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.  

A Fox Lake Blog

Hello, are you there?

About a week after escaping the High Dependency ward I had an unexpected visitor to my bedside.  Someone dressed all in black and wearing a dog collar entered the ward, locked on to me and began her approach. I watched this advance with a sinking feeling – I am not great with organised religion (or for that matter disorganised religion either) and I had a feeling that this conversation was not going to go well.  I was not wrong – but not in the way I expected.  

She pulled up a chair, sat down at my bedside and opened up with “I understand you are someone who has come very close to death recently.”  As a conversation starter I have to hand it to her for diving right in there.   I nodded and waited.  “Did you” she asked “Feel or see any kind of higher presence during that experience?”

I looked at this lady – an ordained member of the church – and ran through the truthful answers in my head which were a) most of the time there was nothing but blackness and terror and b) one day I appeared to be stuck in a rock cavern with metallic spiders crawling all over the ceiling (once again, thanks morphine) and there was a presence sitting beside me but I was quite convinced at the time it was in fact two things – male and evil – and therefore the polar opposite of reassuring or angelic.

As these things ran through my head I suddenly realised that the vicar was awaiting my answer in a manner that suggested both trepidation and a kind of desperate hope.  When she first approached I had been afraid that I was going to receive some kind of religious-based solace, whether I wanted it or not but now I realised that she was actually looking to me for reassurance.  In that moment I desperately wanted to be able to tell her – and potentially you, dear reader – that I HAD felt a comforting presence or a sense of calm or seen a bright light or felt this outpouring of love.  But the opposite was true and I didn’t want to lie.  I shook my head and her face crumpled.  “I am so sorry” I replied as gently as I could.  “I’m afraid I didn’t feel or see anything”.

She nodded, thanked me quietly and left.  I watched her go, feeling terrible.  I have no idea what was happening in her life or career but I wish I had been able to give her the answer she was so clearly seeking. 

To finish on a slightly less depressing note I CAN tell you that, as far as I was told, whilst I did skirt quite closely the idea of ceasing to exist, I didn’t actually clinically die at any point during my experience.  Therefore we might be able to chalk up my lack of religious experience to just not trying hard enough.  However I later ended up talking to one man who did die – obviously temporarily – I have no talent for talking to the dead, although, as someone correctly pointed out, talking to the dead is very straightforward. It’s getting them to reply that’s the tricky bit. He had a huge heart attack and, as he put it, had been dead and gone when the medical team restarted his heart.  Unfortunately his time dead had cut off blood and oxygen to his spinal cord so when he woke he was paralysed from much the same level as me.  His view was that he wished he had not been brought back – that he was peacefully gone, knowing nothing and now was being forced to live a life he would never have chosen as the alternative.  

So, to finish, I have no idea where I or you stand on all this malarkey but my strong recommendation would be to live your life like this is all you’re getting.  If I’m wrong about that then you can send me a smug note from the afterlife – presumably on really lovely, scented notepaper – but, if I’m not then it would have been a terrible waste not to have squeezed all the joy you can out of this one, despite the many obstacles that can get thrown in our paths. 

A Fox Lake Blog

A Dressing Down

Getting undressed and dressed whilst immobile from the neck down and only one half-working hand is quite a performance. The thing that makes it really difficult is the lack of hands rather than the immobility.  I was once genuinely asked during a live interview with Sky about a new breakthrough in restoring hand function whether it would be – and I quote – “useful to have my hands back?”.  Given brain size and opposable thumbs are the two features that have elevated homo sapiens to the top of the animal tree, it took a superhuman feat of restraint on my part to simply reply politely ‘yes’ as opposed to rolling my eyes violently and shouting obscenities.  If you’re really bored one day I challenge you to get dressed with just one hand whilst sitting in bed without moving your legs to give you a small flavor of what it’s like to be quadriplegic.  Hint: bloody annoying.

However, wheeling about undressed is generally frowned upon, even in hospitals so dressing practice was something we were encouraged to try if we did have any arm or hand function to work with.  I spent many, many mornings wrestling with my T shirt/socks but, for a long time, dressing myself was beyond me and I had to be helped into my clothes by a member of staff.  Most of the nurses were female but we did have two male nurses at my second hospital and I was asked, when they were on duty, whether I was happy to be helped to wash and dress by them or whether I wanted to wait for a female nurse to be free.  Whilst not impugning their professionalism at all, I was at first adamant that I did not want to be stripped down, flannel washed and then re-dressed by a bloke.  It seemed an embarrassment too far and I cringed away from it.  However, I soon learned that waiting for a female nurse or HCA could mean being stuck in bed all morning, given staff shortages.  Eventually, after several mornings wasted just sitting waiting for female assistance, I resigned myself to being helped by a man instead, reminding myself that the blokes on the ward were coping with nurses of the opposite sex helping them where required without wibbling about it.

I don’t remember much about the eventual washing and dressing experience with the first male nurse other than the fact that, right at the end he told me that I could “jiggle my own bits into my bra”.  Given he had just washed and dressed ALL the rest of me, this seemed like the very definition of arbitrary and accordingly became my tweet for the day. However the most memorable dressing episode happened with Nofret.

Nofret was one of an influx of Spanish nurses recruited by the hospital in an attempt to address the severe shortage of qualified nurses from the UK. This isn’t a chapter on the dire state of nursing in the UK so let’s suffice to say that thanks to various shenanigans including the freezing of pay and the downgrading of nursing roles and authority on the shop floor, there is a huge gap in the number of nurses needed and the number actually enrolling and qualifying. Since we were still in a time where Brexit was no more than a twinkle in David Cameron’s eye, our NHS trust had sought to address that staffing lack with qualified European nurses. Nofret had just arrived into the North of England with a firm grasp of all necessary nursing requirements but absolutely none of the English language. 

Accordingly she arrived at my bedside for the morning routine one day.  We managed hello and how are you, which promptly exhausted most of my knowledge of Spanish with the exception of me being able to ask how her hamster was.  For this arcane bit of knowledge I can thank a Spanish language book I perused prior to a trip to Peru, which also, I believe, included teaching me to instruct how I would like said pet rodent cooked.  Or perhaps it was a different hamster – either way, lying in bed as I was wearing only a flimsy hospital gown and being about to attempt removing clothing, washing and reapplying clothing, it seemed the height of foolishness to introduce anything about hamsters so I kept that to myself and reverted to English.

Our first hurdle was to work out what I was going to wear.  We started well – I gestured towards the cupboard in my room, Nofret opened it and by waving at my legs, feet and top half we acquired leggings, T-shirt and socks. Now we went up a level of difficulty; how to mime pants and a bra.  I gestured at my chest like something out of a Carry On film (both hands clutching embonpoint but resisting the temptation to accompany the action with clown car hooter noises) and Nofret got the message immediately.  Knickers were slightly trickier – loath to wave too much at my nether regions for both of our sakes, I instead opted to try and mime ‘leggings but smaller’.  This did not go well.  Nofret understandably interpreted this as me wanting to change the leggings for some shorts.  Whilst it was warm in the ward, it was nonetheless still November so I shook my head and attempted to point at the relevant shelf in the cupboard.  Unfortunately, as both hands were still curled into fists pointing at all, never mind accurately, was not actually possible so what I actually did was hold out a clenched fist in the direction of the corner of the room. This did not aid the situation.   I contemplated my next move and decided that asking for more sangria, which was the last phrase I had up my not yet worn sleeve, was probably not going to help.  Luckily Nofret took the initiative and started working her way down the cupboard shelves, waiting for me to nod when she reached the right section. 

