Cellular Echoes, a Multi-generational Legacy of DES

Having touched on this in the first post, this section is intended as a refresher. Partially this is intended for raising awareness to a problem which affects millions of people born during the 1950s - 1980s, when DES was administered to pregnant women via medically good-intentions but without awareness to its long-term effects on the mother, children, grandchildren.

Diethylstilbestrol (DES), a carcinogenic endocrine disruptor, has multi-generational adverse effects through disruptions to the neuro-endocrine system and DNA mutations impacting cellular and hormonal development. These mutations can manifest as cancers, metabolic disorders, reproductive dysfunction, chromosomal abnormalities, and chronic neurological conditions (migraines, tumors, lesions, dysautonomia).

This genetic legacy is a backdrop upon which my life was built, which resulted in innumerable divergences of a normal-healthy path, from fulfilling desired physical expectations, procreation, and so much more.

A Reset to The Rules of Engagement

Memory is a skill we easily take for granted, often assuming it accurately captures reality as it unfolds. We’re taught that our experience of the present occurs in real-time, yet in reality, there is a slight delay—signals must first travel through the nervous system and undergo processing before being encoded as memories within the brain’s dura mater. Memory is the brain’s intricate mechanism for translating sensory input into meaningful emotional and behavioral responses, shaping our understanding of both internal and external worlds.

This complex neurological system depends heavily on balanced neurotransmitter function to accurately encode experiences and guide our daily lives. Severe trauma, as seen in PTSD, profoundly disrupts this delicate neural language, permanently altering pathways—especially dopaminergic circuits—that influence emotion, cognition, and behavior. Once formed, these trauma-induced changes can become deeply ingrained, often irreversibly affecting one’s neurological landscape. Coping with severe PTSD thus requires lifelong adaptation, reinforcement of coping strategies, and an ongoing, difficult journey toward acceptance.

Fragmentation of memory can be understood as a memory disorder that includes subjective and phenomenonological facets directly impacting the ability of an individual to recall memories in an integrated and holistic way.

In my seventeenth year I would drive to SF at night to take photos before dawn. Over the years this favorite city of mine became a source of severe and lasting trauma.

The impaired person usually suffers from physical damage to the hippocampus. This may be due to the result of trauma, such as post-traumatic stress disorder… consequences, such as oversensitivity to some stimuli, impulsiveness, lack of direction in life, impacts to existential awareness, emotional dissociation, and often a distorted perception of oneself… requiring the patient to mask their concerns and despair.

Together We Drifted Toward The Void

Eventually, the lifeboat fell apart — the house of cards collapsed. Across the eras of a beautiful yet fractured life, layers of trauma accumulated, intertwining at the point of my near demise, when in the same year I lost my twin. We had endured those early years closely together, though our paths were not always aligned or identical. By this point, the cumulative losses had become immeasurable and insurmountable.

We experienced diametrically-opposed impacts from DES exposure, chromosomal deficiencies echoed in reverse, genomic sequencing showing the maps and flags and arrows all pointing to the wrath of diethylstilbestrol. Everyone has their limits, and we knew so very well where the next decade or two would go, the advanced treatment path involved; the trajectory was bleak and disheartening. Some may judge one’s rational, data-driven decisions, fully respective of life experiences, to be inherently irrational in their moral views. Many people since have levied their opinions, but they were never forced to walk this path.

A Life Without a Mirror

Consistent with the existentially spiteful patterns of non-consensual trauma upon my body, the EMT tasked with saving my life had slit my throat open length-wise, rapidly and jaggedly in an emergent (ie absolute emergency) airway incision. This severed half of my vocal chords, permanently paralyzing that amount of vocal functionality. My brain was already off-line, in global ischemic state, lights out. There was no pain, there was nothing. I was gone.

Memories are mostly lacking from that month, though photographic timestamps provide one view, a phone held while walking, a mistaken shutter press. The askew pupils indicate a rare and severe side effect, the result of ongoing treatment having been fully insufficient. Once more, healthcare providers had failed in their long-term care. After this, nothingness.

unplanned, unexpected, the last photographic memory

Body moved to the ER, the OR, the ICU. A second, larger, circular incision was made in my throat, the first haphazardly sewn closed in zig-zagged scars. My limp unconscious form was hooked up to life support machines. Days passed, a week, then more. Slowly, neural matrices enervated the consciousness to reboot, to resume an awareness of our shared reality.

