The Nothingness of Nowhere part 2

Yesterday I posted a quote from my book, Severe ME, featuring Justice for Karina Hansen, about the need, from a carer's perspective, to be brave, bold, open, true, strong, alive.

The words take on a whole new meaning when viewed from the person with Severe ME. 

BE BRAVE: you have to be brave every day just to survive the onslaught and agony of unrelenting and complex symptoms.  

BE BOLD: you keep having to stand up for yourself, speak up, boldly trying to get your needs understood and met, whether by yourself or even with an advocate, you still have to be bold enough to demand better. 

BE OPEN: you need to be open to the possibility of healing and hope, even despite the torment of unending illness that never leaves you and finds a hundred different ways to torment you daily and the sometimes seemingly hopeless situation you find yourself in.

BE TRUE: you have to be true to the truth of your very physical, overwhelming, unrelenting, all consuming illness, because you know how ill you are and no one can deny it, even though they might try, yet no one can cover it up forever if you speak the truth about it and never compromise it away. 

BE STRONG: absolutely you have to be strong to get through each moment of never- ending tormenting serious and severe symptoms, you have to be strong when people ignore you or let you down or negate you or dismiss your reality, when they let you down, misinterpret, misrepresent, mislabel your illness, you have to keep strong, to keep bearing it day in day out, year in, year out, decade in decade out. 

BE ALIVE: this is the most important of all because this is your life and you are precious and unique in the world and your presence matters, no matter how hidden away, desperately ill, severely disabled, isolated and alone you feel, your life is valuable, you are valuable.


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