Month Eight Begins

(Photo by James Box)

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-Barré 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.

The Green and Red

(Photo by John Mee)

About three weeks ago, I was sitting right here where I am now, at my desk, in my room, on my PC, when I started to become aware of a strange faint noise. It was a fluttering of sorts, soft but insistent. At first, I thought a bird had got itself trapped in the attic or in the eaves. It was than kind of noise. I went outside to investigate.

It was bunting. Red and green triangular bunting. My next-door neighbour had hung it out quietly, along with flags and, as I saw when it got towards dusk, lights that flashed in those same home colours.

It was that time again. Mayo had won the All-Ireland Semi Final and were on their way to meet God Knows Who in the final in two weeks’ time. The ‘God-Knows Who’ turned out to be Kerry. A highly formidable adversary, a practically unstoppable force.

Mayo’s excellent manager, Andy Moran, set the tone for the encounter in a candid press conference.

"Does anyone here think we're going to win the All-Ireland final?” he asks, “No. Thank you.”

The question he had been asked concerned the Mayo fans and whether they would now get caught up in the hype. Andy was unequivocal.

"Our county has been starved the last four or five years. If they go a bit nuts, let them.”

And it started there. With two weeks to go until the final.

But here’s the thing, or my view of the thing at least: Mayo fans are exceptional. They don’t ‘go nuts’. They never ‘go nuts’. What they do is they support their team. Through up and down, thick and thin, they support the team.

And that’s what happened.

Mayo, where I have been pleased to live for the last 29 years, went into full-on support mode. Nobody went nuts. The task ahead was undeniably difficult, a positive outcome unlikely. But the good people of Mayo got behind the mule. And they pushed.

Two feelings existed simultaneously. Firstly, there was a sense of realism. This excellent young team had already exceeded expectations in this formative year. To reach the final was a colossal achievement in itself. Maybe there wouldn’t necessarily be more this time but it would still be a great year.

That was the first thing. The second thing… well, that was hope. But also something more than just hope, something intangible: a feeling, a sense that maybe, just maybe, this team, these men, could actually pull it off.

Nobody went nuts. But the town of Castlebar along with, I’m sure, the rest of Mayo moved into a fifth gear of support mode. Every discussion had was peppered with amateur analysis and prediction and good sense and, yes, hope. Every conversation ended, like an amen at the end of a prayer, with the exact same sentiment; “Have you any tickets?”

I put out my own flags. Two red and green fabrics looking a little apologetic next to my neighbour’s bonanza. I have never been talented with flags. I think they are a little like dogs; they sense when you are uncertain about them. While other flags on the street waved proudly, ours hung limply and projected only a sort of mild dejection.

The day arrived...

You may be reading this in another part of the world. That happens sometimes, I know. You may not be aware of how it all played out last Sunday, on the day of the All-Ireland Football final, but if you’re in this hemisphere, you probably know.

We won.

Mayo won.

Context is everything. Mayo had not won for a very, very long time. This is not so terrible for some counties, like my own, where the expectation of a win is hardly ever realistically there. But it’s different here in Mayo. Here, the team have been contenders to once again win the Sam Maguire Cup for the longest time. And many times they have come tantalisingly close. Within an inch. But always, in the living memory of most people alive today, the coming close has ended the same way; in heartbreak.

But not this year. After Seventy-five long years of Championship drought, the bright young team of Mayo stalwarts brought it home.

Mayo won.

So now, in the week that just was, so many Mayo people have had something that they never had before in most of their memories. At least outside of marriages, children being born, and lottery wins. They have had a taste of unbridled joy. Nobody knew what would happen if and when Mayo finally won again and what happened did not disappoint. Tens of thousands of people took to the streets, the bars, and the public places and their faces all beamed with delight. Horns were blared and car roofs were ridden upon by ecstatic youths waving huge flags. Old men, stuffed into their team jerseys, were linked through the crowds by over stimulated granddaughters, telling anyone who would listen, in quavering voices, that they had been there the last time, only they had been very small back then.

These young victors stand on the shoulders of those who have gone before, some of whom earned well-deserved medals from the sideline, some of whom commentated on the match, some of whom watched infirm from their rooms, some of whom who are now gone. The ones who went before showed that the power and the skill and the talent were all there, it only required one final unbridled effort to make the impossible real again.

It’s been quite the week here in Mayo. To tell the truth, I’ve been a tiny bit divorced from it myself. As a 29-year resident of Mayo, but originally from up the road, I feel a little bit of an outsider in the midst of all the melee. But then, wherever I’ve been in my life, including home, I have always felt the same. But enough of that. I burst with pride and joy for the team, and I celebrate with my friends in the town. Anything else is just down to me.

