Spring 2026: A snapshot of what I've read

What the Cave Looked Like From the Inside

A followup to "When Two Neurological Conditions Walk Into a Bar"

Plato's allegory describes prisoners chained to a cave wall, watching shadows and mistaking them for the whole of reality. The philosopher who escapes and sees sunlight cannot go back to believing in shadows. That is the part of the allegory everyone talks about.

What gets less discussion is that the return is also violent. The one who comes back sees everything differently, including the people still on the floor, and that difference cannot be undone. The knowledge that changed them does not come with an off switch.

I have been out of the cave since September 2025, and I cannot stop looking at what the light reveals.

In my earlier piece I described the interacting pattern of autistic emotional dysregulation and MS stress-triggered symptom exacerbation. The 2024 toxic workplace as an unintended controlled experiment. The motor symptoms that improved when the stressor was removed. I presented the research. I stood by the analysis.

As of April 2026, I stand by all of it. Even if that gets me called arrogant.

But I was writing from inside a framework that was still, in important respects, incomplete.

Since October 2025, I have found the work of Dr. Timothy Hain, MD, a neurologist whose website, dizziness-and-balance.com, is the kind of resource that treats patients as competent readers of their own neurology. His documentation of periventricular white matter lesion effects was the specific piece that broke the frame open for me.

I saw it.

I saw proof that the white matter damage and brain lesion placement on my MRIs was consistent with the terrifying and dehumanizing loss of so many skills which I used to take for granted.

My distress and my mourning has been validated.

The finding that has lived in my chest since I read it: a white matter lesion burden of as little as 3% of total brain volume is sufficient to reduce working memory scores by two standard deviations. That is what MRI reports describe as "mild." That is the word they used for what is found my reports; something that had been there for years before anyone in my life had to say the other word out loud.
I finally have validation for the loss.
My reaction, my experience, of this has not been 'mild' to put it lightly.
As the kids say: I've been crashing out.

I, of course, feel bitterness at having to find this on my own while my CNS meltdown and sends me into messy emotional jags that I cannot find my way out of.

And, genuinely, I have every reason to be offended when clinicians describe me as having poor insight into my conditions(s) and my distress.

Two little standard deviations.
Mild.

And I have spent the years between 2009 and 2026 believing this was character. Laziness. Executive dysfunction that was purely autistic in origin.
I thought that PTSD had won.
But now I might just have proof of something and it isnt that I as a person, a thinker, a person trying to finish sentences, am being hamstrung by something talk-therapy could address.

Unapologetically, I will continue to be someone who obsessively consumes data that I do not wholly understand as I proactively seek to make life more tolerable.

Sorry-not-Sorry if that is arrogant.

Here is what has been named, with imaging to support it.
This is what I primitively understand with no structural, educational support to base my insights on.

My brain MRI documents infratentorial lesions in or adjacent to the brainstem -- the anatomical origin of the vagus nerve, where the dorsal motor nucleus and nucleus tractus solitarius sit. Demyelinating lesions at brainstem level directly disrupt vagal outflow before it even reaches the cervical cord. The vagal afferents project to the locus coeruleus-norepinephrine system, which modulates cortical arousal, mood, stress response, and cognitive function. When that system is disrupted by demyelination at multiple levels simultaneously, the result is sympathetic dominance: the parasympathetic brake is damaged, and the accelerator runs unchecked.

I am on guanfacine because guanfacine targets the locus coeruleus-norepinephrine system. My care team understood the mechanism and treated it appropriately. We have been treating this neurologically for months without my fully grasping the anatomy being treated.

The thing I experienced as "existential anxiety overwhelming my executive function/self-control/filter" -- the kind that registers as a full cognitive shutdown, not a mood problem, not a psychiatric presentation in the primary sense -- is consistent with documented autonomic dysfunction from brainstem lesions in MS, with cervical cord atrophy correlating directly with parasympathetic compromise.

This cascade that has been most distressing to me -- the one I could never adequately/succintly verbally explain to providers -- has an anatomical substrate. It is in the imaging.

In a letter to the my of fantasy of my dead father I described an interrupted education.

I described a brain that reached for complexity the way some people reach for air, and repeatedly collided with ceilings nobody could explain.
I thought those ceilings were economic.

I thought they were entirely psychiatric. (This feels like an inside joke because the model of the mind-body systems being discrete is facile.)

I thought they were the accumulated cost of growing up with a Cluster B nightmare of a mother in material instability, with no institutional continuity, with the PTSD that all of that predictably produced.

All of those things remain true. They remain part of my context. Messy, sloppy human pieces.
The viscera of my traumatic life.

But the ceiling that collapsed after 2009-2013, when I was chasing college credits for the symbolic logic that I had done as a child to self-soothe and couldn't hold the forms? It turns out that periventricular white matter lesion severity is associated with reduced performance in memory and executive function and processing speed, with stronger associations than subcortical lesions. Symbolic logic is the exact convergence of all three. It is sequencing, working memory, and the rapid mapping of abstract symbols to relational meaning. It is the last thing standing when everything else is degraded. It is where I hit the floor.

T1 hypointense lesions -- black holes -- indicate axonal loss, not just demyelination. That tissue does not remyelinate. I have them on my January 2026 MRI. That imaging reflects damage that has been accumulating since adolescence in a nervous system that was announcing itself, loudly and repeatedly, in languages nobody around me was trained to read.