A pinhole of photons appeared, and from the vast darkness every cell was screaming, oxygen and a feeding tube through the stoma hole in my neck, rhythmic pulsing-machine breathing for me, the only solace a button taped next to my hand for morphine - “press to release”, into the IV line. Apparently I was alive.

The pinhole of light widened, forcing outward the timeless nothingness, replaced by pure all encompassing light, then shades of grey, then shapes, without concept of meaning or definitions.

“Life will only be more difficult now.”

One result of the coma was that broad sections of life, of memories, events and persons, places, experiences.. were simply gone. The variously affected zones and thalamus projections, and some functions of the posterior parietal cortex, they simply did not wake up with the rest of my brain.

I will never remember all of the memories which I have lost.

With those vacant memories, gone too were my former abilities of speech, the ability to walk, to hold a cup, to feel emotions, to focus further than the end of the bed in the ICU, to understand the passage of time. So much was lost.

looking upwards, on an IV drip or two or three

“She may never be able to speak, to walk, or leave the hospital, if she wakes up at all.” - Neurologists, Attending to the ICU

As it turns out, the experience of Global Cerebral Ischemia induces substantial changes - that special “off switch” called “no more oxygen today”. Global Brain Suffocation. Flatline waves. No respiration. System Shutdown. Those scars on my neck - from the respirator stoma and the EMT’s emergency attempted endo-tracheal intubation - they are still present and in the mirror every day. Every morning upon waking, the scars are there, a forever reminder of the Void, the Loss.

Eventually I did relearn how to walk, to speak, to conceptualize the passage of time, and how to exist without those old blocks of memories weighing me down. I learned how to confront what remained, which helped with working through the newly faced medical trauma from the events of the ICU and temporary non-existence.

How did my brain wake up at all? No one had answers. Years later, periodically asking new neurologists, still no one knows. Since waking up, it has never been easy.

When Trauma is linked to Identity

The Self, one’s internal identity, with its link to the past, images of the memories, the joyful moments mixed in with all of those years of pain. It’s a jumble of words and phrases after a while, meaningless. How can one move on when they are no longer fighting an internal struggle against their past? It would seem simple, easy. Perhaps so. Perhaps the temporal lobes, with their functionality and dysfunctionality which results from PTSD, would benefit from additional research; this is my course of action, to reprogram the reactions, reprogram the responses, and to heal the mind and body via positive feedback loops.

a lovely animated gif of the brain’s Frontal Lobe, left cerebral hemisphere

On Consideration of Complexity, Treatment Modality

Neurology is a complex subject. Emotional intelligence and the cognitive underpinnings of its origins and capabilities, these are a complex area of study. The simplest description of the science which describes the manner in which the human brain gathers, processes, stores, and recalls memories is also a complex subject. So much complexity, how to make sense of it all?

Conceptualizing one’s existence after waking up from an event where death was assured, had your throat sliced open with a scalpel, connected to machines to keep your offline brain oxygenated, and then eventually to reintegrate into society’s fabric of shared existence — after returning from the Void of endless nothingness — that is a Complex Circumstance, one which requires a combination of neurological, psychological, and philosophical continuity of care. In America we do not have that as an option, not on any regular insurance plan, the patient must fend for and advocate for themselves.

What then are the options? Is ‘dopamine agonist’ based therapy the only choice? Certain not. It won’t even be recommended by a therapist because it would require enrolling in human trials for the subject, and that’s often far too involved or often unavailable for many patients.

So, one may read this and think and inquire..

“Surely this is a bit extreme, unproven?”, while others have inquired, “why not try the research methods for MDMA, Ketamine, Lysergic Ergolines, or A or B or C or another instead?” Or what about DBT or CBT or EMDR?

Sure, sure. Perhaps in the literal words of one truly genius level therapist..

“How about instead of taking ${critical medication}, you just imagined what it would be like to have these therapy sessions while taking the medication, you know - without taking it?”

The answer to all of these queries is that I have been through every possible and available treatment pathway over the past decade and more. Some have been life changing and positive and beautiful, others less useful, some fully a waste of time. Some therapists have caused additional pain with victim blaming, tearing holes into the tattered fabric being repaired, those horribly malicious people — they do exist, and that in itself is a depressing fact for people seeking care.

