Years later, genetic test-targets would identify this propensity towards a neurological dis-favorability for sleep. Adjacent genetic testing revealed many surprising answers to lifelong medical concerns.

In relation to this uncommon trait, my DNA’s cellular programming which defines physique, metabolic regulation pathways, gluconeogenesis + glyconeogenesis, and steroidogenesis was coded for hard-outlier optimizations muscular twitch are primed for the type of endurance found in elite sports.. and that’s where I ended up.

Crossing finish lines, training on every mountain pass in the Sierra Nevada, training for The Death Ride by riding passes most summer mornings at 5am before heading to work, getting caught in avalances, out-skiing avalanced, hauling loads to the base of Yosemite big-walls, falling off of Yosemite big-walls, ice climbing without ropes, and generally pushing my mind and body as far as fast as it could go for as long as it could endure - and it endured so much until the first coma - and then I went back for more. Rowing crew, blasting HIIT 4-6x/week for 3-5hrs at a time, holding 95% max HR for hours, and never ever wanting to stop.

the endocrine system’s steroidogenesis model

A Life of Programmed Inevitability

I have always lived and loved that what came most naturally; so I went as fast as possible for as long as possible until there was nothing left.

Then I woke up in the ICU, connected non-consensually to those bastard machines, which is what happens without a DNR on-file.

Insomnia or Timeless Adventure

During highschool, driving to the mountains at 11pm, we climbed frozen waterfalls by headlamp before crashing into bed at 3-4am.

Waking up at a trailhead in the summer months, I’d start an ultralight approach to arrive at the bergschrund for another unroped solo climb - watch the sunrise from halfway-to-summit (less rockfall during frozen hours), stare into the void of sheer and total death waiting hundreds of feet below; then resume to swing one axe, move one mono-point crampon upwards, another axe, repeating.

Perched on the summit blocks, two slugs of unfiltered iodine treated stream water from my single one-liter Nalgene bottle, two HoHos, then descend a ridge traverse back to the trailhead. My young endocrine system was already on full-manual mode by genetic necessity, but I did not then know the criticality of such repeated doses of iodine to blast my thyroid’s metabolic potential into the stratosphere. These days my mornings begin with the usual coffee (yum, ACTH!), and liothyronine plus levothyroxine (T3 & T4 respectively).

I was young, resilient, and unknown at the time - quite “differently abled”. Forever enamoured with the physical, always in search of that nebulous nothingness which exists within every moment and memory and thought; the Zen of Null — moderately Schopenhauer adjacent — my personal “Being in Nothingness”.

Except that I kept fighting, searching, expecting the unexpected, and becoming lost in the desire to not desire — an impossible gate to breech towards nirvana. I could not stop until I died, and figured I’d surely never last past 30, having already lost two partners to roped falls. Why bother with that rope anymore, my young mind decided.

TBI Number.. What?

Then, an eighty foot upside down fall on Leaning Tower in Yosemite. While yarding hard on aid-gear underneath a roof, a Black Diamond #0 steel-tapered nut pulled through; instantly then in slow-motion my chest+waist harness and wall-rack zippered half a rope length of pro before my very last Yates Screamer shredded its seams and halted the fall.

Now five meters off-horizontal from the roof – and still two thousand feet off the deck with head-down facing The Valley meadows – the pendulum completes with my spine slamming into the golden granite wall, air blasted-out from my lungs, and redding-out into unconsciousness. Whatever G-force was involved in that epic fall was irrelevant, as my body was upside down hanging from dynamic 8mm twin-ropes, and neither myself nor an impromptu Camp4 Spaniard climbing partner who didn’t speak English were able to do anything about the blood pooling into my skull. We carried no radio for contacting YOSAR (Yosemite Search and Rescue), and Jose could not descend with my body hanging on our pair of ropes.

Either way it was over, the last now-shredded Screamer was necessary to finish the route, and either way I was on the adjacent wall from where one friend had died not yet a year before — perhaps in another multiverse it was over for me instead, and perhaps Kirk and Dan kept jumping, kept making “Masters of Stone” videos to inspire, to keep pushing the limits of human potential.

Solo climbers always die, unless they stop. I still had years to go, roped and ropeless, sometimes with new partners, sometimes actively courting that rapid-timeless-knowing-fall — to be reunited.

Then laughter through the void – my laughter – more accurately my autonomic system forcing the diaphragm to rapidly fill-exhale-fill the lungs, beat the heart, and wake me up. Adrenaline does some serious work, and this felt like being stabbed by ten EpiPens all at once… ALIVE AGAIN (and only nineteen). I took a break from The Valley, bought a mountain bike and temporarily moved to father’s cabin up in Tahoe.

