When My Body Attacked My Brain I Had to Learn How to Talk, Read, Write, and 'Be' Again

When I developed anti-NMDAR encephalitis, I lost several months of my life — but I refused to allow the condition to steal any more.

woman running inside frame
Photo: NYRR

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 dog 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 11 p.m. that same evening, I collapsed into a seizure.

Before this, 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, thwarted my 2020 marathon plans, and prevented my British partner from visiting due to closed U.S. borders. But I'd made the personal and very satisfying decision to leave Manhattan with my pup 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 ran.

So why, starting the Monday after that first seizure on 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?

Still, the most alarming question 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 who was just doing her job, 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 – an episode characterized by loss of consciousness and violent muscle contractions that last for around two minutes, according to the Mayo Clinic. (

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 Shaena Blevins, M.D., began proactively treating me (prior to diagnosis)for a rare disorder: anti-NMDAR encephalitis, an illness that was first identified in 2007. Making the decision to start treating me before confirming the diagnosis likely played a key role in my impressive (and rapid) recovery.

The Science Behind My Condition

Anti-NMDAR encephalitis (aka anti-NMDA receptor encephalitis) is an autoimmune disease wherein the body creates antibodies against the NMDA receptors in the brain, according to the Center of Autoimmune Neurology at the University of Pennsylvania's Perelman School of Medicine. These antibodies disrupt normal brain signaling, can cause brain swelling (encephalitis), and lead to symptoms including (but not limited to) memory deficit, seizures, behavioral problems (e.g. paranoia, hallucinations, aggression), speech disorder, and loss of consciousness.

Anti-NMDAR encephalitis only affects one out of 1.5 million people per year, according to research, and Dr. Blevens has only witnessed a handful of patients with the disease. But "once you've seen it, you just know," she says. Still, in order to confirm my diagnosis, I endured a litany of tests, but it was spinal fluid harvested via a lumbar puncture that ultimately confirmed Dr. Blevins' gut instinct. And, as mentioned above, her proactive approach likely expedited my recovery.

Dr. Blevins notes that afflicted patients are often young women and usually present psychiatric symptoms, causing anti-NMDAR 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 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.

Once back home, I rotated between being a manic madwoman and stuck in an unresponsive, vegetative-like state. I required constant care, attention, and medication. My weight dropped to 87 pounds, and I became anemic (which is common for patients with my particular illness). I'd forgotten the names and faces of the most important people in my world. 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, I kicked off recovery.

Rehabilitation and Beyond

Intravenous immune globulin (IVIG) treatments — antibodies administered to help me battle the disease — were administered by a home-health nurse who specializes in IVIG. Each individual treatment took a couple of hours per day, over the course of four days. Two rounds of IVIGgiven 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. And as expected, 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 (with whom I got back together after the inexplicable July 3 break up), Rebecca was the rising tide that lifted me, encouraged me, and helped me find my voice again. She tells me, now over a year post-recovery, "you're a true example of determination and persistent hard work transforming your life and beating any odds!"

I was curious, what kind of odds did I beat? Scientific journals indicate full recovery from anti-NMDAR encephalitis can take anywhere from six months to two years — a process heavily dependent on early diagnosis and treatment.

October following my diagnosis (which was 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 to living a full, joyful, and grateful life.

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

Then, I Started Running Again

Six weeks after my diagnosis, 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, however, I had to be cleared to row on our basement erg — something that I had quite a bit of experience doing given I was a coach at Row House, a boutique fitness studio in NYC, prior to the pandemic. This low-impact and high-intensity strength training exercise supported me in maintaining a strong body while I rebuilt my mind. It continues to be my go-to for cross-cardio training. (

Three months after first exhibiting symptoms, 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, 1-mile morning jogs around the neighborhood as a safety precaution.By November 2020, I was back to running 10 miles at a time (my usual daily distance before getting sick) along the gently rolling terrain of the North Georgia mountains.

When asked if there's a connection between neurological recovery and fitness, Dr. Blevins more or less told me, "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."

And 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 New York City Marathon this past November 2021 and is helping me prepare for the 2022 London Marathon scheduled for October.

In 2019 (before my diagnosis), I completed the iconic race through the five New York City boroughs in 3-hours and 36-minutes, even though I was just shooting for a sub-4-hour finish. Today, Amanda and I are working with a specific and competitive marathon finish time in mind, pressing play on my goal to qualify for the Boston Marathon that was placed on pause when encephalitis knocked me out. But just because my goals were once sidelined because of encephalitis, doesn't mean I'm any less a runner today — something that Amanda reminded me of early in my last training cycle and that I carry through with me today. After all, in her words, "there isn't a distance or a pace that makes it running. If you run, you are a runner."

Before I got sick, I set out on daily runs and occasional races with specific goals in mind. I was competitive and hyper-focused. Today, I run with a new perspective and appreciation for myself and the world around me. I've learned that not every trek has to shatter personal records. Running has become cathartic and reflective — almost spiritual. Running through recovery, I've come to the refreshing conclusion that sometimes we're just intended to put one foot in front of the other and take it all in. (See also: How I Outran Paralysis to Continue Fundraising for My Son's Illness)

Where I Am Today

I've returned to NYC full time and recently snagged my dream job as a marketing director for a major magazine company. If this terrible pandemic has given me anything, it's the gift of being able to work from anywhere. Taking advantage of this, I spent the summer of 2021 in London with the man I love and will do the same this year. 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 — simply to help me fight insomnia. I go on long walks with my dog during lunch breaks, 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 anti-NMDAR encephalitis.

Relapse is real — a 12 percent chance kind of real, according to my doctors. Although my support squad tells me not to worry about it, I'll admit that there were moments in the not-too-distant past when the threat of regression nonsensically 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.

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