Parents PACK Personal Stories – Polio
Cami’s story: Poliomyelitis changed my life and robbed me of options open to others
If you are struggling with a decision about whether to vaccinate your child for an infectious disease, I urge you to read my story.
I was 7 when I contracted polio in 1954. No one knows how. I was a seemingly isolated case in our suburban community. I received immediate and excellent care and had the support of a strong mother, father and extended family and friends. Eventually, I made a good recovery. But, it was a long and sometimes painful struggle involving years of physical therapy, multiple surgeries, and watching others take for granted basic activities that were now denied to me.
Don’t get me wrong. My life has been rich … I have enjoyed friendships, been blessed with a loving husband, raised a family, had a career, traveled worldwide, and nurtured many interests. And, despite the limitations I lived with, I always had the attitude that “where there’s a will, there’s a way.” Others were always by my side offering support, but muscle weakness left by my childhood polio infection remained and is now exacerbated by age. Because of post-polio syndrome, I now wear two leg braces and walk with crutches.
My life remains rich, but I wonder how we have come to a time where people resist the factual advice of the scientific community and refuse known means to contain another deadly disease — COVID-19 — wrongly maintaining that it is their constitutional right and recklessly endangering not only themselves, but everyone around them. Living a life shaped by a childhood infection, to me, their decisions seem foolish, selfish, and deadly wrong.
Although I managed to overcome many barriers and have always had support, there is no doubt that poliomyelitis changed my life and robbed me of options open to others. The bottom line is that while one can survive a vaccine-preventable disease, it can have lasting impacts throughout life, affecting not only the survivor but also their family. The difference between me and children of today is that my parents had no choice. There was no vaccine for polio when I contracted it. Would parents today willingly choose to limit their children’s lives, or risk their deaths? Sadly, from my experience, by rejecting proven and safe vaccines that protect against measles, mumps, and rubella (MMR), COVID-19, and, yes, polio, that is exactly the gamble they are choosing to take.
In 2023, Cami shared her experience with the Infectious Diseases Society of America (IDSA). Check out “A polio survivor shares her story."
Catherine’s story: "I couldn’t ever do what everybody else did"
Cathy was 2 ½ years old when she had polio. She had to endure months of therapy, multiple surgeries on her foot, leg braces that made walking difficult, and decades of living with post-polio syndrome (PPS) caused by the long-term effects of polio. Cathy shared her story and her perspective on COVID-19 vaccine for kids with our Parents PACK team. Check out her story:
- Interview: “I Couldn't Ever Do What Everybody Else Did” — Living with the Long-term Effects of Polio
- Video: “Had I had the chance to get a vaccine, maybe my life would have been a little different.”
Catherine also shared her story in Patient Safety, the journal of the Patient Safety Authority. Check out her story, “I Never Had a Choice: My Lifelong Struggle With Polio,” on the Patient Safety website.
Janice’s story: Perspective of a polio survivor
Let me introduce myself: I'm a middle-aged woman, a wife, a mother, a future grandmother, and ... a polio survivor. I can recall my mother commenting that she was fortunate to have had her children before the age of "pregnancy scares" that peppered the media in the '70s and early '80s. My generation endured a fair share of frightening reports: One week, we'd be advised that it was perfectly OK to consume two cups of coffee each day. Seven days later, a report would be released that predicted dire consequences if we dared ingest a "nano-sip" of coffee.
Fast forward to today: As young parents, you cannot get through a day without hearing news reports on everything from toxic lead levels in toys to autism scares linked to anything and everything, including vaccines. I find myself repeating my mother's lament with a new twist: I'm glad that my greatest worries surrounded things like coffee consumption!
It's so difficult to be a parent these days, to somehow sift through the myriad of conflicting information and parenting strategies. It's for this very reason that I feel compelled to tell you a little story.
Let's take a trip back in time
In the early 1950s, the U.S. was challenged each summer by a virus 5,000 times smaller than the width of a human hair. The organism caused a disease called infantile paralysis (a.k.a. polio). The early symptoms of polio resembled the flu: fatigue, fever, aches and pains, vomiting, and stiff neck. But, those symptoms could quickly change to an inability to breathe without mechanical assistance, to paralysis of limbs, to lifelong deformities of limbs, to death — within a matter of hours.
Since 1916, the United States had endured yearly polio epidemics that left thousands dead and thousands more disabled. That first horrific epidemic, whose epicenter was traced to an immigrant section of Brooklyn called "Pigtown," infected 27,363 children across 26 states. Six thousand children, most under 5 years old, died that terrible summer and early fall.
More alarming still, was the fact that:
- Each year the epidemics were getting worse. Public health officials were baffled by the mercurial properties of polio. One year, a community would experience many cases. The next year, few cases would be reported.
- No one could explain the unpredictable nature of polio. Pregnant women were found to be especially susceptible to the virus. Boys were more apt to be paralyzed than girls.
- The age of polio's victims was also getting older. By the 1940s, the average age of victims was between 5 and 9 years.
In 1952, our country experienced its worst polio year with 57,879 reported cases. An estimated 600,000 cases were reported worldwide that same year.
