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representation shows us what else there is to what we think we know

when explaining what seems would be obvious sounds like gibberish, it’s usually a strong sign that what we think is transparent, painfully clear, isn’t so. entertainment fare is no different than human nature in that regard, despite the various efforts made in both to homogenize what are perceived to be variances. pointless attempts to equalize us somehow. far too late, the downfalls of that effort are realized. and we start over. usually, sadly, from scratch. as if the quandary is new. and such is the merry-go-round of this life.

as corrections and over-corrections are pursued, the perils of the disastrous prior actions are seen. felt. hopefully the next try is farther reaching. perhaps more inclusive in its designation. it usually is, even if by default. but, the damage once caused is still left for us to rectify. simply hoping that someone else will is usually no longer enough.

smaller movies, and the cookie-cutter films shown mostly on television around the holidays, exhibit many of the human nuances that define individuals. in writing, laying out and defining those traits is what is painstakingly practiced with the exercise of defining characters. in psychology, those same distinctions can move subjects quickly between mental diagnoses in textbooks.

relying on cliff’s notes and the top layer that is
pop culture doesn’t always provide a full picture. and ceasing to look for what’s beyond what is shown to us keeps the created examples with missing fragments alive and well. small-mindedness keeps us believing that that’s all there is to most things. and we continue in that unhelpful, circular, repetition until someone in our immediate foreground is stricken with whatever ailment got glossed over in that sanguine superficiality. we are all slow on the uptake on this one, apparently.

engaging willingly with and growing that glaring blindspot hinders any progress we could hope to make. and as we get out of our own way, what we tried to hide becomes what we need to address before we can go any further. or, like in the game of monopoly, pass go.

in my brashest early days, before acerbic wit was deemed problematic, what made charges scarily unique was often their biggest asset. when people were expected to also come with foibles to meet and overcome, resonant presentations of figures and their uncommon personalities are what got them jobs. but as semantics became watered down and discussions became akin to reading off an ever-changing shared work document, what deemed individuals as worthy also became fluid. and often, vanilla. some fit as they could into a subjective description made by whomever called the shots. and we soon saw that not all of us should.

an old adage states that like an unfortunate piece of our design, we all have opinions. but, as with that physical site, not all are as hygienic as is preferable. what lives behind the visible forefront often holds the keys to changing the status quo. growth passes us by and we miss out on that opportunity when we see everyone as needing to be the same. and that lesson is long overdue for an overhaul.

engaging with the medical community is oddly not as different from the former life i had in p.r. as i had once imagined it had to be. everyone still thinks they know everything. trends are followed without proper knowledge of what made them popular in the first place. what works for one still does not work for all. and we are sadly very slow on that uptake, too.

a comedian i worked with wanted to perform in europe. the pushback he received from his chosen team was aggressive, and no one offered much thought as to what he really wanted. why. what it could mean to him. the callousness of the discussions stymied me, and as he nonchalantly continued on the promotional tour for the film he was in, my ire with that situation grew.

his marketability had always been that he wasn’t the same as anyone. it served him well when that was understood. but when people who didn’t see the bigger picture were suddenly in charge, the scope of what could be possible was unceremoniously muted. but, older and wiser, he continued quietly on his path knowing that something would illuminate reality eventually.

his grace in the face of such road blocks was admirable. if hindering of his desire in the moment. but where detours were placed to follow, he carved his own way again instead. when we were together, we didn’t mention the colossal short-sightedness. didn’t discuss the obvious oversight. my frustrated exclamation to him that where he wanted to perform spoke the same language that he did was apparently all he needed to make sure someone arranged for him to play there. and he took me to london with him when he re-opened a renowned theatre there a few months later.

sorting out how to live with my m.s. has been a similar experience. everyone, from all walks of life, understanding of the landscape or not, has a viewpoint. a judgment. that they all feel the need to share it so mindlessly is off-putting. and it shows me just how unaware we all can be behind our positioned knowledge. but, this sticks with me as much as i tend to scoff at the simple sentiments of popularized memes. unless someone has this situation to deal with they really don’t get it.

not knowing how to do something is fine. expected. but presuming one can unknowingly dictate to others how things should be handled is ridiculous. it begins a macabre comedy of errors. speaking with the people who determine states of disability is baffling. discouraging. a glowering example of how much we really need to advocate for ourselves.

on my most positive days, when a simple call for help becomes awash with arbitrary and judgmental distinctions, my energy gets zapped almost immediately. conveying to others my reality when they have their own supposition of my situation is most often fruitless. which would be only a necessary evil if anything was eventually looked into. but it isn’t.

it is well accepted amongst people with chronic illnesses that there are generally needed to be multiple tries at getting disability before attention is granted. before we aren’t summarily denied. what isn’t taken into account is all the potential damages that can be brought on by the process. all the testings. which are judged only on objective parts of metrics. but the information gained is only truly as useful as the person administering them is subjectively knowledgeable. personal ability to sustain life through this is ignored. let alone whether or not one has the resources required to make it happen.

that we are more susceptible to other ailments because of our conditions is displaced along with the continuing state of our decline. as with most other elements to this, what we can actually do and what we can depend on others in our world to handle for us is confused all the time. the very definition of what this condition is has gotten erroneously maligned. and like with that comedian guy, it apparently doesn’t seem to matter on the surface whether or not someone speaks the shared language.

that someone thinks they know better is all most pay attention to. and the opportunity to create and share joy is one thing we all miss out on. my physical suffering is not the same as not hosting a comedy show abroad. but the biased reasoning for such blatant disregard isn’t all that different.

with any good karma i have stored somewhere, this will eventually work out. it has to. or what’s the point? keeping on keeping on through adversity is only one thing i will take from working with that guy. seeing past the the limitations of imposed poverty is another. and, while i can’t be as ferocious a watchdog anymore, if all i can do is exhibit my uninhibited thoughts, hopefully there is still something to that. it seemed to work pretty well before. i can only hope it’s worth a shot now.


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