I understood myself only after I destroyed myself. And only in the process of fixing myself, did I know who I really was.Sade Andria Zabala
Three years ago, in the year 2013, I “misplaced” approximately 175 days of my life. I suppose my body decided that all of my life’s energy during that time was better spent on battling the monsters in my mind than retaining cognitive memory. My recollection of that time period disappears (quite conveniently) nearly the exact same time I was rushed to the emergency room — almost to the hour, in fact. It vanished rather abruptly, like a power outage; all of a sudden there was just blackness. And, in stark contrast, when conscious awareness finally returned, it was more akin to the dawning of a new day in winter; it came back slowly, a little at a time and never to its full strength. It’s difficult to say for certain exactly how much time I lost, but those months, days, hours remain mostly secured behind a closed door that, try as I might, I cannot seem to unlock. Maybe that is for the best — that’s what the doctors kept telling my family anyway. And unless you’ve suffered a similar fate, you have no idea how true that is.
As I began to recover and become more aware, the story of those misplaced months slowly began to unfold from a different perspective: that of my family and friends. I began to recall little scraps of time but couldn’t trust my own memory so I never knew if those pieces were real memories of actual occurrences, memories of hallucinations (which seemed just as real to me) or merely feverish dreams I’d had somewhere along the way. I spent a lot of time “interviewing” my family for more details. I often felt as if I weren’t hearing the whole story and even questioned the truth of some of the things I heard. It was all just so surreal.
The truth is, I don’t blame them for holding some things back at first. After all, they had spent months protecting me from the world, protecting the world from me, and protecting me from myself.
But eventually more and more of the story began to take shape and the information I craved eventually came in chapters rather than sentences. At some point I was allowed to read the extensive journal my dad had kept, day in and day out, during my hospitalization. I listened to voicemails left on my mother’s phone. I found my own notes and audio recordings in my phone and on my laptop.I poured over medical records, doctor’s notes and lab tests. It was a gigantic puzzle of information with no box cover image to go by in piecing it together. I was determined to make it all fit; it seemed to be the only way I’d be able to understand what had happened and why. I needed each and every small individual piece in order to see the big picture. I cannot explain this compulsion- maybe it was a result of the disease, maybe I felt I was owed the details of my own life, maybe I was just curious. I can only say that I yearned to know the impostor that had taken over the core of my being.
It wasn’t easy!
Many of the pieces were unfamiliar, damaged on the edges. Many were devoid of imagery, merely varying shades of black and gray. And as the full picture began to emerge, it actually became increasingly more difficult to view. Each new hard-earned connection, whether a memory fragment, an answered question, or a new insight — came with an extra dash of salt on the already festering wound…Because these missing pieces were just not pretty and they were certainly not things you want to hear of yourself. Indignity, humiliation, sadness and insecurity feasted heavily upon these newfound fragments that contained so many dark undertones: fits of rage, verbal and physical aggression, loss of inhibition and bodily function, and a complete and total personality alteration. It was a heavy load to bare on an already fragile state of mind. I feared I would lose myself once again, before I really had the chance to know who I’d become.
These are the parts of the disease we, as a community of survivors, struggle to talk about – the turmoil that continues to assault our well-being long after the monster rests. When the storm settles and consciousness returns and we are suddenly left to sort through the pieces of a life that is no longer recognizable. Where the losses go beyond personal identity and inanimate possessions to physical and mental abilities.
But it is from there, at rock bottom, where we begin to rebuild.
On the road of recovery, while we sort through fact versus fiction and attempt to determine what is actually worth the effort it takes to remember – and more importantly, what is not, we also must re-learn the very basic building blocks of life. From cooking and daily hygiene to walking and driving; to reading and comprehending and speaking. We re-learn social cues and logic. We rediscover our own tastes and preferences and hobbies.
Even on the darkest days we fight to be ourselves once again. And as we do, we learn that a few missing pieces do not destroy the image we have of ourselves. And that although the end result may not mirror the cookie-cutter version on the box cover, it is still beautiful and unique and important…Perhaps we have a better idea of the bigger picture than we ever imagined.
My 3 year old daughter was diagnosed with Anti-NMDAR Encephalitis exactly a year ago. Those were the worst 4 months of our lives. I was in hospital with her every single day and night, at her bedside. I feel I went through it with her and now after a few months of her being well and then 1 relapse, have I started to feel like I can breathe again. She’s too young to remember most of what she went through but sometimes asks me if I can remember feeding her mashed up food or when she had to wear nappies in the hospital like a baby. She plays with her toys and puts cannulas in them.
I also feel a lot of that time has been “blacked out” in my memory because of the pain and I have an overwhelming sense of wanting to interview nurses, doctors and family on what they saw from their perspective because somehow I feel I was in a daze that whole time… it doesn’t feel real.
What a horrible horrible thing to have to go through. Horrible for the patients and horrible for the families that have to see a loved one be “tortured” in such a way.
My best wishes to anyone affected by this disease.
do you mind sharing what treatments did you do for the road to recovery, I am now in NC, flew from LA to here to help my 21 year old son, he is and has been for 5 years the way you describe yourself …. thank you
Hi Claris! I ended up being treated with immunosuppressants, IVIG, plasmapheresis, and Rituximab over several months. Then speech, occupational and physical therapy in rehab. I think these are in general the most effective combo of treatments. Do you have a doctor familiar with anti-NMDA or autoimmune encephalitis? Please let me know if there is anything else I can help with! Take care.
I see my daughter in your words. She still has not made it through the journal, still too raw and painful. I admire all of the survivors for the strength and positivity to move forward.
It definitely takes time, Liz. And everyone at a different pace. I’m sure there are some who would rather never know too. That’s ok, too. Best to you and your daughter!?
You know I love all your stuff Erica, including this piece. Kudos and how timely, just as the movie Brain on Fire has been screened at TIFF for the first time. Lost time and memories for those afflicted with anti-NMDA are an important aspect of anti-NMDA.
I was looking at the end to see how I could tweet your piece into twitterland, but perhaps once i submit the comment this option will appear.