NMDA Autoimmune Encephalitis Lived Experience – Macy’s Story

HOW IT STARTED

On July 3, 2020 I began my day with a 10-mile run in the Northeast Georgia neighborhood surrounding my childhood home. I followed with a smoothie, took my labrador retriever for a walk, responded to work emails, FaceTimed my partner across the pond, and celebrated an early Independence Day with an intimate group of family and friends. Near 11PM that same evening, I collapsed into a seizure. I don’t remember anything after that.

I was healthy. I ran, ate well, imbibed in moderation, and didn’t smoke. And, for all intents and purposes, I was happy. Sure, COVID-19 had uprooted my life in NYC and thwarted my 2020 marathon plans and prevented my British partner from visiting me due to closed US borders. But I’d made the personal and very satisfying decision to leave Manhattan with my dog in order to ride-out the pandemic with my parents, two of my favorite people, in Georgia. I had an apartment to go back to in the city, a dream job that allowed me to work remotely, and a supportive circle around me. To keep me balanced as the world continued to unravel, I had running.

So why, during the subsequent week following July 3, did I spiral into a series of bizarre, psychotic fits fueled by vivid delusions? Why was I hallucinating that I was being watched by the people on television or that the radio was talking to me? Why did I sit my parents down and read them incriminating passages about my past from my adult journals, break-up with my partner via FaceTime, try to physically harm myself, and attempt to run away from home? And most alarming of all – why don’t I remember any of it?

Seven days into my catastrophic decline, I was scheduled to undergo magnetic resonance imaging (MRI). While being prepped, I suffered my second seizure. Everyone around me jumped into action. I was rushed to the nearby medical center where I belligerently and repeatedly announced to the ER that I had COVID and everyone was going to catch it — until I underwent a forced psychiatric evaluation.

Although I’d been fairly pleasant to the medical staff up to this point, I was apparently nasty to the kind psychiatrist, answering her many basic questions with the attitude of a know-it-all teenager. According to my mom, who watched with confusion and compassion as I tumbled out of control, it wasn’t long after this that the psychiatrist said, “It’s not psychiatric, it’s something else.” Shortly thereafter, I endured a third and final grand mal seizure.

With a cocktail of epilepsy and anti-anxiety medications in my system, I was then admitted into Northeast Georgia Medical Center in Gainesville, Georgia. An assertive and attentive team of neurologists led by Dr. Shaena Blevins began treating me for a disorder – NMDA Autoimmune Encephalitis – an illness first recognized in 2007.

THE SCIENCE BEHIND IT ALL

Dr. Blevins says she’s only witnessed a handful of patients with my form of encephalitis, and one patient that she observed from afar passed away due to misdiagnosis.  According to Dr. Blevins, “once you’ve seen it you just know.”

In order to confirm my diagnosis, I endured a litany of tests (the medical records from my stay in the hospital span more than 500 pages). Spinal fluid harvested via a lumbar puncture ultimately confirmed Dr. Blevins’ gut instinct. Her proactive response to treatment, which wouldn’t have harmed me even if I hadn’t developed encephalitis, likely expedited my recovery.

My speech and cognitive therapist, Rebecca Sabo, sums it up best. She says, “Autoimmune encephalitis is unique and rare in that the body’s immune system perceives the brain as something that needs to be attacked. The result is that the brain starts to become inflamed. This can cause significant physical, cognitive, and mental changes.”

Dr. Blevins notes that afflicted patients are often young women and usually present psychiatric symptoms, causing NMDA Autoimmune Encephalitis to sometimes be misclassified as a psychiatric or anxiety issue. Although my illness is becoming more widely recognized, experts haven’t settled on a cohesive idea as to what kind of exposures can trigger this type of brain inflammation. Some cases have been linked to West Nile virus, herpes, or benign ovarian tumors. I suffered none of these contributing factors.

After a week of steroid treatment administered in the hospital, the neurology team and my parents came to the mutual agreement that I could be cared for at home due to the rising number of coronavirus cases in the hospital. The medical team staff who showered me with love and care – even when I was hallucinating, frantic, and constantly trying to disconnect from my monitors and IVs — cautioned my parents that I would likely get worse before I got better. They were right.