Then we moved onto the washing – by the end of which I had resolved to urgently contact Berlitz or Lonely Planet and demand they add the following vocab to their Spanish phrasebooks:

Washing-up bowl

Orange does nothing for my complexion


My trousers are on back-to-front

We’re going to need a bigger towel

and just to pass the time – are you going anywhere nice tonight?

TWO HOURS later I was up, washed, dressed and in my chair and both of us were exhausted.  I’d like to be able to tell you that my Spanish improved from the experience but this was not the case.  What did improve quite remarkably was Nofret’s English.  Only a few weeks later I heard her sail into a ward and cheerfully ask a patient “Do you want owt, love?” in a broad West Riding accident.  That’s the danger of learning your English in Wakefield. 

#Dressing practice today. If you don’t hear from me, I’m lost in my T-shirt. Call for help.

A Fox Lake Blog

The Psychologist

No-one who has been reading my meanderings will be at all surprised to learn that I know very little about psychology.  However, I had assumed that actually having a patient that could communicate in some way would make any course of trauma counseling more efficacious.  Imagine my surprise therefore when I was informed in the HD ward, whilst still intubated with my tracheostomy tubing and therefore unable to speak, that the hospital psychologist had been booked to come and give me a session ‘to help me over the trauma of being left alone for five and a half hours whilst I waited to be found after my fall’.  I received this news in (mute) astonishment since I didn’t consider myself traumatised at all by this part of the accident.  I mean, granted, it wasn’t the way I would have chosen to spend a Tuesday morning but as lying paralysed in a field goes, it could have been a lot worse.  The sun was shining, it was warm, I was close to home so I figured I would eventually be found and I was surprised to learn that it actually had been five and a half hours so clearly I had spent some of it unconscious, which is probably the most sensible way to have coped.  No, what had REALLY traumatised me was my induced coma in intensive care.  

It is difficult to relay just how confused you become and how quickly you entirely lose your grip on reality when being pumped full of incredibly powerful drugs that cause vivid hallucinations.  I am told that everyone patiently explained to me what was happening and what they were going to do to me before it was done.  I knew none of this.  What I knew is that I was trapped unable to move and not breathing. I couldn’t see anything but blackness interspersed with purple zigzag lines (occasionally yellow ones) but – and this is the key thing – I wasn’t unconscious.  I was still aware, still consciously processing, still thinking.  So conscious in fact that I remember the whole thing very clearly, even now.  To start with I was lying with enormous pressure on my face so, at some point I must have been put on my front.  I knew that I had broken my neck and that I had been paralysed.  I also knew that I was very seriously injured and that it was not at all certain that I was going to live.  I was relieved to be able to genuinely contemplate dying with the view that I had had an extremely good life and had no regrets.  Everyone I cared about knew I loved them, I’d been fortunate enough to travel widely, love my career and gather a bunch of fantastic people I am lucky enough to call friends.  But now, apparently trapped in the dark, motionless, unable to speak, with the pressure on my face, I thought I HAD died and been buried. 

My thought process went like this “Am I dead? If I’m not dead then why can’t I breathe or move or see or speak or hear anything? Why do I feel like I’m being pressed face first into the ground? And if I am dead then how long does this consciousness last? Will I be trapped like this forever? Or just until enough of my brain decays so I am no longer able to think?  I don’t think it’s supposed to be like this – there’s supposed to be either absolutely nothing or reincarnation or the pearly gates and tricky questions from a bloke with wings and a flaming sword – but what if this IS it? This horrific, trapped awareness with no relief and no escape?”  And then I felt this – understandably – huge wave of terror which lasted until they pulled me out of the coma from time to time – which was usually at least twelve hours but could have been days.  I have no idea.  No wonder people come out of ICU complete basket cases. 

Now, obviously, looking back, none of this thinking stands up to even a few seconds of logical thought but vast amounts of hallucinogenic drugs are not conducive to calm, logical thinking.  I expected to be lying in a hospital bed.  I did not expect to be consciously unconscious and I wonder now whether it would have been possible to keep me conscious but calm by hitting me with heavy doses of valium or other anti-anxiety meds rather than by trying to knock me out entirely.  I understand why intubated, ventilated patients are put in induced comas from a care point of view – it’s considered to be easier for them and for the medical staff.  Certainly I have two chipped teeth from gnashing furiously on my own tubing and staged several attempts to rip it all out – a common reaction from many patients in the same distressed situation where the brain has gone into fight and survival mode and it feels like the tubes are what is suffocating you.  However, after the accident but before the operation to piece me back together I WAS lucid enough when brought round to sign over power of attorney and to clearly remember them explaining – and putting me into – traction.  So, I put it out there that I would have much preferred to be lying in my ICU bed conscious but sedated.  MUCH preferred.  Instead I spent two weeks absolutely bloody terrified and confused and just wanting very much to actually die rather than endure this horrific, imagined half death.

All of this went through my head as I looked at the nurse.  Obviously I couldn’t say anything so I tried to convey with my eyebrows that I thought seeing a psychologist was an excellent idea because yes, I was a gibbering wreck but it wasn’t the accident per se that caused the trauma but rather intensive care but wouldn’t it be a better idea if we waited until I could, you know, actually talk back to the psychologist as that might immeasurably help the process?  I’m sorry to report that my eyebrows entirely failed to communicate any of the above so the nurse patted my hand and said “Good, that’s what we’ll do then.”

A few days later a very young girl approached my bed.  I say very young – she was possibly mid twenties but had a diffident and nervous demeanour that made her seem more childlike and certainly wasn’t the air of calm competence and seen-it-all-before experience you would like a counselor of any kind to exude. “Hi” she said, “I’m the psychologist.  I understand you are very traumatised by waiting so long to be found”.  This one was easy.  I shook my head vigorously. 

“Oh” she said “You’re not traumatised?”.  I considered.  Would it be better to nod first to indicate I WAS traumatised or would she think I was signalling agreement to not being traumatised? So then should I shake my head first and then nod it?  Or vice versa?  I nodded. 

“Does that mean you are traumatised by your accident or not?”

I nodded again.  Then shook my head.  Then gestured at my mouth full of tubing.

She frowned.  I suspect all the stats on ICU cognitive impairment were trickling through her brain.  “Do you not want to talk about it?” she asked. I gave her my hardest stare then waved my one trusty arm at my tubing again. Genuinely I don’t know whether she realised that I couldn’t talk or thought that I was just holding out on her.

“Maybe” she said “This would be better when you are ready to talk a bit. I’ll come back later.”  I tried my best to get my eyebrows to convey a world weary resignation at this piece of genius and on that note she departed and never came back.  This totalled the full extent of the psychological support I received after my accident since at my next hospital they didn’t even have a psychologist.  

