In his latest blog Martin Baum discusses how raising awareness of the invisible symptoms of MS can only be a good thing.
I was at a wedding at the weekend. The weather held, vows were exchanged, and glasses were filled to overflowing in celebration. The bride looked beautiful and although she should have been the centre of attention there were moments during the occasion, because of my balance, that I felt all eyes were on me. I wobbled several times during the revelries in a very cartoon-like way, arms flailing wildly as I rocked back on my heels, almost as though I was desperately trying not to fall off a cliff edge. That was the worst part for me. To everyone in the room, the way I felt it, these were the actions of an inebriated guest although I hadn’t touched a drop.
And yet given the theme of invisible symptoms chosen for this year’s World MS Day, I thought my involuntary drunken reactions were quite appropriate in the circumstances. But while I can cope - albeit some days better that others - with all my invisible symptoms such as speech, vision and mobility, it seems that I’m still not as ‘cool’ about it as I like to think I am. It’s one thing to out-stare and face up to anyone judging me for taking a disabled parking space when I look ‘normal’, parking my car on a yellow line or even using a disabled toilet. I’ve long got used to ‘owning’ my MS and will not be embarrassed for taking full advantage of every benefit given to me. But what use was that to me at the wedding?
Despite reassurances from my wife and son that nobody really noticed or even cared, I did. In my mind the whole room was watching and that wasn’t anyone’s fault. It was me. I have Multiple Sclerosis. These things happen which brings into play, quite significantly, the events of what happened to me over the weekend, and my appreciation for World MS Day. Although it’s ridiculous to make everyone who saw my ‘drunken’ shenanigans at the church attend the equivalent of a driver awareness course - if only - whatever can be achieved from a day of global recognition will be as warmly appreciated by me as much as it will be by my wife and son. Without them and without their support my MS world would be a lot smaller.
Still so little is recognised by the wider world about MS. But for any of the wedding guests who may have noticed my wanting to walk forward but instead found myself going backwards or in the opposite direction, I would like them to be aware that having MS is more than being mistaken as the mime artiste entertainer at the reception.
I only wish for better in the future and because of World MS day it just might happen. We live in hope.
To read more about Martin's experiences with MS visit his website martinbaum.co.uk