Back home, I’d rotate between manic madwoman and an unresponsive, vegitative state. I required constant care, attention, and medication. My weight dropped to 87 pounds and I became anemic. My parents would read me books, stream music and films, show me pictures, cook my favorite meals, anything to reawaken the “Macy” they knew before this nightmare. Just when they were at their breaking points and considering hiring a full-time nurse, I started to rally.

I’d lost nearly two months of my life that I’ll never remember (and probably don’t want to), but I wasn’t interested in sacrificing any more time. Rooted in determination, my recovery began.

REHABILITATION AND BEYOND

Intravenous immune globulin (IVIG) treatments, antibodies administered to help me battle the disease, were administered by a home-health nurse. Each individual treatment took a couple of hours each day over the course of four days. Two rounds of IVIG given over a six week period dramatically improved my alertness and energy levels. This was just the beginning of my comeback.

Next, I met Rebecca Sabo, a Speech-Language Pathologist by profession and a cheerleader by nature. In my initial evaluation, Rebecca wrote, “[Macy] communicated in fragmented sentences with poor sentence structure. She was substituting words with non-words (neologisms) or words that sounded similar but were not accurate (paraphasias). [Macy] was unable to understand moderate level messages and conversations and required extra processing time to understand verbal communication.”

Additionally, she cited that my short-term memory and attention skills were impaired.

After standardized testing, I was diagnosed with mild-moderate receptive and expressive aphasia (difficulty understanding and expressing language), requiring four months of aggressive cognitive and speech therapy.

Rebecca became my lifeline. She understood my illness and was able to fill-in my many blanks, both in conversation and in life. Alongside my parents and my partner, she was the rising tide that lifted me, encouraged me, and helped me find my voice again. She tells me “you’re a true example of determination and persistent hard work transforming your life and beating any odds!”

So what kind of odds did I beat? Scientific journals indicate full recovery from NMDA Autoimmune Encephalitis can take anywhere from six months to two years, a process heavily dependent on early diagnosis and treatment.

October following my diagnosis in July, Dr. Blevins cleared me to travel independently (and internationally) to see my partner. By early November I returned to work part-time. In January, I was back to 100 percent, and back to living a full, joyful, and grateful life.

Dr. Blevins says she’d absolutely classify my recovery as miraculous and rapid. She attributes my success to receiving appropriate treatment, being active and healthy, having a world-class rehabilitation team, and having an amazing support system.

MY SUPPORT SYSTEM

My parents dropped everything – work, travel, community responsibilities, family obligations, the list goes on – to care for their 29-year-old invalid daughter. I was often insomniatic and restless, so one of them was always awake to make sure I didn’t harm myself. At one point, I was on ten different medications they were tasked with giving me at various points throughout the day. By September, they were transporting me to three therapy sessions each week. I couldn’t bathe myself, feed myself or express myself. To add insult to injury, I’d often forget their names.

My mom says witnessing my transformation — from where I was before I got sick, to where I was in the thick of it all, to the woman I am now — is incredibly rewarding. My dad still can’t talk about my months of madness without getting emotional. But they protected my dignity with unwavering devotion and poured themselves into my recovery. For that, I will be forever grateful.

Then, there’s Francis. I met this handsome Brit when I was on assignment in London in February of 2020. After one whirlwind and incredibly romantic first date, he put me on a plane back to NYC and promised to see me in my city soon. A couple of weeks later, US borders closed due to COVID-19. An in-person second date was indefinitely delayed, but we became each other’s anchor during the early months of the pandemic speaking for hours everyday via Facetime.

When I fell ill, I’m told that I called Francis and ended the relationship. My mom, knowing I was out of my mind, took control. She also texted Francis and updated him on my rapidly deteriorating neurological condition. She gave him the option of tapping out, but he wanted to stay involved, saying, “I’ve already fallen head-over-heels for her.”