Visual Remembrances and Photography as Healing

One of the methods which I’ve found most useful, lasting, and capable of more than words may define, is to repair these old images. Not in an “exposure therapy” manner, but in a restoration of the mind’s emotional response to their evoked memories.

For those who have not immersed themselves into the study of cognitive neuroscience, or found solace in the philosophy of causal-determinism, the concepts around neural-programming may sound like science fiction. Fortunately, our current era of medical science offers the fiction of fifty years ago as an experienced reality - right now, today.

This method involves taking a prescribed ‘dopamine agonist’ medication, which causes the brain to activate dopamine receptors throughout many critical pathways. Once the medication reaches a necessary level, then my gaze is returned to the those slides. Hours will be spent digitizing, processing the images for color correction, repairing film damage spots, and normalizing the ICC profile, normalizing levels, adjusting histograms via curves.

dopamine, the first of the three catecholamines

Human trials for this method are not common. There is no profit to be made by the pharmaceutical companies with drugs which have existed for decades, using personalized treatment which varies by individual (and is therefore difficult to quantify without substantial similarities between patients - and I am not a common patient).

For those curious, I’ve included various embedded links within this document, but here are some additional readings which may offer insight.

• The mesoaccumbens dopamine in coping with stress
• Dopamine D2/D3 receptor agonists attenuate PTSD-like symptoms
• The hypothalamic-pituitary-adrenal axis in PTSD: Pathophysiology and treatment interventions
• Limbic response to stress linking life trauma and hypothalamus-pituitary-adrenal axis function

Why are we talking about the “hypothalamic–pituitary–adrenal (HPA) axis”? Because the Hypothalamus controls Dopaminergic activity, and the Pituitary gland (which controls hormone secretions) is deeply affected by Dopamine levels rising or falling.

In this meditative mode of visual analysis, amidst silent revisitation of trauma-informed responses, my intentional flow of thoughts attempt to concurrently apply a revised emotional mapping to the associative matrices within; to reprogram the damaged links via new dopaminergic pathway etchings - made possible by the cognitive intensity of this combination of meditation and medication.

It feels like removing rust from a long treasured heirloom, to see the glint of its origin material, its remuneration now complete.

Eva preparing for neural-programming — a self-photo facilitates awareness of Dopamine levels - visually represented as “Dopaminergic Flush”, a stateful readiness for successful treatment

The Great Reprogramming of Dopaminergic Pathways

The mechanism of action involved with this medication facilitates the process of creating new neural connections, by linking sensory data from visual information processing circuity to the emotional response relationships involved with memory recall; all of this occurring via complex actions of the brain’s dopaminergic pathways.

During this treatment process my thoughts wander and I don’t push back, just let the feelings occur and move forward. It’s a form of Zen in some ways, letting the emotions exist without holding on, without “desiring a lack of desire”.

Time and distance is required for reprogramming the mind’s emotional recall, for forgiveness. The process is possibly never complete, but it’s a beautiful experience to find oneself on the other side, able to look backward and see the beautiful ways that once were.

I see those youthful eyes, consistent across each image, reminders every time. The earlier years retained an innocence about them, harboring damage too deep to acknowledge, express, or let forth. Now those moments can be set to rest, and in whatever way it may heal, it offers solace.

eyes reflect with a minor smirk, thrust into the present from so many years passed

Carrying around my father’s old Pentax ME Super 35mm film camera (digital did not yet exist), I would learn the ways and means of translating one’s vibrant sensory world of tangible, visible, and audible queues into a reflexive snapshot of a single ellipses of time.

Film photography platform of my youth, the glorious Pentax ME Super

The science of film, its correctness of inter-related momentary ordinals, exists as a knowable object in its own right; defined by functions which can be modeled, simulated, and counter-adjusted according to objectively determined interlocked sliding scales of equilibrium equations… the science of light was logical, beautiful.

The spatial-dimensional complex of neurons and axons within my young mind was growing rapidly, desperate for knowledge, experience, adventure. So much of that mindset was searching for answers, finding beauty along the way, often in spite of the many stumbles and tragedies intertwined.

On Genetic Inheritance and Endocrine Disrupters

Looking back on those years, I see patterns arise, ones which describe the ensuing years in predictable ways, in their benefits and concerns equally mixed. I was not a canonically ’troubled youth’, rather my troubles were genetic in origin — now identified as ‘Generational DES Syndrome’.

