The measles robbed the landscape of our wonder years, broke in like a burglar and stole a normal sibling relationship right from under our feet.

At the end of February 1960, my sister, a precocious, healthy child was halfway through the fourth grade in Rockland County when she contracted measles from one of her classmates who lived right down the street from us. His case was among the approximately 999 uncomplicated cases reported prior to the 1963 measles vaccination program in the U.S. For every 1,000 cases of measles, one would develop into a life-long disability. My sister’s case was that one. On March 1, she was diagnosed with measles encephalitis.

I was only six years old, but the gravity of her illness wasn’t lost on me (and today, the very mention of the word measles resonates into the deepest part of my being). My sister had been sick in bed with a high fever for a couple of days when the doctor was called to our home. As the pediatrician told my parents that she needed to be hospitalized, my happy-go-lucky, fearless mother fainted right before my eyes. I felt invisible to the swirl of confusion around me and lost inside my own home. When the ambulance arrived, I watched quietly. One of the EMS workers tossed his unfinished cigarette into our modern suburban toilet and gave me a complicit wink. The rules I had been taught, the family unit I knew, suddenly and without warning, were flushed down the toilet like the cigarette.

The ambulance whisked my sister away to the local hospital, where doctors offered no hope. She slipped into a coma and the prognosis was grim. “Pretend she was hit by a car” was one callous recommendation my mother received from a treating doctor. My mother thought otherwise. She stayed by my sister’s side around the clock. I went to school and was bounced from one neighbor to another until my father came to get me. I suppose he tried to work. He had to work. The medical bills started to pile up. Plus there was the upkeep of our new suburban split level, which stood half-empty, aching for family ruckus. Instead, it got the measles encephalitis whisper.

The modest white-shingled house with pink-painted shutters was purchased in November of 1959. With the assistance of the GI Bill, my dad, a World War II army combat vet finally afforded his $19,840 dream. Less than four months later, all was shattered, as his first-born lay comatose due to an unpreventable disease. The storybook beginning was ripped away and everything that happened in 1960 shaped our family’s path going forward. Every single day I wonder what would our lives, and more importantly, my sister’s life, be today if the measles vaccination was available at that time? What if she never suffered from the measles? Would we have a close and stable relationship? Would it be like my two daughters’ loving relationship, histrionics and all? The measles robbed the landscape of our wonder years, broke in like a burglar and stole a normal sibling relationship right from under our feet.

And then a miracle happened. After five weeks of my mother’s vigil, my sister came out of the coma. Hospitals rules were not child-friendly and throughout her stay, I was not allowed to visit. So as soon as she was able, my parents arranged to get my sister to the window so we could see each other. I stood in the vast parking lot and looked up. She was smiling and waving with great ferocity. When I replay that scene in my mind, the wild-looking wave personified her fight to survive and the strength she would need to endure the battlefield of life that lay ahead.

Time moves slowly when you’re six. I don’t remember my sister’s homecoming but it was sometime around Easter because I wanted a pet rabbit. My aunt tried to appease my capricious request. “You could get a toy rabbit now, or, if you wait until your sister comes home from the hospital you could get a real one.”

“My sister is never coming home,“ I blurted out, the verity of the statement echoed loudly. Out of the mouth of babes.

At first, everything seemed normal. My mother was home. My sister went back to school. But her behavior and personality changed as a result of the encephalitis and it presented issues that had to be dealt with. She struggled with learning new concepts in subjects that she had once mastered. At home, she fought over minutiae. My parents didn’t know what to do; the teachers offered sympathy but little support. My sister became a complicated medical case in relatively uncomplicated times. The ill-equipped school system of Regents and Non Regents classes — and nothing in between — allowed my sister to fall through the cracks.

Then my sister “fell” while she was walking home from school. That’s what I heard. In reality, she suffered a grand mal seizure. It was the first of many. Complications from measles encephalitis began to rear its ugly head and lay a path rife with stumbling blocks. After much trial and error, lifelong medications mostly controlled the seizures. But no medication could repair the damage caused by the insidious disease.

