Coming out to Contrasts

The walk away from the team in the D8 ward was emotional and frightening. It was only the length of a corridor to the lift and then down to the exit. I’d been walking the same distance for the last few days, over and over. I was gaining confidence with each step and there was no way I was leaving in a wheelchair. I needed to prove to myself and the team who’d given be back so much, how far we had come together.

Who’s scared of lifts?

Well, never me before, but it was a new, unpleasant, nervy, sweaty experience. Reaching the ground floor and the stop felt like gravity had been turned up to maximum to make it more difficult.

And then it was just the short walk down the slope past the MRI unit and I was facing the outside world.

Outside.

And the world had been turned up, with all the subtlety of a three button TV from the seventies.

It was like being six again. 1972, at home in Oxford and lucky enough to have a colour TV. The priests from the Catholic Church across the road were with us to watch the Leeds Vs Arsenal FA Cup final and one of them was an Arsenal fan. With sisters Rachel and Sarah, we were allowed to drink an extra weak version of shandy from our Pewter Christening mugs, but secretly hating every sour mouthful.

Leeds scored and the priest said “The Bloody Arsenal”

Time stood still.

A priest had sworn.

In front of me.

Over a football match.

In that moment, the world that in those days only had three buttons, got turned up.

Colour, contrast and volume.

And it was the same walking through the doors to the outside world, weeks ahead of every schedule the consultants had discussed as possible.

The world had been turned up.

The noise was deafening. Cars sounded louder, birds tweeted more cleanly and I’d discovered a new level of surround sound I didn’t even notice before.

The colours just looked brighter. Unnaturally bright. I’d been looking through tinted hospital windows for two weeks, but still the colours were bigger, bolder and brighter than I’d ever seen, or maybe ever noticed before.

And the contrast. Every edge was sharper, every outline more defined and every object moving across the other with unbelievable clarity.

But it was also clear that every one of the steps back to the car was not going to be as easy as those flat, smooth practice steps on the ward.

With each step, I realised I was getting no feedback. Nothing coming through my hips and no idea of my foot position without looking down. I was walking, but it was a different walking. More based on throwing a leg forward and hoping the other would follow than walking as Toud know it. A 300 metre walk that previously would have been a minor annoyance was a genuine challenge to overcome.

I grinned and cried and sweated my way back to the car a very happy man and poured myself backwards into the passenger seat.

Home and the British Red Cross

Coming home after a period in hospital, is only possible if you’re going back to a place that is safe. It seems to be the biggest potential backlog in the whole system. I’d had a sensible discussion with an Occupational Therapist in the hospital and we’d agreed what was needed at home.

  • A chair I could get in and out of easily
  • An extra support cushion to help with the pins and needles
  • Frame around the toilet
  • Handles for inside the shower
  • Shower stool

The rest would be okay.

The first three were easy. The British Red Cross can loan you those and delivery had been arranged for that morning with just 12 hours notice.

Amazing. A service I didn’t know they offered that allowed me and others like me to get home and stay there.

The shower handles are another matter altogether.

Six weeks for an OT visit to home to even assess suitability. How can that make sense?

We are lucky that we are able to just order these things for next day delivery on Amazon and then have a lovely brother-in-law who will pop in, test them and fit them. But for an old person coming home to an empty house with no support, if they were half as scared as me, but critically, without the incredible level of support I have received, it would be terrifying.

It’s not surprising that many come back in again after further accidents or incidents. It’s not the fault of the OT team who are doing everything they can, but it just has to become more joined up to work better for everyone involved. The teams in hospital work so hard to get people back to health and then it’s the contrast again of the real world and all its delays taking over.

It’s the same with the Physio. My operation and time in hospital must have cost a fortune. Who knows £50K plus? Yet, I leave with a pamphlet about my physio and the next appointment three weeks ahead. There’s a risk of undermining all the hard work and expense for a few extra £’s of resource at the right time.

Facing my Nemesis

Before I was allowed to leave hospital, there was still the small matter of the MRI scan that was still outstanding. It had been delayed and delayed, mainly because of my own fear of going in again without a general anesthetic. The threat of being kept in longer, just to wait for the scan, did win through in the end and I agreed to go in anyway.

