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…

Last Apollo - Sean's Bar, Athlone - 18-04-26 – A Tough Act to Follow

Sean’s Bar in Athlone is the oldest pub in Ireland, dating back to a bewildering 900 AD. To emphasise this, there is a sparse scattering of wood shavings on the floor which seems to have a simultaneously apposite and opposite effect. Never mind, the place is replete with customers, from the blue-rinse lady with the incongruous glass of white wine to the trendy beard folk with their compact pints of Guinness. The bar staff are totally on point and that’s what really counts. They’re got your order before you quite know what it is and are already cueing up the person behind you.

Behind the intimate huddle of the front bar, as is sometimes the case, there lies a rather cavernous space which half feels inside and half feels outside. There’s an upstairs bit that’s out of bounds and a stage and lots of stools and timber surfaces on which to rest a drink.

Into this arena, as part of the Croílár Music and Arts Festival, comes Last Apollo and her band. Lucy Rice is Last Apollo in much the same way as Ciara Mary-Alice Thompson is CMAT. The stage name gives her breathing space to evolve from the lovely human she is, to the questing artist that takes the stage. Along with all the bagged-up musical gear the band bring, there is also a bagged-up supply of hamburgers and chips from the local establishment. Some of these will be rapidly consumed before the impending show, some saved up for after when a drop in adrenaline will hopefully ease digestion.

The cavernous space is three-quarters full as the band set up. The two longest tables are occupied by a) a bunch of old pals who haven’t seen each other in a while and b) a hen party, thankfully devoid of fake nurse’s uniforms but replete with home-made cupcakes. These two tables contribute much to high ambient pre-match melee.

The band are ready and into the early Saturday evening audience bustle steps Last Apollo, Lucy Rice left temporarily languishing out in the car park. A single vocal note is released into the room, then another, then another. The friends who haven’t seen each other in a while are fairly instantly conquered. Vape dribbles ineffectually from the corners of their surprised mouths as these notes from the stage fly out and explore the room. This was not the start one might have expected from the lively looking foursome on the stage, all armed with lead guitars, bass guitars, violin, synths, and drums.

The hen party are tougher to conquer. Clearly excited at the prospect of fresh cupcakes and marital congress to come, they continue to produce a noise that may explain why a hen party is so called. But isn’t this part of the essence of a real live pub gig? It’s not a concert hall; it’s not a convent. The band is owed nothing unless they can earn it.

By song three, the hen party is also won over. The cupcakes lie ignored. Last Apollo songs tend to build and build and build. And you may be able to roar about vows and contraception for the first part of a song, if you so desire, but the conversation will not survive when the dirty foursome on stage ultimately hit their stride.

Last Apollo’s voice weaves and spins in a most extraordinary way, the music carrying a depth of emotion that is often far beyond the performative. Naoise is a consummate guitarist and he unobtrusively maintains complex and engaging structures on his side of the stage. On the other side, Kate works her violin magic. Kate could hold her own in any concert orchestra in the world but here she is not above occasionally dragging some nasty riff from her instrument, reminding ourselves that this is no mere pub band, really. Serious work is being done here. Sam plays the drums like they have owed him money for far too long. One moment cajoling subtle rhythms with one ear almost down on the skins, the next pounding the living shit out the poor kit. Hair, hands, and sticks flying every which way.

Instruments swap around like snuff at a wake. Kate takes up Lucy’s bass, Lucy takes up Kate’s violin (actually, it’s probably her own). Naoise has a violin too. Sam has some piece of technical gear on his tom that he manipulates like a ham radio operator trying to bring in Hungary.

Half way through the gig and the place is full and fully appreciating the set. The folk in the beer garden at the back and the 900AD pub at the front have all percolated in, although the blue-rinse lady with the wine does not materialise. Nods of appreciation from the music heads circle the room as the songs build and explode into the space. Lucy comes in from the car park and occupies Last Apollo for a moment and it’s plain to see how touched she is by a room that has momentarily put aside all their other concerns and given themselves over to her music.

The band, as a whole, smile broadly throughout and interact warmly with each other. They have been friends for many years, through thick and thin, and the evident love and camaraderie adds warmth and spice to the music. Last Apollo’s online videos often feature shots of travelling the roads, countryside, the wide green spaces between gigs. One feels that the getting there and getting back is a crucial part of the story she tells. The bohemian life out on the road, the hauling, and the setting up. It all feeds into the art. It all means something.

The set ends with a heartfelt ‘thank you’ and promise of a summer album to come. Last Apollo spent February completing a national tour in support of Imelda May and, in those 22 gigs, she played many of the most auspicious venues in Ireland. It seemed like a lovely upward rung on a ladder of sorts. One hopes that the next rung is right there at her feet now: a rung that allows an ever increasing number of people to see and appreciate the quality of the music that is being made here. One hopes and expects.

Gig over and the band get their gear back into bed and make way for the next act. The sack of burgers are re-found. Cold and a little congealed, they have probably never tasted better.

As the next band set up, the sound system strikes up a Fontaines DC song and a young man behind me nurses his drink and sings along with his friends in a warm voice. I say to him jokingly that he should be up there on the stage. Two pints in, he stares longingly at the microphone, considers the notion for a moment, then sadly shakes his head.”

“On another day, maybe,” he says, “but that lot? They’re a tough act to follow."