We’re all held by something; the very envronment we live in “holds us” but, of course, there are layers of being held and, intriniscally, we hold ourselves…though in what way and with how much success depends from person to person, affected by our particular nervous system’s “wiring” and influenced, hugely, by experiences we had prenatally and as very young children. Some of those effects influence our ability to be held all our lives. When they go array, they directly influence the way we experience the world around us, potentially leading to chronic pain conditions that confound our understanding of why we have them (or why they won’t resolve…), often because of significant levels of hypersensitivity to the environment and other unpleasant sensations that other people successfully filter out.

This is far more than a case of mind over matter: this is a reality of one person having an entirely different experience of life to the next person, in ways so impactful as to suggest that there is next to no way of making that experience any more bearable for them (though there are ways, more on that later). This degree of sensitivity goes way beyond the standard definition of being highly-sensitive and turns into pathology and lost quality of life. It is as isolating as it is impossible to explain to others and can feel as though it came from nowhere, or perhaps has been there all of your life in one form or another, perhaps worsening with the passing of time, which has been my experience, often making no sense at all in the context of how well you look after yourself, strive for a healthy life and cultivate positive attitudes and yet, all through your nervous system, there are triggers, over-reaction and pain. Its as though your nervous system is laid wide-open to the sky rather then held, or supported, by life.

One thing I am realising, ever more clearly as I scrape the barrel of my early life experiences, is that I was “circumstantially” held by home and family as a child, in fact held very well indeed as mine was a safe-and-secure family upbringing, for which I am just so grateful, but that I was not actually held all that much at all. By this I mean I was firmly, tightly, held by routine, familiarity, fondess and acts of care but that I was not carried, cuddled, snuggled or rocked often, if at all.

From what I recall directly myself and of my mother, who was generally too thinly-spread to make herself available for long in my early years and disliked being crowded, plus all those other things I’ve gathered about, been told and studied in my family’s behaviour over the years, I likely wasn’t cradled much or nestled for hours beneath my mother’s shielding arm, as I did for my daughter and still do if she craves it (even though she is now 22). There were no stories sat on my mother’s lap though my sister sometimes stepped in. I wasn’t breastfed much if at all (I can’t seem to find that out but I know I was quickly adept at holding my own bottle and can remember doing that at an early age, facing backwards in the rocking chair that was my favourite, as it enabled me to self-sooth, as though to gain myself a niche of privacy and comfort as I averted my eyes from the always busy and brightly-lit room) whereas I breastfed my daughter extra-long by western standards and ceased only at her own cue, using those precious times to calm and cultivate closeness with her. I wasn’t scooped into the parental bed for cuddles, in fact I really wasn’t made welcome there at all (I recall that vividly!), whereas my daughter slept with me for the first several months and was a frequent visitor for years, always welcomed (as long as she meant to sleep, at least for a bit…and I never pushed her away) even when I had work the next day.

I see, in all this, how I strove to do things very differently when my time came to be a parent, almost with vehemence you could say, though it was to be another few years before I realised it came from a sense of having been deprived of certain contacts when I was a child. What my own parenting style also tells me is that I am not inherently adverse to contact, at least not with those I feel intimate with (I’m not a happy hugger of friends, broader family and strangers), its just that it wasn’t made available to me at that age; at least not in the same way or with the same attitude of wanting to offer it, or considering it precious time spent bonding together, that I made available to my daughter. I was left to sleep it out during the day in my pram, parked in another room or, frequently, the garage as the house was overcrowded with three older children. No-doubt that was also an attempt to gain me some peace and quiet away from them too, and to encourage me to cry myself to sleep as was the trend at the time, but my two earliest memories are of lying there listening to the sound of their chatter and play through windows and walls, feeling seperate, alone and unheard. The degree to which I can so vividly recall that feeling in my gut and my nervous system, as visceral as if it was yesterday, is a telling clue to the way I have felt left-out all my life.

Instead of maternal cradling, I was handed around much of the time, like a nuisance sack of potatoes that no one really wanted to carry. I was frequently lumped into the lap of siblings, still fidgety and fed-up children themselves, where at best I became the butt of experimental play that sometimes backfired horribly without parental supervision or, at worst, repeatedly belittled and made to feel small. Of course, I was small but smallness here suggested “less than”, a nuisance, stupid, unwanted, the one that didn’t fit in to the unit rather than cuteness or a call to be gentle. I was the reason we no longer fit in the car to “go anywhere”, the cause of cancelled holidays once I couldn’t fit in the “boot” (where I remember often sitting once I didn’t have to be held, my journeys viewed backwards as I rocked and rolled around on the corners; seatbelts were yet to become mandatory), always a kind of third-wheeler in everything, though I was actually the fourth. My sister took on so many hours of my care, sent out and about to push me to sleep in my pram, she tells me, though she was only 12, even walking me to the postnatal clinic for my regular weigh-ins, which surely rose some eyebrows but I will never know how many.

