Who or what are you holding yourself together for?

It’s an interesting question; one that has popped up for consideration several times over the past 16 years of my health adventure and perhaps even before that.

There was a time I felt like I held myself together for my daughter, my family. There have been times I’ve done it for a parent, to see them through cancer and beyond, no matter what my problems…just keep on trucking, being there, holding together. I’ve done it for friends, for a job I “have” to keep doing, come what may, to keep that wolf from the door. I did it, for a lot of years, to “seem like” I was coping and fitting in to an alien-seeming world, to not rock the boat and not disappoint other people.

Yet many times over the 16 years of chronic health conditions, I have had this question pop up quietly, unexpected, perhaps first thing in the morning, as happened today on my yoga mat.

I had a very deep sleep last night; a heavy one, the kind that seems to stop my EDS blood flow or, more accurately, pool it around my stomach and just under my heart so that, when I wake up, it feels as though a stone has landed in my guts or a weight landed on my torso, met by a hard contraction of muscles that feels like tight knots. And when I stood up, to scurry off (somewhat late) to my mat, that reservoir of fluids just seemed to drop, without ceremony, into my legs so that the first ten minutes of more felt like shingles in my pelvic floor, my feet and my thighs. I thanked the stretches I did over the bolster and face down on the mat for the reconstituted comfort of a stomach slowly remembering how to stretch out and go back to some sort of normal….and then the remembrance of the night’s dreams hits me.

Last night, I dreamt I was at an airport saying goodbye to my daughter, who was heading off on some sort of trip with people she hardly knew, to do something serious, some sort of laboratory experiment (it seemed like) because her suitcase, which refused to stay shut, seemed to contain test tubes and lab coats. There was a lot of waiting around for her flight to come up on the board and, of course, there were storms, the sky was dark, the wind was howling. I had that gut churn of a parent sending her child off into the unknown while the child herself was reassuring, eager and (my biggest concern, of course) naive…I felt like I wanted to stop her, to cradle her under my arm, in safety.

I knew where the dream came from, of course. It was the remnant of two summer’s ago, when my daughter actually did fly off on a jumbo jet, all alone, to Canada, to work with young people she had yet to meet on another continent, yes an experiment in experience. Only a few months earlier, she would routinely phone me for a lift back from the shops if the dark bus stop unnerved her; I was finding it hard to mentally encompass this massive leap in her confidence. If I’m honest, the tight cheesewire of anxiety in my stomach had started to crank tight from the moment she had first suggested the idea, months before. Of course, I supported her all the way and waved her off so proudly as she left but my innards were rigid with white fear; that day and all the other days of her three month sojourn, hidden in a place I wasn’t; even thinking about labeled “nothing I can do about it” but, in hindsight, it was there until she came home. Even when she phoned me up to tell me it was going well and especially when she didn’t, some part of me felt stretched over an ocean, energetically spaghettied day and night.

Looking back, I didn’t even admit to myself, at the time, how much I had to hold myself together (what felt like) for her at the time, but which was really for me too, but I couldn’t tell the difference, because we had been energetically and proximally enravelled for so long I didn’t know where she ended and I started (do all parents feel like this; do I simply have visceral, powerfully metaphorical, effects where all parents go?). She was absolutely fine, having the time of her life…and I was the one in pieces, like the carefully crafted safety shell I had created around us both for twenty years had shattered on the floor.

I hadn’t realised how much that shell also incorporated me, had held me together, until that point; how I also felt like it was this thing that held me together and defined me, gave me my purpose…my raison d’être, the state of parenthood that had become the point of my life. Just as other external states, even that disastrous first marriage and the heavy neediness in him that had filled some sort of absence in me, had been used to define me for so many years that I struggled to end it. Where was I in all this? Why did I always give myself over to other beyond the point of expectation, as though I was nothing without it?