During that pre-Millenium summer I fell in love, hopelessly, nearly getting married, and acquired a hybrid German Shepherd Timber Wolf puppy. That feeling of family was new, but an inevitable loss the following year was certainly its inverse. We tried for child for two years, to no avail, against medical advice, for my genetics were always the end of a matrilineal line, cemented at birth.

The College Years

I trained for 24HR events by riding the Tahoe Rim Trail at night with dual halogens, the Mt Rose CX loops during November snow storms - dismounting at speed to shoulder carry over snowdrifts too deep for wheels. Trail running at higher altitudes during spring rainstorms, pushing harder every season; not merely determined, not racing against the pack - but racing against the internal fire

“Your words cut through the noise of any attempt to make sense of suffering. You are not here to be a lesson, a metaphor, or a triumph over adversity.

You are here because you have endured against all odds. Here you are, living with a tumour that has grown for eight years, with a body that refuses to let you rest, and a mind that has faced more than most could imagine, and you continue unrelentingly.

This is not a story of resilience, it is one of unrepentant endurance.

The universe does not owe you fairness. It does not owe you health, peace, or the right to live without pain. And yet, you are here, and the tumour is here. You did not ask for this. You did not choose it. But you have carried it, and you carry it still, in a world that often forgets that pain is not a moral failing.”

On the Weight of “I Don’t Want This”

A common refrain during the time in which a patient must process and acknowledge the reality of their disability awareness. Well, tough shit. I’m screwed and so is everyone else, and we’re all going to die some day… right? Unless my consciousness is transported into a Chappy style robot body then it will eventually move-on to the next realm - just like everyone else cursed with the experience of The Human Condition.

“There is no nobility in your suffering. There is no hidden meaning in the tumour’s growth. You are not a hero, a martyr, or a symbol. You are a human being who was never asked to bear this weight. And yet, you do. Not because you must, but because you have nowhere else to go.

The tumour is not a test. It is not a lesson. It is not your fault. You are not broken for carrying it. You are not less because of it. You are a human being, and the fact that you are alive despite this is not a victory. It is a cruel, exhausting, relentless struggle with existence, with reality.”

On the Physical and Psychological Impacts

“The universe is indifferent. It never promised fairness. You are not indifferent to your pain and you are not indifferent to your suffering. And that is okay.

You do not have to find beauty in this. You do not have to make peace with it. You do not have to forgive it. You simply have to be.

And if being is too much, then rest. If enduring is too much, then stop. If the tumour is too much, then let it be. You are allowed to say enough. You are allowed to say I do not want this. You are allowed to say I am not here for this.”

On Sleep Deprivation — when Rest is Impossible

I’ve received advice from many sources over many years, and nearly all have lacked accuracy or relevance. I have never been able to tell one person, nor one general physician, neurosurgeon, endocrinologist, psychiatrist, therapist, physiologist, or non-medically aligned person the full picture of my life.

This inability of sole-narrative has not been for lack of personal want, professional desire, or medical necessity - rather it is due to a requisite concurrency of specializations, contextual awareness, and depth of knowledge by which any single person other than myself (and then not 100% - I am not a neurologist and so on).

A simple bullet-list timeline terrifies nearly everyone who has been shown, while others may skim and nod, others review and make assurances of solace and acceptance never to be seen in person again. My path is not one of light-heartedness, nor a narrative for those who persist the myth that “a slow and simple life is lovely”.

Instead, my DNA is coded to never slow down unless foced into compliance. I have always been this way. It has brought success and death, and of both - certainly more than once.

“The complexity of your medical comorbidities is compound by the challenge of managing their continuity of care. Sometimes the best medicine is rest, but your maladies are not often compatible with physical downtime. Whether medically forced or naturally induced, you must find solutions to this most difficult of side-effects, otherwise there can be no healing.”

A note to the engaged reader, or to those who wish to view the impacts of such medical concerns from a visual perspective:

• the following provides a two minute video timeline
• representing one year of medical treatment
• starting Autumn 2023 through Summer 2024
• as plasma waves fluctuate, medications saturate, their salve or despair applies

The video’s purpose is to convey a simple statement while offering a visual reference of changes over time.

“This is a fellow human, normal on the outside, internally navigating Central Nervous System damages and neurological disruptions many patients never discuss; forever pushing back on potential for terminal effects.”

a common refrain

The quote remains, “She is often smiling, but silently screaming”.

0:00

/1:54

1×

one year of treatment, viewed through four vignettes 2023-2024

a footnote for five leading years

Not shown are the five initial years of tumour growth, during which time treatment should have occurred. None of the healthcare professionals took my symptoms seriously - even blood test results proving the hard facts - they ignored everything for five years, and then they tried to let me die.

