Once upon a time my former therapist told me that if I started to talk about living with a mental illness on my blog (or publicly), I could never go back. She is also an activist of sorts and married to a politician so I knew she was speaking to me on several levels.
She knew that once the label of “‘crazy bitch” is assigned to your reputation, especially in politics, you are done. It doesn’t matter if you are a former crazy bitch or currently engaged in shenanigans and disruptive behavior. Crazy is not like cancer. People who survive cancer are heroes. People who survive with crazy are a permanent source of unpredictable discomfort and internalize phobias.
It just sort of slipped out for me and once I opened Pandora’s box – out it flew. And I felt better. Admittedly, I’ve paid a price. I had to put up all sorts of boundaries around people I once thought I could trust with my welfare. It turns out I can trust them with my welfare in a macro sense, but not in a micro sense. Even my therapist’s husband turned his back on me because I was trying to force his hand on an ethical issue. So I had to find a new therapist – awkward.
Yesterday, I encountered a situation where all of my careful planning – days of planning – to participate in a public event were destroyed when it turned out the planning was based on bad information. It was somewhat devastating to me in a way that is hard for someone who doesn’t have to invest days of planning probably can’t quite get. And I regret that I didn’t push back harder, for myself and for other disabled people who were getting screwed. But I didn’t.
(icim, days of planning takes some stamina and reserves. it doesn’t really weaken you so much as wear you out a bit so when a blow comes to your planning, it isn’t as easy to roll with the punches as one might think – especially when pretty much every day, there’s a barrier to access. every. single. day. noble courage is for fairy tales. this crap sucks.)
Still, having already disclosed my status – I could be more open in processing my feelings and asking for support and figuring out what to do next. I could be more genuine in saying why I felt so cruddy and trying to explain – again – how failing to prioritize accessibility to events is a huge slap to people with disabilities. It feels like a physical blow when someone tells you ” just use the back door” whether that is literal or figurative speech.
To some extent, disclosing a “hidden” disability is akin to opening Pandora’s Box.
Aside – there is some dispute in common folks as to whether Pandora trapped “hope” in the box by slamming the lid shut or if she set it free after unleashing all the evils. In Christianized versions, hope remained in the box until Jesus came (hope = Jesus.) In other versions, she set hope free, too without explanation as to why hope was in with the evils in the first place. Is hope an evil? Does hope for the next life preclude taking action in this life to challenge evil? Does hope make us morally lazy?
Getting back to me. Opening my own Pandora’s Box has sent hope out with the bad stuff – hope that maybe one more person sharing their story can have ramifications for my own life and for the world in general. I know how trite that sounds because, really, it doesn’t work that way. Hope isn’t intended to help me survive – it is intended to spur you to do the right thing. By me. And by others who need you. Who need the right thing. Not just the survivors, but the downtrodden and the weak and the annoying and the frustrating and the people with tinfoiled lines hats and the people who are unclean, unlearned, ill-mannered and unkempt. Even those who are paranoid and tactless deserve you to do right by them. Ahem.
I feel hope when people *get* this. I can’t rescue myself, folks. I can take care of myself and do my work and all that, but if you aren’t in solidarity with people who need to walk through the front door to access life – we are screwed. Living your life on a fixed income with limited affordable housing, few employment options, cuts to programs you rely on for food and heating assistance and a winter coat – these hurt.
So perhaps it was a mistake to confirm my crazy. Or perhaps that’s how I actually did set hope loose.