Months after I’d been back at home a survey came through for ex patients from the second hospital asking whether we thought providing a psychologist would be a good idea.   I considered the feedback form.  Did I think that providing mental health support to people who have seen their lives ripped apart by the trauma of paralysis might be needed?  Those patients who, having survived awful trauma, had lost their independence and dignity, been almost gleefully told that they will “never walk again” and that “there isn’t and never will be a cure”? Those people who have seen their livelihoods disappear, lost their now inaccessible homes, many of whom have had relationships crumble under the strain?  People who, in addition to being trapped in a wheelchair, their sense of identity blown apart, are stalked by relentless nerve pain, facing a future full of uncertainty and knowing that getting older will only make things worse – not to mention the fact that they will have been told, as I was, that their life expectancy is now curtailed?  Those people.  Did I think that it might be a good idea to provide them with some psychological back up and help?  Yes, the powers that be really had found it necessary to canvas opinion on this question, which beggars belief.

If I sound angry it’s because I am.  And I’m also heartbroken that so many fellow SCI patients have had to fight their way through this horror without any mental health back up – often whilst having the very professionals who should be encouraging and protecting them, actively undermine their fragile hopes.  I have always been a relentlessly upbeat person but even I actively considered killing myself after I left hospital – not just because I was no longer able to do anything that I loved before the accident but because of the guilt I felt at dragging all my loved ones into this complete mess.  This injury doesn’t just blow apart the hopes and dreams of the injured; it rips up and tramples those of their partners and family too.  At first I was unconscionably annoyed that, given my paralysis, it was actually going to be rather difficult for me to successfully top myself.  I was fairly sure – note only ‘fairly’ – that those around me weren’t going to answer in the affirmative to requests such as ‘If I sit here, could you just accelerate at me?’ or “I can’t quite hold this knife, would you mind?’ so eventually I concluded that the only real solution would be to overdose on all my drugs at once.  Given I was on a cocktail of six at the time, with a three month supply provided of each, this was (does sums in head) a total of 558 tablets.  Whilst these would take a considerable amount of application to consume with only one working hand, the pharmaceutical collection also included peppermint pills so I would at least expire with minty, fresh breath.  It’s the little touches that count. 

In the end it was the impracticalities that stymied me.  I decided that, knowing my luck, I would probably fail to do anything more than make a bad situation worse by adding organ failure or brain damage to my collection of impairments so I just had to swallow the guilt, if not the pills and get on with it. 

FYI I ticked ‘YES’ on the questionnaire form and sent it back. 

A Fox Lake Blog

For Better, For Worse

If you’re anything like me then you probably cantered through your wedding vows in earnest but not actually expecting to deal with the ‘worse/poorer/in sickness’ bits until some time in a distant future and hopefully, not at all.  Our anniversaries were celebrated as follows:

  1. A wedding gift of a weekend in Venice 
  2. Four days on the Amalfi Coast
  3. Middlesborough to Wakefield on the A19 in the back of an ambulance.

To be fair, Himself probably realized that he had made a terrible mistake in marrying me at all when I completely forgot not only that it was our anniversary the first year but somehow failed to remember we’d booked the Venice weekend on top.  In my defence, there was the offer of a feather and leather fancy dress party on the same weekend (who amongst us would not be distracted by that?) and it had been reserved since the wedding as the gift came with the condition that we had to stay married at least a year before being allowed to go. We suspected that the donor had been burnt before with another godchild gadding off to Italy and then splitting up with their other half but we didn’t like to enquire too closely. It did however allow me to get back from Venice and immediately tell Himself he was dumped – a gag I found predictably hilarious. 

So, anyway three years in and back in my hospital I had now waved goodbye to the High Dependency ward, Clucking Man and the Murderous Ventilator and been wheeled into a general ward on the spinal unit where my ‘rehabilitation’ was supposed to begin.  For weeks I had dreamed of this moment – escaping from the pain and terror of being kept alive to gaining a relative normality and the chance to start working on recovering function.  If this seems a strange sentiment then I stress that I am, of course, immensely grateful to all the amazing staff who ensured that I am still here but let no-one think that surviving severe medical trauma is a gentle process.  On the contrary some have compared it to being aggressively physically assaulted and I have sympathy with that simply because you ARE being physically assaulted even though the endgame is saving your life rather than nicking your wallet.  As I write this during coronavirus times I have read a few articles recently on how extended periods in intensive care actually affect patients and it makes for scary reading – it even has its own syndrome, known imaginatively as, er, ‘Post-Intensive Care Syndrome’.  A study of over 13,000 patients from 26 different ICUs showed that their long-term physical, cognitive and psychological health were negatively impacted with anxiety, depression and PTSD being very common (The Intensive Care Outcomes Network aka ICON study published in Critical Care, should you wish for a source and acres of fun bedtime reading).  In addition negative effects were more prevalent in those who were in induced comas and immobilized and even worse for those who had been on mechanical ventilation. Cognitive impairments affected up to 80% of those who hit this fun trifecta with deficits in memory, attention, mental processing speed and problem solving.  To all those who said that I was ‘exactly the same’ following my own ICU stay, your names have been noted. 

Back to the rehab – I was extremely excited to now be getting out of bed and allocated an hour in the ‘gym’. I also had to build up a tolerance to sitting in a wheelchair.  Again, every SCI is different but my retained sensation meant that sitting immobile in a chair was increasingly painful and one of the largest parts of my road to being able to do anything out of bed was to slowly build up my chair time. Any observers of this exercise would have seen a girl reading magazines (books were at this stage beyond me – see cognitive impairment, above) and turning the pages with a combination of one finger and her nose.  Not a technique generally recommended but I had to use most of my working hand to keep hold of said magazine since, at that stage, like a small baby in a high chair, anything that went on the floor was effectively out of bounds.  Of course, with only half a working hand I constantly dropped pretty much everything I needed/wanted/was using so I could usually be found sitting fuming surrounded by magazines/my phone/broken biscuits/the remnants of my cup of tea. I also discovered just how difficult it is to get into chocolate bars with just one hand.  Their wrappings are plastic enough to be hard to rip open with your teeth so I spent quite a long time gazing longingly at enormous bars of Dairy Milk which, given my weight loss I was being encouraged to partake of whilst being unable to open the damn things.  

