Emmi Herman, a children’s book author and writer, was a presenter at the 2015 Measles & Rubella Initiative meeting in Washington, D.C. Below is a transcript of Emmi’s speech, a compelling and powerful firsthand perspective of the devastation measles can bring.
I am a victim of measles.
I am a victim of measles without ever having had measles.
At the end of February 1960, my sister, a precocious, healthy—and I emphasize healthy—child was halfway through the fourth grade in Rockland County, New York, 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 United States. For every 1,000 cases of measles, one would develop into a lifelong disability. My sister’s case was that one. On March 1, she was diagnosed with measles encephalitis.
I was only 6 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 and is what brings me here today when herd immunity is in question and vaccine-resistant campaigns trump proven science.
My sister was whisked away to the local hospital where she slipped into a coma. Measles encephalitis had already caused brain injury and the prognosis was grim. “Pretend she was hit by a car” was one callous recommendation my mother received from a treating doctor. But 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 home, which stood half-empty, aching for the family ruckus for which it was intended.
Instead, it got the measles encephalitis whisper.
And then, a miracle happened. After five weeks of my mother’s vigil, my sister came out of a coma. Hospital 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, awkward wave personified her fight to survive and the strength she would need to endure the battlefield of life that lay ahead.
So time moves slowly when you’re 6 years old. I don’t recall my sister’s homecoming, but it was sometime around Easter because I wanted a pet rabbit.
My aunt tried to appease me.
“Oh, you could get a toy rabbit now,” she said, “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.
Out of the mouth of babes. Because in a metaphorical way, the sister I knew before measles never really did come home.
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 encephalitis, and it presented issues that had to be dealt with. She struggled with learning new concepts in subjects where she had previously 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.
And then she “fell” when walking home from school. That’s the way it was reported to me. 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 for her. 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. After much trial and error, lifelong medications mostly controlled the seizures. But no medication could fix the irreparable damage caused by the insidious disease.
Trips to an eerie place called Letchworth Village were 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.
Measles encephalitis left my sister permanently brain injured. Throughout her life, she has struggled with higher-level learning skills, awkward social behavior, anxiety, and most frustrating of all, anosognosia, a lack of awareness of her own mental health condition.
Socially, my sister has been in and out of my life and my family’s life on and off for decades. She has the drive of a bullfighter, but she has no strategy; she has the force of a twister along a reckless path; and she is strong—oh, she is so very strong, like steel, but she doesn’t have the tools to guide her strength. And that is the crux of the problem from a social issue.
She doesn’t have the tools and refuses support from adult protective programs.
If you ask her, she will say, “There is nothing wrong with me.”
Therein lies the irony. She is eligible for social services, in dire need of social services, but because of the label disability, she rejects the help because she says “I am not disabled and there is nothing wrong with me.”
She is frustrating to the point of exasperation. But it is all part of her illness that has followed her throughout life ever since she was stricken with measles.
Every single day, I wonder what would our lives, and more important, my sister’s life, be today if the measles vaccine was available at that time? What if she never contracted the measles? What if she never suffered its consequences? Would we have a close and stable relationship? Would it be like my two daughters’ loving relationship, histrionics and all? The measles robbed that landscape for me. It broke in like a burglar and robbed our wonder years.
Measles stole a so-called normal sibling relationship right from under our feet.
It stole laughter.
It stole mischief; it stole secrets sisters keep.
It stole reliability; it stole dependability.
It stole a future filled with a family of her own.
Presently, I am concerned about my sister’s physical wellbeing. She falls. She falls a lot, a condition likely connected to her brain injury from measles encephalitis. And she is vulnerable, a target for unscrupulous people she meets.
My mother, frustrated without answers, tried every angle, including returning to college in her 40s to get a degree in psychology. She passed away 10 years ago.
My dad is memory-impaired and lives near me. He has outlived his monetary resources. But he has also outlived his anguish surrounding my sister’s condition, something that plagued him for 50 years.
My husband and I will subsidize my sister for as long as we can. But when we can’t, I don’t know what will happen.
So today what I can do is to speak out.
To share my story.
To tell young parents who are on the fence about measles vaccination, pediatricians even, who have not seen the scourge of measles encephalitis and the devastating, life-changing results it causes.
Because if we really want to be serious about vaccine-preventable diseases we have to keep addressing the vaccination program as a social issue on a state, national and international level.
Otherwise, like me, you are a victim, too.
A victim who has to pay the price for those who do not see the irrefutable benefits for giving every eligible child a vaccine for vaccine-preventable diseases such as measles.