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Autoimmune Encephalitis- We shall overcome

July 5, 2017 | Tabitha Andrews Orth

July 4, 2013
I sat in a plastic chair with my arms wrapped around my knees curled up with my toes pointed to the floor. Non-responsive. Catatonia. I sat from 6am-1am on July 5 until I was moved from that plastic chair.
Local ER had no room on their Psych ward so I had been transferred to a private psych hospital without a neurological evaluation. (this ‘hospital’ is a chain under investigation for abuse and admitting people inappropriately putting them in lock up and committing them with the purpose of draining all their insurance coverage).
Cat scan normal. High WBC count. Tachicardia.
B12 deficiency. First time psychosis. No history of mental illness. Put on a 72 psych hold, once transferred commitment papers were begun and a court date was to be set.
I experienced and witnessed unspeakable human cruelty during my 16 days of incarceration. I remember the bugs swarming in the sink, the mold on the shower curtain, the fog finger-smudged mirror and counter in the bathroom, the rust stained germ infested toilet bowl. The dirty linoleum floors. There were no windows. It was not a ‘hospital’, there was no medical staff or assistance….it was not a prison or jail….it was something ‘other’ than that. I was in very big trouble. I was too sick to help myself although I tried. The screams from the 4 other patients locked away in this section with me seemed to reverberate against the walls echoing from the acoustics in the chamber of a section we were in. The cleaning crew was not permitted here as the patients were too psychotic. Today, people with AE are being held or committed unjustly and without medical care. They rot. My husband ‘liberated me’. He hired an attorney. He got me medical care…it would be a year and a half before I received my diagnosis.
Independence Day has a different meaning for me now as I spent that day in 2013 where Liberty did not dwell.

2017: I live a ‘free’ life and know what it is to NOT live a free life. I reflect on this each Independence Day since 2013.

I am in recovery from Autoimmune Encephalitis today and although I have some brain injury, it is nothing to how badly I was once impaired. Miraculously, with everything against me, I lived! Lack of knowledge about AE was the reason I was almost sent to a state institution as committed. IAES is dedicated to spreading awareness and preventing stories like mine. Join me in celebrating our Freedom today and walk with me in a ‘Cyber 4th of July Parade’ for AE in the knowledge that: “We Shall overcome.”
My medical records reflect that on the late evening of July 4-2013 I starting singing “We Shall Overcome” in a clear and loudly projected voice. (click the link to hear my plea)

Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY  provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society  cannot provide medical advice.

International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization founded in 2016 by Tabitha Andrews Orth, Gene Desotell and Anji Hogan-Fesler. Tax ID# 81-3752344. Donations raised directly supports research, patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.

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