Updated: Aug. 1, 2016 | Originally Published: Dec. 1, 2015
Lila Thompson, a children’s author, shared her heartfelt story at the 2015 Measles & Rubella Initiative meeting in Washington, D.C. Below is a reimagined account of her experience, shedding light on the harsh realities of measles.
Good afternoon.
I am a victim of measles. Yes, you read that right. I am a victim of measles, despite never having contracted the disease myself.
In late February 1960, my sister, a vibrant and healthy child, was in the midst of her fourth-grade year in Rockland County, New York. She caught measles from a classmate who lived just down the street. This classmate was one of the nearly 1,000 uncomplicated cases logged before the United States introduced the measles vaccination program in 1963. Unfortunately, my sister became the exception—she was one of the rare cases that led to lifelong disability. On March 1, she was diagnosed with measles encephalitis.
At just 6 years old, I grasped the severity of her condition. Even today, hearing the word “measles” stirs deep emotions within me, especially now as herd immunity is challenged and vaccine resistance grows stronger against proven science.
My sister was quickly admitted to the local hospital, where she fell into a coma. The damage from measles encephalitis was already severe, and doctors provided grim prognoses—one even callously suggested that my mother “pretend she was hit by a car.” But my mother stood firm, refusing to give up as she remained at my sister’s side day and night.
During this time, I was shuffled between neighbors until my father could pick me up. I could only imagine how hard he was working to manage our financial burdens—medical bills were accumulating, and our suburban home stood eerily quiet, longing for the lively family moments it had been built for.
Then, a miracle occurred. After five weeks of my mother’s unwavering support, my sister emerged from her coma. Hospital policies were strict, preventing me from visiting her, but my parents arranged for her to wave at me from the window. I remember standing in the vast parking lot, looking up at her smiling and enthusiastically waving. That moment encapsulated her fierce will to survive and the strength she would need for the challenges ahead.
Time felt endless when I was 6, and I don’t clearly remember my sister’s return home, but I know it was around Easter. I wanted a pet rabbit, and my aunt suggested I could have a toy if I couldn’t wait for my sister to come home with a real one. I blurted out, “My sister is never coming home.” It was a painful truth I felt but couldn’t fully understand—metaphorically, the sister I once knew before the measles never truly returned.
Initially, things seemed to return to normal. My sister went back to school, and my mother was home. But my sister’s personality had shifted due to the encephalitis. Learning new material became a struggle, and she often argued over trivial matters. My parents felt helpless, while teachers offered sympathy but little support. My sister became an intricate medical case during a time when medical solutions were simpler.
Then it happened—she “fell” while walking home from school. In reality, she suffered a grand mal seizure, the first of many. The complications of her measles encephalitis began to manifest, creating obstacles in her life. As she entered her preteen and teenage years, her cognitive and social difficulties intensified, making her a target for bullying long before it became widely recognized. Though lifelong medications helped manage her seizures, they couldn’t undo the damage done.
We made frequent trips to a place called Letchworth Village for brainwave tests. Using a wet electroencephalogram became routine for her, and she faced the EEG machine with remarkable courage. The goal was to manage her condition and hope for rehabilitation, but the reality was defeat. She once told me that it felt like part of her brain was missing, and she would ask me to check for any indentations on her skull. I always reassured her that there were none. Those were haunting journeys, where we felt like characters in a tragic story—my sister, the brave heroine.
Measles encephalitis left her with permanent brain damage. Throughout her life, she has faced challenges with higher-level learning, social interactions, anxiety, and the frustrating condition of anosognosia, which is the lack of awareness regarding her own health issues.
Socially, my sister has drifted in and out of my life and our family’s life for decades. She possesses the determination of a bullfighter but lacks a clear strategy; her strength is undeniable, yet she doesn’t have the tools to navigate life. That is the core issue. She rejects support from adult protective services, insisting, “There is nothing wrong with me.”
It’s an ironic situation—she qualifies for social services, desperately needs help, yet refuses to accept it due to her denial of her disability. This can be exasperating, but it’s all part of the illness that has shadowed her life since measles struck.
Every day, I ponder how different our lives would be if the measles vaccine had been available back then. What if she had never contracted the disease? Would we share the close bond that I see between my two daughters? Measles stole so much from us—it broke in like a thief, robbing our childhood.
Measles took away what could have been a normal sibling relationship. It stole joy, laughter, and the mischief that sisters share. It robbed her of a future that could have included her own family.
Today, I worry about her physical health. She falls often, likely due to her brain injury from measles encephalitis. Vulnerable, she is at risk from individuals who may take advantage of her.
My mother, frustrated by the lack of answers, even returned to college in her 40s to pursue a degree in psychology. She passed away ten years ago. My father, who now lives nearby, struggles with memory issues and has outlived his resources, yet he has found some peace regarding my sister’s situation after five decades of worry.
My husband and I plan to support my sister for as long as we can, but uncertainty looms over what will happen when we’re unable to.
So today, I share my story. I want to reach out to young parents who are undecided about vaccinating their children against measles. I urge pediatricians who may not have witnessed the devastating effects of measles encephalitis to understand its life-altering consequences.
If we are serious about preventing vaccine-preventable diseases, we must tackle vaccination programs as a social issue on local, national, and global levels. Otherwise, like me, you too could become a victim of circumstances beyond your control—paying the price for those who fail to recognize the undeniable benefits of vaccinating every eligible child against diseases like measles.
This article was originally published on Dec. 1, 2015.
Summary:
Lila Thompson shares the poignant story of her sister, who suffered severe consequences from measles after contracting encephalitis in 1960. The narrative emphasizes the long-term effects of the disease, which included cognitive and personality changes, while highlighting the importance of vaccination to prevent such tragedies. Through her family’s experiences, Lila calls for awareness about the necessity of vaccines and the challenges faced by individuals affected by childhood diseases.