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. 

The boxer

I’m celebrating Valentine's Day with a faintly embarrassing outpouring of affection, and here it is: I love my body.

There, I’ve said it. I do.

Don’t misunderstand me: I don’t stand in front of the mirror every morning and evening talking outloud to it and affirming its loveliness, I am British for goodness sake.

I’m also not saying it’s picture perfect even in the kindest of subdued lighting. But on the whole, I think it’s great.

And the reason I think it’s great, the reason I don’t hate it despite all the limitations it has or has the potential to have, is this: my body is not letting me down. A disease is letting me down.

In my mind, they are two very, very different things.

I see my body as an increasingly knackered team member that is still managing to turn out for my side.

In the words of those irritating Prescott botherers Chumbawumba, it’s got knocked down, but it gets up again.

Because even if, as the widely held theory suggests, MS is an auto-immune disease and my body is attacking itself, then I still prefer to think it’s simply a bit bewildered rather than just plain mean.

It can’t help the random spasms, it can’t help the skewed temperature sensations, it can’t help the stabbing face pain and it can’t help the thoughts-in-a-spin-cycle.

It is not my body’s fault.

And while it fails and falters, it also tries its very, very hardest to help.

So far, it’s managed to heal claw its way back from a number of pretty hefty relapses. Alright, it may never have been a 100 per cent recovery and alright, it might hold part of the damage back and unleash it again when I’m too tired/too cold/have a virus/sat in a hot bath for too long.

But generally, it’s on my side and it’s fighting very hard to stay there.

However, I am fully aware that this state of affairs is subject to change and at some point, my body is likely to stop healing quite as well as it has done to date.

There’s only a certain amount of times myelin can repair to an acceptable level before the damage really starts to hit and more significant and permanent disability develops. 

So far I have been lucky, I have repaired to a reasonable degree. Even if each relapse has left a lingering mucky footprint on my balance, pain, sensation, cognition or vision.

I don't know how much longer this ability to mostly repair will last. And honestly, it's best not to dwell.

So while it’s sometimes been on the losing side in the skirmishes, while it can’t always make me completely better, I would officially like to thank my body for repeatedly lacing up its gloves and stepping into the ring.

:: The boxer by Simon and Garfunkel

Instinct

When I was a child I wanted Action Man scars.

No, honestly, I really, really did.

I thought they’d make me look cool and brave and stoic in the face of suffering. That they’d make me look interesting with a glamorous air of survival and mystery.

I can’t remember if I thought about actually wanting to have experienced the pain that would have been required to gain them, although I wonder if I might have accepted I couldn’t have one without the other.

As a teenager I remember seeing the now defunct MS Society poster with the ripped out spine and it making quite an impression in a way other health campaigning didn’t.

It might have been because it was around the time I was diagnosed with scoliosis of the spine – a closely named but completely different condition.

During my university years, I was pretty sure something unpleasant was looming for me in my health. It never overtook my life, but it was always a niggling sensation and I'm sure one that is common to tens of thousands of people.

By the end of my first proper job, when I’d really had enough and had started to question what it was I was doing, I came to dread the working day so much that I would wish for an accident or illness that wasn’t fatal, but was serious enough to excuse me for a while.

And then, one very special day, it all really did come true. I got my scars. But they were all internal. Laced with delicate devastation through my brain and spinal cord.

I have a sinking feeling that lurking in my psyche somewhere is a horrible desire to be the centre of medical attention. A sort of misfiring Munchausen which actually resulted in a genuine illness.

So in my darker moments I do wonder if I have brought this state of affairs on myself.

I know rationally this is ludicrous and it’s far more likely to be some as-yet-unresolved combination of genetics + geography + teenage trigger illness + crappy luck, but it does make me think.

But then I also wonder that if I can bring it on myself, can I get rid of it too? What really is the strength of connection between our bodies and our minds? It’s a fascinating subject and has been the topic of much speculation – some utterly bonkers, some giving false hope, some genuine research.

There’s an Institute of Noetic Sciences which explores the role of consciousness and healing and is carrying out research into how the inner wisdom of both patients and health care providers could be combined with scientific and technological advances for the promotion of health and well-being.

Whether or not there’s really anything in this, I think it raises an interesting question: do we always know somewhere deep down if something is amiss? And if we do, then somewhere buried equally as deep, is there the answer to fix it?

:: Instinct by Crowded House

Mr Brightside

Perspective. Comparisons. Sliding scales.

They’re all interesting phrases when applied to the way you view things – wealth, achievements, career, family, life. Illness.

Like a number of chronic diseases, the perceived seriousness of MS sits on shifting sands depending on who you speak to.

Perhaps you’ve dealt with reactions from people at the oh-it’s-not-so-bad end of the scale. They’ve seen someone being amazing on the Paralympics with it. Or know a friend’s mum who has had it for 25 years and still doesn’t need a walking stick. Perhaps they know someone who works fulltime and goes to the gym every other day?

On the other hand, perhaps they’re at the other end of the scale and they’ve got a pretty bleak outlook for you. Maybe they’ve cared for someone with the primary progressive form? Watched someone deteriorate before their eyes? Seen someone in the end stages of MS?

It’s entirely possible you’ve dealt with these – and many opinions in between – from the medical community.

During the summer I saw a gp I don’t normally see. He asked how I was generally and we had a general chat about MS and recent research.

