My New Normal

 

The question was simple, casual:

“Would you like to join us for a drink at the bar?”

I’d been to one of my regular jaunts into the Highland capital for a literary meeting, and the kindly folk were being, well, kindly.

The answer however, was not simple.  The answer was complex.  It was at that moment I realised how far from normal my life has become.

I didn’t give the complicated answer, of course not.  Who wants to know that I can’t drink alcohol, or caffeine, or in fact anything at all after 7pm; that I have to be in bed before 10pm to stand any chance of getting anywhere near enough rest; that the effort involved in getting a train into town and walking to the meeting saps my energy and renders me good for nothing for at least 24 hours, and often longer; that my poor long-suffering fiancé has to drive into town to pick me up – an hour each way – because it’s too much for me to get a train back home?

So I smiled.  Declined politely.  Wondered if they thought I was rude, or weird. Or both.  They didn’t need the in-depth explanation.  It’s neither warranted nor helpful. It doesn’t make either of us feel better.

But sometimes I’d like to explain. Sometimes I’d like to clarify – that my constant leaving of the room is to go to the loo.  I’m not sneaking out for a fag or a drink; I’m not being rude and I’m not bored.  My bladder disorder means that I am unable to retain urine in my bladder without being in extreme pain.

I’d also like to point out, that however offensive it might be, my sweating is not something I can help.  The pain causes the sweating.  It’s autonomic.  I don’t like it any more than you do.

I might also stress that my lack of sociability is down to exhaustion.  I can’t volunteer to do things because I would not be reliable.  I can never guarantee from one day to the next what my energy levels are like; when I’ll have a good day or a bad day. And my good day might be a very bad by your standards.

So, I will continue to smile and answer the question simply.  For your benefit.  For my benefit.  I will continue to live my nowhere- near- normal, normal-for-me life. And when I see people who look sad or troubled, or in pain; when I see people giving the simple answer – although you can see the complication in their eyes – I will not judge.  I will wonder what trials and tribulations they are going through.  I will signal my solidarity to fellow sufferers of invisible chronic illness, who look so very normal but whose lives are anything but.

 

 

Photo by Debbie Mathews.  Installation by Sophie Cave, Kelvingrove Museum Glasgow.

Sick of Superheroes

 

 superheroes-1560256_1920 (1)

Really.  I’ve had enough of them.  There’s a never-ending stream of boys in spandex, or metal – cape optional – with the odd girl thrown in for sex appeal; although let’s face it, it’s mostly boys: Batman, Iron Man, Spiderman, Captain America, Ant Man, The Hulk, Thor, Blade, Ghost Rider, Dr Strange, Black Panther and Nick Fury.  Are you bored already or shall I go on?

I’m no expert.  I have no idea how many superheroes there are and I’m not about to do a Google search to find out.  Actually, I’ve just done a Google search, and the results are staggering.  The list goes on for pages and pages: fan clubs, games, Lego, costumes, films, TV, and merchandise.

Marvel has defined the superhero in contemporary culture. Marvel’s own modern incarnation was in 1960’s comics in the USA, although the brand had other manifestations prior to that.  The comics transferred to TV in 1966 and the brand was bought by Disney in 2009, and as you’d expect, a continuous excretion of films, games and attendant merchandising, raking up billions, has followed.

These superheroes do not live in a vacuum.  There are the requisite villains, of course, super-villains who always get defeated and yet always rise up in some new incarnation bigger, meaner, stronger.  That’s one of the things about superheroes; they need villains to be able to ‘do their thing’.  And we all know what that is: the fights and explosions.  Except what used to be ‘Bing!’ ‘Bang!’ And ‘Kapow!’ has turned into increasingly realistic special effects which are less and less comic style.  With the violence bigged-up on screen, there is often massive destruction in its wake and these ‘good guys’ often kill as many civilians as they save.

In an ideal world with power comes responsibility, but seemingly not if you wear a costume and a have a super-ego to match your super-powers.  Oh no, then you get carte blanche to cause as much death and destruction as Mr Villain.  Superheroes, supposedly a fighting-for-good patriotic bunch, seem to be enjoying a punch up for the hell of it as much as for anything more noble.  Though unintended, it’s a neat metaphor for a country that wades in all over the world picking fights with villains of their own definition, often for less than moral causes. Superheroes create super-villains and war monger create wars and rebels.

OK, so I don’t need to see another superhero film.  I can let my partner get on with it and pass.  The fact is, I will still be bombarded with this stuff: in trailers, in the media, on- line, in kid’s games, in adverts, and in merchandising.  You can’t avoid it.  It’s in the ether and the psyche.  And it’s depressing.

We all know life isn’t as simple as good guy/bad guy, but these stereotypes stick.  Look at the female superheroes.  Surely we have more in our armoury than sex appeal?  And let’s face it, girls don’t get out of bed in the morning with point perfect makeup and no bed hair.  We do not all have figures like Scarlett Johansson.  But as long as guys are making the movies…

Best not get me started on those topics though, I can feel another rant coming on!

Look, what about the ordinary people?  My superheroes are all real people who have fought against the odds, the Mandela’s and the Malala’s of this world, the Paralympians, the ordinary people who are less than perfect but are standing up for what they believe in against hostility or persecution.  And what about the ordinary people who have superpowers?  The peacemakers and leaders, those with quiet perseverance?  I’m with Bowie – ‘we can be heroes’ if we believe our ordinary lives matter, and other ordinary lives matter: black lives, LGBT lives, disabled lives, immigrant lives.

I bet you haven’t heard of Jessica Jones.  She’s an original Marvel character, a private-eye who prefers to use her brain to her brawn.  She’s a superhero in a much looser sense: foul-mouthed, hard drinking, and not a stitch of spandex in sight.  Now she is someone I could get to like, but as yet she has made no appearance on the big screen.

So, as I say, I’m sick of superheroes.  Sick of the fighting and destruction and posturing. There’s only so much escapism this girl can take. We need a new breed of superhero, modelled in our own image, so that real courage and stickability, and standing up for truth are the superpowers we encourage and admire.  For now, if I don’t see another superhero in my lifetime it will still be too soon!