A mixtape for multiple sclerosis

A mixtape for multiple sclerosis

Wednesday, 20 March 2019

You really got me

People deal with a diagnosis of MS in very different ways.

None of those ways are right or wrong, they are simply the way you choose (or are able) to deal with this breezeblock that's been dumped unceremoniously in your life.

Personally, I am an information junkie and I read as much as was available and asked as many questions as I could think of. This is possibly due to a) my previous life as a journalist and/or b) my inbuilt overwhelming nosiness.

During my reading and questioning, I came across a phrase which was repeated over and over again on forums, inspirational quote websites or in interviews. It seemed the unofficial slogan of the community.
If you have MS, I'm pretty sure you've seen it too, it's the catchy: “I have MS but MS doesn't have me!”

And yes! I thought, when I first saw it, that sounds like an ideal mantra to have, maybe I'll even have it on a t-shirt! 

It seemed positive and hopeful and a little bit fighty and I liked that. And while I was still fortunate enough to be pretty quiet on the MS front five years after diagnosis, it remained a slightly smug motto.

But then, as the relapses became more severe, took longer to recover from and left more damage, I had weeks when I was certainly more in this camp:


Sometimes, there is no point in denying that MS does have me. It had me when it took my sight, it had me when it stopped my speech and it has me when it forces me to review and adjust any number of my personal spheres.

But to live with MS means to find your own balance between the two extremes: the optimism and the despair, the denial and the knowledge, the fight and the fear.

Fifteen years since I found the first MS mantra, I still try to retain the positivity of it - but am now far more likely to temper it with the reality of the lived experience. 


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