taking some exercise.  Suddenly a shadow fell over me and I looked up to see a beaming lady hovering by my side.  “My goodness” she said “You are so inspirational.”

“I KNOW.” I replied “These headphone wires are a total b*tch to untangle.  Who designs these things?”

She looked totally confused but ploughed on regardless “It’s just wonderful to see you out.  You are so brave!”

Internally I sighed. I knew she meant well but, once again I and a total stranger had both become victims of society’s strange and contradictory attitude to disabled people.  On the one hand this nice lady was offering her support and endorsement of me being on the loose in public in a wheelchair.  On the other, the fact that she felt compelled to come and congratulate me for just being outside whilst disabled, demonstrated discrimination.  She wasn’t congratulating anybody else for exercising so I was being singled out because of my disability. 

Of course, to charge into all of this at half past three on a Thursday afternoon with this nice lady would have been unkind, unfair and, ultimately pointless but it did make me start to question just what it is that so raises my hackles about being called the ‘I’ word – Inspirational.  Unfortunately, you’re all now going to get my resultant thinking on the subject.  Buckle up.

So let’s start with the dark side and then we can slowly crawl up into the light and end on a positive note.  The achievements of disabled people are often held up as motivational models for the able-bodied.  Sometimes that is done in an empowering way – think Ch4’s campaign for the paralympics of ‘Here come the superhumans’ but more often it is done in a way that says to the able-bodied ‘Look, if THEY can manage this (swimming the Channel with no arms/winning Olympic Gold with no legs/untangling iPod wires in a stiff breeze from a wheelchair) then what’s your excuse?  On the surface this seems laudatory but what it is REALLY saying is ‘these people have it a lot worse than you so feel grateful for what you have’.  That’s all very well for the able-bodied but what about how it makes the ‘worse-off’ person feel?  

I can tell you that it makes us feel pretty crap, actually and where the weirdness of it really begins to show up is if you try applying the same approach to other groups.  It would not be considered in the slightest bit acceptable to march up to someone who is overweight and tell them that they have reaffirmed how grateful you are to be thin, for example.

What these well-meaning people do (and they are all well-meaning in my experience.  Nobody has deliberately conveyed that  my being crippled makes them feel much better with the aim of upsetting me, apart from, possibly, Karma Guy) is alienate the disabled further.  Accessibility is not simply physical for us – it’s also about being accepted rather than segregated in society.  When I am wandering around Tesco’s pondering semi-skimmed or whole,  I am just, to me, someone shopping.  If a passer-by launches into the whole ‘you’re so amazing for being in aisle three’ routine, what that does is mark me apart again as well as forcing me to confront the uncomfortable reality that I am probably in a worse physical state than anyone else in the shop.  That’s not a pleasant feeling.  In a supermarket in Australia one man reduced me to tears of fury by airily rounding a corner, spotting me and relating the following “Oh, hello.  I nearly ended up in one of those but I told my surgeon that I simply refused to live my life in a wheelchair so I didn’t.”  Yes.  Quite right.  I am in this wheelchair not because I hit hard ground headfirst from a considerable height, literally smashed my cervical spine into little pieces and crushed my spinal cord but because I am, in fact, just not determined enough to walk.  I mean, where do you even start with that ignorant and hurtful nonsense? If willpower was all it took then I and most of the people I know in wheelchairs would be up and walking ten minutes after our accidents. 

And yet, and yet – talking of willpower, you need a vast amount of it to live as a disabled person.  Whilst I am wanting to blend into daily life rather than be marked apart it is also true that it was a damn sight harder for me to get to the supermarket than it was for everyone else.  It wouldn’t have taken them several hours and as much effort as a good gym workout just to get up, get showered and get dressed. They wouldn’t have had the frustration of trying to make and eat breakfast with the use of half one hand. It wouldn’t have taken them a good five to ten minutes just to get in and out of their car.  They wouldn’t be doing any of this whilst always in a state of constant, uncomfortable nerve pain. So actually, much like Muttley,  perhaps I should be sitting by the milk demanding a bloody medal. 

In addition, having a physical disability means society does convey upon you a kind of untouchable status. Last week I was talking to someone who didn’t like something else a person in a wheelchair had done but immediately added ‘But you’re not allowed to say that though are you?   Because they’re in a wheelchair.’ I nodded gravely. ‘Absolutely not.’ I concurred ‘We must not be criticised.’  There is no getting away from the fact that this is as discriminatory as being singled out and then congratulated for managing to be out of the house but since I quite like this aspect, I’m hypocritically all for it continuing.  Other advantages include but are not limited to:

Smuggling previously bought goodies on my lap into the cinema to avoid having to take out a mortgage for a Pepsi Max and a box of Maltesers – who is going to dare to start rummaging underneath the artfully-draped anorak of the girl in a wheelchair after all?  Technically I am not even sure this is forbidden but it feels like it is so ha!

Being asked to give motivational speeches.  Trust me when I tell you that no-one wanted me to come and talk to them about advertising cereal in my previous life.

The ability to park on double yellow lines.  Himself once observed, as we drew to a halt directly outside our restaurant one rainy night “It was worth breaking your neck just for the parking privileges.”

Having no-one dare argue with you if you have to complain – although it would be nice if the vast majority of my complaints were not of the tediously tiring sort like ‘Why do you have all your disabled rooms on the first floor and ordinary rooms on the ground floor and a lift that doesn’t work?’or ‘Perhaps you might like to explain to me how you can say your pub has disabled access when it’s actually taken me ten minutes to get in and has involved three men to carry me up several flights of steps, the drawn-out unlocking of some jammed back door, being pushed through the kitchen and then the wholesale arrangement of 70% of your other patrons and their tables and chairs to get me to mine?’ or ‘For the love of all that is holy, can you please stop putting this gigantic nappy bin in your disabled toilet because it means  THERE ISN’T ROOM TO GET A WHEELCHAIR IN IT!!’

These are all true complaints that I have had to make, by the way.  The last one backfired though because the next time I visited that particular loo in that particular hotel they had gone to some considerable effort to structurally re-arrange the whole thing.  The good news: the nappy bin had gone.  The bad news: they had swapped over the loo and the sink so there was now only a five inch gap between the front of the loo and the wall, meaning no wheelchair user could get past it to use the sink which was now on the far side.  For an extra dose of irony in a pandemic, they had also thoughtfully plastered several notices around said loo about, having rendered it entirely impossible, the importance of thoroughly washing your hands.  I promise, once again, that I am not making this idiocy up. 

So, I find myself wondering where to conclude I sit on all this and I guess it’s that disabled people do deserve a hell of a lot of respect from the able bodied.  Almost everything in normal life is hard because the world is not set up – especially in the UK – for us.  Many should be awarded a bloody medal for making it to the supermarket, given the hurdles we’ve overcome to get there. Having recognition of that fight and respect for it is great – thank you, bring it on.  However saying we’re inspirational isn’t actually about us – it’s about you and how our disability has made you feel.  That’s fine but it’s something you can think and feel without relating it out loud.  One of these approaches recognises and applauds our strength.  The other tells us that we have made you feel better by being worse off than you are.  

