Life with MS?
“60% blood to keep the phlebotomy department satisfied, 10% sweat, and 0% tears.”
When I’m told that 30% is missing, I agree.
“30% is memory loss, which rather proves a point.”
A mathematical genius I will never be, that much I will admit. A Pablo Picasso, Salvador Dalí, or Vincent Van Gogh neither. I will also never feel instant gratification from singing live on stage. In fact, there is not one artistic bone in me at all. I do love art though, passionately even, but that is as far as my own creative intellect goes.
I much prefer a writer’s slow process from that one, flickering half a sentence in my head to it eventually making it into my handbag’s notebook or onto the internet. After all, writing in Ireland is a national illness, or a survival instinct of sorts. A lot of ideas come to me by my own form of public crowdsourcing; listening to people and picking up a few words here or there, thinking those words could eventually become a new piece.
It is a rather agonising task though – trying to remember a few words long enough to make it into indecipherable scribbles in my smartphone, on the side of a newspaper or on the grocery receipt I found at the bottom of my handbag, but the reward is like fireworks going off in your mind.
I wonder how my favourite painter, Michelangelo Merisi da Caravaggio, or Cav as I endearingly call him, painted? Did he stop stroking a paintbrush mid-bosom or mid-clavicle when he forgot what he was doing? Did he rush towards a cow to use her hind legs as a canvas while walking in lush, green fields when he thought of a new light stroke to match those famous dark backgrounds on his paintings?
Oh, I do envy them, the Dantes, Shakespeares, daVincis, Vermeers, and Cavs of this realm. Art like theirs is literally a thing of the past, our fast-moving world too critical, swift, and distressing to sit down and create soul-touching art like theirs. Humankind is forever robbed of a formidable ingenious future by not creating such art anymore.
All that aside, I envy people’s ability to create and echo monologues or poems like Dante’s Divine Comedy for example, or remember the tiniest details of something that happened 30 years ago and then write a perfect piece about it. Did Shakespeare ever run home after hearing some well-sounding sonnets in his head? Leonardo da Vinci when he realised he needed to make the first ever helicopter in a different way?
On a good day, I remember what I had for breakfast, but past 1pm, I’m scouring those very dark recesses in my mind trying to find some clue.
Faces are problematic. Names. The combination of them.
Places I’ve been also. “Venice? I was in Venice?!”
More disturbingly, “I was my brother’s witness at his church wedding?!”
“Billie, check your post-it notes or calendar!” followed by, “I have post-it notes? Dear me, I’m richer than I thought I was!”
A fuzzy memory, slowed thinking, and poor concentration are part of MS as over time approx. 50% of people with MS will have cognitive issues. I have to search my brain for words often, where before I could talk as fast as a machine gun. It makes me look as if I cannot speak any English, or that I’m just a beginner in an English language class. Being a perfectionist only enhances that feeling.
Fatigue does influence my ability to talk, not just in my native dialect (Flemish), my second language (Dutch) but also in English. It is quite evident so that my language skills are fine, and that not knowing my linguistics has nothing to do with having to look for words. Failure to complete words or mispronunciation of words is not foreign to me either. I’ve had talks about ‘pilitocs’ instead of ‘politics’ and ‘saw the birds lying flow’ instead of ‘flying low’. As part of my human right to misbehave, I take it all in my stride, and laugh at my own brain f*rts.
Concentrating? “Oh, look, there’s a chipmunk on the side of the ro… Oh yeah, that coffee was great but too much sugar and did you see it running towards the garden?!” I am still waiting for that calorie-rich cup of coffee to cross the road towards my garden, while knowing that many other words are inexplicably linked to whatever caught my attention in that moment.
Much to your surprise, and my own, your IQ level will not diminish when you have MS, and reading and writing will never be affected either. It’s rare that thinking problems become so severe that someone with MS needs constant care or can’t live on their own. Knowing this makes me jump up and down of joy, as I fear losing my ability to think freely and independently.
Memory tests, however, with my neuropsychologist showed that I indeed have issues with recalling, where pulling of prior learning or experiences into the current consciousness takes place, while lacking a specific cue to help in retrieving the information. When I’m given such a cue, I am able to find what I’m trying to remember much faster. Without, brain fog takes over.
Medication can also affect your memory and thinking, so do make sure to see your neurologist or a neuropsychologist if you suspect something might be wrong with your cognitive skills. Otherwise, brain games, plenty of brain games, diaries, notebooks, or filing systems to help you remember things are essential. In addition, keep mind-bending drugs or alcohol to a minimum, as you will need your neurons in perfect shape later on in life. There are many websites and apps out there to help your mind stay healthy, so use/abuse them when you are in need of some extra power.
In short, if you don’t use your brain today, you’re running the chance of losing it later on in life.
Neurologically challenged by MS and personally by her will to succeed, Willeke is a disability awareness advocate seeking to improve neurological/MS services in Ireland. By highlighting difficult issues that come with such a diagnosis, she hopes her tenacity can bring some dignity to people most in need of a modern, inclusive healthcare system that looks after every aspect of life.
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