As a spoonie & collector of quotations, I’ve found so many that inspire me; from the directly health-related like Buddha’s “The secret of health for both mind and body is not to mourn for the past, worry about the future, or anticipate troubles, but to live in the present moment wisely and earnestly,” to my oft-quoted “If you’re going through hell, keep going,” from Winston Churchill. We spoonies often deal with some pretty Hellish circumstances so we’ve learned (or are still learning ) that, for us, fighting back tends to make things worse. Anyone in their own Hell must make a choice; run away or stay, push forward or go backward, change latitude or attitude, continue alone or return home, change direction or avoid detection, whatever it takes just to get out or doesn’t take to give in. When your options are further limited by health, the way out — the only way to go for me — is through; “keep going.”

WEGO Health prompted my consideration of the quotational that’s inspirational as part of their Health Activist Writer’s Month Challenge (#HAWMC). With a writing prompt for each day of April, WEGO’s first challenge was imagining a Health Time Capsule & this next one suggests sharing a quote that inspires me (either positively or negatively) by free-writing about it. I hadn’t really used this writing exercise since being online, despite encouraging other writers in my life to free write, so was pleasantly surprised to end up with over 400 words in just 15 minutes. Here they are — with typos corrected, punctuation & links added along with some words that seemed needed for clarity [which are in square brackets like these |_|)]:

How can one be inspired negatively? It’s obviously being pushed in the other direction [a negative one, since inspiration is typically considered positive |_|)] but isn’t that “discouraged?” When a phrase is discouraging, the only real inspiration happening [personally |_|)] is that I’m inspired to call a quotation’s bluff. How can an inanimate piece of info be bluffing? It’s about the intent & — just like swearing — it’s how something’s said, why & when it’s said as well as how the person quoting (or misquoting ) means it. Since there are so many factors, it’s surprising that so many words thus phrases & eventually oft-cited quotations (as they become more & more common) end up having a crowd-sourced meaning, & said meaning depends on the crowd one spends time with. Many religious people [for example |_|)] see individual swear words as negative while the generation [usually considered ‘Generation Y’ |_|)] just now getting out into the world & standing on their own with all that entails, including far fewer restrictions, use swear words as adjectives. Since a word that evokes a reaction simply by being said immediately adds meaning to any discourse, how can those of us willing to cuss not use them? Here we are, back at meaning again tho’; for example, saying “fuck” vs “fuck off” [with only the latter having a negative connotation regardless of one's take on swearing |_|)] then there’s “no pain, no gain” for a spoonie [as living with chronic pain changes an otherwise encouraging concept |_|)] which leads to well-known favorites like “c’est la vie.” One such phrase I’ve taken to quoting, expressing that something’s already done or can’t be changed, maybe even referencing a difference of opinion — What is this versatile quotation? — It is what it is. Now, before this turns into a “Who’s on first” routine, it really “is what it is.” No, wait, it’s actually “it is what it is” & I came across an article sometime ago that listed [it as one of |_|)] “7 Popular Negative Phrases.” First of all, context people, context. That’s as important to words as ‘location, location, location’ is to real estate. However, parsing the phrase’s most basic meaning shows that it’s saying exactly what anyone should take from it: that something exists & therefore is; or that the state of something has changed (or been made clear) so is now known, thus acknowledged as being. There are also the times when an opinion is expressed &, whatever the reaction or sentiment aside from that opinion, it too “is what it is” & may or may not change but, regardless of the future direction or hope for change, it just is what it currently is — [at least |_|)] for the time-being.

When I read the article declaring those seven popular phrases negative, this was my reaction:

As valid as most of this list is, it not only criticizes “Que Sera, Sera” which always cheers me up but the put-down of the 1st phrase was clearly written by someone without any experience with chronic illness or other disability (I hope they appreciate their luck. ~_^). “It is what it is” is not a reaction but an acceptance &, when you live with issues that cannot be readily changed, acceptance is actually the key to staying positive!

/rant from one #spoonie who admittedly says both a lot ~_~

A fellow spoonie added, “i pretty much agree with the list except for ‘I can’t.’ if ur BODY can’t, then U can’t. #spoonies know this.”

I’ve been blogging off & on for years, have more recently opened up about my health (or lack thereof ~_^) & feel incomplete when my world isn’t as digital as it is physical yet I stopped updating this blog nearly three years ago. There were a number of practical reasons from repeated moving thus intermittent internet to a steady decrease in that so-called health of mine, yet losing my Grandma three years ago seems to be the real culprit. She taught me, amidst many other marvelous wonders & wisdom like “the dread is worse than the doing,” that people have more than one soulmate; we were each lucky enough to have married ours while also having another in each other — our husbands’ souls being complementary whereas our own mirrored the other’s. I’ll always miss her but, as Dan Fogelberg might say, “I am her living legacy.”

Speaking of legacies, I’ve been challenged by WEGO Health to consider what my own might be. April is Health Activist Writer’s Month at WEGO — a month dedicated to the art of writing… about health — & they’re hosting a Health Activist Writer’s Month Challenge (#HAWMC) with a writing prompt for each day of the month. If not only I but my health were memorialized, there would be purple & prose & poetry & perspectives that would seem more than just passe but downright preposterous. “What wit,” they would say, “what wisdom — no doubt thanx to these loved ones she’s commemorated — but wait; what’s this? Why would anyone have to go without healthcare?! How did she stay so positive despite so very much pain??”

