Social media often finds me catching my breath because of its reach, its intent and its questioning behaviour towards the mindset of the people they follow.
After tweeting about the content of my blog, I received a rather ignorant private message from someone asking how raw my content, or I, can get and if I wanted to elaborate.
On my blog, ‘raw’ is A Powerful Letter to My MS; Death, A Fearful Thing?; Waiting and My Brother. These were pivotal words that had to be written from an emotional perspective as learning to accept a chronic illness sometimes comes with letting go of life as you once knew it.
Others say that Let’s Be Frank; Ignorance; and Hope Cures Old Wounds are realistic enough to prove that life with a chronic illness is not just about being ill, but about society judging someone’s illness also. Getting a raw deal, in other words. When somebody receives a neurodegenerative diagnosis, the lives of those living with the person who was diagnosed will change to a certain degree. Not only that, each person affected will have a theory on what that illness should be like, and how they should handle it.
These days, everyone in society has an opinion on your life whether you agree with them or not. Social media can be as good or as bad as you want it to be, but I refuse to engage with anything that resembles infectious online insanity. At times it seems as if your online life is not yours to live anymore, but I believe that just because of social media, your life is even more yours, as you need to exert a lot more control over what you say or do. ‘Raw’ is also that need to control your life in a way we never had to.
It is not my aim to darken anyone’s mood or indeed mine, but quite often I shield myself and my blog from yet another cock-and-bull story that sounds like, “Scientists close to an MS cure!” or “This treatment will make you be your old self again!”
The media only cares about the next headline. They do not seem to grasp that headlines can be self-destructive to those in utter need of a cure. We only need to think about Paolo Zamboni’s CCSVI debacle and how many people got into debt because of a hardly researched ‘cure’ (at that time). Quite often scientists are a decade away from improved medicines as preliminary results are based on small research projects that still have to go through rigorous studies, trials and approvals.
If I don’t post faerie-winged blurbs that claim that by next week we will all be cured, I apologise but ‘raw‘ once again comes into play. After 5 years of advocating for people with MS and other disabilities, and after 11 years of living with MS, I know that nobody wants airy-fairy news bulletins that by Christmas will all be debunked.
So, in my little bubble, I am the chief of an honest, raw, realistic world view on my MS. Within that bubble, I have neither patience nor energy to spend time unwisely. After all, my little bubble keeps expanding outwards, rather like Stephen Hawking’s universe.
The question on how ‘raw‘ my content or I can get?
This blog is a tool that helps raise awareness about MS, it’s about advocacy, writing, the general public, my family, my friends… and they all contribute to one thing.
© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2016. Unauthorised use and/or duplication of this material without express and written permission from this blog’s author and/or owner are strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.