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Ode to an Odour

Hello peeps. I am currently writing a blog post which is (hold the front page!) somewhat serious and about how society views the disabled based on a robust study of, er, my experience. It’s not finished yet but, it’s Friday and we’re all locked down again so I thought you might like a little light relief. This week, as some of you know, I have spent my evenings on the sofa applying sudocrem to the crusty nipples of my spaniel. No, this is not a euphemism, I really have. This past-time reminded me of other occasions when she has proved to be a revolting, little Herbert – the number 1 slot currently (and, please God, always) occupied by her finding and rolling gleefully in a pile of human poo. She was covered. COVERED. She was as inordinately proud of herself as we were repulsed, trotting along merrily, smeared in faeces as we trailed, gagging, in her wake. No 2 on the list was the time she got what is known as lip fold pyoderma. The smell was so bad that I couldn’t stand being in the same room as her for very long and even she sat with her paws frequently over her nose. Since the stench was coming from her mouth, this was a foolish strategy but it did inspire me to poetry; she was my stinky muse. What that says about me is probably not worth dwelling on but here’s the result. Good weekends all.

Ahem.

Oh, wondrous spaniel, how particularly cute thou art
With limpid eyes and floppy ears, you steal our hearts
Until last Saturday.
Relaxing on the sofa in your usual state
You began to emanate
What can only be described as a f***ing awful smell.
At first it took us rather a long time to realise
That such a large stink could come from a dog your small size.
It cannot be her, we thought but all the same
We agreed not to put her near a naked flame
Until we had established the fact
That the pong was coming from her digestive tract.
Its aroma gathered strength around her mouth
And, luckily not from anywhere further south.
That said, the dreadful pungency around her snout
Was like someone opened the gates of hell and Beelzebub himself breathed out.
Husband was foolish enough to lean down and get
Rather close and, with tears in his eyes and visibly upset,
He said ‘We’d better get this bloody dog to the vet.’
Fortunately the trip to the vets is not very far
As no-one wanted to be trapped in the confines of a car
With this malodorous puppy.
The vet sprang into action as soon as he was able
And lifting the spaniel up onto the examining table
Declared ‘Holy shit!’* and liberally applied the Hibiscrub
As well as prescribing several powerful drugs
To battle the horrific pong.
It turns out, dear reader, that little spaniels, however cute
Have wrinkly lips, a design fault that doesn’t suit
Anyone who wishes to avoid the kind of stench
That makes eyes water and buttocks clench.
Food gathers in these folds
And sticks there til rather old
Not helped by the time she’s spent
Scoffing the ripe excrement
Of many species.
I’m pleased now to be able to report
The spaniel smells more like it ought
But if you like spaniels I think it’s only fair
If getting one you are aware
That before you fall under their spell
They have a strong tendency to smell
Awful.


*Well known veterinary technical term.

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A Fox Lake Blog

Giddy Up Part II

After the triumphant creation of my seafaring jigsaw masterpiece, I returned to OT the next day to see what John had in store for me – or, more possibly, for him.  

‘Good afternoon, Lady Tara.’ he bowed ‘How kind of you to grace us with your presence again.’

‘Yes, I thought so.’ I agreed as I rolled in.  ‘What are we doing today?’

You will be pleased to know,’ he replied ‘that we will not be doing a jigsaw.  We will never be doing a jigsaw again for the rest of eternity.  Instead, I have decided to ask YOU what accomplishment you would like to target for your hand function by the time you leave hospital.  Something that we can use to focus your hand therapy in a way that you are more, shall we say, engaged in.’

I thought for a few seconds.  ‘Doing up a bridle’ I replied.  That’s something that would be a challenge and I would find useful’

“Is this’ John asked ‘for when you need to ride across your estate?’

‘Of course’ I replied ‘It’s far too big to get across on foot.  And sometimes one needs to trample down trespassing peasants and I’m not heavy enough.’

‘It will be the highlight of my therapy career to know that I have enabled, through my expertise and dedication, the trampling of wayward peasants such as myself under the steel-shod feet of your steed.’ he replied.  ‘However, I find that the occupational therapy room is fresh out of available bridles and, would you believe, horses.  Would you be able to supply either of the above?’

‘I can supply bridles with a range of bits and a small variety of equines to choose from.’ I responded.  ‘However, I feel doubtful that I’m going to be able to get either of the horses into the hospital lift without security doing a lot of running around and shouting into walkie-talkies

‘What’ interjected Mary, the redoubtable, Scottish head of OT, ‘the hell are you two going on about now?’

I turned to her.  ‘Do you think I could bring a horse into the gym next door?’

“No you bloody couldn’t’ said Mary, who was not one to mince her words.  ‘We’ve had the occasional dog in there but no horses.  For obvious reasons’.

‘Well this isn’t going to do at all.’  I responded. ‘Have you seen the size of my spaniel? I can’t ride THAT across country.’  I turned to John ‘What are we going to do now?’

‘Well, Lady Tara,’ he answered ‘I guess it means that you will have to put the bridle on me. I will build a horse’s head that I can wear and then you can put the bridle on that.’

‘Excellent’ I agreed.  ‘I could even bring in a lunge line and whip and lunge you from my wheelchair in the gym.’

‘I have no idea what any of that even means’ replied John ‘but it sounds like we have a plan.’

Mary looked between the two of us and clearly concluded that we were joking.  (Narrator: ‘This was a mistake.’)

Over the next few weeks John and I worked hard on my hand therapy.  I had weights attached to my wrists and flexed them back and forth, I played random computer games requiring some basic (very basic) dexterity to operate the controls, I had my hands massaged and stretched every day, became a Connect 4 champion and worked out how to clear the peg solitaire board in about three minutes because I did it so often. I have to confess these were not life skills that I thought I would acquire in hospital but they can now be added to my CV; perhaps in the ‘overview section’.  “Tara is a C6/7 tetraplegic with many Connect 4 victories under her belt and surprisingly fast commando crawling skills. She can be left for long periods on her own if supplied with peg solitaire.” 

One day I came into the OT room having been reading about FES therapy.  FES stands for Functional Electrical Stimulation and does exactly what it sounds like.  You put electrodes on various muscle groups, run electricity through them to contract the muscle and off to relax it.  In this fashion, paralysed muscles can be worked and built up again, especially when loaded with weight – for example pedalling a stationary bike.  You would have thought that after the Das Kerplunking at the hands of my consultant I would have had enough of getting electricity run through me but, as ever, I was always eager to try anything that might aid recovery so I asked Mary why we didn’t have any FES kit in our unit.  I then had a very NHS-typical conversation.