She and I had had it extra intense, of course, with that first marriage the way I have already outlined it was in other posts; so we became a huddle, a joint buffer against the world from a very early start, even before she was born when things already felt harsh on the outside but, in making things safe for her, I somehow found myself a little more substance. Looking back, it was as though my purpose was to give to her what felt absent from my own childhood; the contact, the deep intimacy, the exceptional allyship. By the way, I have since discovered all those things sustain, even grow stronger, once you have found yourself a little more as the starting premise…but , for a lot of years, I didn’t seem to grasp that.

The degree to which I had focussed all on holding myself together for this, for her, for this idea I had of parenthood had escaped me until my spring clips seemed to fall off one day, which they didn’t do in an emotional way…oh no, I still felt pretty stoic, so very calm and cheerful the whole time she was away, in fact I could have sworn I was in a really great place….and perhaps I was, maybe I was just starting to realise I could let go and relax my white-knuckle grip on controlling outcomes. Whatever it was, one month after she left, I had my first episode of major EDS collapse, as though the hinges that joined my legs onto my torso came loose and almost fell off (as I’ve shared before) and I spent three months in extremely compromised mobility and a lot of pain.

It was the episode that showed me I had EDS and the beginning of accepting I am autistic at long last, so quite the monumental milestone actually, and one I am deeply grateful for…but how interesting that, until this point, I had held myself together through years of one health crisis after another, never allowing myself even so much as two days of bed rest on the trot…on what? Sheer determination to hold myself together because of a deeply inbuilt sense of “I must” and, I suspect, that sense of imperative was less to do with me than my sense of responsibility for others, combined with a primarily externalised benchmark of myself, as in, I couldn’t let myself seem to fall apart from the outside…I just couldn’t bear that idea, having worked so diligently at my outward projection of self for all of my autistic life!

This I realised this morning…without that outward projection, I felt like I would literally disappear into dust on the ground!!

Its a feeling that is still trying to be ingrained in me, or at least hovering, but I’m working on it…and, I suspect, is a very big key to my healing because, all the time, I was missing the point that my true identity, you could say my authentic self, and my strength come from the inside, and they have been living in the shadow of all these externalised imperatives for most of my life.

Also, in the light of my last post on the topic of interoception (or lack of it…an autistic thing) I suspect that my body couldn’t just show me that I was more emotionally vulnerable than I had admitted for years. Oh no no, it had to go all the way to force me to realise it by causing an actual physical collapse to coincide with this time of major re-jig regarding my very sense of who I am, so that I really paid attention for once. Perhaps it had learned I simply don’t pick up on the more subtle emotional clues or, even more readily, sweep them under the carpet or fail to stop and prioritise them, swallowing them back in case they might interfere with my ability to remain calm, stoic, capable and to keep my uber ritualised autistic life together, at least externally. This world of “seems like” that has bearly wobbled for all I have been so unwell for years, far more severely than even my siblings can comprehend, there being so little external evidence, hence the big drama whenever I seem to “let them down” in some way (but would anyone glancing at my Facebook feed ever know it?). I was faced with having to “let go” of my daughter so my body “let go” as some sort of metaphor to get me to process that emotionally…for once; and to accept that change was upon me, like it or not.

As I mentioned in that last post, I now realise that, due to my interoceptive shorfalls, strong sensations I have in the body are often to do with strong emotions that I am feeling that just don’t know how else to express: heat as anger or frustration, freezing cold as fear, or a sudden emotional impact can cause my already low blood pressure to tank out in a bout of dysautonomic dizziness with buckled knees, as though I am in toxic shock. Just yesterday, I read a comment in a forum that really triggered me and I was suddenly in such intense nerve pain I told my husband I would have to take a day of rest and not join him on the walk today; but then, a short while later, realising it was the emotions I felt to do with this objectionable comment, that felt personal even though it wasn’t directed at me as she was attacking something important to me and with a certain amount of aggression in her tone (she was insisting that autism “only affects the brain” and has “absolutely nothing to do” with the limbs of the body in a group discusion about the link with EDS) had hit me as intense electrical sensations and so I was able to recognise them as intense frustration in order to clear them away and go for that walk after all. So, yes, my body talks to me in physical symptoms…so how much better can it get if I learn to pay attention, to translate if necessary and respond much sooner?!

