Standing up, being seen

Throughout all of this pandemic thing, there has been a strong element of “same old” for me. When your life has been locked down by chronic health issues for 14 years, you realised you passed many of the markers of life-breakdown, or the kind of radical dissolution of all that was once familiar that precedes life rebuilding itself into something better but very different to how it used to look, many years ago now. Sitting here watching the crumble happen for so many other people, all at once, is a fascinating thing  yet you wonder “do I have tools to offer to those people?”, “can I be of help?” or are there really no short-cuts to be offered as almost everyone wakes up to the end of what they thought was so very safe and organised about their world, overnight.

Because, the thing is, when you get so very, bewildering ill almost overnight and no one can really help you but yourself, you have to learn from a running start that things are not what they seem and that the paradigm you once lived to was, largely, an illusion that wasn’t there to catch you when you fell. It is quite impossible to summarise what I have come to understand about the world since the day my own paradigm fell apart all those years ago.

Yet I tripped upon an article by Je Banach at the weekend that spoke to me powerfully on this topic; thank you so much Je.

It nailed the reason why I take lock-down and the likely-necessary caution of the months beyond it oh-so seriously, and yet why (in my way) I am coping with it just like any other day. This powerful personal account of a woman with “Fibromyalgia”and all the rest of the chronically bewildering mix of “diagnoses” that trail along with that (which I have condensed into the most resonant sections relative to my story, the bits that literally leap out at me, below – here’s the link to the highly recommended full article “I am high-risk covid-19, we need to talk”) could be, almost word-for-word mine, only my long story began in 2006:

“Though stories of chronic illness seldom have a clear beginning, I always start mine the same way: Somewhere around the year 2000, as the world was gliding into a shiny new millennium, I got sick and I never got better. There were no public health warnings like we are seeing with COVID-19, nothing to let me know what was coming. I simply became ill and never recovered. It has been interesting to witness people who seem sure that they can simply “get COVID-19 over with” and get on with things, since in fact, some doctors believe that incurable chronic illnesses like mine may have been set in motion (or at least exacerbated) by a lingering virus or damage to the body from a post-viral illness. While I started out with a smattering of manageable symptoms followed by a mysterious rheumatic-fever-like illness that I thought I would just “get over,” I ended up with a preliminary chronic-but-not-progressive diagnosis of fibromyalgia that, over the course of the next two decades, morphed into a cascade of symptoms affecting every system in my body: vertigo so severe I couldn’t walk without falling down, atypical migraines that left me bedbound, crushing fatigue, and unexplained face rashes. I amassed specialists in all areas and disappointedly collected a growing assortment of new and ever-evolving diagnoses…I am frequently grounded by my symptoms. Pre-COVID-19, I have been forced to curtail socializing in order to manage my illness…

While my own complex chronic illness might be considered mild (yes, mild) compared to those of others in the high-risk group, I share in their collective experience. The fact that my condition falls primarily within the category of “invisible illnesses”—meaning that, to many, I typically don’t “look sick” (though such a thing is no measure of illness)—has done nothing to insulate me from the very real feelings of fear and anxiety that are an inherent part of living as a high-risk person during the time of COVID-19…I have listened with curiosity as people have talked about “when things will go back to normal” and wondered whose normal we were talking about…As someone who lives with a chronic illness, I understand all too well the feelings that accompany the loss of what is normal to us, of what is familiar and comfortable in our lives. I also understand the allure of fantasizing about a return to things as they were”.

Symptoms such as mine take years to get into a relatively neat line to the point that they are bearable in the average day and even the common cold or a day of normalish-busy activity, by anyone else’s standards, can throw this off for painfully prolonged periods. If it takes a little extra quarantine and care to navigate these present circumstances then that’s what we with chronic health issues will have to do, because only we know just how long, how many setbacks and sacrifices, it took for us to gain back every hard-earned square inch of “normality” for the all the years leading up to this. By which, of course, I mean the kind of normality that enables us to function in a human body, not the normal of the cultural belief systems that form a bubble around most people’s view of the world, which we have necessarily shrugged off for ever. Chronic illnesses changes your entire paradigm; not because you are broken but because you start to see through so much of what is, likewise, broken all around you and there can be no going back…only forwards, towards a paradigm of betterment and total reinvention. Though our physical selves may still seem precarious, many of us make great strides in our consciousness expansion…and, meanwhile, we learn how to hold balance in our health, which is a lost art in the world at large.