Experientially, all of this felt like I was a bother…and if I bothered people, they really didn’t like it, and it only drew the wrong kind of attention to me, so I quickly learned to be quiet as a mouse, very still, unopinionated, complicit and quiet, withdrawing inside and pretending to be alright and self-contained when I wasn’t really. Any needs that I had got pushed deep inside. In particular, tactile needs I didn’t even know I was missing, since I didn’t even know what it felt like to be cradled and rocked, to be soothed and hugged, swooped up and nestled under a parental arm, got lost down the cracks…to resurface later as sensory deficits, an inability to know where I end and others start, to self-soothe effectively (except, ironically, learning how to self-soothe has become the obsession of my adult life…since, to me, its not inbuilt or automatic so I have to constantly work at it).

Such life skills as a clear sense of self and self-soothing skills have now been proven to derive from those crucial early years of parental contact. Children don’t just parent themselves to adulthood, so offering food, warmth and shelter simply isn’t enough all by itself and there are solid reasons why skin-to skin contact is a total gamechanger in how a person develops in order to thrive for the rest of their lives, promoting development of physiological systems involved in regulating emotions and stress responses (studies have shown). The western habit of putting newborns into plastic cribs away from their mother in those first few hours after delivery is now known to create havoc with the nervous system and immunity of the child and is one of the main reasons I researched same-bed nursing when my daughter was born (when most new parents I knew were making Gina Ford’s “Contented Little Baby Book”, 1999, with its almost brutally strict regimes, into their baby-rearing bible, I was diving on Deborah Jackson’s recently published “Three In a Bed”, 1999 and throwing all that regimen out the window before I even started). In the hospital, I made sure to have a private room and held her close under my arm in bed whenever the nurses weren’t around, even as I dozed (strictly forbidden!), scanning for their footsteps so I could sit up or put her back in her cot when I heard them coming.

I now consider that my various maverick parenting methods, along these lines (including long term breast-feeding and same bed sleeping until she was ready to move to a cot) have proven to be so important as to have bucked a long family trend of hypersensitivity because, even though we are so similar in other neurodivergent ways, she does not demonstrate my sensory defensiveness at all, loves physical contact and is far more confident and outgoing. She’s able to follow her dreams and aspirations whereas mine were crushed out of me by the steady compression of feeling “too much” everywhere I turned.

Without the learned awareness of physical demarcation that comes from regular contact with “other” the child’s sense of where their own body ends and another begins is left vague, abitrary and wide-open to abuse. All my life, I have tended to scoop everyone else’s problems and sensations into my own, perhaps because it proved so requisite for me to scan the room, constantly, as a child in order to premept everyone else’s moods and needs to safeguard my own survival…I simply had to have that advance warning because I was just so affected by everyone else around me…and now I just don’t know how to stop. Whenever I am in proximity to other people, I feel everything, even things others don’t seem to realise about themselves and its like an onslaught of highly affecting, eratic energy currents leaving me exhausted and triggered to hell, unless I pull hard-earned tactics out of the bag and use them diligently. For other people, the ability to filter these effects seems to be inbuilt!

That tendency to pull deep inside myself, to regard the inner plunge into the depths as the only effective barrier I have, leads to hyperfocus and even OCD-like behaviours that take me over, all the-more, in proportion to how much I am feeling triggered by environmental factors, not just from people but from all manner of sensory details that I pick up on (light, sound, smells, sensations such as fabrics and clothing labels really irritating me, unseen influencers such as EMFs and air pressure changes, etc) that other people effectively filter out as though they are simply not there. Instead, I register it all and so I distract myself with fixating on other things, withdrawing more and more into myself; a trait that began in early childhood.

The thing is, at the surface of my childhood, I was quite alright as I was being circumstantially held, so very well. My family home was a safe, well-fed, warm and light, encouraging, generally benificent place to be, at that surface. People commented that they liked to visit as there was an unconventional level of bon viveur and wit, and always something going on when everyone was home. We loved, though fiercely in my mother’s case, undemonstrably and cerebrally (as in, with our minds and a kind of “given” familial loyalty) but with very few physical gestures or words of love, and that continues to this day. Even variable facial expressions are muted, to a very high extent. Yet I knew I was loved, my circumstances all told me so.