‘Oh we do’ she replied

‘We do??’ I queried

‘Oh yes’ she said, ‘we have a very good piece of kit to work the muscles in the forearm so as to open and flex out hands.’

‘But I’ve been coming for sessions in this room every day for months and I have never seen anyone using or been offered myself to use FES’

“Ah yes’ she replied.  ‘Well it’s very expensive so we’ve been told not to advertise the fact we have it.  We have to wait for patients to ask to use it.’

‘But how the hell are patients going to ask to use something they don’t even know you have??’

‘You just did’ she pointed out.  I stared at her, feeling much like Alice dealing with the insanity of Wonderland. ‘To be clear, you are telling me that if I had not happened to read about FES kit and then come to ask about it, you would not have been allowed to mention the fact that you had some?’

‘That’s right’ said Mary

‘And now I, completely by chance, have unearthed the existence of this useful and relevant kit, am I allowed to use it?’

“Well that depends on you passing the assessment for it’

‘I’ve been having hand therapy in this room every day for FOUR MONTHS.  How can you not know whether it can help me or not by now?’

Mary looked resigned.  ‘I’m quite sure you could benefit’ she replied ‘but I have to put you through the official assessment for FES before we can use it on you.  Those are the rules we’ve been given.’

I rested my head on the table in disbelief.  ‘What happens in the official assessment?’ I asked in a muffled tone.

‘I use the FES on you’

‘You assess whether I can use the FES machine by using the FES machine on me?

‘Yes.’

I lifted my head up and then banged it down a few times.  

‘All right’ I said ‘Sign me up’.

Some days later Mary asked me to meet her outside of my normal OT time in the unit’s canteen.  I did so.  She told me to follow her and set off down a maze of corridors I had never ventured down before and then into a small side room.  In here, out of the sight of any other patient who might spot the top secret FES kit, she stuck a few electrodes on me and tried it out on both my forearms.  The sensation, whilst not pleasant, was no more than an electrical tickle after the ministrations of Das Kerplunk machine but, to be fair, I suspect that being nailed to a live pylon in the rain would also be a mild tickle compared to that.  Certainly I later met other patients who said they found FES too unpleasantly painful to use and, only recently, I was in physio using a different type and apparently was happily withstanding a setting of “20” on my hand when most people start screaming at “10”.  Perhaps my central nervous system was entirely reset by my insane consultant. Either way, I’m delighted to report that I sailed through my assessment and added regular FES therapy to my hand OT.  

As we worked on my hands, John and I continued to plot the grand finale to my hand therapy – namely, the day that I would triumphantly succeed in doing up a bridle around John wearing a horse’s head and demonstrate to the unit how to lunge someone.  In preparation one day I made the mistake during OT of innocently googling ‘lungeing a person’ and came across a phenomenon known as ‘pony fetishism’. For those of you who claim to not know what this is, it’s when people dress up as ‘horses’ to be treated as such by ‘riders’.  Strangely, these people appear never to have encountered a real horse because they, almost without exception, made all their horsey outfits out of PVC.  Whilst this displays admirable ‘wipe-down’ practicality, it means they can’t move very freely, get rather hot and make squeaky noises when they trot – but maybe that’s all part of the allure.  I showed the pictures to my fellow OT patients and John to much hilarity and helpful suggestions as to what John’s pony outfit would be.  

Unfortunately, it turned out that the pony fetishists were the straw that broke the, er, horse’s back, as far as hospital management was concerned.  When I finally turned up several weeks later clutching my bridle, lunge line and whip – all kindly brought into the hospital by my mother, obvs – ready to put John through his paces, my entrance was blocked by Mary.  Behind her, on the table, sat a hollow cardboard horse’s head made by John to wear and beside it stood the man himself looking somewhat downcast.  The news of our escapade (and the google search) had spread and the powers that be had decreed that I was NOT allowed to demean the office of NHS Occupational Therapy by taking one of its uniformed members, placing a cardboard horse’s head on him, tacking him up and then lungeing him in the hospital gym.  Honestly.  Some people.  

Instead both John and I had to make do with just putting the bridle on the horse’s head sitting sadly on the table.  You don’t need me to tell you that it just wasn’t the same. 

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A Fox Lake Blog

Das Kerplunk

Not much more than ten days after dismissing me to his junior acolytes as a hopeless case who would never show any recovery, my consultant pitched back up again at my side one day and demanded that I show him my hands. I did so – the left being relatively functional, the right moving but not actually able to flex or grip or straighten. 

“Mmm” said the consultant, ‘I think we will try Das Kerplunk machine on you’

(if memory serves it wasn’t *actually* called that but it was pretty similar so I’m using this as its working title).

‘What,’ I asked, understandably, ‘is Das Kerplunk machine?’

‘It’s this new electrical stimulation machine from Germany’ he replied “It’s had very promising results.  We put it over your spinal cord where you have your lesion and it could help restore function in your hand.  I think you should try it.’

I regarded him with some suspicion but I wasn’t going to turn down any chance to improve my hand function so I acquiesced to the treatment.  ‘Marvellous’ said the consultant, I’ll get it out of my car boot and we’ll try it tomorrow.  Be in your ward by your bed at 11am.’

The next day rolled around overcast but not raining.  Frankly, had I known what was coming I would have demanded a dark, stormy night with lashing rain, crashing thunder and flashes of blinding lightning.  I’m given to understand from films that this is the sort of weather that usually accompanies insane scientists attempting to reanimate inert bodies with vast quantities of electricity.  My own Dr Frankenstein arrived pushing a trolley upon which sat a sizeable box trailing wires and electrodes and a junior doctor clutching lube.

They whisked round the flowery curtains and this was my first warning that what was coming was not going to be pleasant.  ‘Take off your top’ instructed my consultant as he fiddled around with the machine.  He flicked a few switches and the machine began a low hum which slowly built in intensity.  I stripped off my sweatshirt with the junior doctor’s help.  ‘Cover her in gel’ – this whilst he plugged things in and fiddled with dials.  The junior doctor duly slathered me in cold gel.  The hum was now loud enough to hurt my ears. Dr Frankenstein grabbed hold of a large metal probe and approached me.  ‘Right, ‘ he said ‘hold still’ and with that he flicked on the power of Das Kerplunk.

I’m finding it very hard sitting here now to accurately convey the sensation that exploded into my central nervous system with all the finesse of an armed SWAT team kicking in the front door.  Once, when younger and more stupid, I decided to find out the voltage of an electric fence by grabbing hold of it and that felt like being punched in the chest.  Another time, when attempting to get a daft horse out of a field, the horse stuck his backside on the live fencing.  The shock went through both of us like a thunderbolt and the horse, for good measure, went vertically up in the air and then came down, all 600 odd kilos of him, on my foot.  This was like both of those experiences combined, multiplied by a factor of ten and then transmitted through my spinal cord in both directions.  If I’d had any fillings they probably would have lit up like a Christmas tree.  I tried to speak but could only emit a strange vibrating noise along the lines of ‘Eerrrrrrrrrrggrrrrrrrr’ .  The mad consultant cackled, probe in hand and firmly planted against my neck.  ‘Aha, yes!’ he crowed, ‘That will shake it up a bit.  Just think, if this works, you could win me a Nobel prize!’

