Sunday, October 2, 2016

Solid reflections amid healing burnscars (from


Oct. 2. 2017

I'm just thinking .. I really don't know how these people managed to stick their heads up there butts so far as to deny my EDS like they did, and far enough that for awhile they succeeded in gaslighting me..and I was starting to feel like I must be crazy. I think my EDS is actually pretty obvious. I have the look of an EDSer and I always have to some extent, but especially in the last 7-8 yrs. My skin is clearly very soft like that, I have the deep set eyes and even though I'm very short (5"1") I look taller because I have long somewhat lanky limbs, my arms go down longer than average like a marfan. I have the microgathnic jaw and crowded teeth/high narrow palate, the elfin appearance.

Like holy smokes..I realize now that these people were choosing to deny me. I know why. EDS care is a worldwide crisis. I get that the notion of establishing best-practice EDS care, in a socialized healthcare system especially, could be really financially taxing. That's not to defend "them", just saying what is. 

They need to find solutions, regardless. But they're acting like "wasps in september", irate and defensive as their old ways are dying out and not working anymore, and new ways (and new budgets!) to solve these issues must be found. They're in a "No! We don't wanna!" thing here, and so they have been for awhile. The pressure is building though, and this stiff and creaky wheel will have to start turning a bit more fluidly soon. They cannot continue to do this to people. It only works for so long ...
With me, I think they knew all along, that I'm a zebra. They were just trying to keep it from me at all costs. That's why they inflicted that awful psychiatrist consult and horrific outcome onto me. I was tricked into that event, big time, and in that room, there was no normal discussion, only an interrogation that felt set up and preconceived in every way.

The first time at genetics they refused to do a blood test for Elliot and I, for the classical EDS gene. God forbid, it might be positive! I was actually called in to genetic counselling when pregs with Elliot because he had a thicker than average nuchal fold, which is a genetic marker of an anomaly, usually trisomy 21 (downs' syndrome) so we did an amnio and he was negative for Downs'..but I think that marker was to do with EDS.
Some of what they wrote in files alludes to that they always did know, like "do chest xray - in because suspected conn. tissue , but assure patient she's fine otherwise" Jerks eh? But seriously, in the long run, that game doesn't work with a genetic progressive illness. So silly...Silly lizard/toad brains ...they should not be allowed to get away with the kinds of systemic abuse that they inflict on zebras..but they do this to a lot of people, for varying reasons. Zebras and/or autistics do get the brunt for sure.

Being an autistic woman with EDS who tried to staunchly self-advocate, I got a mean double whammy of that! So funny that my head/neck are unstable.. are we sure there wasn't a Salem-esque rope put around it, lol? But I am healing now, and regaining my confidence back. 

After years of gaslighting, I'm finally truly healing inside, in spite of being kinda battered physically at this point and in the full throes of systemic EDS - some of which was inevitable, but some of which I don't think would have been as bad if stress had not been like fuel on a pre existing fire.

Anyways, I can't think about what could have been, I have to focus on the now. It's too bad I was so gaslit and beaten down that I couldn't get on with my music then, but I'm doing it now, and I believe that even if it seems unfavourable, things happen for a reason. My music is stronger and more lyrically poignant because of what I went through. Rise Above is about that; being bullied and gaslit, being broken, and coming back together to stand up to it and hold your own, be true to your true story.
It's bionic time for sure! Ie. Now that finally "believe myself" enough to realize that I do need all this bracing, especially along spinal column, I'm starting to see that it's very very clear I have EDS, and I'm able to take control of my symptoms a bit, know where their coming from, and "get out there" more.
Things will change eventually, and it's starting to, you know when push comes to shove. We just need to keep chipping away at it.

-Rosie G. (from Brazen Musings of a Rainbow Zebra) 

No comments:

Post a Comment