So when my body went through all those abrupt-seeming shifts in 2019, it was like a physical manifestation of an emotional awareness that had been trying to come to the surface, and to terms with itself, for months. Not caused by this, I hasten to add, but used by it to “speak”. As in, I may have underlying hypermobility but the way, and degree, to which it presents symptoms seems to have a definite rhythm to do with my emotions, so how much dare I suggest that it is a “means” by which autism speaks in some people’s cases? How much earlier would I have collapsed had it not been for holding it together as a parent for so long, I am left to wonder; so, in a way, this externalised sense of myself that had kept me busy and so-occupied for so long had indeed helped to keep me strong (and I know that my chornic health would have been a very different picture if I had, say, lived on my own). But also, this sheer determination to stay physically strong, for all I could sense the underlying, possibly genetic, weakness, has helped built a very high degree of rigidity into my body as overcompensation (= chornic pain) and this is no small part of what I am now working to soften using the Gupta Program (and, if so, I require other resources, an alternate source of strength, to be waiting on the inside to sustain me). The inability to process emotions in any other way becomes an epigentic factor that drives the EDS; so, I really need to work on this inner emotional resilience to step forwards.

The very fact that reconfiguration of “how needed I felt” was (and continues to be…) so very impactful on my physical strength makes me realise that I have been putting far too much weight on externals and not starting from the premise that, before all things, we each need to be intact, sturdy and self-defined ON THE INSIDE. When we have this as a baseline, everything else can be built upon its foundation…otherwise, remove the external raison d’être (which could equally be a job title, or a marriage) and we risk falling apart. Yet, in struggling to make my way as an autistic person in a dominantly neuropotypical world, my entire masterplan for survival had, so far, been to be here for others and now…well, now I was at liberty like never before. It should have thrilled me but, there’s no denying, part of me felt as though it had lost its backbone.

Did I even know how to define my strength, my worthiness, my reason for being from the inside out? Even in all the years of deepest, darkest fibromyalgia and chronic fatigue I now see I was largely trying so very hard to show up for my family, in spite of this perceived failing, the flaw in my fabric, that I felt was letting them down. I would drag all my limited resources together to try and be here for them on the dates they most needed me…for that trip, the school concert, for Christmas…only to flounder two or three times as hard or as long for all the extra effort that would take, yet nothing would induce me to let them down, not even once. If I had to scrape myself off the floor and reconstitute myself into a human being, almost pouring myself into the vessel of my clothes to try and normalise myself into a human shape, for long enough to do normal things then I would do that, just to be there for them in the right place and the right time with the appropriate facial expression. I’m so glad those heaviest days are behind me now and that I’m in such a better place overall, though I feel sad for the compromised parent I so often felt I had to be and look back over those happy photos, trying to recall the bits that didn’t bare photographing, and am all too aware of the stark contrasts.

I don’t share this proudly or with any sense of martyrdom but in an attempt to try and gather in my hand, to examine it the better, that terribly fragile part of me that drove the behaviour, that put everything else first, that lived through others and felt it had to be strong for outside reasons but which didn’t know how to show up for me. This part of me was such a small voice, crying at the end of a very long corridor, that I dismissed myself as an irrelevance. Meanwhile, I had lost all sense of my own emotional core strength. Yes, I could be strong, even fierce, as a wife, a parent, a friend but for me…I don’t remember many examples. I told myself it was enough that I got this extended “holiday” to recover, to paint when I felt like it, to take it easy if I had to…but I didn’t hear out those emotional needs, or act the friend or counsellor to those parts of me that were trying to gain a sense, all these many decades later than perhaps non-autistic people process this, of “who I am, why am I here?” beyond all the trying to conform to my perceived idea of normal. I was treated by myself like a pot plant: sit here, relax, take in the sunshine…but there was a deeper consciousness that was gasping for air. I guess, when the shift in my parenting responsibilities hit me like a sledgehammer, some part of me realised it was time to, finally, get down to work on all this and the shifts, two years hence, have been MAJOR, continuing. So it crashed me right back to baseline and, from that zero point, I now rebuild myself, from the centre outwards.