However, whilst being held circumstantially is a great adjunct to being held physically it is no substitution; there needs to be both (at least for the younger child; until they develop the inner systems to take over from the parent). Nor can you treat a much younger child the same as older siblings, assuming them to be independent and “alright” when they are being particularly quiet or withdrawn, or perhaps not wanting to bestow more time on one than the others, which often felt like the case, as though my parents were unable to spread themselves across the two age-groups at once (not my fault there was a sizable age gap…and I possibly confounded them by quickly learning to act much older than my years).

Because of this constant assumption that I was more alright than I was, I attached to routine circumstances more than I did to people, running home to the comforting sense of familiarity (and to music, books, drawing and other stims) more so than to tell an adult about my toughest days at school (usually because of my neurodiversity) whilst continuing to feel very alone and necessarily self-contained in my childhood. These were my circumstances and they held water for me, for a long time, so I got through alright to the point of my late teens, slipping under the wire of people’s attention. However, the thing with circumstances is, they’re unreliable and they inevitably change; they can never guarantee to see you into the future, in the same way as important lifeskills such as good boundary setting and an ability to self-soothe or modulate overwhelming emotions and responses (learned at that very-deep level that becomes hardwired into the infant from the crucial “early years” experiences their frequent contact with others affords them). A child can’t learn and hold onto a circumstance the same way that they can learn, and internalise, touch and the resultant sense of selfhood and personal integrity that can only come from those early days and nights of frequent contact, skin to skin, heartbeat to heartbeat and all the crucual, inherently developmental, movement that comes from cradling and carrying, hugging and caressing. The circumstance, like the parent, will one day cease to exist; the difference being that those key lifeskills wordlessly taught by the parent to the child, through contact, will stay with them all their life, whereas the circumstance will not!

When a sense of self and safety derives from a particular set of circumstances, you fall apart when those circumstances inevitably dissolve. When that happens (called “growing up”) it feels as though a top layer of skin gets stripped away and you’re left utterly exposed to all of “the new”. Transitions, in general, become perilous to your precarious nervous system. So you come to obsess about domestic routines and safe environments, about continuity and predictability, fearing that they might disappear as much as another person might fear being flayed-alive, because those very structures have become your “skin” in a world with no barriers.

So you also obsess about recreating versions of your childhood, with an oddly-persistent brand of nostalgia, even though that childhood was “less than” in some pretty crucial ways, because it was the only real “parent” you ever knew, having become the blueprint of your sense of “being held” in the world. When I’m anxious or stressed, I routinely self-sooth by listening to the music of my childhood decade. Looking back to when my mother died, I see how I grieved the loss of the family home and its sense of being an anchor to my psyche as much as I grieved her not being there anymore and, to be honest, I have felt unanchored ever since (a lot of my health issues emerged from that point). People who knew me assumed I must have had a spectacular childhood to grieve so much when, the reality was, I was simply clinging onto it (still do!) because, deep down, I sense the answer to my riddle lies hidden in there. I’m still scouring that childhood mystery, seeking to find and plug all the holes and gaps where my sense of intrinsic wellness and safety started to leak at a very young age…and still continue to fall out, as though I have been a walking sieve all my life. What made so many holes? How does this relate to chronic illness?

This isn’t about my family: patterns of behaviour perpetuate across the generations, people do the best they can with the circumstances they are presented with (I wasn’t a planned baby), neurodiversity certainly plays a part if parents themselves aren’t tactile or demonstrative and prefer to show love through acts of service. If I, myself, was also born with neurodiverse traits and with particularly high sensitivity, both of which are known to be genetic as well as environmentally impacted (prenatal or birth influences and trauma can also play a part) then how much did I bristle to be held, or touched in certain ways that didn’t feel right to my particular sensitivites, perhaps by other children too young to manhandle me so much? Did I push away, arch my back, detering cuddles that might otherwise have happened? Yet, as is still the case for me, sometimes when I am bristling with discomfort the most, the very thing that I need most is a good, firm, hug…the kind that envelops and squeezes without tickling or fuss…just, simply, providing a sense of being contained and held reliably, with strength and no demands (reading about autistic researcher Temple Grandin’s self-invented “squeeze machine” was a revelation to me on this topic because I can certainly relate). These days, my husband provides those kind of firm hugs for me but it took me a long time to realise how much I need them, and how to ask for them whenever they become urgent (and if I forget to ask and they don’t happen for a while, I hurtle more and more deeply into the sensory overwhelm). If my parents didn’t know that, how easy would it have been for them to have gone awry with me, not realising how much it affected and deprived me of what I most needed when they thought I just needed to be left alone? Autism doesn’t come with instruction lables (and they had no idea I was autistic with special needs)!

