Friday, 10 January 2014

"Words and ideas can change the world..."

... and it can be in very interesting and un-looked for ways when dealing with dysphasia.

(I promise not to spend this post whacking you all over the head with quotes from my favourite film. Just the title, she said. That'll fool 'em, she said. Image from

Now what’s dysphasia, you ask? It’s a partial difficulty in communication ranging from the very mild to the serious (the most severe form is called aphasia) and both phenomenon are most commonly associated with brain injuries. However dysphasia is also frequently seen as an aspect of the cognitive dysfunction associated with Fibromyalgia, M.E and other chronic conditions. It can manifest in several ways which include mixing up words, inability to think of the correct word needed no matter how simple and difficulties in reading and writing, particularly the misspelling of often simple words.

Dysphasia is probably the symptom I have the greatest trouble in accepting. It has in the past (and probably will again in the future) frustrated me to the point of tears. I’m sure I’m accurate in saying it’s a trial for anyone, but to give some background that’s personal to me and my situation, in my last year of primary school I sat several GCSE level English papers passing all with the equivalent of Cs and Bs. I was strong all round in academic terms, but for whatever reason I had a particular affinity for English language and literature. It came almost as naturally as breathing and with as little effort, and I continued with English literature in particular all the way up to A Level.

In short, words to me are a thing of beauty. They’re timeless and can evoke every part of the spectrum of human emotion when used with skill. If we are as is often said a race of storytellers, then the written word gave us the scope for our stories to live on beyond the humble beginnings of the oral tradition. They are, as one of the most successful storytellers of our time once wrote, our most inexhaustible source of magic.

To be so effortlessly strong with something so beautiful and to have that talent grind to a halt beyond my control? It’s beyond frustrating; it’s maddening.

Prior to contracting Fibromyalgia I hadn’t mixed up their, there and they’re since I was six, and yet now I do so semi regularly. I mix up words in the flow of a sentence when I’m speaking; usually substituting the correct word for a word that vaguely rhymes without my immediate noticing. It tends to occur to me with a delay of a few minutes that I didn’t in fact say what I meant. I also struggle for the simplest of words at times – I can be looking at whatever it is and the word just won’t come to me. The more I notice, the more frustrated I get and seemingly the more pronounced the problem becomes.

Sometimes it’s quite amusing. Recently a friend and I were discussing the best Arthurian adaptions on film - the correct answer is Sam Neill’s Merlin for the record, unless your alternative suggestion is Monty Python and the Holy Grail – and I bemoaned Colin Firth’s performance in 2004’s King Arthur. I was picturing Clive Owen, and had no doubt that it was Clive Owen who lumbered about ineffectually and in fact just played Clive Owen, but my brain was having none of it. Mr Firth, I’m sorry to tar you so horribly.

This sounds like an easy enough mistake to make for anyone, but when it’s part of a regular pattern you have to look beyond the possibilities that you’re maybe a bit groggy or not entirely with it on this particular morning. Enter a demonstration of our friend dysphasia.

(Image from

How do I write this blog then? With some difficulty. Some days the struggle for (elephants) eloquence is a particularly challenging one. (Their) There are days when I just give up altogether, jot down whatever the idea was and hope I remember the gist when I come back later.

One of the biggest frustrations for me in this regard is the fear of (luck) looking silly – mostly because I know I’m a lot more intelligent than Petunia and her mind games let me seem. This probably also spawns from the fact that my biggest personal pet hate is to be talked down to or patronised, and this comes from working in a field mired in academic snobbery. I chose not to go to university, despite getting A Levels which would probably have secured me a place just about anywhere in the country. I know my reasons and given the same set of circumstances would confidently make the same choice again, but that doesn’t stop me (riding) bridling at repeatedly having to justify my (rite) right to the title of a highly intelligent being. 

Whilst I realise that they open some doors which would otherwise be closed, a degree is not the only measure of merit in the smart stakes. If you wanted an example even (moor) more outlandish stereotypically speaking, my Dad is a bricklayer and he regularly beats the winning team of each week’s University Challenge on points, because his (breath) breadth of general knowledge (despite the lack of a university education) is almost freakish*. If you ever wanted to know where my thirst to read and find out absolutely everything came from, look no further. The smug git.    

I’m sure you’ve realised that I’m playing this for laughs to some extent, and that it’s only the best attempt at a representation on screen I can give of dysphasia. It’s not actually anywhere near the mark in terms of what it actually feels like to deal with. At its worst writing this blog can be like trying to concentrate through six inches of concrete whilst riding a hedgehog and wearing oven gloves - and the hedgehog only responds to commands in Black Speech.

Despite the humour, for the reasons I’ve talked through thus far the reality can be nothing short of heartbreaking. It sounds like an insignificant thing, but so much of me is bound up in my love of language and of reading and creating with words that at the darkest moments it feels like I’m missing an inextricable part of my person.