Still unable to enunciate words and with God knows how many volts still roiling through me, the realisation that he was possibly certifiably insane occurred.  Only ten days earlier I had been written off as a waste of time and physio.  Now I was going to be the successful guinea pig that won him a Nobel prize – probably still glowing.  “Errrrggrrrrgghh’ I responded, my eyes rolling back frantically to fix on the horrified ones of the junior doctor. ‘Um,’ she said shakily ‘I think she might need a break’.  The consultant ‘tsked’ irritatingly and removed the probe from my neck.  I slumped back into my chair like a puppet with its strings cut, my brain – and presumably my spinal cord – still trying to work out what the hell had just happened. 

“Well that will have given it something to think about’ said the consultant.  ‘Take a minute and then we’ll give it another go.  How does your hand feel?  Can you move it any better?’

I regarded him stonily.  “I can’t’  I responded  ‘actually work out whether I still have hands or not’.  He treated this as amusing repartee rather than the accurate, real-time, patient feedback it was. ‘Excellent!’ he said and reapplied the probe. 

Afterwards, when the consultant, the junior doctor and Das Kerplunk had departed, I spent some time staring aimlessly into space whilst I tried to process the experience.  Was it, I wondered, worth undergoing that again multiple times in exchange for a better right hand?  I’d started the day pretty convinced that I would do almost anything for more function.  Now I wasn’t so sure.  Ultimately my desperation and my consultant’s ambitions of Nobel fame ensured that a second session was indeed scheduled a few days later. and this one was given extra allure by the anticipation, now I knew what was coming.  Once again the process was repeated – but with a pause occasioned by the battery of Das Kerplunk giving out, presumably drained by the extraordinary power it was being called to bring forth.  My relief was short-lived however.  ‘Don’t worry!’ shouted the consultant ‘I always carry a spare battery in my boot!’  ‘Oh goody.’ I responded as he dashed out to the carpark.

As it was I was saved from any more torture by a combination of my injury’s recalcitrance and the consultant’s impatience.  I had two Das Kerplunkings  over a fortnight and my hand failed to live up to his hopes by staging any sort of recovery from them at all so I was taken off the ‘could be possible ticket to a Stockholm prize-giving ceremony’ list and relegated back to the ‘hopeless’ division. Personally I would have thought that two sessions, given the  glacially slow healing nature of neurological injuries, was too few but perhaps he was getting better results from somebody else.  Either way, his electrical enthusiasm stymied his ambitions when he blew up the Das Kerplunk machine the following week and it was retired and never heard from again.  Wohahaha. 

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A Fox Lake Blog

Karma Guy

One of the unforeseen (by me at least) consequences of being in a wheelchair is your inexplicable attraction to nutters.  Let me stress that 99% of the people I encounter couldn’t be lovelier.  I spend a lot of time asking people for help – it seems an axiom of my new life that whatever I want in the supermarket is on the top shelf and many people at petrol stations have been accosted by me hanging out of my car window and asking if they could get one of the staff inside to come out and fill up my petrol tank.  I have found this a more effective way to get fuel than following the signs that ask you to sound your horn, flash your lights, put on your hazards and display your disabled parking badge.  Not only is this a feat of co-ordination that requires some planning but, on the one occasion I succeeded in doing all these things, people just looked at me like I was the nutter (including, I might add, several police officers who you would have thought would at least come to investigate) and gave me a wide berth so I went back to hanging out my car window like an enthusiastic Labrador.  Either way, I have asked people of all ages, hues, backgrounds and professions for help and all of them have been only too happy to do so.

Then there is a small handful of people who are determined to help you whether you want it or not.  I have, on a few occasions, had people grab my wheelchair and start merrily propelling me somewhere apropos of nothing at all from me.  I feel about this much as you would feel if you were wandering down the street minding your own business and someone suddenly came up behind you, picked you up and forcibly carried you somewhere you hadn’t asked to go and didn’t want to be.  This small group also appear to be selectively deaf because they take no notice of your protestations as they ‘help’ you because it appears that what is important to them in this encounter is how they feel about having helped a disabled person rather than how the disabled person feels  about being ‘helped’.  I can also report that they get quite upset when you let them know as well.  

But the really fun ones are the grade A nutters.   Most of these are the harmless ones that sidle up to you and do/say random things – examples of these for me include the following:

The woman who sat beside me at a lunch and alternated between telling me what a marvellous example I was and then, when she looked at me, how glad she was that she wasn’t in my position…for about two hours.

The homeless alcoholic who pitched up with a case of beer on a skateboard and invited me to join him and his buddies in the park.  When I declined politely and pointed out that I was in fact there to get some exercise, he continued to wave at me frantically every time I went past on a lap.

An elderly gentleman dressed in more hi-vis gear than I have ever seen on a human following me on his bike and intermittently overtaking me to pull into my path and shout randomly at me.

A lady who had a friend who was ‘paralysed for no reason’, wanted to know whether I believed in God, what I’d recommend for the friend and to tell me, repeatedly, that I was an inspiration for being outside on my own.

Honestly, I think their intentions were good but nul points for methodology or execution.  It’s quite difficult to make a rapid escape in a chair so, when accosted, I have developed a smile and nod technique that I employ whilst they talk.  I have also toyed with escalating this to screaming loudly whilst waving my arms around in an attempt to out-nutter them but I have to confess that I haven’t been brave enough to try this yet.

Then, at the top of the pile sits Karma Guy who basically forms a subset all of his own.  I encountered him in the picnic area of a remote national park in Australia. A friend and I had just discovered that the Park Authorities idea of ‘accessible’  included 45 degree slopes and lots of steps through a forest so we were on our way back to the car through the picnic area when a shout rang out “YOU THERE.  YOU IN THE WHEELCHAIR!’ and Karma Guy was upon us.  He emerged apparently from nowhere, clad in a T shirt and tracksuit bottoms that had both not only seen better days but retired hurt some time ago and made a beeline for me.  Pointing, he asked 

‘DO YOU KNOW WHY YOU ARE IN THAT WHEELCHAIR?’

‘Yes’ I replied.  “I fell off a horse’

“NO!’ he countered.  ‘YOU ARE IN THAT WHEELCHAIR BECAUSE OF KARMA!’

‘Nope’ I responded ‘I’m in this wheelchair because of gravity.’

‘I BROKE MY BACK SO I KNOW WHAT I’M TALKING ABOUT!’  Karma Guy cut across me and proceeded to roll up his tatty T-shirt to show me, admittedly, a pretty big scar on his lower spine that did look as though he had had some form of spinal surgery.  I decided to try and divert him slightly, resulting in this exchange:

“‘Wow, that looks fairly serious.  What happened?’

