Change is one of those ambivalent features of human life: like it or not, we will all encounter it. As an embodied creature living on a linear timeline, with significant cyclical ‘repeats’, some change seems lovely—another spring! Another holiday! Another phase of the moon! But other changes are less welcome: another depressing winter that seems to go on and on, another election cycle, another blast of final exams and papers, another performance review. Change is like some two-headed Roman god: it looks back and forth, and where we are standing at the moment in our journey from childhood to old age has a lot to do with whether we find change hopeful or dreadful.
Our language about change reflects our ambivalence and the embedded nature of its impact on us: where we are sets the agenda for how change appears to us. We are all on a linear journey, from one state to another. Stability (and the so-called ‘purity’ anyone may hope to achieve) is a fugue state: we are always moving through time. We say, ‘Change or die!’ but ‘This, too, shall pass.” No female wants to be called ‘changeable’, but then again, nobody wants to be ‘stuck’. Few want to be shoved along a path without consent, because the unknown can be wicked scary.
Females are especially keyed into change of cycles: our bodies enforce it, will us or nil us. Men claim stability for themselves as rational beings; women, on the other hand, are parsed as ‘emotional’ creatures whose nature is to “change our minds’, usually on a moment’s notice, and always with a nod to our shifting female biology. We get it: we are often waiting to ‘blossom’ or ‘develop’ (depending on one’s regional euphemisms), to mate, to nest, to reproduce, to give birth, to raise a child to independence. If we walk a “non-traditional” path, we go from education to job to dream job to recognition to achievement to obsolescence to who knows what, hopefully partnered along the way. At a certain point, the ‘CHANGE’ makes itself felt and society suspects it is some kind of death knell to all that we learned to think of as female, fertile, worthy of continuance. Now we do not find the changes in our skin, our shape, our sense of self so very hopeful. Maybe there is a reason we haven’t met very many old female Jedi…the stereotype has us all turning to the Dark Side with hair dye and wrinkle creams, hoping to maintain ourselves forever unchanged and puissant, fertile and fem. If we had scant worth to male society before, the changes of age diminish even that. We ourselves become the change we never wanted to see!
Well, Crone Up, Ladies! There’s no going back on this hopey-changey thing—but there ARE things to be learned from those who have coped with malign change from early on. I refer here to the women of the sub-community who have named themselves ‘Spoonies’. Spoonies are people with invisible illnesses, often chronic, usually painful, whose daily lives mimic those of ‘Normies’, the normal people we resemble. ‘Everybody starts out with so many “spoons” full of energy a day, to use as they see fit. A Normie can expect that those spoons are refreshed with energy and ready to go the next day; not so for the Spoonie. It takes extra spoons every day to accomplish normal tasks, and that energy is not replenished due to the various disabilities or disease processes at work for each spoonie.
Normies never have to think twice about what will happen if they use up their precious daily energy on unexpected tasks—but for a spoonie, an extra phone call when trying to get dressed can change a whole day! A broken bag of groceries on the stairs can lead to an emergency room visit if things go terribly wrong, and all the while, friends, loved ones, bosses and caregivers all remark, ‘Gosh, you don’t look that bad! Really?’
Change is our enemy; planning is nigh impossible and deadlines are deadly. Seeing a friend, celebrating an anniversary, taking a trip? Heavenly to think of, impossible to achieve without angst and understanding by those with whom we try to interact. Sometimes, all we can do is laugh, because it is less stressful on the body than sobbing. Cartoons are born, and we try to be jolly survivors, even though we may look (at great price) like perfectly normal humans. Whole online support groups are devoted to female spoonies bitching and groaning about the awful price we pay to adhere to standards of female grooming and self-presentation, which are time-consuming, expensive, and difficult. In that respect, male spoonies have it easier fitting in. Donning pantyhose for a trip to doctors (who are trained to consider poor grooming a sign of depression and a trigger for more pointless medication with deleterious side effects) can result in lying in a heap on the floor and missing the cab when it comes. Argh!!
Our society prides itself on control, and a hallmark of adulthood is control over bodily processes. The anonymous world of work and social interactions can really only succeed if everyone obeys certain well-rehearsed rules. We do not pee in the street unless we are infants or toddlers; we do not scream with pain in public; we do not fall over and block pedestrian traffic. We all stay in our lanes and operate as though our body-minds are smoothly operating machines we all maneuver with strict and unfailing accuracy. If we do not, people move away from us uncomfortably, or ultimately warehouse us where we can find proper ‘care’. But the ‘care’ is as much for those who cannot spare the time to be inconvenienced by the Spoonies among them as it is about giving the Spoonie a sense of a full and rewarding experience of life in whatever measure of fullness may be possible.
But, as alienating as the Spoonie’s lot may be, it has a variety of insights to teach about the self, the body, and change. Change is not a spoonie’s friend: rarely does the body with a chronic illness change for the better, our anecdotal observations tell us. (It MAY be that some are rising up singing, but we don’t seem to encounter them all that often. But we hold out hope! It could change.) One of the hardest parts of dealing with an ever-changing body is the inability to make firm plans: I tell those I deal with that ‘Body is Subject to Change Without Notice’, and that’s about the most I can promise. Too many times, we must break plans for things we have looked forward to, strategized about how to manage, hoped for, worked for, and then, regretfully, discover that once again, our bodies have changed the rules on us. Everything often seems impossible, and continuing to try begins to appear like a neurotic fixation on past manifestations of lost selves. All around, it sucks.
So, what is a poor Spoonie to do, with all this damn change? We do want to tell our young friends suffering life’s indignities that ‘It gets better!’ because, damn! Sometimes, it actually does get better! And an older Spoonie (such as the present writer) can even tell young ones in the Waiting Room tales of how medical care has so improved that things that used to be impossible are now quite manageable. Things do and can improve, so we take to reminding ourselves and others that Change is not quite the enemy we tend to think it.
But ‘reframing’, the task of mentally reappraising and reassessing a given set of circumstances, is one of the Spoonie’s—and hence, the Normie’s—greatest tools for weathering the rigors and terrors of feared negative change. If you cannot count on tomorrow, Today takes on an ultimacy of authenticity that is drenched in color, texture and even joy. A friend you finally see is like a loved one come back from the dead; a cat in your lap is world of warmth, and comfort and contentment. Laughing at tomorrow is the only option, even as we obsessively follow our routines so we are not caught unaware by pain or change we have known before. What cannot be known—well, no one else knows that either, so we are in no worse case—at least, not this instant. Change your mind, and you change your world.
Change? Sure, why not? We learn to carry the good and the bad of Change around with us, and reassess it whenever we can. Spoonies need to laugh at change, as old Crones do. There is no point in fearing what is inevitable: better to spit in its eye, pack up, move on, and embrace the dark night of the Solstice. Spring will be around again, and hopefully…we will be here to witness the change when it comes.