As those who open my Health Time Capsule in 100 years get caught up in a collection of my favorite things, from a coffee press to the moonstones from my favorite beach, they find themselves longing for such simple pleasures as a picture forms of someone who makes the most of each moment. Then, reading thru my blogs & books, they discover that the simplicity of my life was a joy but not a choice. The more keepsakes, writings & pictures those future kindred spirits peruse; the more they understand the choice I did make, to enjoy. Each new item expressing my limitations either includes or is closely followed by an expression of appreciation for what couldn’t be limited. In the end, it will be my trusty sidekick, Chester C. Cane, that exemplifies my seemingly contradictory existence for the very need of a cane not only pronounces me disabled but announces my disability for all to see — making my illness less invisible. There again, a potential negative proves to be positive. Just as a cane has its own limitations but helps me better cope with mine, my legacy may be shaped by all I can’t do but will be filled with all the more appreciation for what I can.

Although not a subject I talk about as much as I could or perhaps even should, my health informs everything I do — or don’t — & all that I am. Of course, everyone’s health impacts them. An extreme physical malady has its obvious effects but is part of a spectrum that encompasses far more than can actually be seen. Good health, in turn, affects its lucky recipients for they have energies & abilities they can’t help but utilize. There are those who don’t take advantage of their potential healthfulness which is admittedly hard to see but even more common is the utter lack of recognition. When one’s health is good, it’s far too easy to take for granted. No-one’s to blame though for there’s little reason to ponder something that’s working properly.

The reason I’m so philosophical about mine is that it’s neither very visible or well-defined. While I readily own the struggles with my health, the real struggle is not being owned by it. “By what exactly?” you may fairly ask. Ahh, but that would be too easy. A name would require a diagnosis process which would require medical care which would require insurance which would ultimately require a far different life than we’ve chosen. My refusal to be defined has proven as far-reaching as most decisions are. The resulting poverty wasn’t by choice, as we’re repeatedly accused, but the choices that might’ve kept us from it didn’t lead to lives we were willing to live. An awareness of the risk accompanied every decision but you’re never knowingly opting to struggle yet more.

My life is a study in which came first; the chicken or the egg &, the thing is, the egg IS the chicken. Does that create a vicious cycle? Hell yes! My health, or lack thereof, limits my options & my remaining options limit my health. It’s at this impasse in such discourse that many a well-intentioned ‘friend’ has pointed out RhodesTer should have picked up the slack. If only I were as self-sufficient as I oft try to be & didn’t need a care-giver; I could also more easily work. Whatever anyone else’s take is & despite my own reticence, I’m a full-time job. Far harder than dealing with my own limitations has been enduring the slings & arrows directed at my care-giving hunny from previously trusted sources. Ever practitioners of considering the source, we’re running out of people to trust.

As living proof that there’s more to every story than meets the eye, I’ve always known there’s more going on than ever immediately evident. I did not always realize what an extension of that reality I personally was. Only now, four decades in, am I beginning to recognize the extent to which we carry in us an imprint of all we may yet become. Just as any scientific theory is questioned because of what has yet to be discovered, even Asthma — much less autoimmune — wasn’t yet understood when I was growing up. What was then ascribed to “growing pains” & stress has proven to be, in my case anyway, chronic pain & migraines. Possibly the Roseola as a child & particularly what was presumed to be Mono during my attempt at college are part of a greater, ongoing issue.

Mubyou-Sokusai

“mu”=none “byou”=illness, disease
“soku”=breath, health “sai”=disaster, bad luck

“Mubyou” means what the kanji mean, to have no illness, & “Sokusai” means to be in exceptionally good health. Bringing these two words together, the idiom means not only to have no illness but to be in a healthy condition.

I’m not claiming to be blameless in the degeneration of my health. Opting to self-medicate throughout junior high & high school rather than consider that the pain prompting it might be indicative of an underlying problem most certainly didn’t help. That independent streak of mine precluded me from being willing to worry anyone even as I slowly but surely concluded such discomfort was not normal. I sobered up, rediscovering all my ills & aches, just in time to lose medical insurance upon turning 18. From the three jobs simultaneously held shortly thereafter to the three years spent at my last job, insurance has been either elusive or impractical. Those of you who can afford neither premiums nor deductibles also know spousal coverage, if offered, is prohibitively costly.

Life is a series of measured risks & we ideally risk only that which we’re willing to lose. The question of what’s being risked at each turn is precisely why so many follow expected paths & seldom seek change. On the one hand, my hunny & I are prime examples of how much can too easily be lost. Yet, we live without regret & have never lost ourselves. Truthfully, every day is a struggle to survive, on all fronts, but hope for a better future renews each time we do. Starting over as many times as we have, we’re seeking sustainable choices this time. Past paths may have provided for immediate needs but what we truly need is a slow, steady build toward real change. We can’t be discouraged by setbacks & must be careful not to compromise what we’ve already accomplished.

My health is a continual journey with small victories along the way & stepping stones made of every discovery. Amidst its ebb & flow, our lives have had to be sorted, for better or worse. Even now, as my body produces ever diminishing returns after so many years, those who’ve followed the fight remain surprised somehow. “Wasn’t the desert supposed to help!?” The reality check is how much worse I’d be if not here. All the assumptions are of being either well or simply not. No different than everything else in life, the shades of gray in between are innumerable. Strides that had finally been made toward the well side have unfortunately been undone but knowing there are some effective weapons is more than half the battle. Once I can use them in combination, I’ll really be fighting!

(|_|*cheers*|_|)
“The power of love to change bodies is legendary, built into folklore, common sense, and everyday experience. Love moves the flesh, it pushes matter around…. Throughout history, “tender loving care” has uniformly been recognized as a valuable element in healing.”
~ Larry Dossey ~