‘I FELL OFF A CLIFF.  BROKE MY BACK IN TWO PLACES, PUNCTURED A LUNG, BROKE FOUR RIBS, MY ARM, SERIOUS INTERNAL INJURIES…’

‘Ouch – that sounds bad.  How long were you in hospital for?’

‘TWO DAYS’

‘Two days?!?!!’

‘YEAH, I HAD A GREAT SURGEON.  I’LL GIVE YOU HIS NAME BUT THE REAL REASON I’M WALKING AND YOU’RE NOT IS BECAUSE OF KARMA’

‘Riiiiggghhht…’

‘BECAUSE NOTHING’S REAL, RIGHT?’

‘Nothing in your story appears to be real, no…’

‘THIS WHOLE WORLD’  windmills arms about ‘THIS WHOLE WORLD IS JUST AN ILLUSION.  WE ARE NOT HERE HERE, YOU KNOW?’

‘Er…’

‘SO IT’S YOUR OWN FAULT YOU CAN’T WALK.  MY KARMA IS GOOD, THAT’S WHY I AM FULLY RECOVERED.  DO YOU WANT TO KNOW WHAT YOU NEED TO DO?’

‘I think I’m pretty sure about what I need to do, thanks’

It was at this point that Karma Guy began to pick up on my less than enthusiastic reception to his miracle tale and sensed that it might be time to move onto some other unsuspecting tourist.

‘RIGHT’ he said, ‘WELL IF YOU WANT TO STAY IN THAT CHAIR, THAT’S ON YOU.’ At this point he produced a spliff and lit it whilst continuing ‘GOTTA GO.  STUFF TO DO, PEOPLE TO SEE’ and with that he ambled back into the bushes by the BBQ, presumably to prepare his next ambush.  It occurs to me now that, given the inaccessibility of the trail we were by, he’s probably still there waiting for someone else in a wheelchair to rock up.  I like to think of him peering through the undergrowth muttering to himself ‘No, that one’s walking…and that one…and all those.  All walking, dammit’.  I am quite sure that the irony of him living in a picnic area whilst telling better dressed strangers with homes and jobs that their karma is much worse than his has also not landed. 

Um, so where am I going with this? Basically – if you treat someone in a wheelchair like they are a normal person you’ll be golden – because they are a normal person.  They are you but with a certain part of their body injured.  You wouldn’t behave weirdly around someone who’d broken their arm or leg so there’s no need to do it around someone who’s broken their neck or back instead.  When it comes to asking someone whether they want help, personally I never mind this – probably because I often do and I always take it in the spirit that it’s intended.  More able paraplegics may feel that you asking impugns their independence so my guideline would be to offer if they look like they’re struggling but don’t be offended if you’re turned down.  Sometimes we want to do something ourselves just to prove we can even when it would be easier to be helped.  Certainly, I’m sure everyone reading this would happily help if specifically asked and I’d add don’t be alarmed if some girl hanging out a car window starts shouting at you on a petrol station forecourt.  It will probably be me.  

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This One Has No Hope Of Recovery

It was a fairly normal weekday and I was mid my physio session in the gym.  Decanted from my wheelchair onto a plinth I was manfully practising just trying to sit upright on the side of it without either collapsing backwards or toppling off it onto my face. Of such things does ‘exercise’ consist of when you only have control of your muscles to just below the shoulders. Into this scenario entered my consultant followed by a little shoal of junior doctors whom he was introducing to the spinal unit and lecturing on our various injuries.  He spotted me and proceeded over, taking up a stance right beside my plinth with his back  to me and facing his eager acolytes who formed a semi-circle round him. Consulting his notes, he ran through my injury – blah blah, horse fall, blah blah C6/7 incomplete, blah etc.  The acolytes stared at me curiously as he did so then, as he reached the end, one of them asked him “Will she ever walk again?”.  My consultant answered unhesitatingly and firmly, as though it was a very stupid question.  “No” he said, “This one has no hope of recovery.”  

Less than three feet from him, “This one” gave his turned back my best death ray stare and contemplated saying something.  I’m not normally the kind of person who is short of words, especially not of the four letter variety when required but, to be honest, I was just so gobsmacked that I couldn’t actually choose what to say out of my various options before my consultant marched off to the next plinth to treat another of his patients like a piece of furniture with his unique brand of callous hopelessness.  I’m sorry to have to report that his fellow consultant was much the same.  Faced with nearly twenty of us at a talk which was ostensibly about spasms, he spent the first half an hour labouring the point that none of us would ever get out of our wheelchairs unless we had been able to move our toes within six weeks of our injury.  He told us that the first recorded case of spinal cord injury had been in found in Egyptian hieroglyphs that were thousands of years old and, in the thousands of years that had passed since, no-one had found a cure for paralysis and nobody would.  At that time there had also been a recent Panorama programme about a man who had his stem cells harvested, grown from his own olfactory gland and replanted into his severed spinal cord.  The patient had made some recovery along with years of intensive physio but this consultant dismissed the whole programme, telling us that the operation ‘hadn’t worked’ and that, essentially, the whole documentary was nonsense. 

As this tirade went on I watched the heads of my fellow inmates drop and the atmosphere in the room became understandably very low.  None of us were expecting miracles and we knew the odds were not in our favour but all of us were recovering from severe trauma that had blown apart our lives and this approach was literally sapping us of the will to live never mind make any effort with our rehabilitation. Later, I spoke to someone connected with this stem cell research and recounted the consultant’s criticisms.  They told me that, from the few details I supplied about numbers of participants, it appeared that he had confused a previous trial they had done with the current one.  I had already found it extraordinary that he would, unnecessarily and unprompted, choose to torpedo this small bit of promising research  in front of the whole unit but to do so without even having the facts straight beggars belief.

 So, with the distance of several years not to mention the huge advances that have been made in the field since, here’s my take on the situation now.

First, I think it is nothing short of an absolute disgrace that our spinal consultants treated us in this way.  Their attitude and approach not only lacked the barest basics of bedside manner but was, I believe, genuinely harmful. I understand that there is a principle of not holding out false hope and that the sooner patients accept their injury the quicker they can begin to adapt and embrace a new type of life but there is a world of difference between false hope and no hope.  Additionally there is no excuse for treating patients as if they they are unfeeling automatons rather than recently traumatised human beings. 

Second, our consultants were far from infallible.  There were several inmates, even just during my stay in hospital, who had been told they would never walk again and who proceeded to leave the hospital walking on their crutches. There were also, unfortunately, some patients who were told they should recover quite a lot of function and never did. The fact is spinal injuries are highly complex and it’s incredibly difficult to be certain of anything with them.  We were also told that any recovery we would make would happen in the 18 months after our injury or not at all.  Many physios and patients I’ve met since have debunked this robustly which leads me onto my third point.

