Tag Archives: fear

My Parallel Life

smileI often wonder what my parallel life would be like.

We’ve all been there; the dangerous fork in the road at diagnosis.

On the one hand, there is the weight of societal pressure – MS is ‘other’, it’s incurable and  it’s quite often progressive.

On the other hand, there is the relentless, miserable push to fight back, beat it, win the battle that always weighs heavily on our minds.

What should we do?

Conform to that first pressure?

In my case, if I’d done just that, I would have meekly accepted the year-long systematic bullying in work. I could have said, ‘thank you’ when they sacked me for having MS. Of course. I would quite possibly have taken their sage advice, ‘but surely you can live on benefits now?’ ‘We simply can’t have you here, you’re a liability, don’t you understand that?’

Fair play to them, after a meticulously well-planned and devilishly malicious campaign (by three grown adults, I mean, really?), I took my P45 and left. And quickly slid into a black pit of utter despair.

Conversely however (fair play to them) they handed me back a reason for picking myself up. I discovered I still had a single shred of dignity and decided to fight back.

Fast-forward from that awful day in October 2012, I am living a life I love. I took my employer to court and won. Not much, but just enough to take The Teenager to New York to show him where I lived when I was 19. Bizarrely, as part of their settlement, they didn’t ask for non-disclosure. Perhaps they knew I would never sink to their level and to this day, I have never publicly named their company.

Instead, I chose a different life. I kicked back against everything I was expected to be – grateful, humble, diminished. I decided to draw up mind-maps of what I wanted to achieve, despite it all. Funnily enough, I did the same when I was 17 – travel, learn languages, have kids and work out how to wear a beret with panache. I failed the last one. Badly.

So now, at the grand old age of 41 (but apparently I look six months younger), divorced, single mother and living with MS, I take absolute pride in how far I have come. In my ex-boss-led parallel life, I would be scratching around for crumbs of comfort, falling helplessly into a routine of abject nothingness.

It may not be the life I envisaged for myself (those grand plans of hosting literary ‘salons’ in a plush, velvet room in Paris, learning how to make the perfect Martini, doing something – but it’s better than the alternative).

I am not fighting back. I’m not in a war with MS. I am just deciding that what I do now should mean something.

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This Is What MS Feels Like

lonelinessImagine you had a life-long friend.

This friend’s been with you through everything. Every high, every low. Seen you through weird and wonderful adventures across the world, the birth of your child, a near-fatal car crash.

One day, this friend turns on you. To begin with, you don’t really take much notice, you’re too busy trying to get on with life. You ignore the niggling doubts. You trust this friend implicitly, with your life. But the warning signs become hard to ignore. You’re sure they’re drugging your coffee, it’s the only thing that could explain the overwhelming fatigue. They begin messing with your mind, mixing up your thoughts, your emotions, garbling your speech.

Things escalate badly. They begin pushing you over and tripping you up. You never know when it’s going to happen and you start to live in fear. Your balance is shot to pieces, the pain is uncontrollable. You start going out less, hiding yourself at home. You’re bullied at work because of the friend, who by now is an enemy. This will ultimately be an excuse to fire you from a job you love. Friends abandon you, leaving you even more isolated. Your family can’t begin to understand what’s happening to you, no matter how many times you try to explain.

Your income drops as you have to reorganise your working hours, your social life is non-existant. Simple tasks become mountains you have no hope of scaling. Just getting through each day in one piece becomes your sole aim. Fear and loneliness are now your constant companions, keeping you up into the small hours, frantically working out what your new future will look like, if you have one at all. Every area of your life is rapidly changing beyond recognition, so fast you can barely keep up. Your son cries in his bedroom. He can’t cope and you don’t know quite how to console him when you can’t even reassure yourself.

This is what MS feels like. Your body, your friend through life who has never let you down before, attacks you from every single angle.

Drugs, treatments and a superb support network have restored some kind of order to my life, although it is not the life I had before. But those black, dark days will remain with me forever. And they may, just may, reappear at any time. Carpe diem.

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