‘r’ is for… 

R is for..

Well it’s a big ‘Christmassy’ hello from me! Can you believe it’s December and the festive period again? It certainly does not seem like a year has passed! This time of year is  almost always busy. However for me, personally, this past little while has been busier than I could have predicted!

You may have noticed that it’s been a little while since my last column; time has flown past but lots has happened! So this month I’m basing my article on ‘r’ and this time, ‘r’ is for ‘reason’.

In November, I paid a quick visit back to lovely Essex and to the fabulous neurology team in ULCH, London. It was a routine appointment but an important one. In a way, this appointment would assess who is winning thus far; me or the ghastly ‘F Word’.

I’m pleased to report that it’s ‘even stevens’! The ‘F Word’ might think it has the capacity to totally overcome me, but I’m delighted that I can say, the war is not over yet!

For anyone who is puzzled at my reference to ‘The F Word’, ‘F’ stands for ‘Friedreichs’. Unfortunately, I am accustomed to this ‘F Word’ rather too well! Almost 4 years ago, I was diagnosed with Friedreichs Ataxia (FA). FA is a degenerative, neurological disease which is quite rare. Since FA is is uncommon, it affects different people in different ways and owing to it’s complex nature, no one can predict for definite, how bad things might get. Presently the little blighter provides me with tricky challenges when walking and moving around. It also means that I can now barely remember how it feels to be pain free and feeling fresh. Instead the cursed ‘F Word’ provides me with an unwanted understanding of how it feels to be hit with relentless fatigue and a knowledge of how it feels to be forced to slow down at a young age.

So I bow down and accept all this then, right? Wrong! Oh gosh, so wrong! ‘The F Word’ might pride itself on being relentless but thankfully I’m blessed with determination -which I hope, matches some of the strength and power of ‘The F Word’.

That brings me on nicely to ‘r’ for ‘reason’. I’m a firm believer in the age old saying, “everything happens for a reason” and whilst many things about my diagnosis have  affirmed this notion, events of late, have provided more evidence to back my theory up.

Those who follow my column will most likely have heard me report on instances when people halve judged or questioned my ability to continue life as planned, pre diagnosis. I’ve heard it all from comments about me living with a ‘life sentence’ to inferences being made, painting me as a burden. All the way to me even being forced to explain that there is nothing wrong with my brain, it’s just that my legs that don’t work brilliantly.

In the midst of dealing with all the physical challenges ‘The F Word’ throws at me, intertwined with the constant battle I have to fight with societal ignorance, I have often thought that maybe I was destined to battle ‘The F Word’ or something similar. Of course in the initial stages of diagnosis, I naturally asked, “why me?” but upon reflection, I now answer myself, “well why not you?”. On the basis of ‘r’ for “reason”, perhaps its more a case of ‘everything happens for a reason’.

I think it’s an extremely lucky person who travels through life carefree and without worry, pain or suffering of some sort. So in that respect, I think of the ‘F Word’ as being the rough card I’ve been dealt. Yes, it’s difficult and without a doubt, it has changed my life but in some ways strangely, I think it’s had a positive effect in that I now see life differently than I perhaps did before. I try hard not to sweat the ‘small stuff’ and in turn, that helps me fight the ‘big stuff’ if that makes sense? So right there we have a reason. Maybe that’s why I’ve been dealt a card in the form of FA.

So back to my focus on ‘reason’ of late. Before moving home, whilst still living and working in Essex, I seemed to face constant battle over having to prove my ability to still do things. Some days, I honestly felt like wearing a sign that said, “yes, I’m now disabled but no, I’m not stupid and funnily enough, I actually can still function as a person, as a wife, a mum, a daughter, a sister and even a teacher!” In essence, even with my newly acquired thick skin, I sometimes found myself falling into a trap where I would question things. Even with every effort not to, I’d find myself momentarily thinking, “maybe they are right. Maybe I should ease up a little, maybe in some ways I should succumb a little power and give in a little to ‘The F Word’. However, I can thankfully say that those thoughts, although only human, were only short lived.

There in lies that little word ‘reason’. Because since coming back home, lots of little opportunities have presented themselves to me to suggest that everything does in fact happen for a reason. My ‘busyness’ is partly because I’m currently juggling life as a mum of an increasingly active toddler with full time work and everything else in between! So maybe things are just meant to be. Maybe our move home happened for a reason. Maybe one of those reasons has been to supply me with a new lease of life which the ‘doubters’ often tried to convince me, would never happen.

Hopefully upon reading this, you might be able to think about your  ‘F Word’. Try to imagine it as a reason- I find it always helps me to think, things that are bad, could be worse. In this season where we are all busy, it might do no harm to take a little time to reflect on others during this season. Others, who might not feel quite so positive maybe through loneliness, illness or grief. Hopefully some day, these people too find their reason.

I wish you all a very Merry Christmas and joyous greetings for the year ahead.

Michelle x


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