To be clear, there’s no blame, no emotional trauma, no bitterness in me about the way I was reared and, if anything, I feel more fiercely appreciative and at peace about it, emotionally and cerebrally, than I ever did as I see it for what it was; the very best intentions gone awry. The neccessity, here, isn’t to dwell in the past but to bring my nervous system up to speed with developmental milestones missed along the way so that, while I appear to be a fully-functional adult of several decades experience and a full and active life behind me, I live with sensory defecits that make my life seem impractical, unfeasible and, at times, almost unbearable.

My topic, here, isn’t all that ancient history…its about figuring out how I got here, living now with what I finally realise to be so much more than just an off-the-peg sensory processing disorder. What I actually have going on here, in a life where I am so very sensitive to everything (lights, smells, EMFs, chemicals, people, noise, fabrics, unseen forces…) is full-on sensory defensiveness, or Sensory Defensiveness Disorder, a brand-new concept to me as of the last few days, though I’ve been edging closer year by year as I’ve played tirelessly with the topics of sensitivity, of “touch”, “triggers” and “traumas”, in this blog). Its proving to be one hell of a massive epiphany as I inch through Sharon Heller’s book “Too Loud, Too Bright, Too Fast, Too Tight: What To Do If You Are Sensory Defensive in an Overstimulating World” 2014, making note of all the ways I can start to unpick the effects in my own body. The way we were reared is not the only presumed factor in how we develop this disorder. Whilst prenatal or birth trauma can also have an effect and genetics probably come into it, its a disorder that can arise as a result of later-life emotional trauma, injury, prolongued stress, post-viral or post-operative disruption, toxic exposures, even hormone imbalance, menopause and the general aging process. In my case, I can trace how the effects amped up to a whole other level each time one of these afronts occured in my life (I have been through them all at different times) and then seemed to stay at this new plateau of pain and sensitivity with each amp-up, in a way that suggests permanence.

Yet, the book is quite clear, no one is too old to benefit from some permanently positive changes in their sensitivity levels using some of the suggested methods, as part of a personalised sensory diet used to retrain the nervous system. Just as I have been using the Gupta Program to retrain my brain from its loops of behaviour relating to pain and fatigue, this protocol takes matters a step deeper for me, as a sensory sensitive, regarding the ingrained sensory defensiveness that determines just so many of my experiences (tripwiring me, constantly, back into chronic health issues). Whilst its important to retrain the brain in these cases, tackling the nervous system goes one step deeper into problems of this magnitude and there are sensory exposures, such as firm touch, vestibular exercises, movement and light therapy (tactics beyond the present scope of the Gupta Program), that need to be integrated into daily routines in order to tackle this degree of sensory disorder. Coming to understand your own sensory defensiveness traits, if indeed you have them, is an essential part of the process and these weeks of recognising mine, parallel with reading the book (also exploring the territory of sensory overexcitabiities, topic of a prior post) have been nothing short of cathartic.

In a sense, this post is just an introduction to more that will be coming on this topic as I get deeper into the territory but, if any of these experiences sounds familiar, I strongly recommend you get your hands on a copy of Sharon Heller’s brilliant book (which, ironically, has been on my reading list for such a long time…and it took my first proper holiday in three years for me to pick it up at the perfect time to feel into it, given my sensory triggors were rather different for those few days, due to the change in circumstances, enabling me to see them more objectively). I have returned from holiday, though I have yet to finish reading the book, quite determined and renewed in my optimism to tackle my sensory overwhelm using most of the methods, some of which I find I have been quite-instinctively drawn to before (such as dance movement, a version of skin brushing though now I am following the recommended Wilbarger method, key dietary changes, vitamin B therapy and qigong) but now I have far more data and context to go on as I develop a far more targetted and structured approach. My new sensory diet is already underway, paced throughout the day with (importantly) all the full commitment I can give to it, and I will report back over the coming weeks.

Recommended: Sharon Heller – “Too Loud, Too Bright, Too Fast, Too Tight: What To Do If You Are Sensory Defensive in an Overstimulating World”.