“Progression” or “progressive” are words that have been associated with me for many years now. They are a description of my condition and also those with other forms of muscle-wasting conditions, “The muscle weakness is generally symmetric, proximal, and slowly progressive…” Just lately this has rung very true. I have noticed through self analysis that my feet and legs shake and turn in as I walk and my enthusiasm for walking any distance or exercise that may be considered vigorous has been next to nothing. That’s not all, fatigue is having a massive impact and I become exhausted very quickly plus I am using my very shaky right hand to help my very shaky left hand get a cup to my mouth and so on… I know all this because it affects me daily and I’m trying my best to stay on top of it all. Right now, as I’m writing this, I’m trying my best to keep warm and insulate myself due to my body’s thermoregulatory system not operating efficiently, I can feel my shoulder blades rubbing on the back of my shirt. This may sound bad but then again it may not sound bad at all.
I was recently interviewed on the radio and I used a big cliché “If life deals you lemons, you make lemonade” and as awful as that sounded at the time it is very true. A positive mental attitude is something I’ve been gifted with for years and I’m very grateful for it.
So what do we do in times when social media is both debauched in movement and becoming diluted because it’s being flooded with everyone having narcissistic tendencies? Everyone is labelled, has issues and wants to float to the top and all I want to do is tell people how they can help others. We now live in a culture that has a lust for likes, favourites, comments and retweets and indeed most things are relative to the messenger if you’re in the world of blogging, Facebook, Twitter, Pinterest or any other form of ‘sharing’ to make a point and spread a message.
Without sounding too Einstein or Newton, by relativity, I mean someone who blogs about the difficulty of recapturing the natural movement of what the body was built to do (me!) compared to say someone who writes about the logistics of the London Tube but wants everyone to see their work, spread this and talk about it too. That is how it’s relative and relevant, trying to grab that five minutes of social media air time before it becomes tomorrows metaphorical chip paper.
As you can see it’s competitive beyond recognition now, some things that create waves are born out of something quite flippant, sometimes ignorance or by complete accident. Everyone’s timeline is riddled with embedded videos now as many individual, original and organic ideas are gone. It’s easier to hit share and take the kudos for somebody else’s misfortunes or something amazing that the original poster created.
This then leads me onto a case in point, this week a petition to reinstate a TV presenter outweighed that of one to end Female Genital Mutilation or indeed help save the NHS by a big margin, which actually made me feel a little lost. A hole had formed because of what others thought was imperative compared to what I thought should take precedence and be sat on a pedestal of importance.
Everyone wants to be heard, please don’t get me wrong, I am a fan of social media, I’m just not a fan of the way that it’s going and I am more than guilty myself of posting pictures wondering what peoples perception and reaction may be… “Roll up, roll up… here’s a picture of me looking daft with a baby kangaroo in a zoo! How many likes for this?” with every effect that Instagram has to offer, a sure shot for 20 Likes instead of using it effectively to share pictures and moments with family in far away countries or vice versa.
So to carry on from the first two paragraphs, as I fade and get worse I’ll be relying on walking apparatus, power chairs and eventually dealing with major paralysis. Some might say this whole blog is in fact an oxymoron in itself because I want others to know about my condition and I want people to talk about it a lot and therefore raise much needed awareness about Muscular Dystrophy.
I’m not sure that will happen, we do live in a time of fast progression of many things including the rapid evolution of social media which seems to be, for some, a journey of narcissistic voyeurism rather than a contribution to many much needed solutions.
You can follow me on twitter @HywoodMartin