Brain Attack Music

A true story of stroke survival

Driven To Tears

I have been asked about what it was like having an ABI (Acquired Brain Injury), and how did I cope with suddenly being very, very ill?  It’s a fair question.  It’s also incredibly hard to answer.  I see it more as a ‘series of defining moments’ rather than just one Big Bang of realisation.  There are also two elements at play.  The physical and the emotional.  Plainly, from a physical perspective, it is a Big Bang event that means the transition from Full Health to Meagre Health is fairly immediate.  Waking up in a hospital bed connected to a plethora of tubes emanating into (and out of) your body and being unable to walk is blindingly obvious, after the initial confusion has worn off.  However, from an emotional (or mental) perspective, the understanding of the transition from Full Health to Meagre Health is much more gradual.  What has happened, suddenly and without warning, is just too massive to comprehend, too much to process in one lump.  You can’t take in the enormity of the event straight away – it’s just too big.  Which is why I refer to these ‘series of defining moments’.

With this in mind, my first ‘defining moment’ came in hospital.  Just to set the scene for you, I was still in the Neurosurgery Ward following my brain surgery.  I had been told I’d had a major stroke (whatever THAT meant – I had no idea at the time) and, due to complications, I’d had emergency brain surgery which I knew nothing about.  (As an aside, my wife and eldest son were with me when I signed the consent form for the surgery.  A strong, definite signature according to my son.  I have no memory of signing this form whatsoever).  Now, the brain surgery part sounded pretty serious.  But, it’s just a surgical procedure, right?  No worries there.  I genuinely thought I’d be back at work in a few weeks.  At that stage, the only time I had left my bed was when I needed to go to ‘number twos’.  I had a catheter fitted so ‘number ones’ were not an issue.  At this time I also had a drain tube coming out from the top of my skull, another at the base of the skull (at the back of my head) and an IV in one arm and some kind of monitor in the other.  Five tubes in total.  The trip to the toilet for ‘number twos’ involved a nurse helping me on to a commode, then wheeling me to the bathroom, manoeuvring me over the toilet, and then we all hoped everything was ‘in alignment’ and that my aim was true (as Elvis Costello once sang).  I felt a bit like a bomb aimer in a Lancaster bomber, circa 1942, somewhere over the Ruhr at 15,000 feet peering down trying to see the target before yelling, “Tally ho!  Bombs away, skipper!”.  (“Did we hit the target?  Over”.  “Not sure, skipper.  It’s a bit of a mess down there.  Over”.)

Whilst lying in bed every movement was fraught with danger as the tubes would get tangled up, caught in the bedding, caught in the side rails, caught up in me, etc.  To avoid this, I would try and lie as still as possible and I became transfixed with the guy in the bed opposite me when he was getting in and out of his wheelchair.  He wasn’t a brain attack survivor.  He’d just had an operation to remove a brain tumour (remember, this was the Neurosurgery Ward, not the Stroke Ward).  I studied how he got in and out of the wheelchair, thinking that I’d have to learn this as I’d soon be in one.  This simple task was made hugely difficult by the fact that, a) I am short-sighted, and b) I couldn’t wear my glasses as I had double vision and had yet to have corrective prisms fitted over my glasses by the Ophthalmologist.

I wondered how I was going to get on at home with a wheelchair.  I had no idea if the doors were wide enough.  We lived in a single storey house so I didn’t have to worry about stairs.  I used to plan (in my imagination) how I would get from our lounge, down the hall to the bathroom and then a bit further to our bedroom.  When you can’t really move, there’s not much else to do but think.  I reckoned that, if I was able to stand and maybe shuffle a bit, I could do it by moving from one piece of furniture to the next, with the odd door frame and wall thrown in for good measure.  (It never occurred to me that a walking stick or walking frame might be a better option.  It just didn’t register).  Many an hour was whittled away by thoughts like this, imagining myself at home getting from point A to point B to point C, all in my mind’s eye.

So, back to my first ‘defining moment’.  After a few days, one by one, the drains/tubes/IV/catheter, etc, were removed.  Being tube free made mounting and dismounting the commode much easier.  Although my manoeuvring technique had improved I could not say the same about my aim.  That was still very much hit and miss, with a much higher percentages of misses.  One day a nurse said to me, “Do you want to try walking?  We’ll help you use a frame”.  Yeah, bloody right I do, mate!  Let’s give that a go.  Having got myself to the edge of the bed, I had the nurse on my left, my wife on my right and I shuffled into position for using the walking frame.  At this time my balance was pretty awful with what I called ‘The Force’ pulling me to the left.  Imagine a lead weight attached to one side of your head, plus a strong magnet pulling you the same way and add to that the room spinning violently around (plus the double vision) and you have some idea of what it was like.  Something like being completely drunk whilst on a fast moving roundabout in an earthquake and wearing goggles which have been smeared with vaseline.  I guess the distance from my bed to the bathroom was probably no more than 15 yards, but it felt like a marathon.  I nearly fell several times.  All I could do was shuffle forwards six inches at a time whilst swaying around like a tree in a hurricane.  When I made it to the bathroom, I was totally exhausted and promptly burst into tears.  I cried for about 5 minutes, saying to my wife, “If I can do this here then I can do it at home, and I don’t need to be in a wheelchair!”.  I was profoundly emotional.  It was a great release.  The nurse offered to get a wheelchair to take me back to bed.  I refused, composed myself and managed another Herculean effort to get back to my bed, where I collapsed in a heap totally exhausted.

As I said earlier in the piece, this was my first ‘defining moment’.  The realisation that I could be mobile (sort of) and claim some degree of independence.  However, at the same time, I was now acutely aware of just how serious this all was, how limited I was physically and how much effort was involved in something I wouldn’t even have thought about a few days earlier.  I slept well that night.

Over the coming months, there were more of these ‘defining moments’ which will be the topics of further blogs.

Until next time,


“My comfortable existence is reduced to a shallow, meaningless party”