Third, continuing physio and exercise is critical both to your mental and physical health post SCI. It helps with the upper body strength you need to move about and perform everyday tasks, it challenges muscles to improve and function if they can, it helps with blood flow and pressure relief, preventing pressure sores.  It keeps your weight down as gaining weight only worsens immobility and makes everything more difficult and it helps maintain bone density.  However, working out is sometimes difficult enough to motivate yourself to do when you are fully able.  To motivate yourself when you are paralysed is a whole other kettle of fish so if some spinal consultant tells you that you are a hopeless case and nothing you do will make any difference to your recovery, it destroys motivation.  Several of my fellow inmates basically gave up following their helpful talk and spent the rest of their supposed rehab time sitting in bed or down in the canteen. 

Finally, I would say that I’m sure the majority of spinal consultants treat their SCI patients with respect, empathy and compassion.  However, as my experience has shown, there are those that don’t and other horror stories abound on injury forums, so mine is not an isolated example.  Personally I’d love to see the following:

This approach – “Hello.  You’ve (or, alternatively if you are like my consultant you could substitute the pronoun ‘it’ here) got a spinal cord injury so it’s time to abandon all hope.  There’s no cure, there never has been a cure and despite what you might see in the media, there never will be a cure so get used to the idea that you will never walk again and will always be in this wheelchair.  Here is a long list of all the problems you are going to encounter with this injury.  The sooner you accept all this the easier it will be”

become this approach:

“Hello you’ve got a spinal cord injury.  These injuries are very complex so we can’t be definitive about any recovery.  As it stands right now, we’re sorry to say that the prognosis isn’t good and there is a long list of complications that come with this type of injury.  However what we CAN say is that both your chances of any recovery and of lessening the impact of complications will be helped by working hard at your hospital physio and, after discharge, taking regular exercise.  This will also help you make the most of the function you do have and be in the best shape to take advantage of any medical advances that may happen in the future.”

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When Neighbours Don’t Become Good Friends

To my immense disappointment, I only kept my private room at the second hospital for about five weeks. To be fair, I had been warned that it was likely that, with the arrival of a new patient requiring isolation until they were clear of any MRSA, I would be kicked out onto a general ward but I did note that there were ladies who arrived both before and after me who kept their rooms for the duration of their stay.  I was extremely envious of those people because, as I have mentioned before, sleeping in a ward is the opposite of restful or private.  

I’ve already introduced you the Fruit Lady, Clucking Man and The Inanimate One; now please may I present My Neighbour.  Yeah, not the most descriptive or imaginative name but, clearly, I was still in shock at even getting a neighbour after five weeks of private room bliss so that’s what she was named and stayed. 

My Neighbour was a fairly elderly lady with the most extraordinary ability to carry on conversations for hours with her husband whom she called several times a week (as well as him regularly visiting).  Her record – yes, I was timing her – came to three hours and seven minutes and the topics ranged from such scintillating fare as how she liked to have her hair done all the way through to what she was having for tea so it actually felt like she’d been talking for much longer. She was lucky that I was incarcerated in my wheelchair and therefore unable to sneak across to her bed, take the phone off her and then beat her viciously round the head with it.  THREE HOURS AND SEVEN MINUTES!!!!  I will never get that time back. 

On the other hand, the devotion between her and her husband was touching to observe, even if their conversations were utterly inane. It turned out that her story was a fascinating one – she had had a stroke several years earlier which had paralysed her as well as leaving her with brain damage that meant she had no short term memory.  She had spent a long time recovering from the stroke and had regained most of her movement but the lack of memory meant that she couldn’t be left on her own so her husband had taken on the role of caring for her 24/7.  As a result of this, one day when he had needed to do some trimming of trees on their farm, he had gathered up his chainsaw, a ladder and his wife and taken them all to the woods.  He climbed up a tree to saw off branches whilst My Neighbour wandered about underneath him – presumably talking about the weather or what she’d seen on telly – which meant, unfortunately, she was right underneath him when he fell out the tree and landed on her.  They both broke their backs – he in a minor, cracked vertebrae sort of way, her in a catastrophic, damaged the spinal cord, rendered her permanently paralysed sort of way.  

By now in her late seventies, the chances of her regaining any material function were extremely low. All of us in the spinal unit were accorded one hour of physio five days a week for our rehab but I never saw My Neighbour come within two hundred yards of the physio room in the months I shared a ward with her. It could have been that they considered the chances of her having a pretty fragile skeleton were high and therefore it wasn’t the best idea to have her spend hours learning commando crawling as I was doing  – just in case the Marines need to get their recruitment numbers up.  I may be paralysed from the shoulders down but I’ll have you know I can still do a mean doggy paddle and make my way horizontally across a gym mat at a rapid-ish pace.

Despite this bleak outlook, My Neighbour remained remarkably cheerful – probably because she forgot the prognosis about five minutes after receiving it.  As a result of her lack of short-term memory, she lived almost entirely in the present.  She ingested a vast amount of sugary crap almost incessantly with lip-smacking gusto that meant that when the nurses came to help her clean her teeth at bedtime, she remained in bed whilst her teeth and the nurse made their way to the sink on the other side of the room. One day whilst watching adverts on her small, portable TV, she grabbed her call button and summoned a healthcare assistant.  “Have you ever heard of them Quavers?” she enquired of the slightly nonplussed HCA, who had probably sped down the corridors to the flashing red light over the ward door expecting something more, well, urgent.  And medical.  And preferably, given how busy they were, necessary. 

“Er” replied the HCA “Quavers?  Like the ones you eat?”

“Yes” replied My Neighbour “Can you get me a pack?”

Astonishingly – and very kindly – the HCA did exactly that, raiding one of those healthily stocked, hospital vending machines with her own money. My Neighbour noisily despatched the packet at speed whilst I debated escalating her to pickled onion flavour Monster Munch just for the comedy value.  In the end, I decided against it because she already had enough bowel issues and the ingredients list on the back of a pack of Monster Munch may be what one could call ‘extensive’ but, even so, it doesn’t include fibre.  Or any actual food, for that matter.  

Her general appetite for life and talking extended even into times where she was unconscious.  At night she muttered away incessantly in her sleep; on one memorable occasion quite clearly whispering “I want to kiss you”.  Next door, in my own bed, I fervently hoped she really was asleep and not talking to me, nonetheless feeling pretty disturbed. 

Last but not least, she was even able to contemplate the loss of her home with remarkable equanimity.  The farm where she and her husband lived was completely inaccessible for someone in a wheelchair.  Therefore, like many in the ward, they faced having to sell it quickly before her discharge date came due and finding an adapted bungalow, which are extremely thin on the ground not to mention eye-waveringly expensive.  One of my other ward mates was genuinely discharged having had a hospital bed and commode set up in her kitchen – which was the only room she could get into with her wheelchair.  She was expected to live entirely in that kitchen for several months as one of the ‘lucky ones’ whose house could be adapted.  Other cannier inmates gamed the NHS system, learning that if they kept rejecting council supplied properties for various reasons, they could stay on the ward.  One man became so good at this, he lived the best part of an additional six months in our spinal ‘hotel’ before he was forcibly ejected, I think to an old people’s home despite the fact he was no more than about thirty-two.