When I had progressed to be able to spend a few hours in the chair I was finally allocated one hour of physio a day and taken upstairs to the ‘gym’.  I keep putting ‘gym’ in inverted commas because it wasn’t what most of us would imagine when that word is employed.  There was a large room containing one padded table (a plinth to give it its technical name), a stationary bike and, er, that was it.  The bike was entirely unautomated and therefore useless to anyone who had no lower limb movement which, given this was a specialist, spinal unit for paraplegics and quadraplegics, immediately ruled out 95% of its theoretical clients.  It may have had some hand attachments but I’d argue that if you only have the budget for one piece of equipment in your spinal gym you might want to buy something that works on the parts of the body paralysed people can’t normally use, not the part that gets more exercise than anything else.  My other immediate issue was timing.  One of the things newly injured people get told in the UK is that there is an eighteen month window after injury for recovery.  You are encouraged to make the most of this time as you are informed that any advances you are going to be able to make will happen then and, after eighteen months,  you will have recovered as much function as you are going to and must accept what you have at this point as the end of the line.  I heard this multiple times from various experts in hospitals and I have to wonder at this point if any of them understand going by evidence rather than by widely accepted myth.  Every single physio working in the SCI field I have come across has seen patients keep recovering function years after their injury, those patients including me.  The problem however is that many patients (all right, most patients) are not as stubborn as I am and so the ’18 month window’ becomes self fulfilling prophecy when they give up all attempts at rehab once they hit that point.  Furthermore, continued rehab outside hospital is out of reach of many because the NHS provides no funding for specialist neurophysio outside of the clinical environment.  Since a one hour session typically costs between £70-80, this is just not affordable for many.  I clearly remember chatting to one young guy who had been walking with a frame when he was discharged but, unable to afford to continue his physio, had lost most of the gains he was making and spent the last ten years in a chair as a result.  I can’t even begin to imagine the mental torture of living your life in a wheelchair having got as far as starting to walk again and then having all of that taken away due to not being able to afford the treatment to strengthen and cement it.  

So, given what I had been told, I was extremely anxious to make the most of my allotted, precious hour.  Unfortunately, it seemed that nobody else was. Despite the fact that I appeared to be just about the only patient at that point who was attending the ‘gym’ and despite the fact that I had specifically relayed the fact to the staff on duty that my session started at 11am, at 10.50am I was still lying in bed in my hospital gown.  Even with two staff, it was at least a 20 minute process to get me washed, dressed and decanted into a chair and another five minutes to get me pushed to the ‘gym’.  I arrived for my first 11am session at 11.25 to be told curtly by the physio that I was late.  We then spent another ten minutes getting a hoist and sling found in order to move me onto the plinth, where I was then folded over like a pretzel to ‘stretch’ me.  I remember protesting futilely that, despite the fact that at the time I could feel less sensation, as a person who could barely reach her knees pre injury, never mind her toes, I probably shouldn’t be folded up forcibly so my head was touching my knees.   Later, at my second hospital, after complaining of consistent pain in my right leg, I was sent for an MRI which revealed a tear in my hamstring – an injury which is still causing me problems six years later not to mention issues with the use and alignment of that whole leg.  So, if you are a physio dealing with SCI patients might I respectfully note that just because you can make somebody bend like a member of the Cirque du Soleil doesn’t mean you should.  Especially when the person in question is raising concerns. 

After around quarter of an hour of ‘stretching’ I was then hoisted back into my chair and taken back to bed.  Ironically it seemed that things rarely started on time but they sure as hell ended on it.  This went on for just over a week and, try as I did, I never once made a damn session on time and I was beginning to get very distressed that this would comprise the entirety of my longed for rehabilitation.  Luckily, however, another aspect of the NHS kicked in to save me.  My spinal consultant arrived one day to inform me that my address technically fell within the purview of a different NHS trust and therefore my rehab should be funded by them rather than the hospital I was currently in. I was told that a transfer had been put in for me and that as soon as a bed became available in the new spinal unit, I would be shipped off.  I was also warned that beds were at a high premium so I would get very little notice of my move – basically as long as it took for them to find an ambulance to transport me as soon as the call came through. 

Thus started a fortnight of comedy back and forth to get rid of me.  Two days after the conversation with the consultant the first ‘we have a bed free’ call came in.  The nurses duly set about trying to organise transport for me.  This took the best part of a day and meant that I couldn’t go until the following morning – by which time the bed had been taken by someone else – a fact we learned as we just finished packing my stuff.  This pattern repeated itself with slight variations – ie there was transport but no bed, bed but no transport, neither bed nor transport – capped off after two weeks by the original consultant returning to ask me if I wanted to stay at the current hospital since I was apparently showing lots of willingness to work on my rehabilitation.  This wasn’t a hard competition to be heading up as my only rival was the elderly lady in the bed next to me who frequently made excuses to stay there and, on the two occasions I observed her in the ‘gym’,  had been lying motionless on the plinth for the duration of her session.  I hastily declined since research by Himself into the new intended hospital had revealed that it was much better equipped, boasting a proper gym, a separate physio room including one of only two Lokomats in the entire NHS (more about that later) and a large sports hall plus separate occupational therapy room.  It also had its own canteen just for the spinal patients. I didn’t know what their timing was like but it couldn’t be much worse than where I was so I opted still to go. 

Eventually the gods of irony – all very much alive and kicking during this whole experience – saw fit to bring together a bed and ambulance on our anniversary.  My mother and Himself were hastily mustered to jump in a car and drive to the hospital so that Himself could keep me company in the ambulance whilst my mother followed behind.  Packed and ready to go I was, of all things, provided with a customer satisfaction survey to rate my stay.  (In case you’re wondering I gave five star ratings to questions such as ‘how well did we keep you alive?’ and lesser scores for measures such as ‘was your stay restful?’ and the cuisine.  To be on the safe side I ticked ‘don’t know’ on the ‘do you think you will stay with us again in the future?’ part).  I did, I’m afraid, make the point about always being late for physio which I felt terrible about because I saw one of the lovely nurses pick up and read my answers before I left and, despite the fact that I had, rightly, praised the nursing staff for being bloody amazing throughout, her face fell on reading my critique.  So, let me drop my veil, nay woolly blanket of sarcasm and state for the record that all the staff were amazing and doing an incredible job under circumstances that would see most of us go a bit queasy and have to sit down.  However that does not mean that things cannot be improved – nor does the fact that improvements are needed take away from the medical staff’s dedication.  Having lived in a hospital for nine months I can tell you that there are many, many things that need fixing in the NHS and the staff are acutely aware of the fact that they work in a system that veers between capricious and bonkers most of the time.   Dealing with the organizational insanity is probably their biggest achievement.

With survey completed and bag packed, I was wheeled out to my waiting chariot and loaded in.  So it was that Himself celebrated three years of being married to me by watching the A19 go by from an ambulance on an overcast afternoon whilst being chased in a car by his mother-in-law.  I’d say that’s a whole new income stream for Hallmark right there. 

A Fox Lake Blog

Why Patients Are Called Patients

The words you dread most as a patient are not ‘time for your injection’ or ‘what’s a suppository?’ Note – this was genuinely asked of me once BY A NURSE – but ‘I’ll just be in a second’.  They will not be a second.  They will not be a minute or ten minutes or even half an hour.  No, that person will disappear without trace for quite possibly the rest of the day.  A nurse once returned to my room a day after I had last seen her with the words ‘Now, where was I?’.  That won’t be too much of a problem if they were in fact about to stick a needle in you but it presents slightly more of an issue if they were helping you wash and dress when they uttered that immortal phrase.  I was once left half naked and shivering, abandoned on my bed for over an hour by a Healthcare Assistant who vanished promising return “in a minute”.