[*] DES = Diethylstilbestrol is a carcinogenic, xenoestrogen, ATPase inhibitor, endocrine disruptor. Linked to a variety of long-term adverse effects in women who were treated with it during pregnancy, and in their offspring, and further affecting the F2 generation of grandchildren.

In simple terms, this causes DNA mutations which are carried forth into systemic neuro-endocrine development, cellular expressions both causative and compounding, as the body develops into adulthood. Whether these cellular mutations result in cancer, neoplasms, meningiomas, metabolic dysregulation, sex and growth hormone disruption, reproductive sterility, chromosomal defects, or combinations of those and other grievous maladies, the possible impacts are vast in quantity and scale — and still being studied.

Some patients lead generally normal lives, ignorant of the cause for their condition, while others experience an unnecessarily early death. In-between these extremes my life has coalesced, wavering between periods of intensely healthy highly-competitive endurance athleticism to months of debilitation from chronic nervous system collapse. Some of my most memorable resting moments were the cumulative hours knocked-out from exhaustion and asleep inside the cold, dark, rhythmic magnetic thumping of a MRI tube, or the pulsing energy waves inside occasionally very warm CT scanners.

DES has disruptive effects which exert negative feedback on the hypothalamic–pituitary–gonadal axis (HPG axis), suppresses the secretion of the gonadotropins, luteinizing hormone (LH) and follicle-stimulating hormone (FSH), and suppresses sex hormone production as well as gamete production and maturation.

Looking back on DES and its impacts within my genetic programming, I can see where it derailed an otherwise normal childhood, where it imparted physical and existential questions for which no adult or physicians ever had answers, and how those early years drove me further into an adulthood focused on amassing knowledge of systems theory, neurology, endocrinology, genetics, biochemistry, and decades of exploration into modulating the steroidogenesis process occurring within these veins.

Coincidentally, I would later learn that endocrine specific cancers were rampant in my mother’s side of the family - likely also from intergenerational DES effects. Over the many years, my endocrine’s HPG-axis would crash in more than one dimension via multi-glandular failures, a pituitary hypophysis neoplasia diagnosis would arise, diagnostic concerns into suprasellar meningioma, and eventually the cumulative effects would lead to the conditions which resulted in my near-death and coma.

Youthful Adventures, Expansive Landscapes

Scaping together enough for a second-hand Manfrotto tripod and lenses for a near-mint Nikon FE2 - the camera I received from my father for one birthday so long ago, that period was when my heart fell in love with the beauty of capturing moments in time. Youthful innocence was at a peak, everywhere held introspective beauty in some manner - if it was framed subjectively well and maintained The Rules.

rain arrives along the Western Slope of the Rockies

Then there was the glorious selection of film: the richness of Velvia 50 - perfect for landscapes but too rich for portraits, the ever-so-accurate Provia 100, the old classic Kodachrome 64, occasionally the normality of Ektar 100, and on occasion spending time without color at all - but oh let me show you Agfa’s superpanchromatic Scala 200, the most uncommon of them all.

I loved this era of film for its uniqueness, it’s vivid ability to capture reality in a way that was lacking in prior decades - eras of advancements in technology which defined the ability for people to capture the present tense and carry it into the future, with accuracy, realness, and tangibility that we will never have with today’s digital options.

the slide films of my youth, vivid colors, rich contrast, a life before the digital world

I loved this era of film for its uniqueness, it’s vivid ability to capture reality in a way that was lacking in prior decades - eras of advancements in technology which defined the ability for people to capture the present tense and carry it into the future, with accuracy, realness, and tangibility that we will never have with today’s digital options.

As with everything immersion worthy, I studied photography via encyclopaedias, library books, documentaries, and by asking a thousand questions. Who best to answer but Elke, the co-owner and an early role model at my local professional photography shop; one which housed an amazing collection of vintage cameras and lenses - many that I would imagine forever out of reach: Leica, Hasselblad, Rolleiflex, Zeiss.

My perspective in those times demanded that the best memories surely must be captured, regardless that slide film was expensive. Each shot was a cherished and planned capture, yet still one were lucky to have 2-3 usable results per roll of 24-36. Fantastisch. I loved every minute of the process.

