MS, Inc.

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Completely out of the blue, someone recently asked, “Willeke, what is the spiritual currency of your MS?”

My reply arrived just as swiftly: “Spiritual what?! Is this philosophy 1-on-1 at the ungodly hour of 2AM?” I left the question unanswered, but I have been thinking about what a proper reply would sound like.

September came and went like it does each year. Counting down the days to cooler weather, family visits and our national MS conference. It doesn’t sound like much, but once aeroplanes and three-hour train rides get involved, it ends like this: knackered and wrecked, and under the duvet for days.

As you may remember, September is also the month when I first experienced symptoms. Now living with MS for 13 years, I hope the quest for that elusive cure will happen sooner rather than later. After all, hope can only keep people going for so long.

Physically, I have been in dire straits, and I have been through metamorphic mental and emotional changes since those early days. It taught me that to survive, I would require a sincere and realistic outlook on life.

Call it medical rebellion if you wish when I refer to life with MS as a microscopic congress of sorts that rarely agrees, and every so often I want to smack it in the face. And in revenge, it does this:


(The sound of neuropathic pain hitting my face).

It would be foolish to allow similar rhetoric time to dwell inside my hemisphere. For the previous 13 years, I tried to master the ability to see myself without distortion even when the view wasn’t pretty.

The learning curve is still carving out its path to salvation.

Oh, I suppose on some occasions I should have been a more socially accepted human being who doesn’t run when facial pain appears.

On the other hand, I owe it to myself to run when trigeminal neuralgia uses my face as a pincushion or a landing place for lightning bolts.

Or, I could have tried walking instead of taking cabs or using alarm bells to remind me to take my medications. When I take a few steps back, I must admit that somewhere along the way I could have managed better.

Finding the currency of life with MS is not the easiest of questions. Why, how, when, where and what requests answers that come from deep inside your mind.

You search for fear, heartache, joy, setbacks, breakups, fights, ignorance when the only thing you want to say to yourself is this, “You know what missus, someday when you’re old and grey you will know the answers to all the above. Screw the philosophy 1-on-1!”

What I do know is this.

It is hard.

It is unbelievingly hard waking up every day hearing that inner voice in the back of your mind, “Hey, kiddo, remember me? I’m MS!”

That’s right.

The one who will be here for the rest of your life.

MS, Inc. Your new incorporation that from now on will use you to promote itself.

Just imagine that one day you wake up and you think you’re 100% fit.

No MS.

No illness aside from a minor cough. But, then you remember that from this day forward, you will wake up with MS, again and again, and again. There’s no going back, no shouting, “OMG, MS! Get me outta here!”

So, if anyone questions your motives, you tell them that fighting your CNS is not a pity party and that you have already asked yourself every spiritual question you possibly could. Your whole being goes through a mental and emotional NCT test when others test the validity of your illness by using their parameters, their opinions first.

While I am targeted physically, I still want -and need- to be part of the solution by making the invisible, visible. Thirteen years is a heck of a long time to not get to grips with MS, especially on a mental level.

Perhaps losing my only sibling over a decade ago recreated the perspective on life I once held. It poured resilience into a mind that required strengthened for the many years ahead. Hope became the antidote to being tired of always being sick and tired.

Within my own new enlightened view on life, I needed to readjust the idea that I had 100% responsibility for being diagnosed with MS in 2005. Instead, I needed to learn that I had 0% responsibility because I didn’t cause MS to cherry pick me.

But, I did -and still- have 100% accountability for what I do with it now. Every day, I watch a picture of my brother and I tell him, “Hey bro, here we go for another day! Let’s rock-and-roll!” In that sense, I have seldom referred to myself as a sufferer or a victim. It doesn’t matter what takes place, I will only be a victim for as long as I choose to be.

So, what about the sacred currency of my MS?


Accepting my life as is.

Accepting my body, its neuropathic pain and other symptoms as is.

For now, MS is not a battle anymore but a wake-up call that says, “Babe, I’m here, you’re here, we’re all in this together so let’s make the most of it.”

We just need to accept each other as we are.

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8 thoughts on “MS, Inc.

  1. While many people have something going on, I can’t imagine. Since I did the BP MS 150 bike ride in Texas, USA last year I’ve been through many changes and don’t think I can repeat it. Plus I’m laid off and have to raise funds for ME. But I met (and interviewed) a man with one prosthetic leg and this will be his 15th year, Houston to Austin, 170 miles. So, yeah, perspective, and do the best you can with what you’ve got. Hope you’ll blog again soon.

  2. Everything in our culture urges us to keep the invisible invisible. I have to admit I still consider it a compliment when someone tells me they can’t tell by looking at me that I have MS. Isn’t it awful that I take pride in hiding the struggle I go through every day to participate in this world, rather than taking pride in the struggle itself? I’m working on it.

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