Alex’s AE Journey

AE and Learning

by Alex (AE Survivor)

What am I to say? If anything, I want readers to know how AE affects yet another person, writing a blog and (I’m crossing my fingers on this) what a parent, friend, colleague, or, most of all, those in the throes of the illness can take away and use in the battle against AE. Encephalitis has caused tremendous regression in my life, but I’ve learned some critically important things. I’ll share my most recent and bizarre experience.

To begin, I was lying on the floor, filled with homicidal thoughts. I knew I had to call my trusted deputy and she would not dictate to go to another hospital beside the one where my doctor is. I called. No answer. And I needed help QUICK. Last resort: 9-1-1. They arrived, utter failure on my part to speak up for my needs, and I arrived at a hospital where the doctor stripped away, cold-turkey, a medication I couldn’t just strip away: clonazepam. Time for another downward spiral…

It started with another patient’s stutter. “T-t-t…” she would start out stuttering and then say her name. But she was capable of normal speech! I was getting paranoid thinking she was a member of the staff. They were trying to confuse me… and… they were trying to kill me! Narcotics in my medications, food, water! I soon realized EVERY single individual was out to get me. Everyone. All reading my mind and I was fighting them away. Frightened. But there’s a more potent word: fear. BUT MY FEAR WAS REASONABLE! YES!

Then the twist in the plot: They weren’t trying to confuse or kill me. What? I am sitting here writing coherently? I’m definitely going to get to that, but first I want to explain the obvious. The patient stuttering: she did not actually have a stutter. The nurses on the psychiatric unit: baffled and incompetent. Why? They couldn’t treat me.  Autoimmune encephalitis may have similar symptoms as those with the common mental disorders (and this not news if you are aware of the illness), but the cause is different. Over the years, nearly all of the nurses and doctors I’ve seen had no understanding of the disorder. Of over 15 psychiatrists, there was probably only one who might have understood autoimmune encephalitis.

If I could plead those diagnosed with AE to do just two things, the first would be to request to go to a hospital. Almost every hospital has a neuropsychiatrist or neurologist that is willing to talk to your primary care physician. Second, when stuck at a location where no one understands or listens, find someone to advocate for you. Doctors and nurses are far more likely to listen to people outside of psychiatric hospitals because they’re not cRaZyyy.  Also, you might have to be your own advocate.

Speaking of how integral my primary care physician (won’t put his name in this paper) was and is, the use of saline, which was used to heal my kidneys due to the thought the psychiatric hospital was inserting narcotics into the food and water, as well as the IVIG felt as if I was taking the most epic brain bath. Everything became clear.

And that psychiatric hospital!

If you happen to be in a psychiatric hospital without anyone who understands your disorder, do not panic hardcore as I did. My panic could have caused death. It was that severe. And speaking of panic, make sure you’re communicating effectively. Request that you receive your regular medications sternly, but not chaotically. If they refuse, request to be transferred to a hospital where your doctor can be involved in the treatment. If that doesn’t work, call people who adequately understand your illness so they can advocate for you. You don’t want and need to be in this battle alone.

Thank you Alex for sharing your journey!