Even with a 06.00 start, there’s a lot to get done before a 10.00 scan and the morning was a flurry of toast (lovely toast), tablets, monitoring and uncomfortable toileting. (a bungalow leaves some marks on the way out you know).

And then it was upon me. As much as I tried to walk, they made me go down in the bed. I don’t think this helped much, but the porters were great, chatty fellas and definitely eased any tension.

The Porter blocking the gates to hell

The question for the last few days, months and even years was whether I was unable to cope with an MRI because I was too fat and claustrophobic or whether it was genuinely through pain that I struggled to cope.

I’m not sure any of the consultants or MRI operatives previously had ever believed me how painful I found it. But I knew that the pain of an MRI was nothing to do with being in my head and everything to do with what was going on in my spine (and obviously had been for the last three years or more).

Facing the MRI machine

And then it was on. I was loaded into the machine and waited for the pain to land.

Nothing.

No pain at all.

I have to say life inside an MRI machine is much easier when you have someone talking you through the cycles. it breaks it down into four minutes segments, rather than one huge 50 plus minute nightmare of pain, doubt and disorientation. When you’re alone inside a machine with no communication for over an hour, you start to wonder whether they are still even out there. It’s not a nice feeling at all.

If you’ve never had an MRI scan, imagine being inside the world’s snuggest fitting and loudest microwave, being bombarded with magnetic waves and slowly being brought to a light simmer through the defrost programme. It slowly heats you through to the core and for me previously, had just become more and more painful as time ticked by. A full spinal scan can easily take over an hour and no sedative or even Oramorph (morphine) had been able cover the pain I’d previously endured.

But the consultants had staked their professional reputation on this not hurting. To quote them “If this hurts, then we’ve not done our job properly” and they had been right with everything else so far, so I was happy to believe them.

And as proof it was different this time, it was the first time in my slightly sedated state I’d ever heard the patterns before. Each cycle plays a different beat and to each beat you can overlay patterns and with the patterns, there are words too.

The first pattern was an obvious one

Bad back, bad back. Bad back, bad back. Over and over again.

Then came Holly, Holly, Holly.

And finally, downtime, downtime, downtime.

And then it was over. Almost as soon as it started. It was done. I’d beaten the MRI machine for the first time in three years. Zero pain and to be honest, zero actual discomfort.

For the first time, I was starting to believe that life after this could even be better than before, even with a little bit less mobility as I was pain-free. Maybe for the first time since my teens.

If you’ve lived with low-level grinding pain for a long time, you can imagine what a feeling of hope and optimism this offers.

Life was still going to be different, but life was going to be good, in whatever format it existed.

Catheter Time (Not like Hammer Time in any way)

Have you ever had a catheter in for a period of time? No me either. 

I wouldn’t recommend it. It’s one of the most unnatural feeling things you could ever imagine. It was put in before the operation and still in place all those days later. To get home, it had to be gone too. To just lie there and not be aware of the fact you’ve filled a bag hanging below your bed with wee is one of the clearest signals that you are not in control. Your body isn’t doing as it’s meant to and you’re not even involved in the most basic of decisions – drainage.

So I was pretty clear in my head I wanted it gone as soon as possible. But even removing it, became a week long process of retraining my bladder to fill up, teach myself again to know when it was filling up and emptying it regularly enough to not cause damage to your kidneys through backing up the system.

Since the day after the op, I’d been in this training mode and using what’s called a Flip-Flo Valve where you control your own drainage rather than aimlessly allowing your body to empty itself into a bag below the bed. It’s basically a tap on the end of the tube that you empty every 1 hour, two hours or four hours, depending on where you are in the training programme. When it’s not in use, the tap is literally strapped to your leg as a reminder of your own lack of control. 

Seven days on, training completed and it’s time for the removal. 

If you’ve ever swept a patio or decking when it’s wet and you’re pushing water ahead of you with an uncomfortably wide brush. It’s a bit like that, but coming from deep inside your body. Almost like someone pulling an umbrella out of your nasties when you know there’s a rush of water ahead of it. It feels like you’re uncontrollably wetting yourself, when you know you’re not. It’s over in moments and the relief of it being gone is without doubt worth the discomfort of the removal process.

