After the initial pleasantries & catch ups on how lives have been & changed since we last saw each other a year or two ago had passed; we began getting down to the nitty gritty of what had been getting our goat of late.
The very wonderful lady who I am proud to share my God- mothering duties with, is coincidentally also a wheelchair user, although one who has lived as such for many more years than I.
As we bantered around what would with many friends be awkward topics pertaining to our disability, fellow God Mummy jovially welcomed me into her world, as we then went on to discuss what a trying & frustrating world this can be for us & our families!
I am proud to state that I am extremely blessed on the friends & family front & am lucky to never be short of an ear to talk to should I simply need to vent- however, despite this blessing, today I experienced an increased freedom of expression in talking about my new found disability & lost all sense of my usual fears that I was boring my latest victim of ‘The Discover Disability Factor’, & that maybe I should be moving on to switching the subject back to the name of the latest baby Beckham, or something equalling as banal.
To talk to someone who is a veteran at putting up with the gripes that are driving me so mad at the moment; such as the shocking state of our transport systems from the perspective of those with disabilities- was just so refreshing for me & enlightening on many levels.
Although I was today in receipt of many amazing pearls of wisdom; the single most useful piece of information that I was given by this truly wonderful lady, was in relation to explaining to others how life is to us, as wheelchair users.
Never one to use one word when I can use a hundred, (as I’m sure you are beginning to realise by now), I have long set myself the challenge of finding a way to articulate how frustrating & challenging a day in the life of somebody with a disability can be; (without however ending up rivalling the likes of War & Peace in terms of volume of my message!).
…Enter the revelation of ‘The Spoon Theory’, which was paraphrased to me this afternoon by my amazing fellow God Mummy!
I often hear people speak of light bulb moments in their lives & on reflection this evening of today’s conversation, I feel it appropriate to say that such a thing occurred for me- not in terms of me thinking up a concept, but in one being shared to me that brilliantly expresses everything that I have spent five years trying to say to others!
However much I try, I will not be able to do justice the story of how ‘The Spoon Theory’, was conceptualised by Lupus sufferer Christine Miserandino in a diner in the U.S. over gravy & chips- so if you have a few minutes to read this wonderful ladies own words, I urge you to click on the link below….
If you share my frustrations in never feeling able to articulate eloquently the toll that disability has on you each day, I hope that this link will help you to have a ‘light bulb moment’, of your own & alternatively, if you do not have a disability, then do please still check out this link, as the more people who can take such a forward step in trying to understand the plight of those around them; the kinder the world will be for those having to live in the isolation of feeling that nobody understands!
I pray that tomorrow is as pain & difficulty free as is possible for you all.
Today the thing that has made me smile has been the discovery of, ‘The Spoon Theory’. Thank you so much Christine Miserandino for your wonderfully insightful & encouraging words.