GBS - Month Ten – Mr. Tingles in the Guest Room

Ten months ago today, I started my ongoing relationship with Guillain–Barré Syndrome (GBS). Over those months, I have periodically checked in with a short essay about where I’m at and where I’ve been with it since the last update. I refuse to use the J word.

This is the latest in that series of posts. It’s meant for people who might get the thing and pass this way in the future and who might be interested in how I’ve got on.

No. Strike all of that last paragraph.

It’s just for me.

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So this will probably be repetitive. It may sound a lot like some of the previous updates I’ve posted here. I won’t really know. I’m not reading back. I think the trick is to tell it like it is today and maybe someday look back at the posts as an overall picture. Not today, though. Today is just about today.

Month Eleven begins tomorrow and I’m doing well. I can do everything I could do before if maybe not quite as well as before. My mobility is very good. I walk, hell, I sidestep, I reverse, I can even jog a little bit if I ever need to. I do a full week’s work and sleep like a log.

Effectively, of course, Guillain–Barré syndrome is over for me and has been for a long time.  What I am continuing to deal with is the remnants and residuals of injury and minor impairment that it left me with.

The main thing, at Month Ten, is the ever-continuing peripheral neuropathy. The Parasthesia. My hands ‘tingle,’ my feet ‘tingle.’ Sometimes I imagine my nose ‘tingles’ so maybe it does. Since I would have last updated, my ‘hand tingles’ have tangibly improved. It’s hard to record improvement, you can’t take a photo and compare it to an older one. All you’ve got is memory, and memory of pain seems particularly elusive. My hands feel less tingly and, in place of the tingle, a more orthodox dull pain has set in. A sort of arthritic ache now sits where before it was all pins and needles and electrical activity. The tingle is still there but it seems to be lessening. I see this as a huge positive and welcome the enhanced pain feeling. I feel my nerve repair is progressing as advertised and, so many months in, this is the first solid evidence of it happening.

My feet and lower legs, to my mind, are unchanged, unimproved, in the ten months to date. I recognise two things in this regard. Firstly that the repairing can easily continue for 18 months or thereabouts, so there’s still plenty of time for improvement. My feet are ‘further down’ than my hands so perhaps it’s understandable that it takes healing longer to arrive there. The second thing I know is that, as a 63 year old person, the repair might never be complete. There may always be some reminder of the year 2026 in my hands and my feet.

The main development with the neuropathy is in how I live with it.

I have grown accustomed to it.

There hasn’t been a waking moment in all these months where I haven’t had tingles, pins-and-needles, buzzing, whatever we want to call it. It’s been my constant companion. And, yes, in the words of the song, I’ve grown accustomed to its face. It’s not all that bad. It’s manageable. It’s okay. I can live like this for the rest of my life if I have to. I feel so damned lucky to be up and out and strong and active and living my life in this fully autonomous way. Having had the few months of not being autonomous, having been classed as ‘fully dependent’ for a significant period of that time, I can smell the roses a little better than someone else might.

The ‘tingle,’ the pain, whatever, is like a house guest who has stayed longer than is ideal. It is Mr. Tingles, set up in the guest bedroom. You wish they would go or, if not, that they were at least a little tidier around the house. When you’re tired, they really annoy you when you’re trying to watch telly and, at those times, you wish they would just bugger off and leave you alone. But they’ve been here a long time now and they’ve occasionally surprised you by teaching you a thing or two about yourself. You hope that someday they’ll just up and leave or, failing that, get some kind of a hobby that keeps them out of the house a bit more. But, let’s face it, if they must stay, they must. It really could be so much worse.

Otherwise, as far as the wide world is concerned, I think I’m presenting quite successfully as being fully better.

Inside myself, there’s some stuff. I get fatigued. Sometimes I feel a little off-balance. My legs get stiff if I sit too long. My concentration and recall are worse than they were before. I am snappy and impatient at times and with people where I would never have been one year ago. Also the tingle serves as a constant reminder of what happened to me and so my mind returns to that and dwells there quite a bit more than it ideally would.

