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.