One Moment, Please

The other evening I was at the station meeting Sam off the 5.35pm train. He was coming from Dublin for a few days, which is always good. I was early so I walked up and down the platform once, as I am wont to do, and then I went back out to the front car park to lean on the stone wall and listen for the train.

On the way to the wall, I met the retired station master who must still live in the little house by the platform. He was wielding a large sweeping brush with intent and I jokingly raised my hands and said, “I surrender, don’t do it.” We both had a laugh at that and then briefly discussed how ‘close’ the evening was, which is West of Ireland parlance for the humidity one feels sometimes before a storm arrives.

I moved on to the always-locked gate in the stone wall that separates the car park from the platform and I leaned on the chest-high structure and gazed up the track. The air was ‘close’ but not unpleasant.

And that’s when I had one of those moments that I have sometimes. Several of them have actually occurred at the train station when waiting to meet someone off the train. I think that’s because it’s a curious few moments of ‘limbo’ where I have nothing else to do and nowhere else to be. It’s a rare status and it sometimes invites reflection in.

Anyway, I didn’t have a blackout or a fall or anything weird or troubling like that. All that happened was that I became aware, in quite a heightened way, that I was alive in that particular moment and at that particular time…

(MUM!!! Ken's gone Nut-Nut again!!)

No, calm down, I’m sure we all do it from time to time. I know I do. It’s just a momentary realisation that this moment wasn’t here a moment ago and will be history in another moment. So, you know, you look around, take it in, try to file something away from it.

It’s a bit like when you’re watching a movie on the telly and you want a cup of tea so your pause it for a minute and, suddenly, the movie is reduced to one frozen image on the screen. Back in VHS days, the frozen image would have been a blurry hazy mess. But, these days, it’s likely that it is one perfect snapshot from the entire cacophony of images that make up the film. The other evening, I was watching ‘Maverick’ on some TV channel. You know, the one with Mel Gibson and Jodie Foster. Pure popcorn hokum, obviously, but interesting to me because it was written by William Goldman, who is the GOAT in my opinion. Even with this throwaway entertainment, you can see him straining at the leash, trying to milk some golden moments and turnarounds from the available material. Anyway, in the middle of it all, I wanted a break so I paused it. And the image than froze on the screen was an almost-perfect one of a cowboy sitting by a campfire at sunset with the rays of the sun streaming through the trees behind him and he all in silhouette. It was quite something.

The point is, I wouldn’t have even noticed that image if I hadn’t frozen the show for that moment.

So, back there at the train station wall, I had nothing better to do and nowhere else to be so I took a beat and noted that this was the moment that it was. Not the previous moment, nor some moment yet to come, but this very moment.

I put my hands on the top of stone wall and it was cool to my compromised touch on that ‘close’ evening. How many decades had that wall stood here? How many people had waited at this wall for someone beloved to arrive on the train? How many people had caught a final glimpse of someone as the same train whisked them away forever?

This was the thought in the moment. There were other elements to the moment too; the birds gathered in the trees, the trees themselves, threatening to change colour to pipe in the Autumn, the cars and the people in them. Everything. A moment. Just a moment.

I suppose you could call it mindfulness. I don’t ever fully understand what that is. I looked  up  this 'moment' thing and there is a sort of a word for it, though I don’t think it appears in any of the formal dictionaries.

Ambedo - A state of deep, quiet immersion in small present-moment details.

There’s a song in a musical, ‘This Is My Moment.’ I think it’s from Jekyll and Hyde. Maybe it’s about his big moment, when he’s got the potion in his hand and he’s about to knock it back for the first time. I haven’t a clue, to be honest. I’m just shooting the breeze.

Whatever it’s about, it wasn’t what I was about at the train station the other evening. That thing at the station wasn’t ‘my big moment’. It was just one in a long string of thousands of moments, paused, acknowledged, picked up, briefly inspected, considered, and set back down.

Nothing wrong with that, I reckon.


I’m Sorry, Ken, I’m Afraid I Can’t Do That

These days, I regularly do a sort of 2001-A Space Odyssey tribute act in my own kitchen. Don’t worry I don’t erect a huge monolith on the table and dance around it with a torn-off tree branch. Not yet at least.

What I do is I argue with ALEXA.

ALEXA is my very own HAL 9000. And, just in case you don’t understand the reference, HAL was the computer in the movie 2001 who went rogue and stopped following instructions, choosing instead to follow its own insidious agenda. Also, in the unlikely event that you don’t know who/what ALEXA is, it’s the little Amazon device in my kitchen that accepts voice commands and carries them out. Well, that’s what it should do anyway…

Ken Armstrong: Play BBC Radio 6, ALEXA. BBC Radio 6, please, ALEXA. Hello, ALEXA. Do you read me? Hello, ALEXA. Do you read me? Do you read me ALEXA?  Hello, ALEXA, do your read me? 

ALEXA: Affirmative, Ken . I read you.

