So, you’re happily living your life then … well, have you ever lost your suck?
I cut my finger – just a paper cut. I tried to suck it better. My lips wouldn’t close around my finger. I could bite but not suck … how odd is that? But no big deal, how much sucking does a person do?
Blonde, blue eyed, great career, good friends, beautiful clothes, lovely home, shared with my partner, EaZyD, I knew life was good, that I was lucky but this was, for me, normal. Work hard, look good, be nice[ish] to others, get reward, right?
Wrong. As we all know, life isn’t fair. One day/week/year, life may spin from our control and everything changes. We see it happen to others but somehow never expect it to happen to us. And, yet, it does. In 1998, my life changed forever.
I now live with an undiagnosed neurological illness, a wheelchair, progressive paralysis and HUGE doses of steroids – not a regime recommended for sustaining a party lifestyle!
I have sobbed, screamed, shouted, sulked, somehow coped and occasionally laughed my way through some years of physical and psychological trauma with accompanying lifestyle upheaval and relationship stress.
Who knows how anyone would react to this kind of dramatic life change? I am able only to speak for myself and, for me, it has become more, rather than less, important to live, a life of stimulus, quality and style. To hold on to the real me and not to be defined by my illness and consequent disability. I think that is a normal response to illness-induced lifestyle change.
But, no! To my surprise, I find that I live in a society where physical disability equates to an abbreviated four letter word: can’t.
My response is another four letter word: WILL.
Prior to Elle’s illness, my guide to living a great life went something like this: city livin’- music lov-in’ – poetry write-in’ – chill-in’ with your friendz ...
Post illness, here I am, working long hours at a city job, whilst caring for my wife whose looks, temperament and lifestyle have been decimated by a profoundly disabling illness.
I am not ill, she is. Yet every aspect of my life is affected too. I promised, ‘in sickness and in health.’ I was thinking, ‘she gets flu a lot…’
Sure, I could have left – she has family and friends and I didn’t expect any of this. I’d be lying if I said I haven’t thought about leaving and I am sure I will again, but how could I live with myself if I did? You have got to have some integrity in this life and how many soulmates do you get in one lifetime?
So, for now, we go on, no end in sight.
We do what everyone does, illness or no: we take each day as it comes and live it.
On the best of days, we forget our troubles, take the road into the city, listen to the music and play.
On the bad days, we HOPE for better days to come.
The inspiration for Stiletto Wheels came from our HOPE and commitment to exert our WILL and make good things happen in adversity.
Love and Respect to those who have helped us along the way,
eLle & EaZyD