Of Landscapes and Studio Lights

These slides became a timeline, closely selected and optimized photos of my adventures, my travels: the tragedy of storms and the silent motions of rain, landscapes and sunrises and sunsets, mountains especially loved and well traveled. Of peaks climbed, valleys explored, off-trail backcountry wanderings alone in the autumn, and cold snowshoeing adventures with Vati too.

Then the studio. Learning about black and white film, darkroom techniques, rear-projection lights, soft-bounce filters, shade-booms, and multi-flash timers connected to a remote shutter that I could hold in one hand - the original selfie method, before the term was ever coined. These self portraitures were mostly a private occurrence, an experiment to record an ever-changing existence which often felt unknowable and painfully everlasting, other times its opposite.

long adrift in lostness, many found in my eyes precisely who they wanted to see

Conceptualization of Self

In some ways it was photography which helped me work through the DES-affected hormonal years of explosive emotions: the Conceptualization of Self as an evolving modality. How could one build a schema involving periodic memory without tracking the memories? And what better way to have reference to those than with film?

So, along with landscapes I captured my visage; an evolving physical form of perpetual wonderment and wandering cognition, deeply felt emotions, all wrapped up into a warm body with occasionally ice-cold blue eyes - constantly changing and growing through the years.

a single spoken “please”, but no one was truly listening

From the Outside Life Was Wonderful

Unfortunately along the way there were events of intense and prolonged trauma which led to a deeply felt hatred for nearly the entire era of youthful memories - not for what the photos were, not for who I was, but for the memory’s visual associations with the events of the era in which the traumas occurred.

I had no ability to heal from the events at that time, and so to my young mind those events simply could not exist, lest it were to be that I did not exist. It was one or the other: acknowledge the trauma for what it was, how it had shaped me, and chose to suffer the wrath of my own willing hands. Or instead, I would rather to erase all of it. Erase the moments from my mind and never think of them or refer to them or believe that they were real; to erase part of my experience with life. Years later that wish would be granted, an outcome in ways impossibly unexpected.

Existentially, it was a challenging duality. So the slide portfolio was put aside, boxed up, never taken out to review or inspect or share, and only occasionally forcefully ignored whenever asked about the subjects. The memories did not exist. The cognitive methods I learned became a hardened, steadfast technique, an emotional control unrelenting, and it lasted decades. No one knew anything, and no one needed to. Those memories were only pain (but they were not, my youth held so many beautiful moments, ones which I would only connect with decades later).

Outward Success Surely Heals Old Wounds

Years passed and milestones occurred, much as the loved ones around me had long expected. A standard life evolved. Marriage, a home, thoughts on pregnancy, depression, elation, stress, travel, and promotions, and everything being pretty good on the surface.

A blink of the eyes and there I am again: Bare. Lost. Alone. In the pure Darkness.

Yet family was there, friends were there, all of the markers of success and happiness were there. Regardless, trauma events from years ago were invalidating the potential for happiness in ways unknowable to the loved ones around me. No one could ever know. The memories could not exist, or I would carry them to my grave.

years so often idyllic, if not for the unspoken undercurrent

Concurrently, an undercurrent of escapism, a subtext to the patterns of wants and needs, this was all despite the abundance, and it was that undercurrent which became a rushing and inescapably deep tide. The memories become an unwanted passenger, a little non-angel perched on the shoulder - whispering reminders in the most inopportune times. A foil to the good times, intertwining themselves deeper, demanding either solace and release or self-destruction.

Trauma at the clinical level, the kind which arises from unspeakable events in youth, or wartime combat, or being assaulted at gunpoint and left stripped and alone in the pure darkness of 18th & Florida St at 3am; those somatosensory memories become etched in the mind. Maybe more than one event is etched, maybe there’s too many to describe.

Bleeding out in a sodium-halide bright white tile-floored bathroom, a stainless steel drain on the floor in the middle where the redness of life circles and downward flows. You slip in the blood, bare-footed, abdomen held in one hand, reaching-grasping with the other, screaming voicelessly in full-system shock.

Prose exists so that I do not forget the beautiful moments, memories, and meandering thoughts. Its intention is to facilitate a greater degree of accuracy in referential recall, for my own purposes, and to share one person’s experiences via photos and writings about where the many actions took me along the way.

Still though, Why?

Because of the coma, and the life-support machines, and everything involved with rebuilding cognition after being brought back to life. There are years of events which may never be recalled, whole sections of life which I’ll never fully remember having lost. Perhaps it’s better that way, but I will never know in either case, and that’s okay.