When you require another person’s help to do anything this timewarp factor becomes by turns infuriating and terrifying.  Back when I was in ICU and still on a ventilator, the nurses would disconnect the machine to turn me to be washed.  Then, because there were always competing demands on their attention, even though it was supposed to be one on one care, they would get distracted and wander off to do something else.  For example they’d realise that their flimsy, plastic apron had torn and they’d have to go and get a new one and put it on.  On the way to the dispenser Mildred would ask them where the gauze had gone so they’d go and help her look for it and, all this time YOU WOULD BE UNABLE TO BREATHE.  A fellow inmate of mine observed that it should be made compulsory for staff to hold their breath when they disconnected a patient’s ventilator for any reason and not be allowed to take another one until they had reconnected it.  I honestly think this is a superb suggestion.  When you can breathe easily and are helping Mildred find the gauze the minutes can fly by.  When you are trapped in a bed suffocating, every second feels long and, worse, when you don’t know when the air is going to be reconnected, you can’t move and you can’t call for help, every minute is a terrifying aeon. 

I also learned the art of asking at the right time and it isn’t when the night shift have just started.  Sitting in a chair unmoving for a whole day gets increasingly painful if you have sensation, which I do.  By 6pm you would be desperate to lay down but, with their shift finishing at 7pm, the day staff are rushing to get all their tasks done.  The night shift have a thousand things to get through as they take over so, if you make the mistake of not lodging a ‘help to bed’ booking with the day shift around 4.30pm so that you are on their list no-one is going to be free to help you until about 10pm.  I can tell you that four hours waiting in pain to get into a bed you are sitting right beside is an exercise in fury, frustration and humiliation – not at the staff but at your own uselessness.  On the other hand, it is also a superb driver to work really hard at your physio so you get better at transfers. 

However, before you assume that hospitals are all staffed by people with terrible timekeeping, let me stress that no-one was more acutely aware of the time issues than the staff themselves.  In my time on a spinal ward I had many conversations with harassed nurses and HCAs desperately trying to cover the workload of twice their number as nurses kept on leaving the NHS.  Pay in 2014/15 had been frozen for some time and living costs continued to rise. Meanwhile hospital management had changed shift patterns to eke out numbers.  Previously, at my spinal unit, the day had been broken down into three eight hour shifts.  Now there were two shifts a day – 12 hours each with a half hour overlap for briefing the oncoming shift at each end.  In that 12 hours they got two 20 minute breaks – officially.  In reality those breaks often didn’t happen, especially at night when we had two nurses and two HCAs on duty.  Once upon a time there would have been four of each but with two qualified nurses you only needed two out of the 32 of us on the ward to have an issue and suddenly the nurses would have to forgo their break and work straight through to cover.  That’s if hospital management didn’t pull staff out of our unit to cover on general wards, which they frequently did. 

We had two newly qualified Spanish nurses join the unit as part of the drive to make up the UK recruitment shortfall via the EU when it was still allowed – one of them got pulled off the ward and sent to cover a ward full of dementia patients on her own for the whole night.  She was still in tears about the experience several days later when I spoke to her and swore that if it ever happened again she would resign and head back to Spain. 

Meanwhile other trained staff could work in the same hospital for nearly twice the wage choosing what days they worked if they resigned as full time staff and went and worked for an agency – so, unsurprisingly, many of them did.  

I had conversation after conversation with demoralised people just running to stand still.  Many of them felt that they were no longer able to do the aspects of the job that had attracted them to nursing and healthcare in the first place.  I heard of halcyon days when staff could spend time practising transfers with patients, could ensure that everyone had a shower every day, could do patients’ haircuts or give them a shave, could take them on outings to help them acclimatise to being in a chair, could teach dressing and other things to make them independent before they went home.  By my time, all of this had fallen by the wayside.  I had a shower and washed my hair just once a week and this was because one of the occupational therapists had kindly taken it on as her thing and she was experienced enough to be able to use a hoist by herself and senior enough to ignore the edict that they had to be operated by two staff at all times.  The rest of the time I had to make do with a wet flannel wielded out of a washing up bowl of water.  If I was lucky, two experienced staff would make short work of this, getting me up and dressed in 20 minutes.  Other times it could take an hour if there was just one, less experienced person and especially if that person wandered off halfway through with the line “I’ll just be a minute…” 

A Fox Lake Blog

Thank you, Stephen Fry

I owe Mr Fry a debt of gratitude although he will be completely unaware of either my existence or of how he helped me survive lonely nights in my first hospital without going stark, staring bonkers.  I had actually met him twice in the years before the accident – once when I randomly found myself standing next to him in the lunch queue at my university college where I played it impossibly cool by completely ignoring his presence and another time in a professional capacity when we were invited to a filming of QI in my days of working in advertising.  However, his real usefulness to me personally came without him actually being there at all.  

One of the hardest parts of being paralysed, especially in the early days in my first general ward but still when I was almost entirely immobile, was waking up in the middle of the night.  This occurred with monotonous regularity for a variety of reasons as hospitals are not restful places.  Someone else in the ward might have a problem or just be snoring loudly, the drugs from early evening can wear off, nurses on night shifts tend to behave exactly like the ones on day shift – lots of chattering and laughing coming from the nurses’ station – or you are actually physically woken to be turned.  It’s not good for the human body to rest in one place without moving and pressure sores are a danger that stalk paralysed people.  We are vulnerable to getting them and, once they appear, due to reduced circulation, it takes a very long time for us to heal.  Scrapes and cuts that would close up in a few days on a normal person can take weeks or even months to do the same.  Therefore all the patients in the spinal wards who are unable to turn themselves over in bed have to be physically turned by the nurses at four hour intervals.  

Since I spent a lot of time sitting on my arse, bedtime usually involved staying on my side to give my bottom a break from the pressure and, since I was unable to maintain that balance on my own with just control of my head and shoulders, I had to be manhandled and ‘arranged’ into a secure position to stop me flopping over onto my back.  Every four hours therefore nurses carrying torches would pitch up at my bedside and, like some covert shop window arranging operatives, would whip out a large number of pillows and bolsters and literally turn me from lying on one side to the other.  As the proxy shop mannequin in these scenarios I had little control over how I was posed. Had the nurses decided to dress me in a ridiculous outfit and hang me from the ceiling there would have been little I could have done about it.  Luckily,  if unimaginatively, they contented themselves with crossing my top leg over the bottom one to give me a prop that stopped me rolling forward, pulling out my bottom arm so it did not go entirely numb over the four hour stretch and tucking a load of pillows in behind me to stop me rolling back.  Two more pillows were put under my head to raise it slightly, my new top arm was left lying on top of the covers and, as swiftly as they had arrived, the nurses would depart leaving me in the dark. This was an efficient and necessary system but it had one major drawback.  It wasn’t comfortable and, once the nurses had departed, there wasn’t a damn thing I could do about it.  By this point I was breathing on my own (HUGE hoorah!) but my diaphragm was still paralysed and my lungs only partially working.  I couldn’t cough or shout for example and I couldn’t either operate the nurses’ call button or the TV remote by my bed. So I was trapped in the dark for the next four hours until the nurses returned for my next modelling assignment. This is not a mental or physical recipe for peaceful sleep; in fact it’s a surefire recipe for gibbering to oneself quietly (I did quite a lot of that) all the way through to a full blown panic attack. Tally of panic attacks in my life before the accident = 0.  Tally in hospital = 4, all of them at night.