So now in these circumstances, for those like me, all our focus has to be upon taking great care of holding that little piece of equilibrium we’ve made for ourselves, perhaps for a little bit longer, with a little bit more diligence, than some others, even if those people (whose understanding we long for, though we know its hard for them to imagine what our bodies feel like) think we are over-reacting or being timid. Ironic since, really, we are anything but timid since we have already faced this terribly alarming, bewildering health crisis, all on our own, for years and years, often in the face of uncountable numbers of naysayers…and, on the back of that character-building experience, the one thing we have gathered is the good instinct that tells us how to take good care of our unique selves for as long and as thoroughly as it takes.

Over that precarious time of familiarising with my health crisis, I learned so many valuable things that are turning into gold for me these days, in these precarious times…far too many to list or flounder around trying to find the words (though I alluded to it in another post Straw into Gold this morning). The easiest to mention, I learned how to turn towards, not away in disgust or denial from, those things about my experience that seemed so broken I could hardly understand where they came from…yes, though they scared me, I was still willing to get right down to their root…and I learned all about compassion and self-love.

Yet, still, I did all of this tremendous, life-altering, momentous stuff so quietly, so privately…so as not to upset the equilibrium of those around me who were still living largely untouched in the intact paradigm I recognised of old from my previous life; which I could still, to a point, play along with, for their comfort and mine (though it got harder to be around all but select other people or keep the conversations going). They would inevitably ask how I had been, what I had been doing lately…and how could I even begin to explain and so I stuck to the expected script. It’s only now that I am finally coming to terms with having to vocalise more of that which I have tried to keep off the conversation agenda, because these times force my hand…so, with mouths dropped open, they look at me anew and its as though all their so-called understanding of my health issues over the years (though they never really did grasp what it was like for me) turns suddenly to disbelief, as though I am exposed as a hypochondriac by my declaration of self-care  and not waiting for some outside authority to tell me when the all-clear has been sounded. No, I am not rushing like a bull at the gate of “a return to normality” since I have long-since unaquainted myself from such a thing.

So yes, I have also been cornered into something I tend to shirk; self-advocacy, because situations have “cropped up” in my life where I am finding even those I thought lovingly understood my health situation are passively criticising my choice to scrub my diary clean of family gatherings for the foreseeable future or prove difficult to pin down, rather than eagerly longing to resume as though “everything is back to normal” (whatever that is) when we are told. This is not me being the victim or the fear-maester (I work more diligently than most to lead a life that has nothing to do with victimhood or cultivating fear paradigms, since these mindsets only feed those who would run other agendas beneath the cover of “savings us from pandemic”, which is a whole other topic) but about me being discerning and taking self-care most seriously. In short, I take personal responsibility for my own welfare and have long done so, since no one else was prepared to take care of it for me (a lesson that ran very deep). I take good care of myself with my thoughts, my exposures, my choices and, when it comes to being asked to give consent to what feels wrong to me in my deepest instincts, with my ability to stand up and use my feet. (I have also realised that this doesn’t have to be literal; on the contrary, those of us who value what we sometimes lack in the physical sense learn to overcompensate with those skills we have in the other realms.)

One of the major pitfalls of the masses, one they will have to get over extraordinary quickly now or rue the consequences, is that most of those other people don’t!

Most leave it to others, to whom they hand-over all their trust like little children following a giant pseudo-parent in the form of much manipulated peer-group pressure and the powers that be. They follow like Mary’s little lamb. Years of chronic illness with symptoms doctors don’t believe knocks that one out of you pretty quickly.

