Monday 29 September 2014

biting the hand that feeds

Long-time visitors will know that I am a bit of an arse and as such I have a number of pet-peeves – including but in no way limited to:
  • People who moan all the bloody time [a bit rich, Mr Domino?]
  • The bloody Spoon Theory
  • Inspirational aphorisms  - “I have MS but it doesn't have me” (oh really? Is this on day two or day three of your steroid infusion?)
This week, I've hilariously added the MS Society to the list...

I fully appreciate that the charity obviously does a huge amount of good work for people like me who have been landed with this crappy condition. But sometimes I do get cross with them.

The other day we received a copy of their Christmas catalogue and there were a number of items sporting the slogan, "I'm not drunk, I have MS".

I admit – in the early days of my diagnosis, I might have had a bit of a rueful chuckle at that. But now it just gets my back up.

By linking being drunk (a potentially pleasant experience which doesn't last forever) with MS (deeply unpleasant at times, no cure at present) are we not belittling ourselves and the condition we struggle with on a daily basis? Some people could see this slogan and think that, if being drunk and having MS are so easily confused and interchangeable – even on the most basic level – well, what's the big deal?

So far so nit-picky.

But my real problem with it is that as a statement it's arsey and juvenile – and not a little confrontational. Yes, some people need educating and they shouldn’t jump to conclusions about people's situations – but is being so "in-their-face" all that useful?

It links to my thoughts about moaning above – like the Sp*on The*ry, this kind of thing just makes us look all whiny, complainy and weak. And speaking personally, if I'm talking to someone and they try to lay something on me in a similar fashion, nine times out of ten I'll make my excuses and avoid them.

I get that this kind of thing could spark a conversation which could allow us to advocate for our condition – but the slogan is on items in a Christmas catalogue. If I presented them to (for example) my mum or even work colleagues, they would think (with some justification), "oh God, Steve's banging on about his MS again – does he really think we've forgotten? We know. We wish we could do something about it."

On the whole, the people who will see this statement (on a T-shirt or a pint glass) are already on our side – we're preaching to the choir, to the people who already have our back. 

It's not as if a t-shirt is going to alter the perception of someone who makes a daft comment when we're staggering down the street – that level of education is somewhat bigger than a bottle opener. And yes I know the conversation has to start somewhere, but is this really as sophisticated as our argument gets?

I'm really not trying to pick a fight with an organisation which does so much good. But I've seen the kind-of passive-aggressive attitude implied by this slogan a bit too much in the MS community over the years. People who almost rear up to offload their symptoms in the opening rounds of a game of Disability Bingo, scoring points when they find out that I still work full-time.

And I'm not denying the cathartic power of this phrase when we're feeling a bit crappy - but on a t-shirt? As a major campaign slogan for (arguably) the leading MS charity in the UK?

One final point which my wife made - if someone is walking down the street and their gait is so poor that they look inebriated, maybe they should be using a walking stick? Or some other kind of mobility aid?

I've talked on here in the past about my initial problems with using my stick. Maybe the MS Society's time might be better spent destigmatising (certainly amongst younger people with MS) the use of sticks / walkers / wheelchairs.

FINALLY finally, here are a couple of alternative slogans – feel free to appropriate!
  • Myelin, Mai Tai… Your round [needs more work but shows promise]
  • I am drunk AND I have MS! [probably my favourite - especially if it says Let's Party! on the back]
  • I have a chronic neurological condition, therefore I drink [a bit long for a t-shirt – maybe a scarf?
And of course, my old favourite - I have MS (it is what it is)

Monday 22 September 2014

monday evening epiphany

A sudden, not-especially profound realisation while I was doing my Rebif injection - not quite 30 seconds ago.

The train of thought went something like:

"Here we are ..."
"... injecting these drugs again..."
"... no one really knows for sure if they're helping..."
"... but at least I'm doing something..."
"... I guess it could be the wrong something??"
"... Still... Better than nothing..."
"... Huh..."
"... Isn't this how most people justify religion?"

So there you have it. My Rebismart injector really does take that long and I am a bit of a smart-arse, even when I can be pretty sure that no one can hear me. 


ADDENDUM - 23rd Sept

It might sound flippant but I realised when I was having that train-of-thought that Medical Science is now my religion (or at the very least fills the gaping void at the heart of me where religion 'should' be).

It might even be the same for you but at best it's a level of blind faith.

SOMEONE told me that doing something [in my case injecting Rebif] would slow down disease progression so I've been doing it ever since. While my relapse rate is [touches wood] pretty much the same as it ever was, I get noticeably tired and I'm a bit forgetful - but then I am very much the wrong side of 40.

Still - at least I have the option (through the twin marvels of the NHS and Medical Science) to do something about it. And it's got to be better than doing nothing, hasn't it?

Thursday 18 September 2014

(don't) lean on me

one of these men could've been me
We had quite a cultural weekend - first up we went to see a performance of FLOWN by the wonderfully named Pirates of the Carabina.

This was one of the maddest shows I've ever seen - one of those performances where you can tell how good at their jobs people are, by how easily you're able to believe that they're TERRIBLE at it.

The blurb calls it "confidently choreographed chaos", which is pretty much perfect. Performers were flying over the audience's heads on bungees as the show "went wrong" all around them. The fact that everyone was able to sing and play musical instruments while they were performing incredible physical feats was just.... teeth-gratingly annoying.

In a good way, obviously.

It was a show where you can get a bit blasé about the things you're seeing - "oh there's somebody supporting their body weight with two contact points on a vertical pole. And they're not even wobbling..." - before you realise just how incredible that really is.

Here's a trailer:

This show was the launch event for the big cultural street arts festival that I've mentioned in the past, which is on in a week or so. This is quite exhausting at the best of times, but especially so when - as has happened - the only other person who works in your department has left suddenly. This doesn't impact so much on the festival, but it does mean that there is a shed-load of work which needs doing back at work at a time when I'm traditionally run ragged anyway.

Long-time visitors may remember that one edition of this festival pretty much led me into a relapse. And I wasn't even trying to sell my house at the same time then...

Anyway - although it is undoubtedly  in the post for delivery at some unspecified point in the future - it isn't showing up if I can help it.

Anyway, FLOWN ties into the new area that we're hoping to move into at work, which is Contemporary Circus. And another part of this is a series of Street Circus events which we've been organising in our local Business Improvement District (BID). It was the last of these at the weekend so we pottered on down for it.

It was great - although I do wonder that it's not really a job for a grown-up. Plus it looks like so much hard-work - effectively each of the guys we saw was performer, narrator and audience development coordinator, all rolled into one!

We were pretty settled on a bench with a picnic lunch, and because we were pretty settled we got fairly involved with a bit of pre-show banter with the perfomers. So it shouldn't have come as a big surprise that the "big healthy-looking young-ish family man" was invited up to assist with one if the acts.

I genuinely didn't know what to do so obviously I got up and made my way onto the performing area, while our technical guy tried desperately to catch the performer's eye with the international "not a good idea" sign.

Anyway, as I made my unsteady way over to him [without using my stick, as I didn't want it to be turned into a joke], he obviously clocked my discomfort and said "Are you OK? Look, if you'd really rather not, I don't want to make it any worse...", at which point I made my excuses and sat back down.

The image at the top of this post is NOT me (although he is clearly another speccy dad of a certain age). I'm so glad I wasn't involved, otherwise we'd have all been on the floor.