Another aside – I don’t know if you have ever had to watch TV whilst having lost the remote control but another fine test of my patience was being left to watch the TV over my bed without the ability to change channels. Breakfast TV was initially a real treat after the sensory deprivation of being cut off from the world in the ICU and High Dependency wards but it is designed for viewers who dip in and out as their different morning routines dictate, not for people who are literally stuck motionless with the screen a few inches from their head for the full 6am-9am stint without relief.  My delight and thirst for news rapidly waned after the third or fourth loop of the same headlines and, particularly, the exact same weather report.  The latter was especially ironic given the weather was utterly irrelevant to me, plonked in a bed inside a hospital as I had been and would be for weeks.  I’m sure that there are far more inspirational tales of those who have recovered function from paralysis motivated by a higher purpose but for yours truly the spur for working really hard on my hand mobility at this time was entirely motivated by the desire to be able to operate the bloody remote control.  Or, alternatively, perhaps this is an apt 21st century motivator.  Back in the early 1900s anyone unlucky enough to get a severe spinal cord injury was placed not in a bed in hospital but into a coffin since that is what they were expected to shortly require, so limited were their chances of survival.  Anyway, I digress.

Back to Mr Fry – or, more precisely, enter another genius idea, this one from my mother – audiobooks.  She turned up for visiting hours one day clutching headphones and a little MP3 player onto which could be loaded stories.  Demonstrating my sophistication and literary bent, I passed over all the classics and chose to have the Harry Potter books downloaded and piped into my ears as narrated by the mellifluous and familiar tones of Stephen Fry.  At lights out in the ward the headphones would be added to my night-time outfit and the ‘play’ button pressed for me.  I would drift off to sleep, high as a kite on my various drugs as quidditch matches played out and then, when I awoke in the dark, in those early hours of the morning when everything seems terrifying, Stephen would be right there chatting about whomping willows and flying cars.  True, he had usually patiently told me all about the goings on of twenty chapters or sometimes the whole rest of the book whilst I’d been ungratefully unconscious but since I had actually read all the novels, this did not bother me in the slightest. The comfort factor of having something to anchor me and to take my mind off the discomfort and the fear was priceless.  For two weeks we worked our way through the Potter canon in probably the most random fashion due to the nurses and I struggling to remember which chapter or book we had started or finished on and my habit of falling asleep regularly in the middle of it but I can tell you that it is impossible to panic with Stephen telling you a story.  

After a few weeks of much better sleep and remote control motivated hand therapy, I had regained enough movement in a few fingers to be able to press buttons or, as sometimes was necessary, to hold something whilst I used my nose or chin. This now meant I could now operate the call button at night and this small piece of independence and ability to make myself known to the nursing staff even from the far, darkened corner of my ward, meant that the night-time fear receded significantly. But still, from the bottom of my heart, thank you, Stephen Fry. 

A Fox Lake Blog

Please Be Upstanding

After being horizontal for weeks, the day arrived when a consultant turned up at my bedside, surveyed me for a bit, spoke to the nurses in High Dependency and then told me that it was time I was put on the tilt-table.  “The what?” I said, in my Dalek voice, whistling through my speaking valve.  “I thought” said the consultant “you had expressed a wish to get out of bed?”  “I have” I responded “but I thought I’d be doing that in a wheelchair.”  The consultant rolled his eyes and explained that, having been horizontal for so long I could not be simply whipped out of bed and stuck in a chair as I would just immediately pass out.  Yet another consequence of a cervical spinal cord injury is having very low blood pressure and in combination with lying down for a considerable time, any physical elevation greater than a few pillows would see me swoon like a Victorian maiden within seconds. Therefore I would have to be reacclimatised to a semi-vertical state a bit like astronauts are acclimatised to G forces via enormous centrifuges but in a lot less exciting manner.  NASA would certainly laugh at the tilt-table.  It was, as its name suggests, a table that tilted.  It also had a few straps to stop people tilting out onto their face on the floor but that was the full extent of its technical complexity. 

Now, before we begin I need to do a quick rundown of blood pressure ranges, for those of you not au fait with what constitutes ‘normal’ through ‘this one’s about to faint’, ‘this one is definitely unconscious’ to ‘this one’s probably dead’.  If anyone is interested in my scale the other way it goes ‘this one is a bit stressed’, ‘this one is me fighting with a carpark ticket machine’ and ‘this one’s head just exploded’, just FYI. 

Blood pressure is measured in millimetres of mercury (mmHg) and is given as two figures – systolic pressure, the pressure when your heart pushes blood out and diastolic pressure, the pressure when your heart rests between beats.  These are shown as one over the other – ie an ideal blood pressure is considered to be between 90/60mmHg and 120/80mmHg.  High blood pressure is anything 140/90mmHg or over and low is considered as 90/60mmHg or under.  For the purposes of this story you may now immediately forget the high blood pressure stats as entirely irrelevant.  We are not going to be frolicking in that ballpark.

The procedure for the tilt-table was pretty simple. it was brought alongside the bed and the guinea pig (ie me) slid across from bed to table.  Like a lunatic in an asylum I was then affixed to the table by the means of leather straps around my chest, waist and legs and a blood pressure cuff attached to my arm.  From horizontal a small dwarf (it might have been a physio but I couldn’t see to verify and a dwarf would have been in keeping with the whole medieval torture chamber vibe) would work a crank handle to bring the table through various stages of tilt until a full vertical was achieved and whilst I was winched through the various angles my blood pressure would be taken at each interval to assess how I was coping and that I was not about to vomit or pass out or both.  Nobody is expected to get to vertical on their first go and the idea is that you do a session each day, slowly building up your tolerance.  My session did not start well when my initial, still horizontal blood pressure reading was taken.  I can’t remember what the diastolic reading was but the systolic was 76mmHg.  Consternation ensued as there was some general rule of thumb that if the patient’s blood pressure was lower than 80 then the experiment, sorry, exercise, had to be immediately stopped.  Noises were made about abandoning the whole attempt and putting me back in bed.  Dalek-voiced me was, luckily, able to interject at this point.  “If my blood pressure is already too low to go on this then how on earth is it going to get any higher?  I can’t stay in bed for ever”.  There was a silence so I helpfully added “Besides, it says you have to stop if my blood pressure is below 80.  It doesn’t say anything about not being able to start.” Let no-one say I wasn’t learning how to navigate the NHS. Everyone looked at me, then at each other.  Then they exchanged medical looks that could be basically translated as “f*ck it, let’s give it a go’

There was a creaking noise and I was slowly tilted about six inches.  My blood pressure was taken (still 76) and I was asked whether I felt faint.  I didn’t.  We cranked another six inches, BP dropped to 73, there was some flapping, I loudly told everybody I felt FINE, thanks so we carried on. Rinse and repeat another couple of times. There was however a slight hitch in my assurances – I had never fainted before so I had no idea of the warning signs and, in my attempt to get vertical as fast as possible so I could get out of bed into a chair,  I *might* have been exaggerating how well I felt.  To be fair I probably should have worked out that a loud ringing noise in both ears was not ideal, especially when coupled with my vision going white and a rising tide of nausea.  In the end however my attempt was stymied on the fifth tilt when my bp dropped to the low 60s and I apparently turned grey with blue lips whilst still declaring, by now somewhat feebly, that I felt fine despite not being able to see or hear properly and being on the verge of upchucking rhubarb yoghurt over everyone.  I was hurriedly returned to my horizontal state and then to bed,  much to my annoyance. 

