Statuesque

Oooh, it's been a couple of weeks hasn't it?

Sorry.

The reason for this is simply an incredibly busy work schedule.

I picked up a new part-time contract in the summer, which has gradually expanded to nearer full-time.

It's in the communications team of a large organisation - and one which has found itself even busier than usual due to the current horror show.

I'm there to do the 'business as usual' comms that are still going on round the edges of the crisis stuff.

And, surprisingly, there have been quite a few. It's been quite a test - although the work is familiar, the speed and volume is quite a pace on from when I last did this kind of work.

So, my MS brain struggles. I'm not with people to ask all the questions. Plus, technology.

Although it's been quite tough and I have had a fair few sleepless nights, I haven't made a total hash of it (yet) and should probably feel quite proud.

I've also done it through the stress of starting new meds, the increased worry of infection and, like the rest of us, being in the middle of AN EFFING GLOBAL PANDEMIC.

The super exciting comms things so far for me have been the launch of a new music festival and the celebration of an iconic local music venue.

It's been a delight - not least because although I am surrounded by chaos, I am also surrounded by music.

And there's nothing nicer than that.

So in honour of their confirmed appearance at the new festival, I'm paying tribute to one of the acts with this week's tune.

They were a Brit Pop fave and, after making it through the past fortnight, I do feel like I should stand a bit taller.

:: Statuesque by Sleeper

Killing in the name

As lockdown has limited our opportunities to socialise more widely, we as a family have found out quite a lot about each other.

The vast majority of this has been extremely positive.

I have discovered (as I always suspected) that my husband is hugely respected and relied upon at work. I've stood listening to his Teams conversations is awe of his patience and knowledge.

I have confirmed that my daughter has a remarkably long fuse and is thoughtful, creative and pretty resilient.

What she has found out about me cannot be described as flattering, but does, nonetheless, amuse her hugely. And that is that "mummy likes angry music."

She's got a point. She's realised this on a couple of musical roadtrips. As we're not using our cars anywhere near as much as usual, we have taken her on a few pootles to nowhere in particular just to keep the engines ticking over.

There's usually a stack of CDs in our cars (yes, we are that hi-tech). Husband's tend to be pop, disco and generally quite calming. Mine are on the indie, punk, rock side of things.

Or, as my daughter would categorise, angry and shouty.

To be fair, she's got a point. There's quite a bit of hollering in my collection and some rather choice lyrics (although please note I have not played her this week's song).

Not sure why this is. Perhaps I have a huge reservoir of untapped rage that I only feel safe to express through someone else's musical explosions. It might all be simmering away in my subconscious.

Come to think of it, I do have recurring dreams in which I'm an assassin. These are great by the way, a particularly vivid one seeing me chase down Idi Amin with a machine gun in our local leisure centre.

Then there was the one where I was a samurai on horseback, slicing my way through an oncoming horde.
Maybe I need a touch more warm milk before bed.

But I view these car-based outbursts of musical anger as a healthy way to express my feelings, without causing actual physical damage to the nearest window/crockery/despot.

Aaaah, lockdown life, things you never knew you never knew. And maybe didn't want to ever discover.

:: Killing in the name by Rage against the machine

Words

I love words. Just love them.

I did an English degree, I trained as a journalist, I read voraciously. I love language. In moments of stress I love bad language. The more creative, the better.

When I discovered why my body was packing up, I also entered into a brand new world of language. Words like oligoclonal bands, myelin sheath and optic neuritis were both hugely frightening and delightfully musical.

And – in the manner of Carrie Bradshaw – this got me wondering about language and MS.

More specifically, the way people describe the MS community and disabilities in general.

There’s the nicer-sounding words people use while hoping they are saying the right thing. Words like “brave,” “inspirational,” or “warrior.”

They're usually from a good place but can sometimes make me feel like I need to live up to a person I'm just not.

However, they’re a heck of a lot better than “sufferer", "unfortunate” or "invalid." Think about that: literally, not valid.

And, depending on the attitude of the speaker, these are the words that can cause an unintentional drip-drip of damage to your self-esteem or be blatantly slap-in-the-face offensive.

I’ve been lucky, I haven’t been exposed to a lot of language-related nastiness. But there has been one comment that has stuck with me. 

A former colleague once asked me if I was going to have a flu jab. It was autumn time, I heard no warning bells go off, it seemed a perfectly reasonable enquiry. I said I was and received the response: “Oh yes, they give them to your lot don’t they.”

"Your lot." 

Two little words. Just seven small letters implying that I wasn’t with the ‘us,’ that I was somehow different, unusual, exclusive – and not in a good way. 

Not just that, but as if there was some marauding and diseased horde of ‘your lot’ ganging up on the normal, decent, respectable people.

It was a Daily Mail-esque description and made it very clear the damage words can do.

Sometimes poor word choice comes from a lack of understanding, sometimes it's simply a fear of what to say for the best.

But a conscious choice of hurtful words indicates a divisive and dangerous attitude that does nobody any good. After all, if there's one thing we don't need more of, it's division.

So in the way we talk about disability, as well as how we refer to other things in life, we would all do well to mind our language.

:: Words by The BeeGees

These handy guides to inclusive communication have been produced by the Government - it’s almost like they care. 