He concluded by saying it would be good for his newly-diagnosed patients to see me still working and with a family.

“Because really, for you, it’s just an inconvenience,” he finished. With a reassuring smile, believing he’d said the right thing.

And, if I take a deep breath to calm down and think about that proclamation, then to some degree he was right. I’m currently not hugely debilitated. I still work, drive and most of the time I appear to function like everyone else.

To a gp, who is bound to come across far more aggressive cases, he may well believe he could describe my MS as ‘an inconvenience’ and there’s a little bit of me that sort of accepts that.

But to me an inconvenience means a flat tyre or the radiators needing bleeding or running out of teabags.

It does not mean slipping down the workforce ladder because I know I couldn’t manage it or missing most of the things healthy people take for granted or making the painful decision to not extend our family.

None of these things would I describe as ‘an inconvenience.’

So while I do recognise that I am somewhere in the middle of the health-death track bar, I think we would all like recognition of our own personal scales and a bit more consideration of what might actually count as our inconvenience.

:: Mr Brightside by The Killers

Suspicious minds

We had an away day at work recently.

Sigh.

The very phrase strikes fear. No matter where I've worked, they are the kind of thing that I look forward to with rather less enthusiasm than I reserve for my smear test.

It’s the ‘fun’ activities, the sneaky feeling that everyone else in the room knows a lot more than I do about their jobs, and the having to make slightly awkward small talk with scary-big-boss while simultaneously trying to work out how the flipping hot water dispenser works.

(As an aside, I’m still convinced this ability to get the hot water from the kettle type thing with its inexplicably complicated push button type opening is some sort of ongoing test within our working lives which will one day separate the truly capable from the utterly, utterly hopeless and we will be pay graded on our hot water prowess. Or lack thereof.)

And, with the addition of MS, there is the constant extra struggle to concentrate and contribute without slurring, stumbling or giving the vacant thousand yard stare. Always a good one to bring out at 3pm when scary-big-boss asks you a fundamental question which could determine your entire working future at this organisation.

Anyway, as it happened, it wasn’t bad at all. The fun activities were actually fun and we had the benefit of a truly inspirational speaker, Dave Heeley – or Blind Dave as he is known. Find out about his incredible achievements.

I also had the extra surprise of being given an award for my work. I’ll quickly add that this is not a post to brag. This is a post examining my unexpected reaction to this very pleasant surprise.

This is to wonder why my immediate thought was: “They’ve only given it me because I’m disabled and they feel sorry for me.”

And it’s not just the award. In self-doubting moments, I also wonder if I only got my job because I was helping up some kind of inclusion representation on their employee database.

When did I start becoming so suspicious? Or self-doubting? Is this what 12+ years of MS has done? How much disability prejudice have I internalised without being aware of it?

It’s a dangerous route to go down because it means that I’m not separating the ME from the MS. And yes, I’m aware that – for larger or smaller, depending on the day – MS and I do have some kind of parasitic symbiotic relationship, but I don’t want it to become the relationship that completely defines me.

So I’m trying my best to kick down the nagging voice of doubt and instead accept the recognition on face value. Perhaps it’s not pity, perhaps it’s actually that I’m not really terrible at my job.

Even though I will never work out the secret hot water pay and grading challenge.

:: Suspicious minds by Elvis Presley

Reward

I was on the train to work, half reading something to do with a celebrity I’d never heard of in Metro when I couldn’t help but overhear the phone conversation of the passenger behind me.

He was speaking in that exaggeratedly hushed tone people use on trains. A tone which tries to indicate that you realise it’s annoying to virtually everyone else nearby but you have to take this call as it’s really, really important.

Anyway, I don’t know what the bulk of it was about, but I did hear his report of a trip to the dentist – which was fine, in case you were worried - he needs to go back next August but he didn’t get a sticker.

And this made me smile.

We’re so used to this rewards-based recognition of dental appointments as children, that it’s almost a universally accepted trade-off.

It also remains an irrational but slight disappointment when you don’t get the same sticky well done as an adult.

So, with my annual neurology appointment looming in two days time, I’ve been considering what might be suitable rewards to receive at the end for those of us who are a bit more scrambled.

Obviously new brains and spinal cords, the ability to continually remylienate and genuinely feeling as well as we may look would be ideal.

But in the sad absence of those, here’s my thoughts:

1. A personalised hot water bottle/cool pack, which can be adjusted to suit your personal temperature preferences. And therefore prevent hands/legs/everything packing up on you when the outside environment gets just one degree too warm or too cool.

2. High heels with fancy microchips in the bottom that automatically balance you.

3. This eyepatch 

4. A flashing badge which has a slogan to represent your particular experience on any given day. Choose from: “TODAY I wet myself in public/said stupid stuff in a meeting because my brain won’t work/cried in the kitchen to hide it from my children/fell over outside a pub and had to explain the not-being-drunk thing for the 75^th time/despaired at the benefits system/inwardly crumbled at a thoughtless comment BUT I AM STILL GOING.”

5. A machine which magically allows other people to experience all of your symptoms – both the Boo! Gotcha! Bam out the blue ones and the constant, wearing, dragging ones, both emotional and physical. Admittedly it would only be for a short period (unless they’d really annoyed you), but it may help them to gain some insight into what it is you’re trying to explain.

:: Reward by The Teardrop Explodes