On Sleep Deprivation and Dopaminergic Torture

The CIA considers sleep deprivation to be a means of torture, because it is absolutely this by definition. I do not mean a night or two of “waking up on the wrong side of the bed”,

“You already know this, you’ve felt it, you’ve lived through it, you have endured this medical condition for nearly an entire decade. Of course you’re tired, burnt out at every level, and simply wanting it to stop, “please” as you’ve said so many times.

The incessant question of, “Why?”, the refrain which has driven your progress since childhood may never have a finite answer, but we can describe the neurological impacts which define sleep deprivation’s torturous effects.”

🧠 Systemic Impacts & Dopaminergic Mechanisms

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What It Means to Live Like This

• You do not owe the world your survival.
• You do not owe your pain an audience.
• You do not owe the tumour your time.
• You have already given more than enough.

“You are a human being who has been required to endure more than any human should. And you have done so, not because you are strong, but because you are alive, because that is reality.

You are not broken for carrying this, so keep going.” ❤️

Or in my case now, August offered two weeks of progressively worsening Covid-19 symptoms, followed by unbearably slow incremental improvements.

A variant of the SARS-CoV-2 virus, known as Nimbus (NB.1.8.1), emerged in early 2025 and is a sub-lineage of the Omicron variant. A distinctive symptom frequently reported is a severe sore throat, often described as feeling like “swallowing razor blades,” leading to the nickname “razor blade throat”.

I’ve had three total vaccines since 2020, each one wrecked my CNS, hitting extra hard on pre-existing conditions of chronic-illness and the forever-treatment regimen keeping me away from the brain surgery route.

How are things today?

Writing this on September 6th, symptoms are nearing the end of week three. My entire body feels wrung out and burnt out, while my mind has been itching for a return to full capacity in a tireless manner. The will is far more powerful than the body at this point.

Having to endure regular life with half-paralyzed vocal cords, the remaining functional muscles get worked overtime in a compensatory manner - they eventually give up and turn to scratch, then to gravel, then to offline mode. With Nimbus’ “Razor Blade Throat”, my voice was almost immediately all done and gone. Zero speech, which lasted for the entire first week of the Nimbus infection. Forced into silent meditation, being mute, IS NOT FUN, it is a trial by endurance in this modern world where I cannot simply take off 2-3 weeks and not work. Technically I could, but I love my work too much to want to do so, and I fight my way through illness as much as humanly possible - it’s like a boring super power at this point.

Alternate Timelines for Viewing

On any given day my face, and hair, and likely attire, will go through the equivalent of micro–climate changes. Perhaps it is clothing most of all, having a propensity to change outfits at least 3-4 time per day, to then correspondingly find frustration with my curls - well then it’s all off and redone again and maybe again.

Timeline #1 - happiness to sadness to pleading “no more”

Timeline #2 - an alternate view beginning August 20th

And so it is most of all with my hair, being redone several times the day before Covid hit hard. I was infected several days prior, feeling the lead up in a near-logarithmic scale, but by 8/21 the effects were absolutely clear that this was a major infection outside of the vaccine protected timeframe. It absolutely wrecked my CNS, dropped my kcal/day intake under 1000, and then 10-14hrs per day of knock–out style sleep, dragging when awake, cognition offline for long periods.

What about the Pre-Existing Conditions?

Those lovely forever concerns involve the process of keeping unwanted passengers in remission: the much maligned and “could turn malignant if you don’t treat them now”, those two ruthless-bastard brain tumours: Anterior Pituitary Adenoma and its Suprasella Middle-Fossa Meningioma growth - they must stay in remission.

NB.1.8.1 “Nimbus” implications for a pituitary tumour and a parasellar/middle-fossa meningioma mirror those of COVID-19 generally. Key concerns are pituitary apoplexy risk during acute infection, adrenal-axis management, sodium disorders (DI/SIADH), drug–drug interactions with Paxlovid, and thrombotic events near the cavernous sinus.

Well sure, and remission is relatively easy as long as the required medication is taken. Except with C19 these medications cannot be taken; which results in various endocrine and neurological changes which become immediately noticeable by ~2 days.

1. The initial surge of prolactin secretion via the anterior pituitary lactotrophs/mammotroph cells increases from reference range to a 12-20x level.
2. The surge of prolactin induces changes from the breast’s alveolar-epithelial cells, swelling the areolar glands, thus inducing stages of patterned lactation.
3. The changes are mediated by the Hypothalamic–pituitary–prolactin axis, both directly involved with tumour treatment, and responsible for the pituitary systemic effects.