Ultimately it took a few goes on the tilt table over the next days before I became completely vertical.  I still caused much medical consternation with my ridiculously low blood pressure but we reached a compromise whereby, probably very much against  guidelines, we ignored the verifiable data of the bp cuff in favour of just taking a judgement call on how grey or not I had gone before desisting. Once upright I then had to literally stand around for increasing lengths of time to get used to it.  This led to some alarmed looks from various ward visitors who had to walk past this bizarre figure randomly strapped to an upright table, still garbed in a natty hospital gown.  Some would smile at me nervously and some would just stare rudely. I took great pleasure in saying “Hello” cheerfully in my Dalek voice to the former and “Exterminate! Exterminate!” to the latter. Arf.

Eventually I succeeded in being allowed into a wheelchair and my exploration of the hospital beyond my HD ward began. I remember the first trip very clearly – Dad took me to Costa where I got to order a mango smoothie and sit chatting at a table once again like a member of the human race.  I couldn’t move below my shoulders and only had one half-functional hand but I was up and I was dressed and a kind nurse had done my hair and I wasn’t bloody dead.  Given what I had already been through, that felt pretty good to me. 

A Fox Lake Blog

The Barbara Bus

As you may have noticed I am attempting to give all of my chapters amusing or, at the very least, intriguing headings.  With this chapter there was no need for me to make any effort whatsoever because the Barbara Bus was already called, well, the Barbara Bus. For those of you not in chairs the idea that the average car and person in a wheelchair are not terribly compatible sizewise has probably never crossed your mind.  One of the key skills you have to learn as a person in a chair is how to transfer to other places like your bed or a plinth or into a car.  The lower the injury and the more upper body function you have and – not to put too fine a point on it – the less you weigh the easier this is.  For me, with a cervical injury and limited hand/arm function and absolutely no torso function, transferring anywhere at this early point was something I was not very good at.  Whilst I weighed barely six stone, I was still very weak and my muscles terribly wasted.  One of the key initiators of a transfer is to get your weight to a tipping point which you then use to lever yourself out.  This is usually achieved by first leaning your head and shoulders forward which, in my case, saw me simply topple towards the ground headfirst, the talent that had got me here in the first place.  So, crap/dangerous as I was any transportation of me would require a vehicle big enough into which I could simply be wheeled, chair and all.  Enter the Barbara Bus. 

The BB was the inspired idea of S.U.R.F (Spinal Unit Recreational fund), the hospital’s own charity to provide outings for patients of the spinal wing.  Run by current and ex patients and kindly staffed by the nurses and healthcare assistants in their own time, the charity had raised enough money to buy a minibus which had been specially adapted to take a wheelchair and occupant along with a number of their friends and family.  It had been named after the Barbara who had helped raise most of the money for it and was in high demand given there were quite a few patients in the wing like me who had not mastered their car transfers.  The BB was our only available method of transportation if we wanted to go out of the hospital and experience some of the outside world again so getting hold of it for the day or evening involved having to be pretty quick getting your name down and booking it.  I had been in the hospital several weeks before I even found out about the bus and it was several more, involving form filling in, the attending by Himself of a training course and production of driver’s licenses and insurance forms, before he was pronounced safe to drive and I managed to book a space.  After three and a half months of being incarcerated I was finally getting out.  Where did I choose to go for this momentous trip?  Leeds.

The Saturday finally rolled around grey and cold and it was the temperature that first hit me as I was pushed out of the doors.  Hospitals are usually super heated and having not been outside in in over a hundred days, I hadn’t experienced anything lower than a steady 30 degrees for some time.  The second thing that assaulted my senses was the air – it was moving, the breeze hitting my face and moving my hair about.  This isn’t something that happens to you inside a hospital ward either – at least, not unless you’re really unlucky.  It felt both incredibly normal and very alien at the same time.  Finally, I could smell the outside.  Car fumes, wet tarmac, damp earth – and the noise – birdsong, traffic. I felt overwhelmed and terribly vulnerable, trapped in my enormous hospital chair that I could barely push myself along smooth hospital corridors.  Outside even that tiny bit of independence was taken away as the ground is neither smooth nor flat in the real world. Pavements are full of cracks and uneven paving stones that trap the small front wheels on a chair, most are on a camber to allow rainwater to run off and even the smallest incline, probably not one you would even notice on foot, becomes a herculean struggle.  On the other hand, gentle down slopes see you gathering alarming speed like an out of control juggernaught without brakes or any of those nice run-off pits filled with sand.  I clutched my knees – rugged up like those of an old lady – to stop myself being tipped out and allowed Himself to push me to the back doors of my chariot.  He opened the back door.  I sat there shivering.  He then climbed inside and started unfolding ramps and pulling levers and unravelling long lengths of seatbelt webbing ending in metal clips.  This continued for about ten minutes.  Then my wheelchair was carefully positioned along the assigned wheel ramps and, with unnecessary straining noises, Himself wheeled me up into the back of the bus. Once ensconced my brakes were applied and then I waited another ten minutes as the requisite safety tying down took place.  Levers were locked into position, webbing threaded through my wheels etc – suffice it to say that, by the time the process was completed, that wheelchair was not moving, even if we hit a wall at 70mph.  There was just one teensy thing that the safety police had overlooked – the fact that I was not attached in any way to my wheelchair.  There I was, quite literally on the loose, raised on a platform at the back of the bus with an unimpeded trajectory of approximately 15 feet to the windscreen.  My precarious perch was made even more so by the fact that I had no hand grip to hang onto the arms of my chair nor any torso control to stop myself lurching in whichever direction the Barbara Bus turned.  Himself, a veteran of no less than four Speed Awareness courses, clambered into the driver’s seat.  “Ready?” he shouted cheerfully and not waiting for my answer, he set off.

Having a solid back to my chair, this initial momentum merely threw me backwards into it.  Braking to exit the carpark saw me scrabbling to stay in the chair and the initial turn out of it left me hanging off one side.  Fifteen feet away, oblivious at the front of the BB, Himself hummed cheerfully as he accelerated away up the road. From my lofty position I had an unimpeded view of what was coming as we bore down on a roundabout.  The brakes went on again, I scrabbled, we hung a left into the roundabout and I hung out of my chair to the right.  We went round the roundabout fairly swiftly, the momentum of which pushed me back up and then we were off once more.  My brain, institutionalised as it had been indoors for three and a half months, struggled to compute this tidal wave of light, noise, open space and, most of all, momentum. I felt much like someone plucked out of the 17th century and placed in a modern motorcar for the first time.  “Could we”  I gasped, breathlessly “slow down a bit?” It was here I encountered the other drawback of the Barbara Bus.  It’s a bus.  So Himself could not hear my querulous pleas from the back over the engine noise and vast distance between us as he barrelled along.  With my excellent view I watched the motorway slip road loom and we accelerated away up to a brain-frying top speed of 65mph. Never has anyone wanted to get to Leeds more. 

