E is for…

So it’s a lovely ‘summery’ hello from me this month folks! I can’t believe that summer time is upon us already but I have to say, it’s a great time of the year! Somehow, everything seems that little bit easier, a tad brighter and a whole lot more fun in the sun! Don’t you agree? (Well, providing the sun is shining of course!)
The weather is certainly something I’ll miss when we move back to ‘the homeland’. Right as I type, the sun is out and the birds are singing! Rain is a distant memory and the winter woolies are packed away. Somehow I think that might be a slightly different story ‘back home’. Although, fingers crossed hey?!
Once again, I need to thank EVERYONE for liking, sharing and spreading the ‘F Word’! Honestly, the response I’ve received to date has simply been astounding! It’s great to know that my blog / column is being well received. Some people have spoken to me in person or emailed me to thank me ‘for helping them’. I’m truly honoured and privileged that I have been able to do that! I could never have dreamt of a better outcome when the blog idea first initialised almost a year ago!
So this month, the focus is on the letter ‘E’. I deliberated this one for a while but in the end, ‘E’ was the letter outriding all the others because naturally it is with a huge mixture of emotion and excitement that I approach the future!
The fact that I can even say that is testament that I refuse to let ‘The F Word’ (my condition: Frederichs Ataxia) win! I have a feeling that this particular ‘F word’ would have relished to overcome me in many ways had I given it the chance since my diagnosis in January 2015. 
Of course the little blighter has fought, and won, a few battles against me but I like to think that it’s ‘even Stephens’ and the war has yet to be won!
Most certainly there are days when I wish I could walk to the shops on my own or carry little Tíernan further than a few metres. Obviously I wish I didn’t have to ask for help when out and about on my own and who actually wants a ‘blue badge’ as a ‘not so trendy label’?! Yes there are countless times when I wish I could hop up and down stairs like any other, typical 30 something might do! It goes without saying, I always resent the fact that I can’t carry a cup of tea or indeed my plated meal any distance at all. I’d be lying if I pretended that suffering from chronic fatigue on a regular basis and feeling like I’ve been hit by a bus frequently, didn’t get to me. But the fact remains- it could be worse. It could be a whole lot worse! 
The way I look at it, there is usually always someone worse off than you. There are so many ‘F Words’ and so many people fighting their own battles. Some, unfortunately are not always as lucky as me and are perhaps not able to put up a fight to win the war. I try to keep this idea at the forefront of my thinking because it helps me to gain perspective and ironically, helps me to remain positive when those dark and dreary clouds overshadow any silver linings.
Some people just don’t seem to get that though and for some reason, living with a disability has really highlighted another letter and that is ‘I’ for ignorance. 
Previously, I most often associated the word, ‘ignorant’ with a person who might have been rude or horrible in some way. Now however, I see how the term can clearly be utilised to describe people who fail to see the bigger picture and who seem to live consumed by their own world, their own importances and their own agenda.
I say this because unfortunately, living with ‘The F Word’ not only provides me with a constant physical battle but mentally, it can take it’s toll too. That doesn’t mean that it impacts on my mental capability though, thankfully it doesn’t but some situations and people I’ve had to deal with thus far, don’t seem to get that.
I’ve had people refer to my needing help walking as ‘a burden’. My capability to develop and continue my career have been questioned. More often than I care to remember, I’ve had comments thrown at me which seem to suggest that I am a bit of a nuisance now or that maybe I’m not good enough! Seriously, this has all happened! So in 2017, in amongst an age of modern technology, huge scientific developments and drastic social shifts, we clearly still have a large population who view ‘having a disability’ as an inferiority! I can think of many words to describe this outlook but ignorant is probably the best word to print if you get what I’m saying!
My challenge to the ‘ignorant’ amongst us is to sit back and think. The current disabled population are wide and varied, each provided with their own challenges and issues. Yes, some are of course affected profoundly but just because a person is disabled does not mean that they should be treated with any less respect or dignity. Most of all, please remember that anyone, anytime and anywhere could ‘join’ us ‘disabled folk’ in the blink of an eye! Perhaps such negative thoughts could be better put to thinking how so many people, battling and living with their own ‘F Words’, could actually exist as role models for others; instead replacing the dim notion that we are all burdens or valueless. 
So why ‘E’? Why excitement and emotion? Well why not hey?! In amongst all this ignorance, I couldn’t allow for something so bleak to take over my writing! I vow to try to remain positive, even when battling ‘The F word’ and all it’s challenges so at this moment in time, ‘E’ seems most appropriate. 
Our future as a family is exciting. Collectively we are planning our move to Fermanagh with anticipation of something which we believe is right for all of us! There are so many positives that we hope this is the right thing to do at this particular point in our lives. Of course ‘E’ is also for emotion and naturally that brings with it a tinge of sadness. Sadness to have to say goodbye to everyone here in ‘the sunny south east’ and sadness to think of all those things we know we will miss. 
However, if ‘The F Word’ has taught me anything it’s that life is what you make of it. Whatever ‘The F Word’ and whatever the challenge, let excitement prevail and try to hold those sad emotions at bay!
Until next time folks, keep messaging, sharing and spreading the word! Let excitement and positivity reign over negativity and ignorance.
Speak soon,


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