Priorities shifted, and now the freight train never stops. Sleep is difficult, rest can be fleeting, both bringing a challenging reality to the oft’ heard phrase, “I’ll sleep when I’m dead.” Most people don’t know how that feels, and I do not think they would use the term so lightly if so.

I never want to forget this beautiful realm, its struggles and trials, kuschelig-weich süße küsse, the hugs and naps – and occasionally the complexities of corporate decision-trees too. This everything of being, in its infinitesimal grandiosity and minutia of glory, graced from Hashem or Lilith or the forever over-watching mountain gods too, perhaps?

On Spirituality or Nothingness

My sense of spirituality has no names and no demands of dogmatic mindlessness; it is this everything of every-day and every-time that I close my eyes to drift back into the nothingness of the Void. The nothingness of everything is always there, carrying me, calling for an eventual return, but not right now – give me one more day, one more adventure, one more embrace. Then, in-so-the interim of variable time, I may share them with you too.

Time and Timelessness

So then, this site is in some ways a grasp on the finite experience of time. A catalogue of imagery and concepts and concerns and emotions which exist only for temporary purposefulness, or ultimately meaninglessness. I’m not sure which, but here we are, and often times it’s just for the simple enjoyment of writing. A game which my mind plays with grammatical phrases, of equations and variables made of linguistics, of inference driven convolutional intentionality from the frontal-temporal lobes and dopaminergic pathways.

Since waking up those many years ago, a commonality of mind has been to focus on the present as much as possible; an exercise in occasional futility combined with a mostly Zen aligned stateful detachment. Day-to-day involves a meditative awareness of the senses while distanced cognition-threads process a long-held buffer of Parasympathetic Nervous System synapse firings, neurotransmitter floods and waves, accelerated DAT transport queues.

From the Void

From the void you awaken, into this body from which consciousness departed some lifetime ago. Inside the void all is null, an absence of existence, sensory nothingness, until the timelessness becomes a single photon of light. In an unknown span of time it expands, drawing consciousness back into the this shared realm of existence, back into the world of the living. From that void, an endless timeless realm where pain does not exist, the conscious mind “awakens”, and as it does the senses begin to scream in electrical amperage everywhere there is Aware.

The light expands and becomes the world, gaining contrast, and with that light appear shapes and structures without color. At first all is gray-scale, until slowly color dawns upon the senses, eventually distance and depth are concepts once-more, but there is no other sensory world. Scent, sound, touch, space and time, all remain back in the void.

Burning Searing Oxygen

Emotions, that conceptual link between awareness based feedback loops and knowledge of experiences did not come back immediately, if only to say that there was one binding sensory flood of continuity: anger laced despair. When the conscious mind re-appeared sufficiently to respond to its awareness of circumstance, the first thing I noticed was the burning of oxygen in my lungs - fed by tubes from the respirator machine, controlled by computer at the bedside.

Next was the burning in my neck, where the tubes were routed into a stoma - not through my mouth or nose - rather than the second incision crudely sewn two inches higher in the tracheal zone. An EMT had to slice open my throat for respiration, and through one set of vocal chord nerves the scalpel went, an emergent surgery on the floor in the dark of night. Only later, at the ER/OR was the stoma incised, the vertically sliced tracheal chasm zig-zaggedly sewn. The nerves never healed, and so my voice is soft but often fails, worn out as the day progresses. One set of muscles doing the work of two, but often not sufficient for anything at all.

Over time the senses came alive, mostly to their former capacity, except for memory. With memory it comes in chunks, as though an array is rebuilding, scanning, but often finding nulls. Short term memory was gone, with the weeks prior to the coma almost entirely missing from recall. Over time, STM Consolidation - the process by which our brains receive sensory data and filter/sort/prioritize aspects and elements and concepts of time from short to medium-term, then assessing and contextualizing and cross-referencing these into long-term memory. That process has improved with specialized medication and meditation, though this is a neuroscience topic for another day.

Hyperalgesic-Nociceptive Reaction Instinct

In the earliest days of awakening, still horizontal in the ICU, as my head would nod-off in a morphine haze (so much pain), the autonomic system would take over, and one or two hands would immediately race to attempt their forever game: trying to tear the hoses out of the stoma in my neck.

