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.