In honour of all who live with the most severe form of myalgic encephalomyelitis (ME), we are sharing a spoken word poem by a member of our British Columbia ME community, Jasmine Sanchez-Ziller, who lived housebound with ME for 9 years, bed bound for 4 of those years, and 3 of those in silence and solitude with severe ME.
As background to the poem, Jasmine writes:
I was barely able to speak, be spoken to, use a computer, look at a screen, use my phone.. the "could nots” are too long to list. I will say this though; when you are too ill to sit up in a wheelchair there is something very very wrong.
I spent my days confined to a bed with my brain as my only form of entertainment. I was not asleep.
My eyes may have been closed, my body lifeless, my brain foggy and impaired, but I was fully awake and fully conscious. Every hour like a day, and every week like a year. All the while not knowing why, what, or how long this would go on for, nor how the hell to make my way out.
There was no guidance. There were no answers.
Despite this, I am one of the lucky ones, and as bad as I had it, it could have been worse. I have friends in their twenties who have spent years on end wasting away in dark rooms, unable to speak or communicate with the world; missing in every sense of the word.
The inherent assertion that this illness is psychological and a choice is beyond unacceptable. The negligence of the illness by governments and medical professionals is outrageous. We need funding, we need research, we need treatments, but above all we need respect and to be taken seriously.
Thank you for reading. Please share to help raise awareness for Myalgic Encephalomyelitis.