Measles encephalitis left my sister permanently brain injured. Throughout her life, she has struggled with higher-level learning skills, awkward social behavior, anxiety, denial and paranoia. My sister’s cognitive and personality changes swelled as the fickle preteen and teenage years took hold. She was the poster child for childhood bullying long before the phenomenon grew media wings. Unlike today, there were few places to turn for answers or social support. My parents knew of no other case of measles encephalitis at the time.

Trips to an eerie place called Letchworth Village was recommended for brainwave tests. Wet electroencephalogram using conductive paste became routine for my sister. She bravely accepted the EEG machine with aplomb. The purpose was for management of my sister’s condition. The hope was for successful rehabilitation. The reality was defeat. She would say that her brain felt as if a part of it was missing and asked me to check her skull for indentations. I would assure her that there were none. These were chilling, sad journeys. We were characters out of a macabre novel and my sister was the central heroine. Fifty-five years since that wild-looking wave from the hospital window, and a myriad cast of inscrutable characters, she still is.

Emmi S. Herman is a writer and children’s book author who lives in Searingtown, New York. She wrote this piece in response to American Red Cross President and CEO Gail McGovern’s Op-Ed, Measles Vaccinations: Saving Millions of Lives.

12 thoughts on “Measles & My Sister

  1. Thank you for sharing. I had no idea measles could be so horrific. Best wishes to you and your sister. I see you are a children’s book author – so am I – I think your story would make a powerful meanful book.

  2. Thank you so much for sharing your story with us.

    An older cousin contracted measles which led to measles encephalitis and which left him with lifelong neurological deficits; a childhood chum died from polio…before safe and effective vaccines were developed.

    • Thank you for responding to my story. It sounds like you can truly empathize. If personal experiences and stories like ours reach more people, maybe we can help others.

  3. Like measles, polio is now a preventable disease. And, like measles, most people who contracted polio had little outward or long lasting ill effects. And, like measles, some people who were infected had catastrophic after effects. I was one of polio’s catastrophic examples. If a vaccine against polio had been available in 1953, my parents would have done everything in their power to obtain it for their children. Thank you for your story.

    • Thank you, Richard, for taking the time to read and respond to my story. We must do everything we can do in our power, whether it be via writing or public speaking or advocating, to reach the parents of today and share knowledge about vaccine-preventable diseases such as polio and measles.

  4. I am reading this because my high school son is writing a paper about the antivaccine wave. I was born in 1961 but still had no idea. Thank you for educating us and for sharing your story. Best to you and your sister.

  5. Thank you for reading, Mary, and please thank your son for investigating such an important topic, especially today, when so many people ignore the science and adopt a selfish attitude toward vaccination. I wish him much success in school.

  6. Dear Emmi Herman,
    I just watched Second Opinion…November 14, 2015! Not enough time for you to discuss measles encephalitis and VERY sad life your sister has led… SO very sorry about same!

    I am now 85 year of age; had difficult case of measles age 10 in 1940.
    Remember much about same… I am Mom, Gram, school librarian (retired) poet, writer, editor, artist….

    PLEASE create a NF book for children age 7 to 11 (and their parents).
    You wrote an incredible blog about a world-wide problem!! You can help educate children and the world about this devastating problem!
    Please consider such a book!!!

    THANK YOU..
    Barbara L Dick
    65 Corning Blvd
    Corning, NY 14830

  7. Dear Barbara, Thank you very much for your comments, especially since you can identify with complications brought on by measles before the vaccine was available. It is devastating to the person affected and the entire family on so many levels. My wish is to spread the word to those people on the fence about vaccines today and I am indeed exploring different ways to communicate that very message. Like you, as mother and grandmother, we have the attention of the most important audience of all. It’s a start.

  8. Dear Emmi,
    I read your article and I was a childhood friend of your sister.
    I found a charm that your sister had given me.
    If possible you can email me.
    Thank you,
    Sandy

    • Thank you for reading my article. My memory does not make the connection with your name as one of my sister’s childhood friends. I would like to learn more! Feel free to contact me via private messenger on social media. Thank you,

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