Surely, that did not go over well with the ICU staff, and eventually whenever my tired eyes would drift, a nurse would restrain my wrists to prevent the next autonomic attempt - those tubes HURT. Regardless, that type of physiological action was determined to be a neurologically positive sign which indicated that parts of the brain were coming back online for instinctual action (reduce pain immediately, even if doing so unintentionally ends breathing machine hookup).

The Knowledge Reset - via Reinforcement Learning

Of course, I couldn’t speak with the hoses still connected through the port in my neck, and once they were eventually out I still couldn’t speak. Either the brain didn’t remember how to contact the muscles, or the nerves controlling the voice box wouldn’t connect to the muscles - either due to pain or due to half of them being severed.

Eventually I would relearn how to speak, through a long and painful process over months, though it still fails on a near daily basis.

Inquiring with a specialist four years later, even experimental options would not apply, as the severed vocal chords’ nerves were too distant to reconnect end to end. Perhaps one day that will be resolved; until then my voice is soft and sometimes no-op.

Walking, all gone.
Dexterity by hand, also gone.
Balance, certainly gone.

The first time I was able to pull my legs over the side of the bed, while holding onto a nurse, the nanosecond either foot struck the ground, lightning surged upward — through the femur, spiraling along the thoracic spine, climbing into cervical vertebrae, and erupting through the cerebellum and corpus callosum, detonating across the cerebral cortex. There was no thought, no other sensation; existence narrowed to one unbearable truth: PAIN.

Electrical Signaling

In medical research and case studies there is a distinct lack of detail from patient perspectives on the topic of this process: awakening the somatosensory network of the Central Nervous System after a flatlined coma, not a medically induced coma, and not a short term coma. The CNS is an electrical system foremost, followed by chemical messenger pathways, both interwoven in a complexity which science has yet to fully model or simulate.

Part of not being able to walk, or to hold things, to speak, was the sheer inability for my brain to process the electrical signals unmoderated, ungoverned; in short, the signals were shorting out the sensory and processing equipment. Without sufficient memory the simplest actions and abilities are devoid of action.

Healing Processes

Part of the physical healing process was one of intense and ongoing patience and more patience and endless patient patient patience and more of being both concurrently in what seemed to be an endless forever. I was not a patient child; this was my least tuned skill set, but it is now my most etched-in-stone capacity, though everyone surely has their limits.

Sense of smell was deemed the least critical, as determined by whatever engines were managing the recovery process. Light sensitivity never stopped being a problem, to which no doctor has had answers. All of these abilities, so often and so easily taken for granted by so many, they form the foundation - the core of a person’s interactions with their world, and with those senses we define existence, what it means to be alive, what it means to engage with others, and by eventual extrapolation what it means to find and have purpose and meaning and definition and identity.

Referential Integrity

The ability to confirm the integration of data into the whole - not only a unit as its unique entry - but with its reference to which all else maintains interrelated definitions; Referential Integrity is not solely a term from the database engineering world, it is a way to see how the brain shapes the Self, how it infers meaning minute by minute from the individual experience with relationships (comparative, contrasting) to the whole of the experience. Our brains are processing and defining and redefining all of our sensory inputs trillions of times per day, moving memory chunks around according to some grander-than-awareness algorithm which necessitates the conversion of short term events into long term storage for retrieval years or decades later. This fascinating biological computer is the most beautiful and capable equipment which our species has ever come across - and so gods help me if I ever take that for granted in any breath until my last. The void is not going anywhere, it’s there always and forever, that much is knowable in my experience. So then, what purpose is there? The question has no definitive or singular notion to provide an answer; purpose is evolving and changing at all times, until there is nothing left.

Finally then..

So, philosophy of death and meaning and all of that.. in any case, Prose is a site for reflections upon a woven existence, one which has routinely provided awakenings into substantially altered facets of bicameral perceptions. These descriptions may not resonate with many, though this is not a site for mass consumption or awareness, and so that is okay.

In part, this site is an archive for those memories of fleeting years gone by, of present experiences which sooner than realized will forever and perpetually become that passing of time. Memories are a complex game, a puzzle of neurons - firing and transporting their transmitters to waiting receptors, remnants of the Central Nervous System’s programming as it was trained, over time and years - consciously and otherwise.. but that’s a story for another page, at another time.

[*] Unless there is no Free Will, in which case Causal Determinism implies that our consciousness correlates sentience as the role of an observer more so than one of pre-defined actional executor.