Up or Down?

I’ve written quite a bit about the more positive aspects of my recent waltz with GBS. I suppose I should also mention, rather obviously, that there were some less-good parts to the whole affair.

But, when I think back to my hospital and rehab stay, and when I think about writing about the worst parts rather than the best parts, I always stop myself short. Nobody needs to be hearing about all that, I reckon. Not in the level of grisly detail I could write it in. But there’s still a part of me that feels it is only right to cover it in some way. To not just leave a written record for myself that seems unremittingly positive and ‘almost-fun.’ There were definitely times when it wasn’t ‘almost-fun.’ Not even close. But, like I said, the telling of that end of things is just too sinewy and gristly to be getting too deep into.

But this week, I got to thinking that the sides of the bed might serve as a manageable metaphor for all that other unmentionable stuff. It’s a true part, it’s fairly sterile in the telling, and ultimately it seems like it started me on a path towards a ‘narrative-for-life-as-it-currently stands’ which is both positive and good.

So, let’s try that, shall we?

On my first night in the hospital, the attendant staff put up the guarding rails on both sides of my bed. This was apparently for my own safety, to stop me from falling out. But I didn’t like it very much.

Not having been in hospital for over 50 years meant there was a lot of things I didn’t immediately like, but with most of them I tried very hard to suck it up and keep going, as you have to really.

But the bed rails were a bit more of a problem. It’s not a phobia, not even a ‘thing’ per se, but I do have a mild dislike of being confined or pinned down. Tight, tucked in, sheets in a hotel room, for instance, will do my head in and I’ll have to go around the bed perimeter and pull them all out before I can get in. On top of everything else, the raised guardings on both sides of the bed had some air of finality about it that just didn’t work for me.

So, I bargained. I promised I would strive very hard not to fall out of the bed, and could they please consider leaving just one side of the bed open? They were kind, they were considerate, they left one side down. The fact that I had promised not to fall out might have helped but, in actuality, I was not able to move myself very much at all so the falling out was really a pure impossibility.

The bed rails were thick moulded plastic affairs, not at all like the chromium plated bars one might see in a Carry-On Doctor film. They were sleek and space-age and clean and bright… but still they were there to hold you in, and, for the first few days, I was glad to always have one of them down.

But by the time I was transferred to the Rehab facility (on a stetcher, in an ambulance… another new experience) a couple of weeks later, I had learned a lesson or two about guardings and beds… and me. Answering a series of written questions upon admittance, I was asked if I would like to have the bed guardings up or down at night. I immediately answered that I would like both of them up please. This was met with a little surprise. I was told that, at this point in my treatment, the raised bed guardings were regarded as a form of restraint and I would have to sign a release to allow the staff to do that for me. I took the pen and made my incoherent scribble without hesitation.

What had changed in me in those few weeks? Had I become beaten down by my time in the general hospital? Had I given up all traces of independence? No. It was quite the opposite. I had learned a trick or two and I had also become a little stronger.

The truth was that although my legs still weren’t co-operating very well, I had very good strength in my upper body. With the guard down in the night, even on one side, I couldn’t manage to shift or turn in the bed. But with both guards up, I could grab hard onto those moulded plaster handholds on both sides and drag myself around into a more comfortable position. In the night, if I slipped too far down the bed, I could haul myself back up to the top, inch by inch, in a mere matter of a couple of grunting, sweating, minutes.

I had soon realised that this confinement was to my advantage and the pleasure in being able to move myself just a little bit outweighed the discomfort of being closed in.

This situation didn’t last for long. The regaining of some command over my legs came back much more quickly that anyone expected and, pretty soon, the bed guards were not an issue anymore. In fact, they no longer existed in my world.

But now I find they come back to me sometimes, in my head. Not as any fearful negative thing but more as a lesson in resilience and resourcefulness. I see how scary things can sometimes be lassoed and mounted and tamed to one’s own advantage. And, on a somewhat wider perspective, I see how I sometimes get to choose my own narrative, not just for the bed guardings but for this entire episode of my life.

When it comes to the telling of this story, I could have chosen the ‘pity me, I was locked up in my bed and couldn’t move’ narrative but, instead I choose the, ‘I turned a shitty thing into something good for me’ narrative.

On the wider scale, when it comes to my overall illness, I could have chosen to tell myself a story which goes something like, “I am damaged goods now. I have 24/7 nerve pain. I walk well but with care. My legs sometimes feel like they are encased in lead. I get tired and distracted. I am not the man I was 4 months and 1 week ago.”

To hell with that. No. I choose another narrative.

I am doing great. I can do everything I could do before. I have made a brilliant recovery, and, over the coming months, I will only get better and better. And even if I never get fully better, I will be able continue to live my wonderful life on my own terms.

I am a lucky, lucky guy and that’s the story I will continue to choose to tell myself.

Would you like the guards up or down? Would you like your story served up or down? Different questions, same answer.

Up, please.