One thing I dislike, strongly, about being forced into self-advocacy is that, by default you are forced to self declare, time and again, that you “have” this thing that is supposedly going wrong in your body; something that makes you different or “more vulnerable”. As someone who works with positive affirmations and energy healing, this self-declaration feels more wrong  than anything and yet…here I am, having to own-up to this truth about myself (that my body deserves great diligence and care); and so should we all self-declare…since this would give us all the massive burst of immunity we have long-since lacked out of an imposed sense of our so-called worthlessness and relative unimportance in the sausage machine of life. Nope, not so! YOU are worthy of all the love and care in the world!

The worm has to turn where it comes to this currently-dominant belief paradigm regarding lack of self-worthiness, and that turning process is an inside job. It begins with you believing in your self-worth and your deservedness of life, of care, of fairness, of opinion, of choice, of liberty, of LOVE…for yourself.  Believing in this and using it as a daily guide is a powerful form of self-advocacy.

In amidst all that too-ing and fro-ing about self-advocacy, what I am learning on all fronts is the need to face up to/acknowledge what is wrong in every situation; and to stand up in sovereignty to declare (literally, out loud here, and in my own private ways) that I do not consent to this thing (whatever it is) that might seek to tamper with me, and then….only then…do I get to integrate, as in heal, the problem. This is the time for all of us to do this sovereign work, drawing our boundaries, withdrawing our consent from situations that feel sickly and wrong to us in our heart of hearts. As ever, our feelings are the guide and our belief in ourselves is the power to shift realities.

Whether that problem is an illness or an entire culture that is disrespecting of our humanity is neither here nor there since, I suspect, the healing (as in facing, standing up to and then integrating with higher love) of the one will turn out to be profoundly connected to the healing of the other, in all our cases. At all our different levels, we are all working together on this massive re-boot situation.

Meanwhile, as we do this, the structures of wrongness starts to quantumly shift, the distortions to dissolve and reabsorb into the whole, and a new level of coherency, one that  looks and feel so much better, starts to emerge. I have experienced this profound shift, many times over, on my healing journey….and, once experienced, never forgotten!

When things are distorted, in whatever way that they are, our standing up for ourselves is what becomes the support structure at the apex of a whole new version of reality that lives out its symmetry and balance as a far better experience for us from within that which we just co-created with our intentions. We live within its better paradigm and it lives within us; and so, with every cell starting to take its cue from this new model of reality, the body starts to heal itself into a new format compared to anything we knew before, since none of this is about “going back” to something as it was in the past; something I started to realise, oh, about a decade ago.

To an extent, those of us who have been on these long-lonely self-healing journeys are always destined to be misunderstood. Our very journey has awoken us to such a different paradigm of reality that we are hardly on the same book cover (probably not even in the same book shop…) as anyone else, let alone the same page. People who haven’t been through what we have are simply incapable of understanding the depth of the inner journey as we self-explored our own existential crisis, inch by inch, day by day, nor the altered trajectory of the journey since that all began for us…but many more people are starting out on those journeys now and we can be of assistance to those who start to seek us out because we shine a light on somewhere they have found themselves; yes, we can do that, if they meet us here. As for the rest, we cannot continue to weary ourselves trying to go back to where they are to help them understand (even if that means they no longer understand us, which can be painful in a family or friendship dynamic…) and may have to accept that they may never fully understand the way we look at things; but we are on our journey and they are on theirs, part of a world split that is only going to become more manifest in the coming months. No one can do our work or make our choices for us; but we can radiate the truth of who we are.

Also, in all probably, we who are like this were always “a bit different” to begin with, would you say? I know I was, in so many ways that have only become more obvious to me along the course of the deep journey of self-exploration that has been the last decade. I have long suspected a link between this “not fitting into the conventional mould” thing and chronic illness (because our sense of wrong planet so often manifests as, or makes us susceptible to, physical illness in the long run).  This “wrong planet” thing has ceased to bother me in proportion to how much I have felt like this isn’t a planet I am so very invested in, as it has been to date; but, perhaps, people like us are destined to be key-contributors to creating a new one once so many more people wake up to their version of the same realisation and start looking for clues how to navigate the territory of life starting-over.


Quoted article-  I am high risk covid-19, we need to talk

Related – How Do You Deal With Relatives Who Don’t Understand Your Chronic Illness?


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