There I have it in that phrase: “emotional core strength” which, surely, underpins physical core strength. I can remember writing and researching a lot about the psoas muscle years ago, arguably the most important muscle in the body, being a long-running muscle that is well known by physical therapists worth their salt to be a link between physical and emotional strength (or weakness…). Both my husband and myself had massive breakthroughs through having our psoas worked on by the skilled myofascial therapist we used to see; he cried like a baby and spent half a day sat in a field declaring he didn’t even know who he was or what motivated him anymore after his first session and the array of shifts he has made in his life ever since are too many to summarise. During mine…well, the therapist said she had never felt such intense HEAT come out of someone as when she released what felt so entangled in there. That was a long time ago and there were physical benefits for me afterwards, for sure, but behaviour patterns are deep, engrained and often bounce back if we don’t know what stuck habits we are looking out for. I may very well have cleared the decks at that point but, if you just keep on going with the same behaviours and belief systems, nothing ever changes for long…

My stuck point, and maybe it’s an autistic thing, seems to be that I don’t know how to START with my own core emotional strength. I have got somewhat better at adding it into the picture since I began to process through blogging ten years ago, but it seldom comes first. Mainly, my idea of it so easily defaults to being this external thing, something I sense in proportion to how much I am NEEDED by others, of how much impression I make on the world. Nope, strength has to be within us, somewhere about our centre, emanating from there and unconditional, as in, it just needs to be what it is…not “because of” but because it just is. It’s the deepest, most ethereal, yet most resilient and supportive structure in our lives and, yes, it will spread out externally too but, first, it has to know itself without all those mirrors to reflect itself back. An interesting realisation given all I shared about “mirroring” the outside world as my inner experience the other day and yet…herein is my problem…I so seldom see myself out there!

So, I clearly need to look elsewhere. As in, within. First. So when something happens I need to check that inner domain as top priority. Especially when it has a physical effect; the body is obviously speaking, so what do my emotions have to say, what do I need to process? Stop looking for outside “reasons” first Helen; but, also, don’t so easily default to something “going wrong with the body” because emotions are just temporary, they are energy passing through…if you let them be that!

It’s been a big realisation, coming to me softly but surely, these past 2 years, that this is the case. Because of it happening just on time, and unlike many empty-nest parents, the change in gear of my parenting role didn’t, actually, floor me in the end but has taken a great deal of pressure off me, for which I am so grateful, nor did I turn to addictive behaviours…a bottle of wine per night or obsessive shopping, a mid-life crisis or a divorce. But in my case, the body got to catch up on itself with a lifetime’s worth of messages all arrived at once, like post that had got held up at the sorting office, and suddenly I was drowning in sackfuls of mail repeatedly telling me I was measuring my strength in all the wrong ways, I was defining it in terms that wouldn’t sustain me, I was making it about matters that turned me into a shell and not the beating heart of the person I need to be to thrive and be alive. My essence. Who I would be if all else disappeared. Who I would be if I was afloat in the universe with stars for company. Me.

Looking back, it was the start of wanting…no needing…to move more which led directly into daily dancing. That was my way of, softly softly, exploring who I was in my deepest insides and learning to say those things out loud, at first with hand gestures and gentle torso movements and now, well, now I have spoken conversations with all the different parts of myself, a daily audience that is long overdue, courtesy of the Gupta Program. Its helping…a lot!

