W is for…


So spring is in the air. Daffodils are blooming and the weather has notched up a degree or two. I always love this time of year. As they say at home, “there’s a great stretch on the evenings.” A true sign that time is moving on, seasons are changing and the clocks will change soon too.

Seriously, time passes too quickly, if I could invent something it might be a machine to pause or slow down time. Although that machine might have stiff competition from my desire to invent a cure for my condition- I wonder which one is more likely? Let’s hope it is the latter!

Anyway, back to the task in hand… Lots has been happening since my last column. Maternity leave is drawing to a close and I’m dashing around trying to squeeze lots in to my ‘last few weeks of freedom’ (if I can call them that, with an ever energised 10 month old in the midst!) Come to think of it, I’m unlikely to ‘dash’ anywhere these days. In fact I’m having a good day if I can walk a few metres completely on my own now- and here in lies the focus for this month’s column…

A recent and regular appointment to hospital gave rise to the following conversation between myself and the doctor:

Doctor: “So Michelle, how are you getting on with walking when out and about these days?”

Me: “Oh great, to be honest I go out walking most days, some days even twice! It’s great since Tíernan arrived, I walk lots.”

Doctor: “That’s wonderful. I presume you use the pram when out walking with Tíernan? So what do you do when you don’t have the pram to use for support?”

Me: “Yes, the pram is a great help when getting out but if I don’t have it, I usually have Seamus or a friend to help.”

Doctor: “O.K., so do you not tend to go anywhere alone?”

And BOOM! There it was. A stark reality that deep down, I probably was aware of. A reality that I hadn’t quite admitted before. And another harsh reality of living life with a debilitating and degenerative disease such as Frederichs Ataxia.

That ‘reality’ is of course this; I can no longer walk unaided for more than a few metres on my own. Rubbish. Absolutely rubbish. But remember my mantra? There is always someone worse off. It could be worse, I might not be able to walk at all. They say that will come too but I hope with all hope, that I can delay that for a long time. In fact I won’t mind if somebody else, somebody scientific or medical and ‘in the know’ chooses to ‘borrow’ my idea for that invention and maybe invents their very own cure for my ‘lovely’ condition. I really won’t mind that at all!

Anyway, this conversation developed on to talk of independence and maintaining safety from falling. Inevitably, the ‘W’ word was mentioned. What word is that you might ponder? Well, it’s a word that has bounced around in my head a time or two. A word that has been mentioned to me before and a word that I (up until now) didn’t mention much as ironically, I didn’t want to give up on my independence.

That word is of course, walking stick. O.K., that’s two words, I know- but you get the picture!

Now when the ‘W word’ was mentioned, my immediate reply was, “No way, I’m not that old yet!” Now I know that lots of people use sticks to help with walking; lots in fact who are much worse off than me and many of them possibly even younger.

But my perception of a walking stick until that moment, was in all honesty a stereotypical one where sticks were used, in the main, by older people. Looking back on it, a big part of me also probably didn’t want to admit that one might help me because would that mean that I’ve got worse? Would that be a sign of deterioration, or worse even, a sign of weakness? By using a stick, would I be letting the ‘F Word’ (Frederichs) win?

There aren’t really any answers for these questions but on that day, that doctor brought me around to a different way of thinking. He told me of people before who had similar thoughts to me. One poor lady had a nasty fall whilst walking unaided and had to temporarily use a wheelchair whilst waiting for bones to heal. The only problem being that her ‘W word’, the wheelchair, was not temporary and in fact became a permanent feature, as her Ataxia deteriorated due to her being more ‘immobile’.

Now that got me thinking. Did I want to get into that situation? And I think if you know me, or you’ve been following my column, you’ll know that the answer to that one is a huge, resounding and adamant, NO!

I can now see the doctors point. Ironically the ‘W word’ might actually help me gain more independence when out on my own and of course logically thinking, it should keep me ‘safer’ too.

Does that mean that I’ve totally ‘come around’ to the idea? Well, not quite. To be honest, my big things (as stupid as they may sound, are) will people look at me if I use a stick? Will I ‘stand out’ more? Will people judge me for using a stick?

To some these worries may sound silly, trivial even. But to me, they are big! I’ve had to learn to deal with lots of things since my diagnosis but dealing with people’s judgements, never gets any easier- even with plenty of practise!

Now don’t get me wrong, I’m not letting this get to me. It’s just something else I have to deal with and as Seamus reminded me, people look at me for ‘walking funny’ anyway- so would a stick be that bad?

It’s a tough one. One I will have to think a little more about. Perhaps even you can help me? Should I embrace the ‘W word’ in order to continue my fight against the ‘F word’?

Come to think of it, I’m not sure that I even have the luxury of this choice?! Perhaps my new desire for invention should turn from a time machine to instead inventing a funky and fashionable ‘W word’, one that could provide bonus points for ‘street cred’- what do you reckon?!

There certainly is lots to ponder before that ‘stretch’ in the evenings becomes even longer!

Until next time folks, chin up and keep those smiles on!


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