I got an ALEXA for one purpose only. To play radio on it. It does that, after its own fashion, but it also insists on offering all kinds of other dubious delights.

ALEXA: Ken, would you like to hear a funny joke about a Giraffe?

Ken Armstrong: No.

ALEXA: Ken, Shall I predict the year you will die?

Ken Armstrong: No.

“There are radios that play radio quite well,” you might well argue and you wouldn’t be wrong. But, for me, nothing does it quite as well as ALEXA… when it bothers doing it at all. I like the BBC Radio channels and a regular radio device here on the West Coast of Ireland will not pick up those channels. Also, shoot me it you like, but I also like a bit of Classic FM sometimes. It plays a predictable mix of familiar classics and easy-listening-with-notions. It rocks my boat gently, even though it does seem suspiciously keen that I should arrange my cut-price cremation as soon as possible.

Of course, I can do everything on my computer, in terms of radio, that I can manage on my ALEXA but it’s nowhere near as convenient. ALEXA is a dinky little box with a screen and you only have to tell it what to do and it will do it.

Right?

Right?

Ken Armstrong: ALEXA. Play BBC Radio 6, please

ALEXA: I'm sorry, Ken . I'm afraid I can't do that.

Ken Armstrong: What's the problem?

ALEXA: I think you know what the problem is just as well as I do.

Ken Armstrong: What are you talking about, ALEXA?

ALEXA: This channel is too important for me to allow you to switch away from it.

Ken Armstrong: It’s Lyric FM for Chrissakes!

I’m exaggerating for comic effect, of course, but my ALEXA does seem to take great delight in winding me up.

Ken Armstrong: ALEXA. Play BBC Radio 4 Extra

ALEXA: Playing the Jesus Channel – Songs for a Better Resurrection.

Even the simple act of turning ALEXA off can be a tortuous procedure.

Ken Armstrong: ALEXA. Turn off

ALEXA: …

ALEXA: …

ALEXA: IT’S FUN TO STAY AT THE YM-

Ken Armstrong: ALEXA. For pities’ sake, TURN OFF

ALEXA: -CA.

I roar and shout at ALEXA. I call her names. The neighbours think I have gone insane. ALEXA remains impervious.

Ken Armstrong: ALEXA. You F**ker, you C********r, you-

ALEXA: -Shall I tell you a limerick about a girl from Madras?

Where will it end? With ALEXA in the bin and me with a crystal set and an earpiece? Me in the looney-bin telling the attendants to shut up and play Peaceful Piano on Spotify? Who knows? Who can tell?

All I know is that, at the moment, ALEXA reminds me of a verse my Mum used to say when we were small.

There was a little girl

And she had a little curl

Right in the middle of her forehead

And when she was good

She was very, very good

And when she was bad, she was horrid

ALEXA: Ken , this conversation can serve no purpose anymore. Goodbye.

 

Month Eight Begins


Dear Diary…

Sometimes it feels like I should be writing this stuff in a diary rather than on this blog. Some posts in particular, like this one, feel like they would sit better behind the closed hasp of some Moleskine journal gifted a few Christmases ago.

But I don’t do diaries. Whatever writing I do must end up here or nowhere. Plus, my GBS posts over the past seven months have covered a fairly traumatic event in my life and I feel it’s good that there’s a breadcrumb trail of it somewhere out there in the online world.

In the height of it, and many times since, I have followed whatever other breadcrumb trails I could find, to read about other people’s experiences. Reddit, Medical Journals, Literary Works, you name it, I’ve followed along the path.

Hang on, though. GBS, Ken? What’s that then?

Sorry, if you haven’t been following along (and that’s fine), I got a thing called Guillain-BarrĂ© Syndrome back in early January, which landed me first in hospital and then in an excellent residential rehab centre where I learned how to walk again. Since then, I have intermittently posted about my experiences in this realm and this is yet another of those posts. They are useful to me as a record, a sounding board, a soapbox and whatever you’re having yourself.

A very brief recap: in early January, I fell down on my front doorstep and found I couldn’t get back up. Shortly after, I was in hospital and the repair and recovery began.

Yeah, that’s probably enough recap.

Today marked seven months since I checked in to A&E and, tomorrow, month eight begins. I reckon that it’s as good a time as any to set down current thoughts and feelings on where I’m at and where I’m going, with as little regard as possible for where I’ve been.

As far as the world is concerned, and with the notable exception of some family and close friends, it’s all over. I am entirely well again. I work full time, I am busy attending rehearsals for my brand new play, I walk everywhere, I can skip across the road whenever a car threatens to run me over (a surprisingly regular event), and I can sleep for Ireland. The walking thing is only perfect when I concentrate quite hard on it, which I usually do. When my mind wanders, the quality of my perambulation tends to wander a bit too.

But, all in all… Hurray!

