Express yourself

You can go along, can't you, quite happily bumbling on feeling generally pretty ok about things.

Even when those things include a progressive illness and some boxes of drugs that turn up with 'toxic' stickers plastered over them.

Yes, you think, this is ok, it's manageable. It's my life and people are generally aware of what it means for me.

I've recently had chats with one of those people about the impact MS has on me and the difficulties it throws up for many aspects of my life.

We've talked about my new meds and the implications of what they meant - that I'm progressing more rapidly than thought, that the big drugs come with the big side effects, that there's no guarantee they will work. 

That my life is a bit more complicated than it may appear on the surface.

And just when you think they may have understood, they make a throwaway comment which indicates they really haven't.

So, do you pull them up on it - or just let it go for fear of being seen as a whinger, over-reacting or someone who has thoroughly lost their hitherto reliable sense of humour?

A few years ago I might have brushed it under the carpet and carried on, not pointing out that actually that what they said was quite hurtful. Not just to me, but to others with disabilities.

This time I mentioned it.

The next morning I got an apology. 

It's really, really difficult to call people out on things. It's sometimes even more difficult when it's a friend. 

But if there's one thing we should all be aware of, it's that words matter and we shouldn't be afraid to speak up.

:: Express yourself by Madonna

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. 

Silent sigh

We talk a lot don't we?

There's a lot of important stuff, obviously: relationships, family, jobs, money, the divisive doom of Brexit.

There's a lot of light waffle: how we felt about the latest series of Love Island, which phone to upgrade to and why on earth more than one woman would want to sleep with Boris Johnson.*

And in between these two extremes are the placatory soundbites that we use to fill the gaps when we're told something completely overwhelming.

Sometimes it's because silence in this situation is just too painful.

Silence allows the unspoken horrors that we cover with our torrent of words rise to the surface and bubble over.

I've seen two friends this week and experienced two ways in which words fall short.

The first friend had some truly heartbreaking news to share. The kind of news that really cannot be healed by words - not even the most well chosen ones. Anything I said sounded like I was just parroting the lines that should be said in these circumstances.

The second friend, who has never quite got to grips with the whole MS thing,  punctuated my mention of overwhelming tiredness and fear-driven cog fog with a dismissive "Oh, I know how you feel."
Gnfff.

But it made me wonder why we feel that the thing to do in these situations is fill them with words.
Is it to try and make us feel better? Make the other person feel better?
I'm not sure that they do either.

The words we have can be very powerful, but now and again they will simply not be enough. They cannot bridge the chasm that lies between us and the person who is suffering in a situation we just do not know and cannot understand.

Quite often the words are about how we think we should react, about our own panic and our own fears. And that is never, ever going to be helpful.

So instead of talking, perhaps sometimes it might be best if we close our mouths. That we just shut up and listen. And truly pay attention to what we're being told.

:: Silent sigh by Badly Drawn Boy

* Answers on the side of a bus please.

Telling stories

It's a peculiar thing this plundering of my own back pages.

This seeking out of the stories that lie in the past 13 years and searching for helpful or positive or humorous or honest threads to stitch all the pieces together.

The patchwork notion of storytelling has been on my mind a lot lately, sparked partly by the more blogs I write and partly by my current reading material.

As absolutely no one has failed to notice, we're living in turbulent times and today, on International Women's Day, strikes are being carried out in 40 countries in an attempt to highlight women's power within global economies.

This movement was kick-started with the women's march carried out in the US the day after the recent presidential inauguration.

Hundreds of thousands of women and men took to the streets, many of them brandishing placards which quote from Margaret Atwood's The Handmaid's Tale. 

Margaret Atwood is one of my absolute favourite writers – if you've never read her, you really, really should* – and the current referencing of her work has lead me back to The Handmaid's Tale.

I was re-reading it on the train home yesterday, propped up by a scrum of commuters in the less-than-fragrant rush hour carriage, when I came across this potent little sentence: “If it's only a story, it becomes less frightening.”

If you've ever read The Handmaid's Tale you'll know this is not necessarily true, but the whole notion of the 'story' and the process, power and possession of the narrative is one of the key themes of the novel.

It is also one of the key themes in our own lives – what are the stories of our selves? And, as the quote posits, if they are less than palatable, does the telling of them really make them less frightening?

Maybe. Storytelling is as old as speech itself and over time the healing power of it has become recognised in the field of narrative psychology and is a central tool in addiction and trauma recovery.

Being able to reclaim a story through painting or talking or writing is integral to rebuilding, reconstructing and recovering a sense of self.

So with this in mind, I am writing.

If my speech once slurred when I was trying to run training on alcohol misuse, if my spasms kick the cats off the bed or if my Tecfidera-induced hot flashes cause random stripping, they do at least make an entertaining mass of stories.

And they are my stories. And I am in control of the telling. 
Because in the end, as the great Margaret herself said, "A word after a word after a word is power.”

:: Telling stories by Tracy Chapman 

*At-a-glance quotes from Margaret Atwood, but really, I recommend shutting yourself away now with a blanket and one of her novels. Your soul will thank you.