Wy wonky words, wonky names and other MS befuddlements
If you’ve got MS, then in all likelihood you know of, and could well experience ‘Cog Fog’. For the uninitiated, it’s estimated that more than half of people living with MS have, or will develop cognitive issues such as losing their train of thought mid-sentence, not having the faintest idea why they entered a room, suffering sometimes catastrophic lapses in concentration etc. etc.
For much of my career, I have worked as a freelancer, typically on six month contracts. So I’ve met and worked with lots of people, in lots of different offices. Not the best recipe for somebody who didn’t realise she had MS and Cog Fog. Once I was working at a leading property development company and had already been there three months, when one of my colleagues popped into the Marketing Department to catch up with me about the copy for the newsletter. After the usual niceties, I proudly announced that she would have the copy by the end of the week and I thanked Karen, warmly, for checking in with me. A sudden, ear splitting, brain numbing hush descended. You could have heard the proverbial pin drop. All within earshot now seemed to be staring down at their shoes, as one. What an earth could I have said? Whatever it was must have been truly awful I thought to myself, whilst trying as best I could to suppress any sign of embarrassment, or panic.
Karen simply stared at me with a look of bewilderment written across her face, as though I was suddenly speaking in Swahili. I’m sure you all know the feeling, when seconds pass as though they’re centuries. Karen, except it wasn’t, broke the silence and said, in a perfectly civil way: “you’ve been calling me Karen for three months now, my name is Kelly”. Another pregnant pause, until Kelly, followed by the rest of her colleagues, started sniggering, which soon built up to guffaws of infectious laughter, led by yours truly.
Cog Fog in action, a most definite example of a loose cog. Looking back, it’s not as though we’d never been introduced, or I hadn’t heard her being addressed as Kelly a few trillion times, or seen her name written often enough. It was as though my MS had said to my brain ‘what do a few letters matter, getting the first one right is the key thing and will do’. Thing is, I was a Communications Consultant! Thankfully, my credibility and perceived competence didn’t suffer. If anything, we had a newfound camaraderie.
When I said Ied the laughter, mine weren’t your average common or garden laughs. Although it’s never been diagnosed, I’m convinced I suffer from a neurological condition called Pseudobulbar Affect (PBA).
In PBA, there’s a disconnect between the brain’s frontal cortex, the area which helps control emotions
and the cerebellum which regulates motor movements, including laughter, according to some scientists believe. Anyway, the effect is involuntary bouts of crying, laughter, or anger, in response to a trigger. The outbursts are often totally out of proportion. In my case, the PBA trigger response is always uproarious laughter, as it was with Karen aka Kelly, whether appropriate or not. The way I explain this to people is by telling them, think of Joaquin Phoenix in the Joker. Not that I think I am quite that bad. Plus, I have never knowingly murdered anybody for art, as he did in 'The Joker' Batman film sensation some years ago. Mercifully, most times laughter, why and however it comes from, has ridden to my rescue in MS inspired awkward moments.
Back to my Cog Fog. I had been visiting my favourite boutique restaurant, Rubino's, for some years, when one particular time, my friendly waitress and I had got chatting. She stopped me, abruptly, mid-sentence. Margaret, as the loose cog in my MS brain indubitably had it ever since my first visit, told me that her name was not Margaret, but Heather! I actually find it quite upsetting to get people’s names wrong, I feel it shows disrespect, which is not my way at all. I’ve always tried my best to remember names, but as I now know, thanks to Cog Fog it's hit and miss whether I get them right.
The good news is I found a work around. So, when I visit Rubino's now, I know I have to associate Heather’sname with an item e.g. Lucky Heather. It’s worked every time but has obvious limitations as far as the world at large is concerned. At some point, if I try to associate names with articles for too many people, I'll end up in the same mess as often happens with trying to remember secure website passwords. And suppose I meet a Zikimo, Giancarlo or Xzayvian ? What then? And some associations could well be a very unfortunate PBA trigger if a name rhymes with something comic, or worse still, lewd. What the heck, don't worry about what may, or may not happen tomorrow, stay in the moment, as my Mindfulness teaches.
As MSers and those close to them will know all too well, Cog Fog goes well beyond just forgetting, or mixing up names. One day, for example, I was on the way through the kitchen, to the utility room, with a pair of socks in my hand, with the intention of popping them into the washing machine. My MS brain had other ideas. It seems that for whatever reason they ended up – guess where? In the microwave!! I have absolutely no idea why, except I do - Cog Fog. If by chance a neurologist, or neuroscientist ever reads this, I'd be fascinated to know how the brain comes to be rewired, or suffer short circuits so as to make this kind of thing possible. Fortunately the fog cleared in time to stop me in my tracks and prevent me from microwaving the socks.
My loose cogs, short-circuited or rewired brain, whatever it is, seems too seek out ways to upend me with my microwave, in particular. I love to drink tea and have a favourite red mug which I always use in the morning. I hunted high and low for this bleedin' mug one morning, checking the sinks, the dishwasher, the cupboards, my office. Pretty much every room in the house, for a good 10 minutes. Finally, my partner said, come on, you know you really know where it is. Think. I clicked. The previous day I had warmed up my cuppa. I can't abide cold tea. There it was, with the cold tea still in the mug, left to fester in the microwave, from the day before. Bonkers. My MS befuddled brain had obviously decided to jettison the whereabouts of the mug as no longer of interest. It’s as though I no longer own my own brain, it’s now well and truly in the thrall of my MS.
It’s scant consolation to know that I’m far from alone with my Cog Fog. The other day, I read about an MSer who threw dirty laundry in the toilet instead of the washing machine! Another MSer got tired, whilst out shopping with her mother and wanted to go and sit in the car while she checked out. The MSer promptly got in the wrong car and settled in next to a man she didn’t know, scaring the living daylights out of him. In case you’re wondering, nope, the car didn’t look at all like the lady’s mothers. All these things put me in mind of the madcap schemes and things which go awry in a Wallace and Gromit film. All those levers being frantically pulled and cogs whirring as the next disaster looms.
Sometimes I also mix up words. A few weeks ago, I happened to be having a conversation with my neighbours about some work at their house. I dabble in property development and was intrigued to know how, with what they had planned, they would be able to accommodate their car on the drive. My brain managed to turn ‘space for car’ into 'space for the car park' . Not completely outrageous, but a bit of a stretch. It’s as though my brain now operates on a kaleidoscope telescope principle, except the beads are letters. Imagine there are pre-set patterns which the brain knows the words must fall into, but it no longer cares, or is able to control the actual words used.
Although I’d definitely rather not suffer from Cog Fog, in a way I look forward and enjoy the befuddlements it creates. A good laugh is so often the result. And who can ask for more?
Relapsing Remitting MS
Editor: Clare talking of workarounds takes me back to a one on one business meeting with somebody I’d never met before. The man could see I wasn’t walking normally. We got talking and it transpired he knew more about MS than me, due to the fact an uncle who he was close to had been an MSer for years. At one point during the meeting I said: “look, the three things which concern us are’, spat out numbers one and two, only for the Cog Fog to descend and the final point was gone. After a minute or two of stuttering and stammering, followed by silence, my interlocuter said, in a kindly, understanding voice: “a word of advice if I may. Don’t make yourself a hostage to fortune by announcing how many points it is you intend to make. Just say them”. I’ve happily lived and survived by his advice ever since.