July 4, 2021 |by Tabitha Andrews Orth, President and Founder of IAES

It was 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. Catatonic. I was not aware of the date, as I sat unmoving holding that position from 6am on July 4th until 1 a.m. on July 5th. The white plastic chair I occupied was similar to those cheap stacking patio chairs you see for five dollars at local discount stores. It was one of three positioned in front of what appeared to be a ‘guard station’. It wasn’t a hospital setting. I didn’t know the United States had places like this where human beings were treated with such disdain; malfunctioning rejects of human society. My medical chart referred to me as an ‘inmate patient’. In the early hours of July 5th, someone came and escorted me from that white plastic chair to my bed.

My husband had taken me to the local ER on July 3rd. I was 55 years-old and in full-blown first-time out of the blue psychosis. Just a few weeks before symptoms began to appear, I was a stable, responsible and highly respected woman among my family, friends and community. Since there was no room on the hospital’s Psychiatric ward, I had been transferred to a private psychiatric hospital without a neurological work-up and without my husband being notified of where I had been sent. (We later learned that this ‘hospital’ was a private hospital chain under investigation for abuse and admitting people inappropriately for psych hold lock up streamlining them for commitment with the intention of draining all their insurance coverage).

The ER attending had run a brain CAT scan which showed mild frontal lobe atrophy. He asked if I had ever had an accident that could account for this finding. I never had. He commented that this is what he expects to see in a woman of her mid-eighties. A blood panel showed I had a high white blood cell (WBC) count. I was experiencing tachycardia. I had a B12 deficiency they felt accounted for my memory loss. With no history of mental illness, I was placed on the first of several consecutive psych holds, this one being a 72-hour psych hold, followed by several 5 day holds. Once transferred, the facility holding me drew up commitment papers and arranged a court date to be set to determine if I should be legally committed to the state hospital for a minimum of six months.

I experienced and witnessed unspeakable human cruelty during my 16 days of incarceration there. This was a place where human beings were sent when deemed to be of no value to society. 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. As I tried to parse out what kind of place this was, I ruled out a prison or jail. It was something ‘other’ than that. I was in very big trouble. That was unmistakably clear to me. 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 in the section I was being held in as the patients were deemed to be too dangerous.

Today, people with Autoimmune Encephalitis are still being held or committed unjustly without having received a full medical work-up. Although it doesn’t happen today as often as it has in recent history, Autoimmune Encephalitis is recognized more frequently than it was when I became ill in 2013.  It is still under recognized and misdiagnosed as a psychiatric condition in the USA and around the world.   

My husband ‘liberated me’. He hired an attorney. He got me the medical attention I needed. It would be over a year before I was accurately diagnosed.

Independence Day has a different meaning for me today than it did prior to that fateful 4th of July in 2013 where I spent time locked away where liberty did not dwell. I now know what it is like to have my freedom taken from me. I appreciate the gift of Independence personally and reflect on the blessing of being able to lead an independent life. I hold my freedom dear now.

Present day

I live a ‘free’ life and know what it is to NOT live a free life. Each 4th of July that has passed since that horrifying year, Independence Day is a day when I reflect on the gift of being free.

I am in recovery from Autoimmune Encephalitis. Although I have some brain injury, it is nothing compared to how badly impaired I was. Miraculously, with everything against me, I lived! Lack of knowledge about AE was the reason I was almost sent to a state institution and committed.

I founded IAES because I was determined to change the course of people’s outcomes. I felt and feel dedicated to preventing more stories like mine from taking place. Spreading awareness, strong advocacy and increasing research is the path forward. 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 4th 2013 I started singing “We Shall Overcome” in a clear and amplified voice. I wish you all a joyful Independence Day. Let Freedom ring.

Your generous Donations allow IAES to continue our important work and save lives! 

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.