A Fox Lake Blog

Learning To Breathe On My Own

Terrifyingly I actually already knew that the above heading was a song title by Nerina Pallot, which only goes to show either how full of utterly random junk my brain is or an extremely questionable iPod collection – possibly both.  If you google this phrase (and I have – no stone left unturned on this research front) you will find that it is indelibly associated with freedom, independence and a oneness of body and soul.  It is also portrayed as a peaceful and enjoyable experience.  In my case this is half true.  Attached as I had been to a) one half-hearted ventilator, b) one over-enthusiastic ventilator and last by by no means least c) one murderously silent ventilator that kept trying to kill me, the concept of literally learning to breathe on my own definitely heralded freedom, independence and the inevitable mixed emotions inherent in parting from the dessert spoon that had saved my life.  It could not, by any stretch of the imagination however, be described as ‘peaceful and enjoyable’.

(It wasn’t the most painful experience I had in hospital though.  That honour was taken, by some considerable margin, by the experience of having my hair brushed after being in the ICU.  If I tell you that its competition includes having holes drilled into my skull, inserting screws and hanging weights from them to put my neck into traction and straighten it out, that might give you some idea of the scale of the pain. Two weeks of lying down, thrashing my head about and sorely neglecting my grooming routine left my hair tangled, knotted and matted with God knows what.  No less than three members of staff descended on me armed with comically named ‘detangling’ combs in one hand and bottles of some kind of unguent in the other.  I was liberally squirted with liquid and then they set to.  Out of the kindness of their hearts they were trying to save me having to have the whole lot shaved off but after three or so hours of having my hair tugged and pulled my scalp was screaming and I would have willingly waved goodbye to the whole bloody lot if – as ever – I had been able to speak and make my wishes known.)

The first attempt in removing me from a ventilator actually came very shortly after the accident.  Before I had gone into the op to stabilise and rebuild my neck, I had been able to breathe unaided – hence why I had survived the 24 hours between hitting the ground and being wheeled into theatre.  Intubation from the surgery was not a viable long-term solution so I either needed to go back to breathing solo or go back into theatre to have a tracheostomy.  The attempt to do the former was carried out with military efficiency and a corresponding military ‘cuddle factor’. Drugged up to the eyeballs I was roused from my induced coma, someone loudly instructed me that I was to breathe and, without further ado, my tubing was pulled out.  I tried to suck in air.  Nothing.  I tried to suck in air again.  Still nothing.  I sat with my mouth comically opening and shutting like a landed fish to much the same effect.  “Come on, come on.  Breathe!” admonished the consultant on duty as though I were merely being recalcitrant in failing to supply my lungs with critical oxygen. “Try harder!” he instructed.  I miserably failed again.  The consultant tsked at me and unceremoniously the tubing was shoved back down my throat.  

As it turned out, operating on or around the spinal cord, however carefully done, can cause more trauma and shock post surgery and this is what happened to me.  I went in able to breathe, move both arms and use my right hand.  I came out completely paralysed from the neck down with both hands curled into unusable fists.  The day after my landed fish impersonation a hole was cut into my trachea through my throat (the aforementioned tracheostomy) and the ventilator tubing attached to that rather than being through my mouth and down.  I can report though that this was done with anaesthetic and a scalpel by a proper doctor and not violently with a Bic biro by an untrained but yet bizarrely knowledgeable action protagonist like in most movies.

Cut to nearly four weeks later and it was time for take two.  This version was hugely aided by the fact that I was now fully conscious and grimly determined to rid myself of my ventilator.  My one ambition in intensive care had been to be able to take a lungful of air – it’s extraordinary not to mention sobering how much the horizons of your desires contract in extremis – and I hung onto this thought as the nurses prepared to disconnect me intentionally this time.  The plan was that I would build up my capacity in five minute segments twice a day meaning that, on the first attempt I had only to manage for five minutes with a nurse right beside me.  As it turns out, the secret to learning to breathe on your own is to not try too hard.  It might not look great on an inspirational tea towel but it is effective.  Calmer and under control in a lit room, I found that I was able to breathe very shallowly as long as I didn’t get panicky or greedy and try and suck in too much air.  The panic however still hovered at the edges.  Trying to activate intercostal muscles that had not been used for weeks was exhausting as was employing the willpower required.  I lay grimly watching the clock on the opposite wall tick away the slow minutes, determined not to give in early but also very eager to get to the end so I could stop. 

The rest of the week went the same way and by the end of it I was happily disconnected from the ventilator for more than half an hour twice a day.  I then upped the ante, jumping straight to an hour as my next target.  I was spurred on by the news from a consultant that, on average, this process took around three weeks before people could breathe unaided all day so I worked hard – if sucking in air grimly whilst watching a clock can be classified as ‘working’ – to get to the full day goal in under two weeks. There was also one other major advantage to being able to inhale on my own – at least, to me if not anyone else – I got my voice back.  This was done by means of what’s known as a ‘one-way speaking valve’, an accurate term in my case as, once I started talking again after nearly a month of enforced silence, no-one else was getting a word in edgeways.  However, the ‘one way’ bit is supposed to refer to the fact that the valve only opens to let air in.  When you breathe out, the valve closes thus forcing the expired air to pass out the only other available exit – up the trachea and over the voicebox, enabling speech.  It doesn’t look like much, resembling a type of grey, plastic plug that goes into the tracheostomy hole but oh boy did it mean a vast amount to me.  Not only did it restore my power of speech but as well as my similar inability to negotiate stairs, it gave me a voice like a dalek.  In these creepy tones I immediately took to cross-examining my mother (who happened to be the first unfortunate visitor present when they put the valve in) as to just what the hell had happened to me since I fell off the horse.  I was astonished to find that I had effectively ‘lost’ three weeks of my life and that we were now well into August, disappointed to learn that there had been no party in the ICU involving plastic bananas and a giant pair of scissors (or so she claimed), heartened to be able to actually start reasserting a tiny amount of control over my circumstances and vitriolic about the food.  The speaking valve also helped enormously with my breathing exercise since whilst rabbiting incessantly I stayed distracted and relaxed so the time off the ventilator flew by.  No doubt my interlocutors had an inverse experience and I suspect that some may have entertained thoughts about hiding the valve at times but, in my defence, I did at least demonstrate a greater conversational range than Clucking Man, if not his sense of timing and occasion.

Unfortunately all this chatting and breathing did not mean that I could remain off the ventilator overnight – sleep apnea is common with cervical injuries and I was too much of a newbie at this breathing lark to be allowed to stay nocturnally unconnected for another week.  I WAS, however, able to bid goodbye to the spoon at this point.  I’d like to tell you that we had a small party with champagne in paper cups and an impromptu speech encompassing the spoon’s best bits but what actually happened is that, much like a dodgy ex-boyfriend, it didn’t get bandaged into my hand one night and disappeared without trace, leaving no forwarding address.