Every so often, people say things that shouldn’t be said.
Some things just shouldn’t.
Us humans – living, breathing, excessively addictive to social media – have to endure the result of a very selfishly applied verb.
We communicate. And not always very well.
In fact, I am sure your brain-to-mouth filter runs into trouble every so often, and you have suffered from that same technical glitch just as much as I have.
We just cannot take back our words.
For example, one of my friends sometimes tells me to speak a bit softer just before a film in the cinema. Similarly, others who know me well would jokingly say, “Do you like, ever, finish a story?” when I find my mind wandering in conversations, and I am trying to find my way back into it. It is not that I am too ignorant to know what is allowed or not, I just realise too late that something’s amiss.
Like, really late.
Realising my voice is too loud because of dysarthria, or not applying the red light that makes people stop saying things, just so happens to be stuck somewhere in my upper echelons 1% of the time.
What prevents healthy people from rambling on, is their mainframe stepping on the breaks. In certain people with MS, however, their speed of information processing and executive functions slows down over time. While cognitive issues might be a fact of life in MS, overt dementia in MS is rare. But, whichever form it takes, cognitive problems have an impact on daily life in more ways than just described.
What I think? Oh, I do believe that I turned a little bit left of centre somewhere around 2005…
Clumsy? Oh yes.
Still quick-witted? Nope, slowed-downed dopiness post-2004.
Applier of newly-invented-Encyclopaedia-Brittanica-worthy gobbledegook? Definitely.
Either ‘the birds were lying flow’, or ‘foreign pilitocs’ greatly interested me. Some, in fact, wondered if they needed to call a white coat as involuntary spoonerisms like these have caused laughter and memories that needless to say, others have a far better recollection of that I have.
Me? I thought my newly acquired talent for involuntary creating weird words out of ridiculously dull ones, was hilarious. I thought had it down to a tee.
When I look back to 2004 and since, I must admit my mental state has slowed down a few milimetres.
Chats are interrupted by, “Oh, look, a dog!” or after saying five words, “Hmm… what was I just talking about?” Add moments of indecision and problem-solving issues, and I go, “Sorry, can YOU please check that out?” or “I will do that ANOTHER time if you don’t mind?”
My neuropsychologist pointed out that sometimes, my ability to handle particular mental tasks may skip the F1 pole position, but that brain training was a great way to stop the decline.
He should have told me that I needed to wear a red warning light on my head on days where I’m not anywhere near pole position.
Worst of all was…
Just last week, upon telling my mum that the light went out in one eye because of optic neuritis, I had to say to her, “I can’t see in one eye, but don’t panic!” When mother-dear developed a slight fear, I had to add, “Yes, I still have another eye and the light is still on in that eye!”
Despite the severity of the situation, I thought I’d give it a hilarious swing to make light (Dear Eye, no pun intended) of it to not overly worry my mum, after all, to me MS symptoms are a daily thing and not all that menacing anymore. I merely didn’t realise in time that this was not a moment to joke about losing half of your eyeballs.
Moral of the story: when your brain-to-mouth filter is not working well, telling serious stuff like this to your loved ones should be given the respect that serious things like this deserve.
We can all agree so that Willeke’s filter got jammed somewhere.
Where, when and how? Imagined or reality?
Most definitely much too real.
Most of you know that my fatigue is often fatigue with a capital F, and at times, capitalised front to back. It’s no secret anymore that when I’m near falling asleep while standing up, I either start talking gibberish, get all teenager-giddy or stop talking altogether. It is what I refer to as “Making the most of my near-empty barrel of energy!” because I am about to go incommunicado for a day or two when the battery has completely died.
Many years ago, another friend told me that one of the family connections had recently been diagnosed with MS and that he would talk loud on occasion without him realising this. My friend eventually apologised to me for thinking I was just ignorant and that she now understood that there are moments where I do not have the loudness of my voice under control.
Hearing her say this felt like a small victory in the battle of invisible cognitive symptoms. As an MS-patient, I do not want to drag my illness into every conversation because it annoys me as much as it annoys anyone. It can be embarrassing and cause self-confidence issues of fear of upsetting family and friends.
Allow me to extend my friend’s apology, so, to anyone who found themselves near my half-asleep brain-to-mouth filter. When you hear I am going way off-track or talk too loud, please do not hesitate to give me a sign to help me find my way back into the conversation.
After all, talking in Ireland is a national illness, or a survival instinct of sorts.
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