Thus, a connection between the man I’d met once and the woman who has loved me my whole life was cultivated. The two communicated every day about my progress, about life, and about the future. Closed borders prevented Francis from supporting us in person, but he cheered us on from afar. When I recovered to a point where we could Facetime again, mom joined me on calls and helped me find my words. Then, when I was cleared to travel in October, she and my dad watched me walk through TSA St. Lucia where I’d meet Francis for our long-awaited second date.

To my parents, my family, my partner, and my friends who sent cards, calls, videos, flowers and prayers — you are the people who loved me at my worst and loved me into a better version of myself. For that, I will be forever grateful.

THEN, I STARTED RUNNING AGAIN

Before I was fully coherent or in total control of my movements, I begged my doctors and my parents to allow me to start running again. Before I could, I was cleared to row on our basement erg; prior to the pandemic, I was a coach at Row House, a boutique fitness studio in NYC, so I fully appreciate the power of rowing as a low-impact and high-intensity strength training technique. This exercise supported me in maintaining a strong body while I rebuilt my mind. It continues to be my preferred cross-cardio training.

In late September, I was deemed fit to run, but I was still so unaware of my surroundings that my parents had to trail me in a golf cart for quick, one-mile morning jogs around the neighborhood. By November, I was back to running 10 miles each day along the gentle rolling terrain of the North Georgia mountains.

When asked if there’s a connection between neurological recovery and fitness, Dr. Blevins says, “I think the starting point for recovery always impacts both the timeliness and completeness when it comes to the nervous system. It also speaks to the motivation for recovery — to be active and work towards being the best you can be.”

Rebecca agrees. “In my experience, patients that engage in physical and cognitive exercise tend to recover from cognitive changes at a more rapid rate as physical activity increases blood flow to the brain and increases oxygen intake which helps to increase neuroplasticity and cell growth.”

After a year of transformation and recovery led by Dr. Blevins and Rebecca, I’ve added another expert to Team Macy – my running coach, Amanda LaVergne. She guided me through preparation for the 2021 New York City Marathon and continues to be my go-to fitness resource.

When training a client who is overcoming illness, Amanda notes, “You have to shift the strategy because the mind and body are at a different starting line than what may seem ‘normal.’ When creating training for someone starting back, you want to focus on consistency and confidence — training that empowers you where you are rather than creates ways for you to see what you are missing.”

In both 2019 and 2021, I completed the iconic race through the 5 New York City boroughs in less than 4-hours with time to spare. Today, Amanda and I are working with a specific and competitive marathon finish time in mind for the 2022 London Marathon — pressing play on my goal to qualify for the Boston Marathon that was placed on pause when encephalitis knocked me out.

Early in my last training cycle, Amanda told me, “There isn’t a distance or a pace that makes it running. If you run…you are a runner. Having that time daily that you purposefully carve out for yourself will give yourself a home base. A constant. A brain dump. A period of time where you are just you. An outlet. A moment. There is something extremely powerful in a run. It can shift a mood, it can relieve stress, it can be cathartic.”

As I train with a new perspective and appreciation for myself and the world around me, her words echo within me.

WHERE I AM TODAY

I’ve returned to New York City part-time. I recently joined the Condé Nast team, where I’m Director of Homes & Travel Marketing. I play fetch with my lab, Goose, on my lunch break. If this terrible pandemic has given us anything, it’s the gift of being able to work from anywhere. Taking advantage of this, I spend months in London with the man I love; and now that US borders are open, I can finally share The Big Apple with him. I plan short, spontaneous trips across the nation to see my dearest friends. I’m 25-pounds healthier and happier and am taking only one prescription medication. When I’m back south, I play cards with my grandmother, and have deep, thoughtful discussions with my parents over red wine. And wherever I am, I run. I run almost every day. I run to celebrate the strong mind and body that overcame NMDA Autoimmune Encephalitis.

Relapse is real – 12 percent chance real. Although Dr. Blevins told me not to worry about it, there were moments in the not too distant past where the threat of regression paralyzed me. Today, I channel my experience and this lingering fear into living life with greater gratitude, loving others abundantly, and joyfully going into every morning run like those are the last steps I’ll ever be fortunate enough to take. There’s always a light at the end of the tunnel, and sometimes, it’s brighter than the one that was on the other side.