Before they had to move out and after several months in hospital, My Neighbour was allowed out to say goodbye to her home and discuss what she wanted to do with all the furniture and effects that couldn’t come with them.  Much fuss was made of this temporary homecoming. When she returned I asked her how it had gone.  “I was only sick in my hand” she replied.  Words for us all to live by. 

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A Fox Lake Blog

The Inanimate One

One day I returned to my ward after physio to find a new inmate ensconced in the bed opposite and diagonally across from mine.  She was apparently fast asleep but striking in her appearance for two reasons.  First she was extremely pale – so much so that it was hard to discern where her face ended and the white pillowcase started.  Second, her hair was cropped very short, almost shaved in appearance.  Unlike the rest of us in the unit, who looked physically broken but not ill, this lady looked distinctly unwell. Our new resident slumbered unmoving through the rest of the afternoon and into the night where she remained entirely silent; unlike my other two neighbours who continued their creative efforts with air – at both ends.  In the morning the ever-present curtains were whipped round as nurses bustled about behind them chatting but with no answering response from the patient.  When they withdrew and the curtains were pulled back, our new neighbour was sitting upright, propped on pillows and staring sightlessly out the window beside her.  Her hands rested unmoving on her covers.  I looked at her.  She did nothing and I mean nothing.  My casual glance over became a more focused observation as I realised she didn’t appear to be moving at all.  She was preternaturally still.  Over the course of breakfast and my own curtains pulled experiences of the morning, I kept looking over to see if she had moved.  She had not.  I couldn’t even see her breathing.  Demonstrating my customary sensitivity, I introduced her to my handful of Twitter followers as the Inanimate One and went off for physio. 

When I returned several hours later the Inanimate One was in exactly the same position but now sporting a pair of large headphones.  Other than this detail, however, she was exactly the same.  I watched her out the corner of one eye for some time, waiting for some – any – sign of life.  I began to suspect that she might be the hospital equivalent of that Japanese businessman who died at his desk and sat there, unnoticed, by his colleagues for several days.  As the day wore on and I went in and out of the ward, I checked on her. She remained unmoving, headphones on, staring out the window.  In the evening nurses bustled over to her and the curtains once more rattled round her bed.  When they rattled back the IO was now in pyjamas, her headphones removed and her bed laid down so she was now staring at the ceiling. She remained like this until our lights went off, the bed curtains were drawn round again and we all went to sleep. 

The next morning rolled around, along with the bed curtains and I resumed my watch.  Today the IO was back to sitting upright, staring sightlessly out the window but, in a nice touch, someone had propped a Kindle up in one hand. I ran through all the reasons the medical staff might have for concealing the fact a patient had died.  It was a short list, mainly consisting of preserving spinal bed spaces from dementia patients but not as short as the list of reasons for then dressing up the corpse with various props.  I idly wondered what they’d do with her next.  There wasn’t much to work with on the hairstyle front, the wardrobe one wears whilst permanently in bed is quite limited and it would be, I assumed, quite difficult to get someone dead to convincingly hold a magazine or newspaper. 

This process went on for several days.  It was a little like our own theatre production.  The curtains went round, the stage was set, the singular protagonist in this case appropriately propped and then the curtains were whipped back revealing the next scene. IO in pyjamas.  IO with Kindle. IO with food tray (not consumed).  IO with a cup of coffee (ditto). IO with blanket. IO without blanket.  IO with headphones AND Kindle. Ooooh, the drama. 

Then one day I re-entered the ward and the IO was staring sightlessly out the window but now one hand flopped out of her bed and her mouth gaped loosely open.  There were no props.  Holy crap I thought, she really has bloody died.  I wheeled slightly closer to take a look at her and watched for what felt like an age.  I had just resolved to wheel myself out to find a nurse and report the IO as fully deceased when she blinked which, for her, was tantamount to rollerskating backwards and naked across the ward. Thus did the IO destroy my theory and after this she became, over the course of the next few weeks, about as animated and normal as the rest of us, which is to say, not much of either. 

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A Fox Lake Blog

The Lokomat

In the corner of the gym at my second hospital stood an incredible piece of kit – £250,000 worth of robotic walking machine designed and built by scientific whizzkids in Switzerland and one of only two in the whole of the NHS

At first I was very excited about this machine.  It had been donated to the spinal unit by a charity and quite a lot had been made of it in the media.  Online I read about my own consultant praising its rehabilitation effect for spinal patients and a case history of a lady with a cervical injury at the same level as mine who left hospital walking with crutches – much of her recovery being put down to this wondrous machine.  As you can imagine, I couldn’t wait to have a go. Accordingly, when talking through my rehab with the physios, I broached the subject of when I might get put on it. I was told that it was ‘too early in my rehab’ and, given I had only been out of bed a few weeks at this point, I accepted this.  Then I started to notice that out of the 32 of us in the unit at any one time, only two patients seemed to ever use it and they no more than once a week.  The rest of the time this miraculous machine stood unused unless you count someone hanging a coat or jumper on it.

After a few more weeks I raised the subject of me trying it again.  Once again, I was told that it was ‘too early’ but this time I pushed back and asked if not now then when would I be put on it.  Hospital rehab is estimated to be about six months for someone with my injury and by now I was well into my second month – my fourth if you counted my adventures in ICU, the HD ward and not forgetting, the ‘gym’ at my first hospital.  ‘What ASIA score are you?’ I was asked.  ‘Um,’ I replied, ‘I have no idea what that even is,’ so my ASIA testing was duly arranged (which took another week fyi).

ASIA stands for the American Spinal Injuries Association which defined an internationally recognised way to score how neurologically impaired those with spinal injuries are.  The scale ranges from A to D and is basically A = no sensation or movement below injury, B = sensation but not movement below lesion, C = sensation and some movement, D = sensation and more movement, E = normal (but only applies if you’ve HAD a spinal injury so don’t be going off telling people you’re all ASIA E after reading this.  Luckily for you, you don’t qualify for an ASIA score at all).

More worryingly, before my test, I also read up on how they were measured.  Imagine my delight to find out that remaining function was ascertained by – and I quote directly here – “light touch or pin prick or deep anal pressure”.  It even introduced me to a new acronym – VAC – which apparently stands for voluntary anal contraction. So, basically I found myself waiting in my room for someone to come along and stick either a) a pin in me or b) their finger up my arse (hopefully just their finger. There were no guidelines given as to how far counted as ‘deep’). On the bright side, this service was at least free – in establishments in Soho this sort of treatment would probably cost a fortune.  Not for the last time I waved my dignity goodbye and bon voyage.

