The first day, 18 years later
Change is good.
Change helps us develop resilience.
Change helps you discover who you really are.
I totally agree. In fact, I welcome change with open arms.
Afraid of new challenges?
Nope.
Change provides more than just insight depending on what, how and when it’s required. Sometimes it can be much-needed, and if it does, it can enrich your life.
Words to remember.
In my native country, Belgium, that tiny speck in the middle of the European Union, I spent the majority of my life with my nose tucked in books and working in a library. Then, twenty odd years ago, I had seen and heard enough. I realised that aside from my family, I had absolutely zero in common with Belgium’s history, culture, and values, and knew that in order to be happy, I would need to emigrate to the country I had fallen in love with somewhere around age 14 or 15.
In short, for years I yearned for Ireland. I waxed lyrical about its people, its sense of community, its literature from Joyce, Wilde and Yeats, its history and its open arms.
Four days after my arrival, I started a new job in what was called ‘a paperless company’. Going from a professional bookworm surrounded by hundreds of thousands of sheets of pages to an incident coordinator in an IT company without books tells you all there is to know about my penchant for challenges.
My nana, somewhere between 1984 and 1986: “If you do something, do it well or else don’t start at all.”
Her perfectionism borne from having lived and survived two world wars, and therefore having to rebuild towns and communities from scratch, she more than had a point, one I gladly still apply to this day.
Challenges, of course, come in different forms and sizes, as well as reasons. On the first day of my MS diagnosis, in a hospital waiting room of a well-known Irish neurologist, I wished I could undo being so in need to control the narrative. If life really wanted to tackle me, let me tackle it first just to gauge the breath of its intent.0
That MS diagnosis had already sunk a few items on my bucket list before the ink was dry. There was a need to reset the clock.
Little did I know that one day, my neurologist would be pivotal in my life’s quest for all things positive. After years of seeing my cognition take different routes to achieve a similar outcome that is both swift and sound, I wished I had her brain. I could almost see it in 3D right in front of my every eyes, her perfectly formed brain full of every bit of neuroscientific data. Data I so desperately needed to function.
But, no kidding.
Eighteen years ago, in those new surroundings, I didn’t want to adapt to what I was being told. “From now on you will have to change your lifestyle, like work. And you will have to educate those around you because there are plenty of misconceptions about multiple sclerosis out there.”
Erm…
As if.
I still hear and feel the impact of those words, like glass falling to the floor, breaking in thousands of pieces, cutting deep in what I saw as an intrusion in what I had accomplished the past few years.
Fiercely independent as always, my first thought was that, “Erm…wait, what?! No, I am not adapting to anything. No way. Nope. Nada. Not happening. With all due respect, Professor… I moved to Ireland 2 years, 6 months, 12 days and about 23 hours ago. That change you ask of me? Ain’t happening.”
At all.
Educating people?
Seriously?
They can sort out their own need for information. After trying to ‘educate’ people post-diagnosis, I found that most won’t bother.
Me: “Hey, I found this video about MS, maybe that can explain things better than I could.”
Friend, 5 days later: “Yeah, I watched the video. I’m so sorry MS is like that.”
Being a tad curious, I went back YouTube to watch the video again, or to copy the link to add to my blog, I noticed that the number of views on the video were still the same as the day I sent the link to said friend.
Result: you failed to watch it otherwise you’d be able to tell why I am always that tired, that your kind of after-work-tiredness is 0% like MS fatigue, so please do not question why I can’t go to the office, and why recuperating from a few symptoms is like walking backwards to Rome, in high heels and without road maps, leaving me as tired as I went to bed last night.
Morale of the story: in some people’s mind, you’re either not that sick, or you can’t be bothered learning about what ails your supposedly best friend.
After plenty of years having to justify my life, illness, personal decisions and whatnot: I am finally at a place in life where I am able to say to myself…
Whatever!
In my mind, following plenty of hope they would at least make some effort led to plenty of disillusions. Hence, I now think they can sort out their own need for information, just don’t expect me to have to explain away my patient experience as well as my medical knowledge to suit their ignorance.
After 18 years with all that hoopla, you do kinda think you’ve made enough leeway to suit those who refuse to see my worth.
And while some do vicariously live through the lives of other people – imaginary neurology experts graduated from the Google Search Academy – their actions do have an impact.
So, sure, I know I’ve got my gang sorted out. They’re with me. They learn as I learn. We go through exacerbations, sleepless nights and bad days together.
I have MS. Big deal. I know what I need to do, and that is not changing my lifestyle.
Asking me this, that, blah blah blah.
Look, I am walking. I am talking. I can move my arms and legs up and down and I bet I can climb a ladder also. I am going back to work tomorrow and I am going to have a great time.
Later that day, a forced dinner with a friend was on the menu because “you just heard absolutely awful news and you are so, so in denial.”
Yeah, whatever. I am not in denial, I am fine, and I am still going to work tomorrow.
In a relatively empty, quiet restaurant, however, all I could hear was noise. Buzzing sounds. As if bees were living in my ears.
Talk, talk, talk… talk.
And then some.
Why did my friends make more hoopla about it than I did?
Is this what silently dealing with things was like?
How and when did they suddenly change into fake neurologists when I never asked them to be?
Why did the dynamics of our friendships change so suddenly?
What the hell did they know about my new status as holder of a lifelong, incurable, degenerative and progressive illness?
More buzzing.
More wondering.
More knowing.
More needing.
More wanting.
Less living?
Oddly so, when I went to bed later that day, I felt cheerful in a curious kind of way.
Rather happy, knowing that I was not joking about not being able to get up the staircase of fatigue after coming home from work.
Rather happy, knowing that I “was not a Monday morning case, refusing to go to work,” something my consultant in my local hospital admitted to when we met.
Rather happy, knowing there’s actually a name attached to the sensation of floors moving up and down, to that awful, wretched facial pain, to that level of tiredness.
Knowing which illness now lived inside my brain and spinal cord, was half the battle won already.
Eighteen years later, I tell myself “Do not deny your diagnosis, but try to defy your verdict.”
What my neurologist asked me to do, did eventually happen. She had all the technical data of what MS was, but 18 years later, I now know what MS’s force is capable of. Her strength in knowing what lies ahead has been my backbone for at least 17 years.
True, I am now a bit slower when I walk and talk, and I need more time processing things inside my brain. I also gained a few pounds around the waist because of all kinds of treatments. In the end, denial was short-lived, and I now have a new life.
It wasn’t what I had dreamed of, but it’s here to stay.
Making the most of life is what counts.
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©Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2023. Unauthorised use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.
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One Comment
Storyteller
Great read. Sydney Australia here and 17 years for me. I must say that when I was first diagnosed they told me I needed to start injecting myself. I was like thinking no way. I felt fine. In total procrastination I went on no meds over the next 4 years until…bam…my first relapse. Just watch me scamper back and go on those meds.