Parents lived in fear of warm weather — polio weather. They adhered to all public health recommendations and warnings: Avoid large public gatherings, never allow children to swim in public swimming pools, and insist upon frequent hand washing. One of my peers remembers that her mother forbad her to eat peaches in the summer for fear that the virus could flourish in the "peach fuzz." Another friend was forbidden to attend church each Sunday during the summer months. As children born soon after the end of WWII, we were too young to appreciate our parents' terror. For us, "polio weather" was a terrible annoyance. Every time we turned around, our parents were curtailing our activities.
Enter DeWitt, NY (a suburb of Syracuse) in 1953
Frankie and Janice Flood (fraternal twins born one minute apart) were in first grade at Moses DeWitt Elementary School. They were busy picking out Halloween costumes and dreaming of the mountains of candy that would soon overflow their "Trick or Treat" bags. Frankie had a little head cold, so he stayed home from school in the hopes that a chest cold could be averted. Janice wished for a similar fate, hoping for additional playtime with her birth partner and favorite pal.
But, on October 30, 1953, Frankie began to have trouble breathing. He was rushed to City Hospital in Syracuse where a diagnosis was made, via spinal tap, of bulbar polio. He was immediately placed in an iron lung, a cylindrical machine that was designed to do the work of paralyzed muscles that affected breathing and swallowing. Only Frankie's head protruded from the yellow, 500-pound, 7-foot long mechanical "caregiver."
Janice was rushed to the hospital on Halloween morning to receive multiple doses of gamma globulin. Her parents had been told that, most likely, their other twin was already infected with the virus. Gamma globulin (a mixture of antibodies derived from human blood that sometimes prevented polio or lessened its severity in an infected individual) was the best that physicians could offer. The polio vaccine trial would not take place until late spring 1954 (six months away).
Sixty-one hours after being admitted to the hospital, Frankie Flood succumbed to polio. His father had cradled him as best he could as he was whisked to the operating suite for an emergency tracheostomy. A New York State Certificate of Death recorded his death on November 1, 1953, at 10:25 p.m. On the night of his burial, Janice was admitted to the same hospital with a diagnosis of paralytic polio. Later on in the week, the twins' mother suffered a miscarriage. How quickly life had changed for this young family!
Ultimately, eight children in Frankie and Janice's classroom of 24 contracted polio. Although hospital records from that year are missing, some parents recall that over three dozen DeWitt residents were diagnosed with polio within a span of a few weeks, parents were frantic. Two of the twins' classmates died from complications of polio several years after the epidemic. The children were sisters, leaving the devastated parents childless.
In 1979, wild-virus polio was eradicated in the United States. But as late as 1988, 350,000 people in 125 countries around the world contracted polio each year. That same year, the Global Polio Eradication Initiative was formed. To this day, it remains the world's largest public health endeavor.
Back to present day
Polio is not eradicated worldwide, though the global case count has been drastically reduced. The public health community believes that polio can be eradicated, but time is running out. If eradication is not soon realized, it is now estimated that over 10 million more children will be paralyzed by mid-century.
There is no known cure for polio. Vaccination is the only prevention for the killer and crippler that prefers children as its victims. Any infected individual can carry the virus and infect any other unprotected individual anywhere he or she travels. Some public health officials describe polio as "a plane trip away, no passport required."
I am Janice Flood Nichols, a middle-aged woman, a wife, a mother, a future grandmother, and ... a polio survivor who still misses her twin brother, Frankie, and two of her classmates. I fought hard and long to learn to walk again. I fought harder still to navigate the rocky road of grief following Frankie's death.
As a mother, I know all too well your desire to protect your children from any and all harm. Sadly, I know that that is an impossible task. All we can do is our best, with "best" becoming a pretty confusing, sometimes terrifying task these days.
I ask you to address your vaccine concerns to your medical providers and to receive accurate vaccine information from well-documented sources. The Centers for Disease Control and Prevention and the American Academy of Pediatrics offer excellent Web-based information for parents.
I continue to pray that polio remains a thing of the past in the United States. As more and more parents question the necessity and safety of vaccinations (primarily because of inaccurate information that has flooded the airwaves and the Internet), I must confess that I am worried.
- Watch this short video of Janice Flood Nichols telling her story.
- Learn more about polio and the polio vaccine.
About the author
Polio survivor Janice Flood Nichols is the author of Twin Voices: A Memoir of Polio, the Forgotten Killer (honorable mention recipient of the 2007 London Book Festival award in both nonfiction and biography). Nichols holds a Bachelor of Arts in Psychology from Seton Hill University and a Master of Education in rehabilitation counseling from the University of Pittsburgh. She has been employed as an instructor in the social work graduate school at Syracuse University and in the social service department at Community-General Hospital, Syracuse, NY.
Materials in this section are updated as new information and vaccines become available. The Vaccine Education Center staff regularly reviews materials for accuracy.
You should not consider the information in this site to be specific, professional medical advice for your personal health or for your family's personal health. You should not use it to replace any relationship with a physician or other qualified healthcare professional. For medical concerns, including decisions about vaccinations, medications and other treatments, you should always consult your physician or, in serious cases, seek immediate assistance from emergency personnel.