m.s., p.r., they’re two kinds of lives that are a different every day

basic biology is perhaps more assuredly explanative than we give it credit for. like the law of gravity, there is a lot is to be understood from having just a simple awareness. a remedial understanding. nothing of the sort needs to be as complicated as we make it. that only serves to confuse what can be very obvious.

the ramifications of over-thinking simple things span far and wide. we see the effects everywhere. which, along with all the peril it also brings, makes it easier to ignore the incendiary pieces that are sparked closest to home. but, when we take the time to look, some of the least egregious acts begin with kindnesses not enough of us show to even ourselves.

for a substantial chunk of our lifetime here, those kinder moments weren’t always seen as newsworthy enough to get proper coverage. and we continually miss out on those teachable opportunities as many of us live lives that don’t bring us into contact with beings unlike ourselves. animals, aged folks. interactions that were at one time commonplace are now alien. and the accompanying wisdoms seem to have flown out the window with those changes in social structure.

casual calamities that once occurred nonchalantly within the existence of a growing human population are now unnecessarily made issue of. sometimes to the point of detriment, as elementary goals are thwarted to erase their existence instead. sounds. unsightly visuals. whatever we deem to be problematic in our quest for unattainable perfection.

at one point, when some of us were in high school, adrenal glands were an element of the human body known to be looked out for. becoming either overtired or over-caffeinated was unacceptable, and knowingly causing such physical distress was ardently looked down upon. until success was procured from extremely capitalistic work environments, genuine care was expressed to any who endeavored to participate in maintaining life. the general cost of doing business made more sense. the price of being here.

anxiety was to be avoided rather than simply treated and otherwise ignored. same with depression. getting older was celebrated in many circles. elders were respected. but as bodily downfalls got in the way of productivity, the more standard work-arounds became less humane. and we somehow at the same time became less vocal about our needs.

we shared less and less in common as we used varying methods to cope with life. and information was haphazardly doled out in a thoughtlessly quick effort to fix whatever issue plagued the moment. now it is truly everyone for themselves as our lives continue to outwardly veer off more sharply from the average.

domestically speaking, there is an overriding mindset of discrepancy as to what comes with having access to certain resources. admittedly part of the problem, this wasn’t anything i gave much thought to until it affected me personally. what a gross american stereotype to be. thankfully, on that front at least, there is nowhere to go but up.

but, looking for the upside that has to be here also, illumination of said realities is perhaps the most beneficial option we have for us all to see the glaring missteps we have taken. to figure out what else we could have done. what we can do to make advantageous changes.

the activity of my early days in p.r. were incredibly varied. and especially once i began traveling for business purposes, the only constant was my boss. a single day could be filled with split coverage duties of two-to-four photo shoots, a plane, nourishment available at hotels, hundreds of emails to forge potential forthcoming opportunities, and whatever else came up in the interim that day.

if someone was arrested, whatever existing itineraries being followed were usurped as the next steps were mapped out. being able to go with the flow was required, and the personalities to be dealt with, especially in such game-changing moments, changed with the wind. the absence of the needed flexibility was a fireable offense. if bosses had to pick up the slack, support staff was dismissed without question.

having as much of the correct information as possible was a life-saver. until we knew what to do with it, having it to accurately and succinctly convey to superiors who did put us at the top of our game. all offending famous types survived that chaos somehow. we made sure of it. but what all that stress did to us is still falling out to this moment.

the experience of a fast-paced p.r. life with the need for quick thinking is probably what has saved me in this dreary m.s. existence so far. the memory pieces are detached and nonsensical for the most part, and much of my person is depleted. days are spent mostly in solitude as i attempt to rewire my brain for the most basic functionality. much of what once
was has disappeared, but a few remnants of my mental fortitude thankfully still remain.

it is only now slowly growing back, but to my great chagrin, chunks of my personal intuition seem to have also burned off along the way. like a space shuttle upon re-entry. to my younger, success-driven self, i warn that subsisting on coffee and cigarettes leads us down a far bleaker path than we are led to believe to be the benefits.

back to high school biology, adrenal glands need proper upkeep to withstand all we throw at them. with our intuition getting direct messages from our senses, all of which are riding along on the flow of our adrenal system, those elements are easily overwhelmed as we rely on them more and more to cut through the dizzying array of stimulants vying for our attention.

a lot is being done prematurely. and without the requisite personal knowledge. that when new public cases are announced it changes the landscape of available medical research for a disorder that’s been around for decades is alarming. and it gives rise to even more significant concern that the disease’s discernable lineage, that could lead us to livable treatments, is repeatedly overlooked.

negative social responses to related autoimmune epidemics, due primarily to ignorant reactions in the 80s, are steering us down a path of highly unnecessary neurological bandaids. the imperative need to address our related mental and emotional plights are squarely neglected as it is iliogiclky assumed that people in our lives will pick up the pieces.

some of the worst things ever to be said to me have been spoken since my diagnosis. but if they weren’t at all truthful in nature, i would attempt to argue loudly like i used to. demyelination is wiley like that. by its destructive design, it makes obvious all we have striven to hide away. the mental health hacks we employed that weren’t actually helpful are found out for their futility. we are left to take responsibility for all our parts, known about or not.

the lack of support for those who don’t leave even when they probably want to most is astoundingly sad. those of us confronted with chronic conditions may not have chosen this element of our makeup, but if we want to survive, it is our job to accept it first. and we aren’t usually good at it. that anyone stays on this ride with us is to be revered. and we aren’t usually good at doing that, either.

like my former p.r. jobs, everyday is different when it’s a life with m.s. not knowing that your face is drooping when you think you’re smiling, or not feeling that you are clearly exhausted as you snap at people for no justifiable reason, are just the most visible parts of this chaos. we likely won’t remember the tumult, anyway. it’s like that p.r. life that way, though, and as i’ve gleaned from my parent-friends, like the parenting of an infant. but for yourself instead. there is no time off, no true vacation days. only moments of respite.

remaining vigilant in times that seem more copasetic is often the hardest, and most confounding, part of this mess. sorting through and preparing for fallout from the mismatched foibles is mentally consuming. and the exhaustion that comes in its wake stays around powerfully to contribute to the next wave. inwardly, it is disastrous.

but that we genuinely aren’t aware of the smoke signals our sensors are emitting is a monstrosity for any in our presence. what it does to our few people to remain has yet to be documented. analyzed. but from anecdotal observation, the mire that we create with our wonkily-pathed brains is problematic to them, too. and without the teams we relied on in that p.r. existence, how they manage to uphold us is remarkable.

as much as i wish for a few re-do moments from my past life, as of yet there are no awards given out to our companions. those whom we push out the door with our inept ability to handle our repeated, circular, consternation and outlandish fears when we (inaccurately) act from outdated muscle memory that tells us we can push through the situation.

we can only hope that there are fancy outfit occasions waiting for those who voluntarily share our stories. or that there is at least some semblance of humanity we can provide. the bar is low for us now. and hopefully that will lead us to accomplish something worthwhile.

One thought on “m.s., p.r., they’re two kinds of lives that are a different every day

  1. Nicole,

    It was so nice meeting you both this evening in your studio. I’m so glad Fireball invited me to attend and to be given the opportunity for us to meet. I regret that I didn’t give you my phone number as I would love to have the opportunity to share time with you again soon. You are only the second person since my diagnosis in 2012 that I’ve met that shares the same disease as me and I really love your spirit. I think this opportunity to connect tonight may be a gift for each of us.

    I look forward to following your blog and catching up with your past entries.

    Warm regards,

    Val

    Like

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