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2020

Autoimmune
Encephalitis

A Journey from Darkness to Light · Barcelona, December 2020

Chapter I

A Tuesday.

It started on a Tuesday. I had just finished a surreal job interview, Programme Manager role, and my brain was already in pieces. I held it together long enough to get to the emergency room.

One hand I could no longer use. It was seized by myoclonic contractions. My tongue too, flagellated by reflexes so violent my voice had become something frightening, even to me.

Hospital de la Santa Creu i Sant Pau · urgencias

TUESDAY
myoclonia
tongue
hand
voice
myoclonic reflexes
photophobia
auditory hallucinations
two weeks prior

something wrong

For two weeks before the ER I had been hearing voices, threats, sounds that weren't there. I hadn't told anyone. When the neurologists finally asked whether I had experienced anything psychiatric, the relief of being able to say yes was almost physical.

wait. In the corridor an immigrant man bonded with a Catalan woman over the delays. I ignored them both. Rudely, perhaps. I had nothing left for other people's frustration. urgent MRI box A nurse approached my bay almost gleefully: "Finally, someone who actually has something. Nobody ever has anything. Just covid and headaches. But this one has something. We're keeping you."

It was the worst bedside manner I have ever encountered. It was also the moment I understood this was serious.
corridor meningitis / viral · bacterial / meningoencephalitis · differential pending · lumbar puncture required lumbar? wait Chapter II — The Emergency Room
Admitted
FACILITY: H. Sant Pau, Barcelona
DIAGNOSIS: Viral meningoencephalitis
CSF: Pleocytosis / elevated protein
MRI: T2 FLAIR hyperintensity, left temporal
EEG: Diffuse slowing, no epileptiform activity
TREATMENT: Acyclovir IV · IVIG · anticonvulsants
LUMBAR PUNCTURE: 3rd attempt — 2 anesthesiologists
Days admitted: 21+
3rd
try

Two neurologists tried first. They failed. Then two small, quiet anesthesiologists arrived and solved it on the first attempt. I have thought about those two women many times since. They came in, fixed what needed fixing, and left without ceremony.

MRI BRAIN — FLAIR
T2 WEIGHTED
LEFT TEMPORAL LOBE
HYPERINTENSITY

EEG: DIFFUSE SLOWING
NO EPILEPTIFORM
ACTIVITY NOTED

mesial temporal involvement — HSV suspected

They spoke carefully. That is how you know it is serious: when doctors stop being casual, when every word is chosen, when they look at each other before they look at you.

face

Chapter III — The Ward

A face emerging
from the fog.

After the first shower in the ward, all the steam covered the large mirror. I picked up the small tube hairdryer and aimed it roughly where my face should be. And slowly, my face appeared, coming out of the indefiniteness.

It was a quick, symbolic moment. Something that helped me process what was happening and find myself, somewhere, somehow.

I had been wearing an oversized hospital gown and trousers, too big, with a completely alienated expression. I looked like a psychiatric patient from the 1950s. I felt like one too.

Chapter IV — Deliriums and Visions

the other
side.
A double reality, divided by an imaginary curtain. On one side: darkness, souls drifting unconscious. On the other: the light of birth. Crossing from dark to light is being born. The newborn connected to the mother by threads of a single colour. Death is the return. trains Every sound in the ward became something cosmically vast in my dreams. The oxygen compressor, the aspirator, the hum of the corridor at 3am: all of it transformed into something enormous, planetary, beyond scale. I ate extra ears I found growing around my face. Trains that never stopped at stations. visions no anchor "Muchas gracias caballero" — the man in the next bed, after I pressed his alarm for him. It was the clearest sentence I heard in four days.

Spotify playlist · San Pau

Hallelujah.

Franco Battiato — La cura
Fabrizio De André — Anime salve
Leonard Cohen — Hallelujah (original)
Jeff Buckley — Hallelujah
and silence, when silence was enough

The only moment of release was the shower, despite being almost a torment in itself.

I loved to come out of the bathroom, soaked in humidity, and sit on the small visitor's couch with music in my ears. It was a small dose of energy. The right arm was useless, the balance was wrong, the walls came up to meet me. But the music held.

Buckley's version was the soundtrack of those days. Magnificent. The word feels inadequate and also exact.

It goes like this, the fourth, the fifth

The minor fall, the major lift

The baffled King composing Hallelujah

broken cognitive fatigue · word retrieval
balance impairment · right arm
sensory hyperactivity · no anchor
Judith the student nurse · genuinely happy
Jazna · night shift · immunoglobulins
Sixto watching TV · already better
the woman calling "aigua" at 3am
lost still?

Chapter V — Recovery

Coming
back.

Recovery is not a line. It is a fog that thins unevenly. Some mornings sharp, some weeks unreachable. You stop waiting to feel normal and start building something from what is left.

I am told I will never fully know what those first three days were. Not foggy memory: no memory. A clean cut. Before, and after, nothing between.

What is this

Autoimmune
Encephalitis

Encephalitis is inflammation of the brain. In autoimmune encephalitis, the immune system — which normally defends the body against infection — mistakenly attacks the brain itself, targeting proteins on the surface of neurons. The result is swelling, disrupted signalling, and a cascade of neurological and psychiatric symptoms that can appear within days and are frequently mistaken for psychosis, epilepsy, or a drug reaction.

The limbic system — the seat of memory, emotion, and behaviour — is often most affected. This is why the first signs are so often psychiatric: paranoia, hallucinations, personality change. The brain is on fire. It does not look like a brain on fire.

Common symptoms

Memory loss · psychiatric symptoms · seizures · movement disorders · reduced consciousness · speech difficulties · autonomic instability. Onset can be acute, over days, or subacute over weeks.

Diagnosis

MRI, EEG, lumbar puncture with CSF analysis, and antibody panels. Anti-NMDA receptor encephalitis is the most common autoimmune subtype. HSV encephalitis — the viral form — is the most common cause overall and requires urgent antiviral treatment.

Treatment

Antivirals (acyclovir) for HSV. Immunotherapy — steroids, intravenous immunoglobulin (IVIG), plasmapheresis — for autoimmune forms. Recovery varies widely. Cognitive sequelae can persist for months or years.

Chapter VI · Madrid · ongoing

Still
here.

December 2020

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