Numbers, numbers, numbers – we all have them. It’s how we organize and make sense of what’s happened to us. It is how we put our experiences into boxes so that they don’t spill over into every aspect of our lives.
For me it was 1,000 mg of steroids, 7 Plasmapheresis infusions, 6 EEG’s, 5 MRIs, 4 CT scans, 1 PET scan, 1 botched lumbar puncture, 1 traumatizing bedside central line insertion, and countless fascinated residents, fellows, and physicians who had no idea what was happening to me right in front of them. All those numbers were packed into a 31-day hospital stay split between 2 hospitals in the largest medical center in the world. And those numbers lead me here, to you, to the Autoimmune Encephalitis community.
During February 2019, I began to experience subtle signs and had an overwhelming feeling that something was “off” with myself. I had trouble spelling words, remembering passwords and even had trouble speaking with patients I saw as a genetic counselor. I began experiencing extreme anxiety, panic attacks, and other neurological symptoms. I would eventually go to the ER after my doctor discovered a right sided facial droop, fearing that I was having a stroke, I was admitted to the first of 2 hospitals.
During my lengthy stay on the stroke recovery unit (the youngest person by several decades), the doctors would be puzzled by my progressing symptoms and my eventual catatonic state. I lost the ability to speak, read, and write. After being placed on high-dose steroids, I became violent and turned into what the nurses and my family would call the “she-hulk” and throw objects, kick walls, and wrestle with hospital staff as they put restraints on my ankles and wrists and bound me to my hospital bed for days at a time. During this time, I would become a prisoner of my own mind. I endured auditory and visual hallucinations of my worst nightmares and lived in multiple alternate realities, many of which included me dying. I would return to reality for only brief periods of lucid time – although I could not speak or recognize my family, the terror and confusion were respite to what was happening inside of my mind.
Eventually, the first facility would diagnose me with seronegative autoimmune encephalitis – but did not implement the well established treatment for AE – and I was sent home from the first hospital on a steroid taper with no attempt at plasmapheresis exchange or IVIG. The doctors were frustrated with me and with what little I was able to comprehend. They had given up on me regaining any semblance of normal cognitive function. They told my husband and family that I’d go home and I’d either “get better, or I wouldn’t.”
I didn’t. In fact, I was actively hallucinating as they discharged me from my first hospital and then spent an interim week drifting in and out of reality – barely able to communicate, having dystonic movements and absence seizures. I was clearly getting worse. I was fortunate enough to have personal connections to another hospital due to my job as a genetic counselor in the medical center. I was rushed in for a same day appointment with a leading neurologist in Autoimmune Encephalitis and admitted directly from her clinic to my second hospital.
After receiving the first of seven plasmapheresis exchange treatments, it was like a fog was lifted. Blobs of strange people began to take the shape of my husband, my mom, my friends and family. I found my voice, although Broca’s aphasia made it hard to communicate, I started making progress in speech and occupational therapy. Everyday it felt like fireworks were going off in my brain – the zing of new neural connections being made – I would tell my therapists “I can feel it in my brain” – every sense heightened, every new word remembered became a cause for celebration, every step around the ward was a sign of my physical strength returning. Who would have guessed the exhilaration of holding a crayon in my hand could bring, or the relief of hearing my name and knowing it was mine? The doctors were impressed and optimistic about my recovery, but no one could predict how much cognitive function I would regain. I was told I would likely never be the same person I was before. And in so many ways that is true.
Even after my second discharge, I had months of speech therapy, occupational therapy, and cognitive rehabilitation. I lost most of my independence – depending on everyone around me to drive me everywhere, make follow-up appointments, pay my bills because reading words on a screen was akin to reading hieroglyphics. I felt, at my worst, like a burden to those around me, weighed down by guilt and shame of the upheaval I had caused in our lives. I felt lost in my professional life, unsure of who I was or what I contributed to a society where my 19 years of education did not triumph over my brain trauma. I felt alone, because no one had been inside my mind and could understand exactly what I had been through: how harrowing, how terrifying, how humbling, it is to stand on the brink of insanity and be brought back from the darkness of a brain on fire.
No one except this community – reading your experiences, your struggles, your triumphs – they connect me in a way I never thought I would be able to connect and helped me understand my singular experience is part of a larger community experience. Almost three years later, I have returned to my full-time job as a genetic counselor and help patients navigate an overly-complicated and often frustrating healthcare system that I am all too familiar with. My compassion and empathy for those struggling with a diagnosis, finding resources, and advocating for themselves abounds. And I am grateful to be here, to be able to return to my career, to recognize my husband’s face, to be alive, to be typing these words. I know that when I lay awake at night (because, hello, insomnia!) thinking of how everything has changed for me since AE – there is light, there is hope, there is resilience, there is grit, there is strength in me. All it takes is a brain on fire to illuminate it.
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.