Lastly, and don’t tell anyone this, but I sometimes fear a recurrence of the GBS. About 5% of people get to have a rematch with it and that plays on my mind a little. Some mornings, when I sit on the side of my bed and plant my feet on the ground, I wonder a little if my legs will support me when I stand up. It was a trauma, what happened to me, and I now recognise, thanks to my friends, that I still carry some shade of that trauma along with me.

That’s the update.

If I end up staying just like this for the rest of my life, it will be a good life and I will be happy with it and I will continue to feel lucky to have all that I have.

But I hope to improve even more as the coming months play out.

And I reckon I probably will.

Bible, Almanac, and Prayerbook

When I was very young, my mother brought me to the record shop and bought me a 45. No, not a gun (thankfully) but rather a vinyl single record. It was popular and in the Top Twenty at the time, I reckon, so that puts the year as 1966 and me as 3 years old. It’s an early memory for sure, but the clear existence of the physical record goes a long way to confirm it.

I think Mum might have bought it as much for herself as for me, but I claimed it anyway and had it played and played, over and over again, on our red record player. It wasn’t long before the record got flipped and Eleanor Rigby got played on the other A side. I think I liked that even better. The lady kept her face in a jar by the door. Spooky and cool.

Some years after that, perhaps noting my enthusiasm for messing with records and record players, my Dad brought home a sizeable collection of 45’s that I think he must have bought from a house clearance. He presented them to me, just like he would present my Friday night comics. I remember asking him whether these records were the latest hits, probably because that was what I was mostly excited by. He assured me that they were and I believed him. Years later, I know for sure that those records were neither current or trendy, even for those early times. But, at the time, I think I thought they were and I played the grooves off those odd records.

Who was in there? Oh my God. Gene Pitney – If I Didn’t Have a Dime. Stan Freburg-Sh-Boom. Clarence ‘Frogman’ Henry - I Don’t Know Why I Love You but I Do. Hank Snow - The Wreck of the Number Nine. An ancient, eclectic, mix if ever there was one.

One of the oddest records in this ancient collection is the point of this post. You may know other versions of the song by Tex Ritter or even Phil Harris. But the version I had was by a guy called Wink Martindale. The song? The Deck of Cards. 

Do you remember it? A soldier is court martialled for spreading his cards out in church and rather piously explains how each card has religious meaning for him. It was pretty cringe than and it’s still pretty cringe now. It’s easy going for the soldier to explain himself at the start (When I look at the Ace, it reminds me there is one God). But, even by the five card, he is definitely struggling a bit (The five reminds me of the five wise virgins who trimmed their lamps… there were ten of them but five were saved). I think I would have court-martialled his ass right then and there. When things get even rougher, he resorts to comparing his deck of cards to a calendar. (When I count the spots on a deck of cards, they total 365). Enough, take him away, already!

Anyway, that was my earliest version of a record collection. It wasn’t much but it was mine. I soon left it behind for my brother’s collection of Dylan, Cohen, and the rest but some imprinting still remains. I just listened to that Stan Freburg record that I mentioned above for the first time in perhaps 55 years and I could still go along with it, word for word.

And is there a point to this, Ken? You usually have a point. Not much of a point. Maybe a little one.

I’m at one of those points in the year where I wonder about this blog. What is the point of it? Why do I insist on spreading it out across my desk every Sunday morning, just like the soldier with his tenuously-explained deck of cards? Sometimes it is stretched very thin. Sometimes it seems rather pointless. Like the guy’s cards, the reasons for unpacking it every week are a little slight.

But, also like the guy’s cards, it may still serve some tangible purpose, if only a personal one.

It makes me write and think and form sentences and thoughts. It forces me to structure a thought or two into a tangible presentation. It encourages me to continue to look around and challenge what I see, if only in my own head. It keeps my fingers working the keyboard. It makes me feel like a writer, which helps me to continue to pursue the other aspects of my writing.

And memories. This blog is chock-full of memories now, set down when they were fresh and vibrant. Looking back through them from time to time, tidying up the format a little as I go, it’s like having a tiny memorial garden to things that have been and gone in my life, as well as things that are thankfully still here.

This morning, I had nothing to write and I nearly walked away. Nearly left another fallow week. But I dug in and dredged something out and here it is. An old record, a deck of cards, a blog that serves (in its own way) as a bible, an almanac and a prayerbook. But, more than anything perhaps, a book of memories. A photo album of words.