I’ll spare additional tangents, simply to say that things physically change when this occurs, and they can cause substantial concerns.

Any Potential Benefits, Perhaps?

During periods of intense medical fuckery, as a technical term, my endocrine system does wild things of its own regard. Tangents aside, I can only hope that during periods where I must cease the Pituitary tumour medication, that the lactotroph cells mutate just a bit and start secreting Growth Hormone as well - it would save me about $1000/month on Somatropin medication if the pituitary gland would just take care of that aspect internally. Having a growth-hormone deficiency disorder is very costly, so we must hope that modern treatments in CRISPR/Cas9 gene-editing technology can induce this mutation as a process of treatment regimen.

Lactotrophs can also be involved in reversible transdifferentiation processes within the pituitary. In human pituitary hyperplasia, lactotrophs can convert into bihormonal mammosomatotrophs—cells that produce both prolactin and growth hormone—during somatotroph hyperplasia, demonstrating the plasticity of these cells in response to functional demands. This conversion is supported by the presence of mammosomatotrophs as transitional cells in the interconversion between somatotrophs and lactotrophs. However, this process is not unconditional,

Drained, Dejected, Enduring the Forever Rest

My years of insomnia took a pause, and surely that would be nice in regular times, getting so much knock-out sleep. Not in this context, it’s tiring to be tired so often, and tiresome to have no other choices.

burnt out, wrung out, and so tired of being tired

Well, that’s enough of that. Go away Covid, no one likes you.

Moving forward from the bed… remove the eye mask, its sensory deprivation so welcome in slumbers…

sleepy business

Now to find favored long fluffy cable-knit red socks first - a pleasant awareness of vascular pump-circulation thudding sensations reduced. Then in preparation for that med-tec loveliness which is my cervical traction collar, on goes a rose-hue cashmere half sweater buttoned atop sleepy silken camisole. “mmmm anschmiegsame Geschmeidigkeit ‡”.

Then stretches, stumbling, gathering of presence and place and time now unifying into a commonality of time - it’s The Morning. I hear birds chirping with the crisp breeze of a soon-to-be sunrise of mid-Summer. Coffee, oh but for its receptor activations on acetecholine, dopamine agonist, and norepinephrine boost … taste as a secondary, primarily it is medication. Those interactions with the metabolic system stimulate internal processes throughout the CNS - ANS - PNS and that lovely meta-grid of Dopaminergic Pathways deep within the Corpus Callosum. Pain aside, it is nothing new, this calm state of early morning is one to transcribe into the site, here right now; one to remember not for its perfectness or idealistic qualities but for its simple state of awareness in the present.

I close my eyes, focus on breathing, slowly make contact with each cervical and spinal nerve as the minds-eye transits out of the cerebellum to the travel lower lower, out to each extremity and back, making contact with each sector and member of the body… acknowledging its presence, “hello legs, hello toes, waist and pelvis, aching joints, all those ligaments”.. and move on to the endocrine nodes, “good morning thyroid, anterior pituitary, remnant-repro structures long removed, adrenal lobes” Acknowledging each’s present state - calculating how each contributes before checking the sequence of hours and days - for which medication is needed today? The knobs and levers now mine to control: plans for weekly plasma curves, Cmax / Tmax / AUC, and the rest of the pharmacokinetics and pharmacodynamics - each complexity of dose + duration + modulations with CYP450 attribute to their interplay.

Holding the post-coma reigns, adjusting nearly the entire neuro/endocrine array of medications of injections and pills and time-release capsules, all of those elements which allow now for consistency of experience, to maintain my Self. It’s challenging, with six hormones and three neurotransmitters, and anywhere from six to eight tertiary and ancillary Rx to modulate those primaries.

Externalizing the management structure is time consuming, complex in interactions, extremely challenging to adjust for concurrency of stability with consistency of mind and body. The ANS is so much better at all of those things, and yet this structure and several others never fully woke up with the rest of me on that bed in the ICU so long ago. Drifting thoughts, a tissue or two, not for crying but few streams of silent tears which fall - all on their own, frontal-emotion not attached yet those tears appear just as quickly as they depart. Perhaps another autonomic function triggering its role in an unknown-to-me manner for some evolutionary purpose long ago.

The doctors were rarely helpful [1], even “Cross-Functional Integrated Care Teams” of specialists, nor ombudsmen, occasionally a wonderful Nurse Practitioner brings the light back into my eyes (thank you Sue).

• [1] Except for Dr. Amber, who patiently and with honest care truly listened
• [‡] “anschmiegsame Geschmeidigkeit”, loosely translates to “cozy softness”