Measles is coming back. My sister Marcie isn’t

At the end of February 1960, my healthy, precocious sister Marcie was halfway through the fourth grade when she contracted measles from a classmate who lived down the street. Their cases were among the nearly 500,000 that year, before the measles vaccination program began in the U.S. in 1963. For every 1,000 people who get measles, one develops measles encephalitis, which can cause permanent brain damage. Marcie was one.

Although I think about Marcie every day, the recent rise in measles cases in the U.S. and around the world has me thinking about her even more.

I was only 6 years old at the time, but the gravity of my sister’s illness wasn’t lost on me (and today the very mention of the word measles resonates to my core). Marcie had been sick in bed with a high fever for a couple of days. House calls were common then, but something was different this time when the doctor arrived. Our house was quiet. Library quiet. As the pediatrician told my parents that my sister needed to be hospitalized, my fearless, happy-go-lucky mother fainted in front of us.

The quiet was broken when an ambulance roared up our street. I felt embarrassed by its shrieking siren and lights and EMTs invading our sleepy street, drawing attention — not the good kind — to our house.

I watched from my bedroom doorway as the EMTs brought their equipment upstairs to Marcie’s room. One EMT tossed his unfinished cigarette into our toilet and gave me a complicit wink. The rules I had been taught and the family unit I knew were, without warning, flushed down the toilet like the cigarette.

The ambulance whisked Marcie away to the local hospital. Doctors offered no hope. My sister had slipped into a coma, and the prognosis was grim.

My mother stayed by my sister’s side around the clock. I went to school and was sent each day from one sympathetic neighbor to another until my father, who had to work, came to get me. He didn’t talk to me about my sister, or anything for that matter, which made our house feel cold and dark.

Marcie was a gifted artist. A piano prodigy, she taught me how to play the easy part of a duet. She taught me black magic coloring and how to make “matzoh ball soup” with water, orange crayon peel, and bathroom tissue balls. She was my first snowman-building partner and, though I couldn’t keep up with her, she was the last person who would have made me feel unimportant. Measles ruined all that.

Because hospital rules at the time were not child-friendly, I wasn’t allowed to see my sister.

Then a miracle occurred. After five weeks, Marcie emerged from the coma. With assistance, she was brought to the hospital window so we could see each other. I stood in the vast parking lot and looked up. Marcie was smiling and waving with great ferocity. When I replay that scene in my mind, the wild-looking wave personified her fight to have survived and the strength she would need to endure life’s battlefield.

My sister came home around Easter. At first, everything seemed normal. My mother was home. Marcie went back to school. But her behavior and personality had changed. She struggled to learn new concepts in subjects she had previously mastered. She could still read music, but had lost the ability to play with dynamics and expression and made many mistakes. At home, she was irritable and defiant and fought over minutiae, which escalated into shouting matches, door slamming, and a lot of crying.

One night, Marcie dared our babysitter to leave or else she would. Not backing down, my sister, clad in pajamas and robe, fled into the freezing night. She didn’t go far. But scenes like that became a pattern. My parents didn’t have a network of support. They relied on doctors, most of whom hadn’t seen a measles case like my sister’s. When they turned to school officials for guidance, they were offered compassion and little else.

Marcie’s case was complicated in relatively uncomplicated times. New York state schools tested achievement by Regents or non-Regents placement. My sister needed something in between, but there were no accommodations for her disability, which allowed her to fall through the cracks.

While walking home from school one day, Marcie fell. At least that’s what I was told. In reality, she had suffered a grand mal seizure (a tonic-clonic seizure). It was the first of many.

Measles encephalitis left my sister physically and psychologically impaired. She struggled with critical-thinking skills, mental illness, and anosognosia, a neuropsychiatric condition in which someone lacks awareness of their own disability. Lifelong medications mostly controlled Marcie’s seizures. But no medication could repair the damage caused by the disease.

During the fickle preteen and teenage years, Marcie’s cognitive and personality changes swelled. She was the poster child for victims of bullying long before the phenomenon grew media wings.

Routine appointments to an eerie place called Letchworth Village, a now-abandoned mental hospital, were recommended for brainwave tests to help monitor and manage her condition. It was during those sessions that I realized how brave my sister was. As the technician prepared the electroencephalogram with conductive paste electrodes, Marcie sat there with aplomb even though she looked like a Frankenstein experiment.

Following these EEG sessions, my sister would say that part of her brain felt like it was missing, and she’d asked me to check her scalp for holes. I looked and assured her there were none. Sometimes she’d react with an inappropriate, uncontrollable laugh. She had become a survivor, but at what cost to her future?

Thanks to a safe and effective vaccine, measles is now a preventable disease. It was declared eliminated in the U.S. in 2000, and measles encephalitis with it. That means it is no longer constantly present in our country. But in just the first four months of 2024, reported measles cases were more than double the number of cases in all of 2023. Why? Fewer parents are vaccinating their children against measles, their decision most often prompted by social media disinformation. They should have met my sister.

Marcie died in August 2020 from complications related to Covid-19. We had talked about the new vaccine. She was looking forward to getting it, but it came out four months too late for her.

I wonder what Marcie’s life — and mine — would have been like if the measles vaccine had been available in 1960 and she never contracted the virus. Would she have become a mother, a musician, a scientist? I will never know. But I channel Marcie’s fiery spirit every time I write about her, or about measles, with the hope that I can persuade parents to vaccinate their children against this insidious disease.

Emmi S. Herman is a children’s book author and freelance writer. She lives in New York.