Background
EaZyD and Elle
Elle
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.
EaZyD
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
Stiletto Wheels 
2 Responses to “Background”
Hi, My father is in a wheelchair and is so far self sufficient and able to get around in his car. However, he is starting to struggle with the complexity of getting himself and wheelchair in and out of the car. I am therefore interested in how other people who are paraplegics cope with this, expecially in later years of life when their body and strength start to deteriorate.
I would be interested to hear from yourself and any of your readers as to how they cope and whether car manufacturers are providing solutions for independant wheelchair travellers. Drive in people carriers are great when traveling with a family but a bit excessive for a single person. Do others lift themselves in and then have to drag their wheelchair in behind their seats after first taking it apart!
Any advise and information on the subject would be much apprreciated.
Many thanks for your time.
Hello Karen,
Thanks for stopping by on my blog and sorry for my delay in replying. It’s been a bad week!
Sorry to hear about your father but, as you know, deteriorating conditions are a constant in the wheelchair users world. Sadly, there’s no one solution to fit us all which means some hunting about to find what suits you – that is, your father – best.
I’ve come up with a few places you and your father might glean a few ideas from:
This article by Emily Ladau on Awesome Tips … has good advice: http://www.reallyusefulstuff.co/10-awesome-things-that-can-help-you-be-a-successful-adaptive-driver/
And this by Mark Wilson on shifting up a gear – forgive the pun – in wheelchair transportation ideas is good too: http://www.promove.uk.com/blog/wav-3-letters-making-big-impact-world-accessible-transport/#more-1066
You might try browsing Disabled Motoring UK: http://www.disabledmotoring.org and the Disability Horizons site and possibly attending a Mobility Roadshow: http://disabilityhorizons.com/2013/07/mobility-roadshow-what-caught-our-eye/
Otherwise, an internet search on wheelchair accessible vehicles in your area will generate sites of those who adapt vehicles and give you some ideas to think on and there are also links to more on the Motability site as a guide to reputable suppliers.
I have a WAV vehicle from Steering Developments who are based in Hemel Hempstead and also offer solutions that help automate the lifting and storage of chairs for ambulant wheelchair users: http://www.steeringdevelopments.co.uk
There are also companies like AutoAdapt that offer some solutions which may work for you: http://www.autochair.co.uk
I have had some contact with Brotherwood Mobility: http://www.brotherwood.com who were really helpful but I didn’t choose to buy their product as the Steering Developments WAV was more suitable for my purposes.
The information you need is likely to be very fragmented I’m afraid which, I think, is a reflection of the huge variety in personal needs, geography and the methods of financing available and used in this market.
I hope my advice helps give you some useful places to start your research and please don’t hesitate to ask if you need more.
Best regards and good luck, elle :))