As an advocate for children’s health and a writer, I had the opportunity to share my story at a health initiative meeting in Washington, D.C. My experience serves as a poignant reminder of the serious impact measles can have on families.
Good afternoon.
I am a casualty of measles—though I never contracted the disease myself. In late February of 1960, my sister, a vibrant and energetic child, was in the fourth grade in Rockland County, New York, when she caught measles from a classmate who lived nearby. His case was one of nearly 1,000 uncomplicated instances reported before the introduction of the measles vaccine in 1963. Tragically, my sister became that one—she was diagnosed with measles encephalitis on March 1.
At just six years old, I grasped the seriousness of her situation. The term “measles” is forever etched in my memory, especially as we grapple with vaccine hesitancy today. My sister was rushed to the hospital, where she fell into a coma. The prognosis was bleak, with one doctor callously suggesting my mother “pretend she was hit by a car.” But my mother remained steadfast, refusing to leave my sister’s side.
While my father worked tirelessly to cover the mounting medical expenses and upkeep of our home, I was shuffled from neighbor to neighbor. Our once lively household was now silent, overshadowed by the specter of encephalitis.
Then, in a miraculous twist, after five weeks, my sister emerged from her coma. Hospital regulations prevented me from visiting her, so my parents orchestrated a way for us to see each other through a window. I still vividly recall her enthusiastic wave, a gesture that embodied her resilience and the challenges that lay ahead.
Time felt interminable at that age. I don’t remember her coming home, but it was around Easter, and I longed for a pet rabbit. My aunt suggested a toy rabbit to tide me over, but I exclaimed, “My sister is never coming home!” In a way, the sister I knew before the illness never did return.
Initially, life resumed with some semblance of normalcy. My mother was home, and my sister returned to school. However, the effects of encephalitis manifested in troubling ways. She struggled to grasp concepts she once excelled in, and disagreements over trivial matters became commonplace. My parents were at a loss, while teachers offered sympathy without practical solutions. My sister quickly evolved into a complex medical case during a time when such challenges were far less understood.
Then came the day she “fell” while walking home from school—though the reality was a grand mal seizure. This marked the beginning of many such episodes as complications from the measles began to surface. Navigating her preteen and teenage years became increasingly difficult, with bullying becoming a sad reality for her. After much trial and error, medication helped manage her seizures, but the damage inflicted by the disease was irreversible.
We faced a grim journey to a facility called Letchworth Village for brainwave tests, where the EEG routine became all too familiar. She faced every procedure with courage, yet often expressed that she felt parts of her brain were missing. It was heartbreaking to reassure her that there were no indentations on her skull—her fear painted a chilling picture of her reality.
Measles encephalitis left my sister with lasting brain injuries. Throughout her life, she has battled challenges with learning, social interactions, and a lack of awareness regarding her condition, known as anosognosia. Our relationship has fluctuated over the years, as she possesses a relentless drive but lacks the strategies to channel it effectively. Ironically, while she qualifies for social services, her belief that she has no disability prevents her from accepting help.
I often wonder how different our lives would be if the measles vaccine had been available back then. Would we have shared the bond that my daughters now enjoy? The measles robbed us of that normal sibling relationship, stealing laughter, secrets, and a future filled with possibilities.
Currently, I worry about my sister’s physical health; her frequent falls are likely related to her past injury. My mother, in her quest for answers, even returned to college in her 40s to earn a degree in psychology. She passed away ten years ago, while my father, memory-impaired and living nearby, has outlived his financial resources and the anguish that surrounded my sister’s health for decades.
My husband and I will continue to support her as long as we can, but what happens when we can’t?
Today, I speak out to share my story, hoping to reach parents who may be hesitant about vaccinating their children against measles. It’s essential to recognize the real and lasting consequences of vaccine-preventable diseases. For more information, you can explore the importance of vaccination as a public health issue on various levels, including this resource on vaccine-preventable diseases: intracervicalinsemination.org.
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In summary, my sister’s struggle serves as a crucial reminder of the importance of vaccinations. Every child deserves a chance to grow up healthy and free from the ravages of diseases like measles.
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