As I look out of my window now, trying to think of my next sentence, a stray breeze catches my own meagre flags out in the front garden. Like one more small miracle, the red and green material raises itself off the grass and billows confidently out in the bright air.

Bravo, Mayo.

Bravo indeed!

IMAX Upselling (Telemachusing)?

I think I could possibly take a bit of flak for this one, if anyone actually ever read this stuff. Maybe that’s one of the advantages of not being widely read. I can have my little say and largely get away with it. Wouldn’t the occasional small furore be kind of nice though? No, it wouldn’t, Ken, you’d hate it and you know it.

So, jog on.

Anyway, I went to see The Odyssey yesterday in my local cinema. Not to sound too namby-pamby about it but this is a sort of an experiment in regeneration for me. As I young person, I really enjoyed going to the movies by myself. From about fourteen to twenty-three I did it quite a lot and it was one of my things. Then I went away from it all. First from solitary cinema-going and then from cinema-going altogether. For the first part I had Dear Patricia to accompany me and for the second part I got tired of mobile phones and popcorn rustles and belligerent kids and, mostly, my own lack of patience.

But since I was laid up for a while, I’ve started to acknowledge that I deserve a little something for myself now and again, and one of those somethings is the occasional revisit to the local film house when there’s something on I’d really like to see on the big screen. (‘Big screen’… hold that thought). I sound like I’ve been doing this all the time but, in actuality, I did it yesterday for the first time. Perhaps that means this is more a statement of intent. One that nobody will read (leave that now, Ken, there’s a good lad).

But let’s get on to the point of this post.. but wait, what? You want an Odyssey review? A non-spoiler one? Can you actually spoil The Odyssey at this juncture? (Be quiet, Ken, you’re sounding like a prat.) All right, not a review per-se (per-se is one of my very few readers) but a little of what I thought of it. Okay?

The Odyssey: I really enjoyed it. I was thoroughly entertained throughout. I found it oddly ‘old-fashioned’ in places. That may sound strange for such an ancient story, but Nolan tends to bring modernity to whatever subject he tackles. Parts of the film seemed to deliberately hark back to the Ray Harryhausen days – men on super-real white beaches about to encounter some outlandish beastie. I liked that. Samantha Morton puts in a great shift, and Robert Pattinson is a fine panto villain. Matt Damon delivers his role, possibly in the knowledge that the driven hero is rarely the most interesting character. The people who suffer the consequences of his passions make for a much more interesting story. Finally, the climax delivers a Gladiator-like payoff that is highly satisfying.

So, yes, I really enjoyed this one. I would recommend it.

Now, let’s get to that gripe.

Sitting in my local cinema, with its nice sound system, solid digital projection and sizeable screen, I was aware that I was a second-class citizen when it came to seeing this movie. That mine was a third-rate experience that could not compare to what others were simultaneously experiencing elsewhere.

In my head, I’m calling this The Great IMAX Upsell or, as I’m trying to be smart, Telemachusing.

If you’ve seen hype about the movie, you’ve also seen hype around the format. ‘The first film ever shot entirely in IMAX’, ‘must be seen in an IMAX cinema to be even partially appreciated and, ideally, in an IMAX 70mm projected format.

Don’t get me wrong, I’m sure it’s great. Even the buzz of going in to see it like that, after all that hype, would be great. But, at the end of the day, it’s still pretty basic upselling, isn’t it? And why not? The film is a product, and a damned expensive one at that. If it doesn’t recoup, wash its face, and then go on to make a substantial profit then what can the future hold for grand cinema events. So, go IMAX, go 70mm, back the creation and love it and tell me how much more inferior my own meagre experience was. But don’t lose sight of the fact that you were upsold.

A few weeks back I wrote about the ‘would you like a drink with that’ routine in fast food places. This is the same. Would you like an extra few feet at the top and bottom of your screen? It will turbo-charge your experience. It will change your life.

Except it won’t. Will it?

It’s good. It’s great. But it’s not that good. It’s not that great.

So, yes, by all means, have the drink with the burger. It will wash things down nicely. Just don’t buy into how it might change your life. That’s all.

My viewing of The Odyssey was perfectly satisfactory for my needs. And rest assured that I am one of the biggest aspect-ratio nerds you may ever meet. I detest cropped prints. The VHS rental days drove me mad with their awful 4:3 ratios, hacked to fit our then-boxy TVs. The advent of widescreen TVs and then DVDs with correct widescreen letterboxed ratios delighted me.

So, wait. Maybe I need to accept something here. Maybe I’m just being churlish. Maybe, deep down, I would love to see the film in the ratio that Chris Nolan intended me to see it in.

But I can’t, I just can’t.

And maybe there’s something just a little sad about going all the way to your local dream factory and being told that it’s a second-rate, knock down, dream that you’re about to have.