There’s someone in my head, but it’s not me.Pink Floyd, The Lunatic
The mind is a curious and wondrous machine. So many things about the brain are unknown and surely the vastness of its functions and failures are put on full display while under the influence of anti-NMDA. The various ways my brain responded to this attack, processed information under duress, and ultimately healed, continues to amaze me everyday.
Although the psychological symptoms are often what captures the attention of others and forces those plagued by anti-NMDA to seek out medical help, this is very much a neurological disease. The presence of both physical and psychiatric symptoms blur the lines of science, causing added chaos in any attempt to reach a diagnose. One of the most striking and terrifying indications associated with most forms of encephalitis are the hallucinations, which can range from random and dreamlike to violent and egocentric and even creepy.
My hallucinations were certainly intense and varied, but most of them seemed to focus around a general theme of trying to fix whatever was wrong with me, even if I didn’t understand it, and trying to assert control of a situation that was spinning wildly out of hand.
Some of the more benign hallucinations centered around confusion of where I was and why. I repeatedly asked what was wrong with me, a question that even the doctors could not answer in the first several days. Then I would try to identify why I was there, inquiring to anyone who would hear me out, “Was I in a car accident (no), did I just have surgery (not since the kidney transplant), am I having a baby (not unless it was a result of immaculate conception). My doctors and family would answer as best they could and I would act as if I understood… for about five minutes before I would get confused again, forget the entire conversation and we were back at square one… What’s wrong with me? Why am I here? Have I been in a coma? Did I wreck my car?
Other hallucinations centered on a need to make up for the continued loss of control I felt slipping away day by day. The situations my mind created in these instances usually added some sort of super ability that must have provided a small sense of competency that I did not feel in my daily reality. Sometimes my illusions and hallucinations were more appealing than the nightmare that greeted me when conscious.
During those times, I was quite convinced, and would to tell anyone who would listen, that I was God, a seer (i.e. psychic), a vampire, a genius, even Oprah (after all, who has more power than Oprah?)… I would sit there for long periods of time trying out my telekinesis skills and cry out in frustration when they failed.
I suffered from other illusions, too, that were magnified by my personal conspiracy theories and paranoia. My brain was frantically trying to piece together a puzzle that had too many missing pieces. Sometimes I would burst out into song in the middle of a conversation (one particular Bruno Mars song came up more frequently than others for some reason and to this day my family can’t stand to hear it) and sometimes I would move around to music no one else could hear, telling them, “This is the best song ever.” In the next breath I would wave my arms around frantically, trying to “clear the fog” or recite random numbers.
These symptoms are what led to false diagnoses early on that included bipolar disorder, a psychotic break, and stress-induced altered mental status.
Excerpt from notes my Dad took in the hospital:
[This afternoon there was a brief instant of] clarity and Erica and I, again, review everything that’s happened. She keeps waving her hand. “People think I’m crazy,” she says. Then suddenly she says it’s all been going on “….for song loooongg” (into the Bruno Mars song).
“It’s like an ah-hah moment,” she keeps saying, which I find out later is a reference to an article she read in an Oprah Winfrey magazine. A lot of the stuff she is hallucinating about is from television she must have watched just prior to becoming sick. She keeps telling me, “[Her sister] Tessa knows what’s going on” and that Tessa had said that herself when I was out of the room. “In my brain I’ve been pulling myself out of a coma.” She says, “I kept telling you…You will see…You will know.”
“I am a seer,” Erica says, shifting gears. “I can use my brain to tell you what I couldn’t verbally. My brain has been struggling to get there.”
Erica is shaking, she is so excited to tell me. “Push the button…It’s been so long I’ve been doing this. It’s been going on for so long. It makes perfect sense… It’s not about me, it’s about you… It’s a nightmare that has being going on ‘for so lonnnggg…”‘ (Bruno Mars song again).
Somewhere around this time, my Dad pulled one of my doctors aside and asked if I would remember any of this when, and if, I recovered. The doctor solemnly stated that I would most likely not remember much, at least not if I was lucky. A brief pause and then he said, “But unfortunately, you will.”
What neither of them knew at the time was that the psychological symptoms could– and would–get even worse and that they were actually only half the battle.