And on this particular Sunday when we encourage ourselves to remember, perhaps that’s not such a bad thing after all.

“And, friends, the story is true. I know. I was that soldier.”

Granny's Record Player (or Lack Thereof)

Sometimes gaps in memory are not such a big thing. The reason is fairly simple, to my mind. We don’t know the things we don’t remember. In a certain way, a gap in memory doesn’t even exist because a) we are not aware of it and b) it generally doesn’t matter to anybody else.

But, once in a while, and often quite at random, a little gap will show itself and, when that happens, it can be frustrating, niggling, and hard to shake off.

I have lots of gaps in my memory and more as I go on. I think the stuff I went through earlier in the year ushered in a sort of brain fog, or at least a fairly dense brain mist. The effect has perhaps been less on my actual memory and more on my recall. I know the stuff is in there, sitting safely enough, but pulling it up and back out into the world can occasionally be a slow and painstaking process.

But back to the memory gaps. I landed on one yesterday that is still toying with my mind so I thought I'd type out something about it to see if that loosened the logjam a little.

The memory concerned listening to music at Granny and Grandad’s house.

Perhaps it was inspired a little by the sad loss of Donal Lunny on Friday, because the music we listened to at Granny’s house was of a traditional nature. But it was a sort of trad music that preceded the wonderful innovations that Donal and his peers brought to the form in the Seventies and thereafter.

It happened like this. I was in the kitchen yesterday afternoon, making a chilli and listening to my current Le Carre  audiobook, when a song jumped into my head, as if from nowhere. It was an old trad song by the Clancy Brothers and, I think, Tommy Makem too. ‘The Whistlin’ Gypsy.’

The Whistlin’ Gypsy came over the hill

Down to the valley so shady

He whistled and sang ‘til the green woods rang

And he won the heart of a lady…

From nowhere, the song arrived, complete across the decades. And with it the memory. Sitting in Granny’s listening to the song, five or six years old. But not only that, the other songs on the record waltzed into my memory too. “If it wasn’t for the weavers, what would you do?” “Bless all moonshiners and bless all moonshine.”

It was a Sunday afternoon and there I was, listening to the songs. We probably did it on several Sunday afternoons. A fond memory.

But here’s the thing, the annoying thing. There’s a significant gap in the memory. Granny didn’t have a record player. Not that I can remember. No record player. Yet the record played and played. My uncle had a record player (West Side Story) and we had a record player (Simon and Garfunkel’s Greatest hits) but I can’t remember Granny ever having a record player. Still the record played and played…

Yes, I do realise that I’m writing around in circles. That’s to reflect the fact that my brain is doing that exact same thing. It’s a sort of a ‘Does Not Compute’ gap in a strong memory. The record is there, the music is there, but where was the record player? Where did it sit? Where was it plugged in? What other records could there have been?

Easy, you might say, you listened to it on the radio. No record player. But, no, that’s not how it was. The memory is strong and clear. The repeated playing of the song, and all the other similar songs. It is interspersed with other things. ‘The Golden Shot’ on the telly. Lord Halifax’s Ghost book on the shelf in the corner, with the scary skeleton in the top hat on the cover. The pictures, both visual and aural, are fairly well defined. Except there is no record player. More than that, and I’m going to get a bit silly now, there seems to be no possibility of a record player. Only the songs.

This should be a nothing thing, something to go ‘hmm’ over just once and then move on. But it is interesting to me. It is an identifiable hole in my memory and my brain pokes at it like my tongue would poke at the gap left by an extracted tooth. If I can remember so much else, why can’t I remember that one part? And, to go further, is any of the memory real or is it all concocted from a series of unrelated things that happened at another time and in another place? All is possible. All is unfathomable.

Perhaps my preoccupations with something so very trivial have to do with aging and recent illness. How my brain doesn’t quite do everything as fluidly as it did last year or the year before that.

Or perhaps it’s just because it’s a Bank Holiday over here and I just have too much time on my hands.

Either way, I am sure it will resolve itself soon in the usual, natural, way.

I will forget all about it.