Being a perfectionist, of course, it had to be precisely 200 days.
Six months and nineteen days between my first multiple sclerosis symptoms and its very diagnosis.
Little did I know that it would eventually transform the rest of my life.
It was September 2004, and I had just dropped off my mother at Dublin Airport for her return to Belgium. On the way home, a strange sensation took hold of the left side of my face, as if it had been injected with thick rubber. Thinking nothing of it, I went back to bed to catch up on lost ZZZs.
I slept for hours.
Later that day, that odd feeling had turned into acute, piercing pain in my left eye and ear, and the few steps from my bed to my bathroom became the toughest and longest walk ever. At first, I thought, “Don’t worry too much about it, after gallivanting through Ireland for a few days, I am obviously beyond tired.”
Panic started to kick in when several days later, pain and tiredness still showed no sign of abating. Instead of firmly being in control of my body, my body had relinquished control without my knowledge.
“Beyond tired” became the understatement of the year, because this level of tiredness was unreasonable.
The sharp pain in my eye and ear, equally disturbing.
It all started in September 2004, on the day of the anniversary of my nana’s death.
(Ah yes, I have an uncanny flair for coincidences).
Autumn turned into winter and early spring. I had gone from hospital to hospital in Dublin to find the one doctor I hoped could heal the stabbing eye and ear pain I felt while talking, eating, laughing, and brushing my teeth.
As a last resort and after six months of misdiagnoses, I had proactively walked into the Accident & Emergency Department in my local hospital. I said, “I will not leave before I know what is wrong with me,” and after a litany of tests, the verdict was out.
It was April 2005.
What a month.
“You have MS.”
Multiple means ‘many’.
Sclerosis means ‘scars’.
“That’s alright, just a few more scars. I wear them with pride because they attest to having had a happy childhood. What harm, so, can a few more do when those already present are not stopping me from being unhappy?”
I was telling everyone I was fine.
Hell, I was even better than fine (Read: “In total denial for a couple of weeks, but fine, still”).
What struck me during that time was that people wanted me to behave as if my life was now over, as if I had just died and gone to heaven (Hell, it’ll more than likely be hell but that’s OK, it just means I will not need an electrical blanket anymore).
Onset – 200 days – diagnosis (Pretty slick for someone with a name no doctor can pronounce, right?).
Being the flexible type of human being, I adapted and started over. Again. In learning to live with an illness like MS, you learn an even bigger lesson, a lesson that consists of three words only.
Many Septembers followed. Some were easy while others were almost deliberately hard.
When I go to hospital for neurological check-ups, I see people with MS with their family or friends, and I realise I am often a victim of my own strength. Friends have told me many times that they don’t mind going with me, yet I always go by myself.
Selflessly, I want to shield family and friends from the confrontational reality of a neurology waiting room. Life with MS can seem like a book where letters have been replaced by numbers or where the cover can be too hard or too soft for its content. In my view, it is very much a case of the illness being mine, but the tragedy theirs.
Selfishly, I don’t want family of friends to see what MS can turn into. I refuse to show them that there is no cure, and after too many who have walked out already, I refuse to give the remaining ones a reason to give up on me as well.
While some people often cannot remember when their chronic illness first grabbed them by the throat, I vividly remember the day mine showed up. Disarming moments like these are meant to grab your attention for a reason. You will always find the moral of the story once you dig deeper in the mindset of the one at the mercy of their own body.
And, as time goes on, the emotional impact of being diagnosed slowly loses its grip on your daily life, on your reality. You feel your heartbeat getting stronger, a heartbeat that tells you that all is not lost. In the distance, you see people walking towards you, refusing to give up on you, refusing to let you go. They help you to your feet and let you lean on their shoulders for an hour, a day or even for a lifetime.
Entering that September wound taught me more than any Sigmund Freud could ever teach me, and in embracing life, conquering the fear of death and banishing doubts about the future, I have found not just the best clan you could ever wish for, but also myself.
A blessing in disguise.
© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2016. Unauthorised use and/or duplication of this material without express and written permission from this blog’s author and/or owner are 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.