This is about what happens when language strikes at the heart of someone living with a neurodegenerative or other chronic illness, and how in general, it cuts to the core of who we are as people, no matter where we live.
Anyone who writes – sitting, lying or hanging off some couch or desk while composing fanciful paragraphs out of single words and sentences – knows how intense the passion for writing can be and how the right rhetoric can light up fires.
What we hold dear about putting pen to paper is the urge to create something out of nothing, quite often to slow down a fast-paced society where the purity of words have become chaotic in their context, and yearn to become meaningful and treasured again.
In the Western world, the right to speak up freely is something we take for granted to the detriment of what words, speech and language genuinely mean. In our society, there should be no fear of being attacked by idle words by those who abide by a different mindset than our own.
And that, of course, that is fine. We are free to think as we please.
George Orwell once said, “But if thought corrupts language, language can also corrupt thought.” This is how hurt begins and where it has intensified over the past 18 months. Written and verbal communication now finds itself under a constant barrage of presidential sh*t.
If Sigmund Freud were still alive, he would have a field day.
We all have distinct ideas about life, religion, gender, ethnicity, disabilities or sexuality issues no matter who or what we are – your immature babysitter, jealous sister-in-law or continually talking colleagues – and indeed, yourself.
Against that backdrop, slander from the highest ranks in the political world makes it easier for others to attack the beauty of words by turning them into acts of cruelty. To make it worse, even the very thing that makes people human is also under a continuous assault, and words like these are not worthy of cherishing them.
The most straightforward example is in regards to those living with a neurodegenerative illness like multiple sclerosis. We know that MS offers you no guarantees, and like a storybook without a story, the framework is there, but the content is missing. Our physical weaknesses are obvious destinations for those willing to use someone’s illness as target practice.
As such, people will grant you approximately one year of sympathy before communication becomes littered with character assassination or people filling in the blanks with uneducated assumptions. You unwittingly become part of an affliction called brainless absurdity and idiocy, otherwise called ‘ignorance,’ something we all have within us to a certain degree.
And yes, even me.
As individuals, though, we should be better than that
As people, we should allow ourselves time to think before we speak, whisper before we shout and learn how to share before we divide life into permanently closed compartments.
As studious and debating members of society, we must eradicate ignorance by listening to what is being said, including its emotions and context. We must also listen to what isn’t being said, because all too often, we do not listen to understand and learn, we listen to reply.
As a writer, you almost intrinsically trust paper more than those who show their true colours by using offensive, shameful language. Nevertheless, you transform each person into the fabric of your narrative for their voice needs to be examined and acted upon.
In the many years I have tried to become a better writer, I found within myself someone more willing to open my heart and mind. Similarly, I learned to rid myself of my own disregard, including that annoying innate Belgian individualistic trait.
The passion for words and writing did this for me.
In the many years you have been a part of my tribe, you told me your own stories that involved ignorance towards your illness and the hurt it caused you. Within that work in progress, the way you handle life with MS, your words are full of strength, riveting and uplifting despite the message they hold.
In return, I hope I help you find you find joy, inspiration and sincerity in and between the lines of each post when times were tough for you. The reason why and how I write is this: if I cannot give you a brutally honest account on (my) life with a chronic, neurodegenerative illness, I don’t see the point in writing at all.
After all, writing is a visible mindfulness session between your mind and your heart, and one I will continue to connect as long as I can. Should I stray from that premise, you can find me in my inbox.
Human decency starts with one word at a time.
Yours, and mine.
In memory of:
They lived and died in pursuit of the truth
Annapolis, Maryland, June 28th 2018