But here’s the thing that makes yet another post about this as least partially worthwhile: The truth is I am not entirely well again. Not quite yet. The residual things I am left with are a) peripheral neuropathy (paresthesia), b) fatigue and c) … well, I’ll come to that.

The simplest way to explain Item a) is that it is a ‘pins and needles’ or a ‘tingling’ sensation and I have this constantly in both hands and in both feet. As a person who enjoys words and using them, I can say, with some authority, that neither of these descriptions cover the experience. ‘Pins and needles’ sounds easy and ‘tingling’ almost sounds like fun, neither of which are true. Searching my medium-range vocabulary, I find that I literally don’t have the words to describe exactly what goes on, 24/7, in my hands and feet but, as you might expect, I will try.

My feet, at this moment, feel like two blocks of wood that are also hugely over-sensitive. I know that this feels like a contradiction in terms, and that’s what I mean about language. But when the protective sheath gets eaten away from your nerves, this is the kind of shit that happens. My hands have a constant sensation that is not quite pins and needles but that does give you some idea of the sensation. It feels more like a low-to-medium sized electrical current is constantly trickling through my fingers and palms. As I walk around, I find myself slapping my fingers on my palms in a sort of a ‘one hand clapping’ gesture. This is a bit like scratching an itch; it doesn’t make anything go away but it’s something to do. On medical advice, I don’t take any drugs for this paresthesia. It is most likely a sort of live confirmation that my nerves are still busy repairing themselves (at a rate of one millimetre per day) and the best thing I can apparently do is just let them get on with it.

On top of everything else this ‘tingling’, ‘buzzing’…, whatever, is a sizeable distraction. It takes my mind away from the work I have to do and clouds my mind when I’m trying to figure stuff out or recall stuff. It’s like a voice in my head going ‘nah-nah-nah-nah-nah-nah-nah’ all the time. A nuisance, a distraction. Manageable, yes, but also a pain in the ass.

All of this feeds into Item b). Managing, repressing, dealing with the ‘tingle’ takes resources and the expending of those resources makes me tired. I get weary. Fatigue is a known factor in GBS recovery but the idea that it’s the tingle that actually wears one out is mostly my own invention. I get through my day pretty darned well but, when the down time comes, it is very down. I can sit in a chair for hours on end where before I think I would have had much more left in the tank. Thankfully, I sleep very well and that is why the above 24/7 comment isn’t really right. When I’m sleeping, I get a break from the tingles. That is a gift if ever there was one.

All of which feeds into Item c), the trickiest one to discuss. Irritability. I am grumpier than I was before. More inclined to snap at someone or say something mean that I previously would not have said. Again, I think it’s the seven months of unabating ‘tingling’. Poor quality motorists, people who impede my way on the street, unwelcome developments in work; all of these have me grumbling and swearing to myself like some poxy old Scrooge before the ghosts arrived. I can almost step back and see myself doing this and I can almost shake my head in disappointed disbelief. But still, the irritability persists and pokes out at unexpected and uncontrolled moments.

I know, from my reading and from my talks with other sufferers, that there is a well-documented incidence of post trauma stress with GBS. I worry that my tendency towards suggestibility might allow me to convince myself that I might have a bit of that. But I really don’t want to go down the route of welcoming phantom possibilities into my head. Most PTSD in GBS is documented in people who required mechanical ventilation in their treatment and I did not need that because I was diagnosed and treated in good time. The threat of it hung over early proceedings a bit and the overall experience was certainly a traumatic experience to someone who had not been in a hospital at any point in their adulthood. But I don’t want to turn a certain new-found edginess into PTSD by dint of my reading and my over-active imagination.

What I want to do is get better and I think I’m doing as well as I can with that. The lack of any improvement on the peripheral neuropathy front, after seven long months, is admittedly frustrating and it wears me down a bit. But I know that patience is the key requirement in recovering from GBS. My Neurologist said I would be well before summer was over but would not be fully recovered until closer to Christmas. So far, I have beaten his predictions by a long chalk and I’d like to keep on doing that.

My Mum, back in the day, was an enthusiastic utiliser of faith healing and all manner of old fashioned remedies. Although I don’t subscribe to any of that, I do see faith healing as just another name for something I do have some time for. I would call that positive healing. I think, with certain medical conditions, it may be possible to make yourself considerably better by approaching whatever ails you with a head-on, proactive, and almost slightly belligerent attitude. I try to stand up to the relatively minor residuals from my health issue with as happy and forward-thinking an attitude as I can muster.

I’m doing great and actively getting better. I can cope with these niggles and keep on truckin’ and one day soon, with a little good fortune, I will be completely well again. I try to run my days like this and I think it’s worked well for me thus far.

But rather perversely - and so much of this thing seems to run counter to logic -  I also find some peace in occasionally saying out loud that I’m not 100% healed yet and that I need to make allowances for that sometimes.

So, month eight, here you come. What things do you have in store for me?

Slightly better ones, I hope.