I’m getting better over time, but for a long while I became quite withdrawn in all but the closest company for fear of whatever idiocy I’d accidentally conjure up. I read, re-read, proof-read and standing-on-my-head read everything that I write but to little avail – yet another aspect is that I can’t always see the error in written form. I’ll be aware that I thought the wrong word, but I can’t always spot that I’ve typed it – rather like those chain emails where the first and last letters of each word are correct and the rest is garbled, the brain to some extent puts in what should be there.

In short then, if you have the fortune (or misfortune dependent on view point) of ever meeting me, consider this fair warning that I may with complete aplomb tell you that there is an ancient bylaw in place which states it is legal to kill a Scotsman within the ancient walls of York, providing you shoot him with a bow and arrow and you don’t do so on a Sunday.

Which, as it happens, is entirely true.

Does anybody else have problems with dysphasia or similar cognitive difficulties?
Wishing you many spoons xxx 

*I beat him once, but I’ve never managed it since and that once was with the help of some bonus rounds on the Aztecs, classical mythology and wordplay. Much to learn you have, young Skywalker.


  1. Hi! This is Johnna, one of the admins from Project "Invisible Illness" Awareness on facebook. I just read the entire thing and I absolutely loved it!
    I have Ehlers-Danlos Syndrome, Fibromyalgia, Hashimoto's Thyroiditis, and Postural Orthostatic Tachycardia Syndrome. Pretty much all of these conditions have given me severe difficulty with reading, writing, speaking and thinking. Like you, that upsets me greatly. I have always had a love for language (not just English, but also others), and write on a daily basis. More often than not, when writing I find myself writing the wrong words... sometimes words that are similar to what I was looking for, and sometimes words that aren't even close. I've been working on this one story for over a year but sometimes it takes me months just to get a chapter out. When speaking, I stumble about trying to find the right words to say, even some of the most simple words. Sometimes I'm successful, sometimes I am not... sometimes my husband just has to guess what I'm trying to say.
    Thank you for writing this. I know it will help a lot of people to know they're not alone, and most of all, that they are not unintelligent for it.

    1. Thank you very much Johnna, I'm glad you liked it so much! :-) x

  2. Yes, yes I do. I have a grammar school education and frequently make a balls up when I'm blogging. Stranger still, some days I will be merrily typing along and I'll have missed all the A's out of words, or all the I's. Very strange indeed.

    Transposing one word for another is something I do a lot in speech. I'll either come up with a totally different word with the same amount of letters ('souk' when I actually meant to say 'tent' was the funniest one) or it'll start with the same letter but is nevertheless annoying. It makes me feel like a total idiot. The amount of times someone has looked at me like I have 3 heads because I've made another faux pas.

    1. It's nice to hear this happens to others too in a way because it's reassuring! I know that three headed look rather well too! x

  3. Not when I'm writing, no, thank gods, but I often struggle to find a word or name for an object or a person in spoken conversation. As a former language student and speaker of 3 languages as well as my own, this is incomprehensible to me and drives me frankly mental. I have noticed it is worse the more tired I am.

    1. 4 languages is really impressive! Thanks for commenting Lyn :-) tiredness seems to affect mine too, which I guess makes a lot of sense x

  4. Wow great post! I experience incidents of this often. I was even given a sobriety test because i had a neck spasm and aphasia at a festival. Embracing this setback has given me more appreciation for words and speech. Great Post + Best Wishes-Morgan

  5. Thank you Morgan for your kind comments! :-) Best wishes (and spoons!) to you too x

  6. There's two things I want to say:

    1. Thank you.

    I read this post a few days ago, and I got a feeling that the symptoms I've been experiences are in the same vein as what you're describing. I looked up fibromyalgia, and found all the whacky, seemingly unrelated symptoms I've been getting for the last 6 months are listed right there.

    Today I was diagnosed with fibromyalgia. If I hadn't read this post, I don't think I would've had the energy to bother mentioning my hand issues again, or detail the progression of my aches and pains into my elbows, and I certainly wouldn't have already prepared myself a little for news like that - and I absolutely hate crying in public, so thank you for saving me from that.

    The funny part is, when I read up on fibromyalgia, I tried pressing on one or two of the tender points, but I couldn't detect any tenderness, because I didn't know until today that those places aren't supposed to ache like that.

    2. I get what you mean about frustration, or even getting upset, about not being able to say/write the right word. I had difficulty learning to read, and I think that plus a natural love of fiction makes me really adore words. But spelling is still very difficult for me. More than once I've started crying a little from not being able to spell a word - even with autocorrect - because it makes me feel so stupid.

    And just in case it helps having someone else say it: not saying the right word, or not being quick on your feet with comebacks, has jack-shit to do with your intelligence. You sound like a really wonderful, bright person :)

    1. Hi betterwetthandead!

      I'm really pleased the post helped you and I'm glad you have a diagnosis now, it's always the important first step! I hope your doctors can now start to help you.

      Thanks so much for your kind words :) you are entirely right, all those things do not quantify intelligence and it's certainly not only one thing. Wishing you all the best :) xx