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.

Positive Reports from the GBS Front

There’s a sizable part of the me that doesn’t want to return these posts to the Guillain-Barré subject ever again.

I am cultivating a sort of a ‘Move On/Get Over It’ mentality about it all. But it’s not entirely as straightforward as all that. I tell myself that I owe it to the narrative to update it a little as I go.

What do I mean by that? Well, when I was first diagnosed, four months ago this week, I started to hunt through the internet for other people’s experiences of what I was about to experience. It was helpful and unhelpful, all at the same time. I think how the people who come after may do the same and they may eventually stumble on to me and my own posts on the subject. And if those posts of mine were to just stop at three months out, doing good, would that not be a cop out and a lack of respect for those who come after? Along the way, I have benefited greatly from hearing, first-hand, the experiences of others. It is statistically highly unusual that I would have two lovely people in my immediate circle who have gone through what I have gone through.

So, in summary, here I am, updating again.

Four months out, four months in, take your pick and I am doing great.

Great.

Except it’s not entirely that straightforward and not entirely that simple and that’s why I think it might be worth revisiting the subject yet again, even if you are totally fed up of it.

So, how am I really?

Okay.

In almost every respect I feel that I am done with Guillain-Barré Syndrome and it is done with me. I go to work every day and I do well. I walk everywhere with a good steady gait and can manoeuvre around and through the everyday obstacles of the town very well. My reflexes have come back and I can once again feel the resonance of a tuning fork on any part of my body that you might care to place one. My consultant doesn’t need to see me anymore. If you meet me on the street, I don’t think you’d know that anything had happened to me, which is very pleasing indeed.

But, for the readers who may come afterward, experiencing the same stuff, I have to say that there are still some unavoidable residuals. The main thing that I am currently left with is what the fancy-ass people would call ‘Peripheral Neuropathy.’ This persists in both my hands and my feet and, sometimes I fancy but can’t be sure, in the tip of my nose. In my case this stuff presents as a constant numbness, prickling, and tingling in these areas as well as a sensitivity to touch and a rather contradictory feeling that my hands and feet are bound up in some kind of invisible cloth.

With all of that comes an element of fatigue and distraction that is much harder to describe and nail down. In truth, it’s harder to know if that part is real or not – a real part of this journey – or whether it is just a part of the normal course of getting older. This self-doubt is one of the hardest parts of all to navigate. If I get worn out, if I stumble momentarily, if I forget obvious stuff, am I just playing a game with myself, pretending to still be a bit sick, for sympathy or something. I know in my heart that’s not the case but the mind plays its tricks… or, at least, mine does.

But the nerve pain, as described above, is the main thing. And, because I got this little gift as part of my GBS, there is an increased chance that it will all go away over time. They say it often eases and fades over months and then, one day, it is gone. One friend who has travelled the same road reminded me that the symbol of the GBS Society is a Turtle. Slow progress and patience are the watchwords of these latter stages. They say that nerves regenerate at 1mm per day so, inch-by-inch (in old money) the inside of me is getting better every day.

But to those who follow behind and who may find these posts here, I will say that it doesn’t always feel like that.

Whatever repairs are going on inside of me, they are not manifesting themselves in any notable improvement yet. The tingling/buzzing/numbness/pain is unaltered to date and, on some days, I feel like my age (62) might go against me in this and I may ultimately be left with some lifetime residuals from this adventure.

And, you know what? If that turns out to be the case then so be it. I can do everything I need to do. I can get through my days and if I’m a bit more weary than usual at the end of them then so what? This will improve… or maybe there’s a small chance it will not. Either way, I can manage it and live with it and enjoy life with it.

So, in summary, I am happy with where I am. I certainly feel some of that rather clichéd increase in appreciation for the life and the health I have, and I also feel some increased empathy for those souls whose lives are so, so much harder than mine.

So that’s the update. Ask me on the street how I am and I’ll tell you I’m fine, it’s over, I'm done with it.

Ask me here and maybe I’ll tell you that little bit more.

When Infirm Music Legends Collide

My time in hospital offered a lot of new and remarkable experiences, not all of them peachy. There’s stuff there I could write about and that I would probably even enjoy setting down, in a cathartic sort of a way. 

But it’s tricky, isn’t it?

The journey through a hospital stay, or my one at least, invariably involves other people. People who are either at their place of work or are sick. Neither of these noble categories of folk deserve to be splashed too formally across the virtual pages of a hardly read online log. So therein lies the rub. To set it down and risk compromising other people’s privacy for your own diversion, or to leave it alone and lose the kaleidoscopic memories of something that was periodically funny, sad and painful and which was clearly some kind of a trauma.

So this one is a little experiment. An attempt to set down one of the myriad hospital interactions, without over-exposing any of the other private parties involved. To try to do this, I have changed names to more famous names, altered ages, and swapped-out musical instruments in the following paragraphs.

