MISSED EVEN WRITING A BASIC POST:
MAY 12th WAS INTERNATIONAL
ME/CFS AWARENESS DAY
So today, a day late and many dollars short, I’m boosting a post from @ChronicallyRising on Facebook, which will give you an idea of what I live with.
For over THIRTY YEARS now, I have been in the very badly mislabeled ‘moderate’ category – with occasional good days where I’m lucky if I have lost ONLY 50% of my functionality.
Because this is my daily reality, I don’t make a big deal about it.
I have used my experience with the disease
to write the on-going Pride’s Children trilogy, where I have gifted one of the main characters, Dr. Karenna (Kary) Elizabeth Ashe, with the ‘mild’ form – and explore how being chronically ill affects your whole life and all your choices.
When you lose your entire medical career, ‘mild’ is a misnomer.
Society writes you off; it did her.
She learned to write – something I’ve done. But I’ve given her a better experience and a traditional publisher in 2005. She’s turned into a reclusive but well-loved author of several historical novels, by spending ALL her energy on her work (since there is no way she can be a physician any more).
And living alone.
She is much younger than I am – in the ‘adult woman’ vague category.
And there’s nothing wrong with her – except disease and society’s expectations. And how much she gives in to them.
The world may find out
after covid-19 slams through its entire population, that the incidence of this kind of a post-viral, post-survival of the acute phase, syndrome, is far more common in the pandemic’s aftermath.
It is speculated that a large proportion of the survivors will have life-long problems. Numbers are not available this close to the outbreak.
Maybe my stories will help those who are ignored by the healthy, the researchers, and those who fund public health initiatives – until it happens to them.
We are all still people, still worthy, still capable of pain and loyalty and love.