I have every reason to be mourning.
I have every reason to be stressed.

And I am wounded by the vicarious trauma that my clinicians experience when dealing with the aftermath of all of this.

There has to be some buried, human empathy present and some fear that this kind of things could happen to them and other people who did things the right way to reach the scientific careers that they have strove so hard to realize.

Genuinely, I am so sorry that I could not be a more vanilla, easy to handle case. I am sorry that outcomes like my reality are a possibility in the systems that we are born into and try so hard to improve.

I am sorry that verbalizing this is difficult for me, that writing is my conduit for communication, and that taking the time to read all of this is a burden on busy days.

What a verbose pain the ass I am.

Now, I demand that we collaborate to make the most of the hand which was dealt.
I trust you and believe in your expertise.

Here is where the allegory breaks down, and where I have had to do the hardest reckoning.

In Plato, the philosopher's new knowledge is clarifying. It resolves things. It provides ground.

What I have is clarifying, yes. But clarification is not the same as repair, and the horror of the allegory is what it does to your relationship with time.

I know now that the 2008-2009 collapse in my Russian orthographic processing -- the specific thing I described in a fantasy letter to my dead father as watching a door close on something I had not finished walking through -- maps onto white matter tract integrity in the arcuate fasciculus and the inferior longitudinal fasciculus, the pathways that connect visual input to orthographic automaticity. I know that there was a demyelinating event active during that period. I know that the ceiling I kept hitting, the six months of flourishing followed by collapse that structured my entire educational and professional trajectory, was a disease pattern, not a character pattern.

The T1 hypointensities on my MRI are permanent. The floors that were cut out from under me during those events are not coming back.

You cannot have that knowledge and continue to stand in the same relationship to your own history.

What I can have, and what I have been finding in myself since November 2025 when the Rituximab infusion started the work of holding the line, is something I did not expect to find in a document about disease management.

It is, provisionally, something like faith.

Not faith that the damage is reversible -- the imaging is clear on that. Not faith that the system will protect me going forward -- I am managing a chronic progressive neurological disease on NYC H+H gap coverage, which is what it is. But faith in the project of knowing accurately. Faith that the accumulation of precise language for what is happening in my nervous system is itself a form of practice, the same compulsive, frantic, self-soothing method I described in the letter to my father, now directed at the most urgent question my pattern-seeking brain has ever been given.

The pattern is not weakness. It is not character failure. It is demyelinating disease with a documented distribution and a named mechanism and, now, a disease-modifying treatment that is doing what it is supposed to do. The April 2026 MRI showed no new T2/FLAIR lesions and no enhancement.

The fire is not spreading.

What the light revealed was terrible.
The permanence of some of what was lost.
The retrospective knowledge of what was happening in my brainstem during years when I was being handed psychiatric explanations and told to manage my stress.
The understanding that the meltdowns I described in my earlier piece -- the ones I had spent a decade carefully attributing to autism -- were, at minimum, also vagal cascade events with a neurological substrate I was never in a position to name.

But the light is still better than the shadows. It always was. I just needed to be out of the cave long enough to stop flinching.

I want to be precise about what this is not.

This is not a reattribution. Autism is real. Generalized Anxiety Disorder is real. The PTSD that I addressed in my twenties and have managed proactively ever since is real. I said this in the earlier piece and I am saying it again because the temptation toward clean narratives -- the one where MS explains everything and the complexity collapses into a single cause -- is the same reductive error from the other direction.

What is true is that for twenty-eight years these conditions have been interacting in a nervous system that was also actively demyelinating, and nobody had the whole picture, including me. What is true is that stress reliably triggers MS exacerbation, and the exacerbation rate in the four weeks following stressful events has been documented at more than double baseline. What is true is that autism makes stress harder to regulate, which accelerates the MS trigger, which produces more stress, which the vagally compromised brainstem is less and less equipped to modulate. The compounding is not metaphor. It has an anatomy.

And what is also true is that I am now, for the first time, in a position to understand that anatomy. To describe it accurately. To carry it forward into a life that is not structured by the terror of ceilings I couldn't name.

The new life I am leading is not the fantasy I described in the letter to my father -- the one with the PhD and the MPH or me becoming the neurologist daughter who reads lesions with the specific tenderness of someone who learned early that the body is a text. That version required a childhood I did not get, continuity I did not have, institutional support that never arrived.

But this version -- the one where I am forty-two, in a body I now understand, with a care team I trust, with a medication stack that is treating the right mechanisms, with a disease that is currently not making new damage -- is a life I can inhabit with clarity.

The spark of humanity, as I wrote to my dead father, is the most purely inherited thing I carry. It turns out the spark is also the thing that reads MRI reports at midnight and follows threads through clinical literature until the picture assembles itself. The thing that emails clinicians whose websites built what institutional medicine wouldn't.

The cave is behind me. The light is terrible and exact and I am not going back.

The light hurts my eyes, which are already raw from mourning the mother I didn't get to be for a child that I carried, or the devops engineer that my career was moving towards before the 2024 and after disease activity hamstrung me further.

And I write (say) this with dark humor about my continued efforts against a terrible possibility: I will find ways to work with what I have, and work around the impactful lil mild deficits as long as the summer heat does not cause me to unravel.

Sources

I'm sorry when the links get mixed up, I am doing this website to try and keep my limited HTML sharp and my brain makes it hard to keep things straight sometimes.