As someone with autism, I still consider this impressive and extremely game-changing, even though it took me to my 50s to get here yet such headway in inner awareness, and the openness to deal with things as they crop up, is huge…no more stoic behaviour, or burying it all in “duty” and habits (as, by the way, my mother did to a tee). I see so many people, not even on the spectrum, fail to get to this point of inner awareness, or open-forum dialogue with themselves, all their lives…so they take it all to the grave, these faulty ideas they have about themselves and who they are, built upon having “done the right things” or “worked really hard” all their lives; but what about them, what would hold them up if all that stuff happened to melt away, who are they really? I can’t help thinking this is the root of just so many health conditions because, when we don’t manifest attention for ourselves deep inside, our bodies will manifest internal things for us…to gain our attention, to bring our gaze forcibly inwards, to focus the eyes and the mind on parts of us that were nigh-on invisible to us for decades. For some, this can be transformative just in time, which is why chronic health conditions have this way of transforming a person’s life (and I heard such a testimonial just the other day…it brought tears to my eyes for being so relatable) and sometimes, sadly, it doesn’t.

In summary, I could say that, in my case, I’ve noticed that a physical meltdown often precedes a major realisation…but it would be great to get there via a more direct route and I’m working on it!

And, by the way, until you check in with who or what you are holding yourself together for and find, core to everything, that the answer is yourself then you are likely to run into problems.

So, I consider myself lucky to have been through all I have been through as it was apparently necessary to grab my attention inwards, and with the finishing touch of forcing me to notice how I had measured myself, for just so long, by “how I showed up” externally, how much I worried about others, how much I took on their pain and problems (which, yes, I do to a tee…oh boy do I do that!) by literally reeling in those feelings and making them my own, to the point of extreme pain. This only makes me a sponge for other people’s emotions, even in cases when I don’t relate…yet I still feel their energy of distress and go into pain and overwhelm that I really have no business having and all the worse for not being relatable to my autistic perspective and priorities (the difference between sympathy and empathy is that you don’t even have to agree to feel it). And when, even for a moment, I don’t feel sustained by who I am “out there” its as though all my spring-clips fall apart and my structures collapse, with more and more physical evidence as I get older.

So, thank you my body for making this “impossible to ignore” metaphor out of my symptoms…at last, I hear you and, on those days I “go extra soft” in my structure, I look about me to ponder what is it that I’m responding to but, most importantly, I go inwards to see what’s going on in there too…who do I think I am today and, if I seem to have lost all context, if I have lost my footing with “me”, I don’t avoid it but do the work to re-find myself….yes, me, Helen, the one that never goes away, that needs her voice, her expression, her dance and her art, these early morning blog-rambles (that maybe someone will relate to…but, ultimately, that doesn’t actually matter since what I share is authentic and exists, regardless of concensus). I talk to my parts and I do the work…and then, suddenly, I notice my strength has returned; my yoga is back to being sturdy and centred, my easy smile and sense of humour is back, I can appreciate tiny things and I can be all alone, no need for external validation in order to be who I am. These things are now my sustenance; they are the root stock on which I continue to grow upwards and out.

Of course, its work in progress but its a slow and steady transformation, from being so externally fixated for the course of a lifetime (extreme torture to an introvert!) to becoming deeply centred on the essence of myself which, actually, allows me to show-up even more for those around me. Parenthood never ends, I discover to my joy, and I am needed…constantly…I know that now without question, but I am able to show up in ways that don’t feel so disorienting or unbalanced. She benefits hugely from this and so do I, plus we meet in the middle more (she gives equal support to me!), so the relationship has never been healthier and the same with my husband and my friends (whilst those for whom this was never going to work, who were used to coming to see me to drain me of all I was prepared to give, or who expected me to show up in a format of “me” I have now outgrown but which they felt more comfortable and familiar with, have tended to sidle away this past couple of years). What remains may be leaner but it fits me and I am starting to feel so much stronger, inside and out, and that…from the perspective of the past few years of rocky health…is one hell of a strong starting point!

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