Life after a catheter is a much simpler but initially quite nervy affair. I don’t remember wetting myself since the Vodka incident at university and I didn’t want to start now. It’s like a game of chicken with your bladder.

How long do I dare hold on before I go?

Man nappies were on hand, but remembering what a full bladder actually feels like when you only have partial feeling right across your middle is another new skill to learn.

Two cups of tea later and I was ready for the first test.

To ensure everything is working okay, you have to have a bladder scan first and mine measured 750ml. A decent pint and a bit.

I was good to go, so I staggered to the toilet and confidently closed the door behind me. Even this felt good, having been craned out of a toilet two weeks before when I fell off and almost into the corridor only a few weeks before. When you look back at low points in your life, this was undoubtedly one of them. But now it was different. I was standing and I knew I needed to go.

A glorious, rushing wee. Never before have I enjoyed going to the toilet standing up more.

It didn’t feel like the couth thing to do to see how high up the wall I could get it, but it was still a slow, luxurious, effortless wee that I could actually feel and more importantly for me, control.

Looking down at the still un-flushable toilet and I was now confident that I was going to be leaving hospital with bladder and bowel control. In only two weeks, I’d gone from toilet zombie with nothing under my control, to the complete belief it was all going to work again.

As happy moments in your life go, this was there. To regain such a simple bodily function meant that whatever still happens with my legs, I wouldn’t be living that worst possible picture I’d dangerously painted in the back of my mind and prayed would never come true.

You’re a lucky boy

 The final hurdle was the drug pack from the pharmacist to gather, which came far quicker than expected and then a final chat with the consultant.

He explained how, on the night of the operation – which was a Sunday remember, all of the spinal team had met and planned the route in to remove what they’d seen in the scans. It was complicated and difficult to get at as it was so far back and so close to the spinal cord and nerve bundles that feed from it. Time was of the essence too as potentially irreparable damage was being done. They agreed their strategy and even in their words, called it just right.

There are still no pathology results from whatever was removed, but that doesn’t hold any fear for any of us. In my gut, I know it’s not cancerous and even if it was, that would be a simpler hurdle to overcome than has been beaten already, so it’s just a wait and see and keep believing things will work out okay.

The discharge notes say it was a sequestered disc fragment. A lump of bone that had broken off my spine and was floating around bumping into things it shouldn’t be. It was so covered in scar tissue that it was harder to identify and may still yet be something else.

This officially means I’m as hard as nails, as I have been walking around with a broken back for an unknown length of time, even skiing five weeks previously and seeing Oxford United at Wembley the weekend before.

As the consultant got up to leave, I stood up from my chair and thanked him.

I said I’ve been a lucky boy here haven’t I?

Yes, he said.

Very.

Author: Johnny Lyle

Creating brands and building businesses in the Themed Entertainment and attractions industry.

7 thoughts on “Coming out to Contrasts”

  1. I remember the football day vividly but a different take on it. I offered the priests a plate of little biscuits – one of them popped a couple in his mouth but soon spat out as I had rather cheekily offered him the cats biscuits!

    Liked by 1 person

  2. I had to comment on the football too!! Naughty Sarah. Surprise not. I was 9 so was old enough for full beer not shandy. Well that’s my memory. The nicest priests I’ve ever met that lot.

    In terms of the story I think this has almost been the most powerful of the lot. More measured. I guess you’ve been able to look back.
    I love and respect your work. I know you will face the next step with as much bravery as you have done to this point.
    Xxxxxxxxxxxxxxx

    Liked by 1 person

  3. Johnny – you’ve done it again! Brilliant story telling as ever, and fantastic to hear about your progress.

    Good to hear about your shandy episode – I was actually quite lucky when I was young – whenever we went out for a drink with family and friends and was asked by an uncle what I wanted, my mum insisted that I was only allowed lager (she thought it was shandy!) – no priests involved though!

    Keep up the great work mate – look forward to seeing you again soon.

    Andy

    Liked by 1 person

  4. Wow the hardest football fan I ever met. Wearing T shirts in january? Nothing, try walking around with a bit of your spine floating around your back. Brilliant post. Keep getting better. Enjoy your rest.

    Liked by 1 person

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