Here are 2 calls I made to the Health Minister’s and Premier’s offices this week which unfortunately demonstrate that my life and my health have thus far not been valued by our current government, here in Manitoba. But it does seem like the Premier’s office is obligated to at least attempt to hold the office of the Minister of Health accountable… time will tell what that amounts to, I suppose.
Something I’ve communicated throughout my history of artistic coaching is the idea that Creativity is another word for improvement. And in order to improve, first we must listen to where things are truly at–pay attention to what a project genuinely sounds like in it’s current state. And the current state of healthcare for patients with EDS is abysmal.
I recently communicated with another Manitoban in need of spinal surgery who, like me, felt tortured. And no human deserves to experience the suffering known by an entire community of patients with complex conditions who lack access to the safe, specialized care that is necessary for their health and well-being.
My fingers remain crossed for the safe, specialized healthcare that I require to get my own life back; which is also essential for thousands of other deserving Manitobans but is currently unavailable in this Province(and Manitoba Health absolutely knows this to be true). Please hope with me for improvement and for tangible positive change, as soon as possible. I also hope that my first year and a half postop are only the beginning of my healing progression. After all, it took a decade of symptom escalation before I was at my worst so it must take some significant time before I can find out what my best might even look like in the future.
In the meantime, it would be nice to have some acknowledgement of my humanity.
“… and the government isn’t trying to kill you, they just don’t care if they kill you.” – Phoebe Bridgers
(There is so much room for improvement.)
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#ehlersdanlossyndrome #TetheredCordsyndrome #Manitoba #hypermobility #HEDS