My consultant duly arrived and, for once, his pessimism at my chances of any recovery worked in my favour since he came armed with only an official pin, presumably assuming that my VAC was going to be non-existent.  I lay on my bed with eyes closed so I couldn’t cheat while he slowly stuck the pin all over me at differing pressures and I told him whether I could feel it or not.  I performed so badly at this – ie that I could barely feel anything at this point – that he was able to keep his fingers to himself and I was accorded ASIA A status which defined me as a complete spacca. 

I took my newly acquired ASIA A score back to the gym ready, once again, to apply to have a go on the wondrous walking machine.  “Ah” said the head physio, “I’m afraid you’re too disabled to use the Lokomat.  It’s only for those who are ASIA C and D who can really benefit.”  Gutted, I wheeled myself back to my room, all hopeful visions of me gaining some much longed for advances in pieces and sat and cried for a bit.  Then, remembering a piece of advice I’d been given about the NHS – namely, just make yourself so much of a pain that it becomes easier to give you what you’re asking for than to not – I grabbed my trusty iPad and got onto the Lokomat’s official website.  Its introductory line on the homepage announced ‘Highly intensive physiological gait rehabilitation for severely impaired neurological patients’.  I investigated how severely impaired ‘severely impaired’ was.  According to the manufacturers of the Lokomat, it was suitable ‘for all ASIA scores – A-D’.  I promptly wheeled myself around and went back to the gym.  ‘Hello again’ I said.  ‘Sorry to be a pain but I’m afraid I don’t accept that I am too disabled to use the Lokomat when its own website says that it’s suitable for all scores.’  The Head Physio looked embarrassed and stressed.  ‘Look,’ he said, ‘If it were up to me, I’d put everyone on it but the powers that be have said what they’ve said and also, honestly, I simply don’t have enough people with enough time to put patients on it.  The initial set up can easily take an hour and requires at least two staff.  It’s not in my power to approve you going on it – you’ll need to talk to your consultant.’

So I booked a slot to talk to my consultant.  The same consultant who had trumpeted to the press about how brilliant a piece of kit the Lokomat was.  This took another week.  I presented my case from the website and gently reminded him of his own enthusiastic words.  ‘Fine’ he said.  ‘You can have a go – talk to the physios to arrange it.’  So I went back to the gym again where I was told that they would let me know when they could fit it in.  Another week went by.  And another one.  During this time I saw the sum total of one other person go on it.  

Then….sorry, I know this is probably tedious to read but it really did unfold like this….I was told that the machine’s licence had expired and that it needed servicing and then re-certifying before it could be used by anybody.  Otherwise, should the robotics go full Terminator on some hapless inmate, the hospital’s insurance wouldn’t be valid.  Nobody could tell me how long that would take.  In the end it was about another eight weeks and my discharge date was looming when I FINALLY got given the go ahead.  I turned up for my session extremely excited about finally getting to stand up and walk, albeit under power.  Harnesses were fitted, the robotics attached to my legs and hips, my feet put into the holders and straps adjusted to ensure the right angle and clearance.  I even had a little computer screen that simulated a road that I could imagine I was walking along although you would have had to imagine pretty hard as the simulation was crap and the screen tiny.  Instead I contented myself with looking through the big window into the Occupational Therapy room where the OTs were laughing and waving at me since everybody by this point was aware of my quest to get on the damn machine – probably because I hadn’t shut up about it for months. 

My initial set up took about 40 minutes but, often, the time consuming bit is actually when the machine starts walking you and adjustments are needed for foot drop or speed or hip angle or your body just goes into huge spasms and that stops the machine and everything has to be re-set again. The Head Physio’s hand hovered over the big, red start button. “Are you ready?” he asked.  “I bloody am” I answered.  He pressed the button. 

And I walked.  Absolutely fine.  We had to do a bit of adjustment but really, I just walked for 20 minutes. It was great to be up and to be moving and I felt so much better mentally.  I did the whole thing with a massive grin on my face and then my hour was up and I had to be released from all the kit.  My main physio did this and as she bent down close to me to undo the harness she told me ‘Well, that’s going to cause a bit of a stir.’  ‘What is?’ I asked.  ‘You weren’t supposed to be able to do what you just did.’  she replied ‘They only let you have a go on the machine because they didn’t think you would be able to use it but you kept on asking so they expected it to all go wrong and then they wouldn’t have to put you on it again.  But now as a C7 ASIA A, you’ve just walked better on it than any of the paraplegics we’ve been putting on so I don’t know what they’re going to do.’ 

‘What they are going to do in the short term’ I replied, ‘is put me on it again.’ I got two more sessions on the Lokomat before my discharge date.  FYI it took one physio, after that initial set up, no more than 10-15 mins to get me in and out of the machine leaving me half an hour to walk.  

I hoped that my experience might achieve two things – namely that I would be allowed to come back as an outpatient to use the machine maybe once a week for a bit since I had had to wait for almost four months to get on it and second, that my example might show the powers that be that they should try most of their patients on it and see how they got on.  Neither of those things happened.  I was flatly refused when I asked if I could come back and told it was ‘only for inpatients’ and, ironically I heard that it was used even less after my departure.  A few years later I tried to help a rehab centre buy it off the hospital secondhand.  Negotiations confirmed that the £250k machine wasn’t being used at all now and the rehab centre intended to make it publicly available to all – with a fee, yes but still better than it being shut away unused.  Selling it would also mean that the hospital would get money to buy kit that they hopefully would use.  It was all going rather promisingly and I had high hopes but the deal fell through when it was noted that the ceiling of the gym at the rehab centre was too low for the Lokomat to fit in.  I promise I’m not making this up.

So, how to close this chapter? I have no idea where the machine is now but I suspect that, five years later it is still sitting unused in the corner of the hospital gym. No, I’m afraid I don’t have any idea why the spinal consultants arbitrarily decided only ASIA C & D patients could use it despite what the manufacturers said.  I’ve even less idea why they didn’t change their minds when I, according to them beyond hope, hopped on it and proceeded to walk without any problem.  And I’m utterly perplexed as to why, when we demonstrated that just one physio could easily get even me on and off the machine inside the allotted magic hour, they didn’t put more patients on it because there were plenty more who fitted even their own narrow criteria. In my six months at the unit, four people used the machine and I was one of them.  I even suggested that the hospital charge outpatients to come in for sessions and use that money to pay for a dedicated physio to run the machine for them.  I was told that insurance rules meant they couldn’t do that either.

Finally, I really feel for all the physios having to operate in this type of environment. I stress that they were absolutely dedicated and fantastic but they had to operate with one hand metaphorically tied behind their backs because of the operational insanity.  If I have any advice it would be that there are now some fantastic private rehab centres available – should you or someone you love be unfortunate enough to sustain a spinal cord injury, if you can afford it, get out of the NHS system as fast as clinically possible and take yourself to one of them.  You will progress ten times quicker both mentally and physically and in an environment that is upbeat, positive and pushes you to reach your potential.