Pounding

My latest MRI is done and dusted and now I'm just waiting for my neurologist to interpret the results.

It was a slightly shorter scan than I'd anticipated at around 30 minutes and I only had chance to get through a few of the tunes on the CD I'd chosen to have pumped through the (not massively effective) noise reducing headphones.

This was the first time that I'd realised that the hospital staff were also being subjected to my musical taste - I had previously assumed that they were able to just send it directly to me without having to suffer/enjoy it in their control room.

The thought of having to listen to other peoples' music choices while working - like being in an office with a radio stuck on a station you hate - made me shudder slightly.
But not too much: no moving allowed in the tube.

It's not easy to find suitable music for the scanner. Once, with an MRI on Christmas Eve, I was saved from having to make my own decision by having festive music selected for me as I slid my way in.

The staff explained they were desperately trying to help everyone enter into the festive spirit, hence the seasonal songs and the tinsel around the tiny tube. But I have never been able to listen to When Santa got stuck up the chimney in the same way again.

Sunday's scan indicated that while I had hit the jackpot with some of songs on my chosen CD, the opening bars of Wide Open Space by Mansun were a little ironic given that I was trapped motionless in tiny tube under a face cage.

But what was undoubtedly successful was this week's tune. It somehow fit the swooshing and clanging of the magnets without jarring uncomfortably.

With a carpe diem chorus, it is relentlessly and joyously anthemic - and that's what you need when you're stuck in a cylinder with just your chronic disease for company.

I'm pretty sure this particular listening scenario is not what the band had in mind when they were composing, but I'm delighted they wrote it anyway.

:: Pounding by Doves

Comforting sounds

In what I am trying very hard not to make a festive tradition, I spent Saturday in an MRI scanner.

Close to the Big Day as it may be, the 17^th of December was actually pretty good - three years ago I spent an hour-and-a-half on Christmas Eve in one. And while, in comparison to many other medical tests, I quite like an MRI, most people would agree that there are limits to what they will do to get out of the festive shopping.

But the hospital had tried their best – tinsel around the weighing scales and height chart for the pre-scan measurements – and while I turned up prepared with my own CD, I couldn’t resist the option of having the hospital’s choice of festive music piped into the protective headphones.*

First song on was East 17 Stay Another Day which for some reason made me chuckle a lot, until I remembered that the first rule of MRIs is NOT TO MOVE unless you want a stern, disembodied warning voice cutting through the plaintive warblings of Walthamstow’s finest.

It was only a short one this time - just 25 minutes on the gurney with a cage over my face so I didn’t have too long to stay still. Or ponder on the confusing and mildly inappropriate nature of ‘I saw mommy kissing Santa Claus.’

The aim was to get an up-to-date scan of my brain to see what damage is already there before I begin my Tecfidera (which, incidentally, I still don’t have as my MS nurse is still not well.)

The results will form a baseline reference guide to check whether the new drug is working by highlighting any patches of new activity which shouldn’t be there if the drug is doing its stuff. Obviously if I get a relapse which has clear physical impact, I will know about it, but this will also help track and gauge those sneaky instance of damage that indicate silent deterioration.

I’m fascinated by how the varying grey and white patches are interpreted on these scans. I’m also endlessly amazed by how magnets make pictures which make medical meanings.

I do ask my neuro to go through my scans to explain it all and I try to nod knowledgeably while he patiently does so, but as with a lot of things I can understand it for a while before it wafts off into the medisphere and I have to ask him to go through the whole thing again the next time I see him.

I suspect I am not alone in this so I don’t feel too bad. And I can always blame the big white and grey mush he sees on the screen before him.

The only thing I find mildly disappointing about the scan pictures is that my head is not actually sectioned liked the Numskulls with expanded areas for gin drinking, obscure song lyric retention and knowledge of useless trivia.

If I had an MRI scanner that’s what I’d programme it to do. And that would be worth 90 lying still minutes of anyone’s time.

:: Comforting sounds by Mew

*These, by the way, do not block out the repetitive clanking and banging of the magnets, they just dull it a bit. I do know people who drift off to sleep in the scanner – possibly understandable it’s warm, you have to stay still – but I’ve never managed it myself. Perhaps a skill to develop over the next few years as there will inevitably be more close encounters with the tube.

Nothing but love

We went to a gig this week!

It deserves the exclamation mark because it’s a rare occurrence these days.

I used to go to quite a few during my university years, and when I worked on the paper we used to be sent free tickets so we could write reviews.

This resulted in some quite unexpected evenings out watching bands that you wouldn’t even pull out of Woollies bargain bin.

My friends are also all frighteningly musical and write and play their own stuff so I’m surrounded by talented people – both amazing and depressing for the tune-free lump that I am.

This week’s gig was with James (the band, not the Bond) and hubby and I went with friends and had a perfectly lovely time.

James were as good as ever and the whole thing was massively, massively uplifting.

The audience was mainly made up of people older than us (always a joy when you hit your 40s) who looked like they were having the time of their lives.

There really is nothing better than looking around at a gig and seeing the entire audience arms aloft, faces smiling, singing as one.

In the emotional armoury of life, music is an extraordinarily powerful weapon.

:: Nothing but love by James