INCUBUS | noun | in·cu·bus | one that oppresses or burdens like a nightmare
“Did you really do that?” (Replace that with any number of aggressive actions that range from throwing trays of food at the wall, running down hospital corridors trying to escape or mimicking every conversation in the room.) These are the questions I get asked most often from those who have watched the Discovery Channel documentary episode about my battle with anti-NMDA. I want so badly to laugh and say that the events featured on the show were dramatized by show producers for sensationalism and ratings. But the reality is that the show was a pretty accurate depiction of the incubus that invaded my life and those around me during that time.
Although unarguably intense, the show was really only able to just scratch the surface of the enigma that is anti-NMDA. What the interviews and reenactments don’t tell you is that you don’t just wake up one day from this insane nightmare and suddenly everything is all better. The story doesn’t wrap up neatly after 30 minutes, fading away to the sound of laughter as the credits begin to roll. Happily ever after.
It is true that bits and pieces come back over time but recovery can take years and, in my experience, you never really stop checking for monsters under the bed. Truth be told, I’m not confident that I will ever know the full depths of what really happened during that time. It took a long time before my family was able to even begin filling in the missing pieces from the months I was incapacitated and it took much, much longer for me to comprehend and then accept what I had learned.
My episode from the series, Diagnose Me, was called “Possessed by Demons,” an eerie reference to the theory that suggests what was often historically considered witchcraft or demonic possession could actually be a manifestation of this disease before anyone knew it existed. Although the collective knowledge of anti-NMDA has grown significantly since it’s official discovery in 2007, the illness continues to baffle the medical community and haunt its victims, who are unjustly imprisoned – by their own minds – and often by the establishments that do not yet recognize the face of this particular monster.
In my case, “Possessed by Demons” also resonates as the only way I know how to describe the insidious way my mind and body were overcome by violent episodes, angry outbursts and unrecognizable emotions. As the illness progressed during the first few weeks in the hospital, my afflictions went from minor disorientation to vivid hallucinations to outright psychosis. Something was definitely taking over me, although it took nearly two weeks, four misdiagnoses, and countless tests and procedures before my demon was identified as anti-NMDA receptor encephalitis.
If hospitals provided report cards like kindergarten, there were many days mine would have read, “Does not play well with others.” Once considered sweet and kind-hearted (I hope), I had become a living nightmare, lashing out violently at nurses, doctors and family members. I screamed obscene profanities, pounded on the walls, kicked and shoved my caregivers and took every chance I could to make an escape (often wearing nothing but a look of crazed determination, much to the chagrin of my subsequently recovered self). In other less than flattering moments, I locked myself in the bathroom, yelling obnoxiously or sobbing uncontrollably until the nurses could get the door unlocked. I began tearing out my own IVs as casually and calmly as plucking a random piece of fuzz off my arm. I rarely slept, often only an hour or two a night and even then, uneasily, as I suffered from uncontrollable tremors and sporadic muscle convulsions. For several weeks I had no appetite, fueled solely on an unhealthy diet of hallucinations and conspiracy theories.
Eventually my family was told that I would need around-the-clock “sitters” to keep me from injuring myself or others. It soon became apparent that these sitters were actually hospital security guards posted as sentinels just inside my door twenty-four/seven. Their mere presence often irritated me, as so many things both large and small did, and they became a frequent victim of my verbal (and occasional physical) abuse.
But, anti-NMDA is nothing if not a constant exercise in juxtaposition. If I was ready to attack one minute, I was ready to succumb to defeat the next. Collapsing listlessly to slump on the floor, stare despondently at nothing, and beg the doctors and my family to just let me die. A short time later the cycle started all over with laughter and silliness, as if someone had abruptly pushed a reset button.
Text message sent to friend while hospitalized, demonstrating the chaos sweeping through my inflicted brain:
Get me out of here!!! Now
I don’t know what is going on here but you need to just me out of here I am in
Whatever you need to doc
This is my nightmare!!!
They r restraining me
I need you to get me out of heter
I’m in room 934 UCH
They are making me crazy and you need to help me please?
I want to be a vampire?
Trust please and they are forcing ing me to take meds that I don’t need
I do want be there
Later on, after the fog and cobwebs had begun to lift and I was well into recovery, I learned that I had been put in restraints at times when things got particularly out of control. Vague memories of those moments and the frustration that accompanied them, have come to mind unwillingly in the years since then, but few truths continue to break my heart more than knowing I had to be restrained from hurting those closest to me.
Imagine being told these horrible tales about a person you don’t recognize, during a time you don’t remember, only to realize that the villain in the story is actually you. Imagine wondering who this person was- controlling your mind and your body- doing unspeakable things to those you love. How do you tell yourself that these are only actions caused by disease and not really a dark part of you hidden away from the rest of the world?… Like monsters under the bed.