Let’s see how we go.

When Jack Lemmon arrived on the ward, he interrupted an uneasy peace that had recently descended there. Subsequently found to be 93 years old, he could probably be excused in having some foibles but, still, he was loud and grumpy and shockingly rude to certain members of the staff and nobody was immediately endeared to him. But, as the rest of us had to do, he settled in and calmed down and, although he never stopped being needy and selectively rude, we grew accustomed to him.

Well, most of us did.

In the bed next to me, James Stewart remained solidly unimpressed. James, a rangy elderly farmer man, had rather taken against Jack’s belligerent entry onto the ward and was not backward in hinting at his own latent hostility towards him.

There were six of us men on the ward. James was on my right and the TikTok Bishop was on my left. Jack was right across from me. Peter, who thought my name was Vincent for my entire stay, was over there with Jack, and Gareth, who had spent years in hospitals and knew everyone and everything (in a good way), completed the cohort. We got along okay, apart from Jack and James. James Stewart had no time for Jack Lemmon, as I said, and that would have been fine except for one little thing. Jack adored James and clearly burned to be his friend.

Marooned on my bed or in my chair, as I was, I had time to consider this relationship impasse. This considering, coupled with my customary listening-hard to everything that went on, gave me the dawning realisation that I had it in me to bring these two elderly gentlemen together in a positive way. This is the kind of shit I sometimes do, and I had so much more time to do it in hospital, so off I went on my little diplomatic mission.

You see I had listened and I knew things about the two elderly men that they did not know about each other. They each had something in common. They had each discussed it with their various visitors but never with each other. While, all the time, little old me, propped in my comfy chair, has listened and heard everything.

So, when James was wheeled off for a scan, I bent Jack’s ear a little.

“Hey, Jack, you know James here in the bed beside me. You know he’s a musician, right? Fiddle, I think, I could be wrong…”

Later, when Jack was safely ensconced in the bathroom, I did the same with James.

“James, you know Jack over there. I hear he was quite the accordion player back in the day.”

Seeds duly planted, I sat back and waited to see if anything would grow.

James passed the foot of Jack’s bed the next afternoon, and instead of the customary rather cold shoulder, he paused there and ran his finger over Jack’s chart.

“Did I hear you’re a bit of a box player?”

“Oh, yes, I am.”

“I play the fiddle myself.”

“I think I heard that all right… what’s your name again?”

“James Stewart.”

There was a pause. I watched them over the rim of my book.

A longer pause, and then Jack said hesitantly, “You’re not… Jimmy Stewart?”

James looked at Jack more carefully. “Yes, I am.”

Jack suddenly addressed the entire ward, as he was occasionally prone to do.

“Everyone, everyone! This is Jimmy Stewart. Only the best fiddle player west of the Shannon.”

James/Jimmy blushed, “Oh, well now, I don’t know about..."

“I’m Jackie Lemmon!”

“Not Jackie Lemmon, the accordionist?”

“Yes, yes!”

“But we played together, back in the day.”

“We surely by-God did!”

Thus a warm, brief alliance was born. It turned out that Jimmy Stewart and Jackie Lemmon, knew lots of mutual people, all traditional musicians. They hurled names at each other across the ward divide and, for each name mutually recognised, the same compliment was bestowed.”

“He was a grand player.”

“He was. A grand player.”

One evening, Jackie tuned his transistor radio to the Irish Channel, Raidió na Gaeltachta, and two hours of traditional Irish music spun out of it. I don’t know if you know but Traditional Irish music, which are often Reels, Jigs, or Hornpipes, tend to travel in packs of three. Each tune running seamlessly into the next so that it is often difficult to tell where one ends and the next begins. They all have strange evocative names like, Mulholland’s Fancy or The Breeze through the Byre. I made those two up but that’s not to say they don’t exist somewhere in the vast pantheon of Irish tuneage. Some of the real tunes I myself had to learn, when I was a reluctant child accordion player, had names like The Mason’s Apron, or Merrily Kiss the Quaker, or Drowsy Maggie.

For two hours, Jackie and Jimmy sat on two chairs in the space between the ends of the beds. They huddled together over the little radio and they named every obscure tune that came out of its tinny speaker. More than that, they seemed to know every person who has playing every tune, declaring them, one more time, to be ‘good players’.

So here’s to Jimmy Stewart and Jackie Lemmon, (not their real names), who collided briefly in their infirmity and, in doing so, found some common ground which raised us all up a little.

Here’s to the TikTok Bishop, who turned if off sometimes.

Here’s to Gareth who, in a comradely way, showed me the ropes of surviving in hospital.

And here's to Peter, over there in the end bed, who provided me with the words which seem to have come to define my rather eventful stay in Medical B.

“Watch out everyone, Vincent’s on the floor again.”

‘Til next time…