Community Experts Issue 2: Grace R.’s Journey with Polio – A Personal and Public Health Perspective
Life Before Polio
For Grace, the virus struck early in life. When asked about if she remembered life before Polio, she mentioned that she was born in an orphanage, and she contracted polio between four and nine months of age. She shares:
“I unfortunately do not remember life before polio.”
This simple statement sets the stage for a life shaped by, and in spite of, the condition—a story of resilience and adaptation.
The Experience of Living with Polio
Polio, commonly associated with images of iron lungs and cumbersome leg braces, carries far-reaching consequences beyond the visible. Grace explains:
“Polio is commonly associated with iron lungs and cumbersome leg braces, particularly before the 1950s. However, the implications of polio extend far beyond these visible effects,
resulting in significant, often unrecognized damage.
In my case, the virus has compromised my autonomic nervous system, hypothalamus, and reticular formation, which are critical for regulating attention and focus. As a result,
I experience challenges in managing my body temperature, heart rate, and blood pressure, alongside an increased risk of fainting and sustaining fractures from falls.
Additionally, I exhibit symptoms consistent with Attention Deficit Disorder (ADD), yet traditional medications typically prescribed for ADD have proven ineffective in my situation.”
The virus’s most obvious impact, however, is paralysis:
“The most significant side effect of polio is the paralysis of my left leg. I used to walk with a leg brace, but now I rely on my wheelchair, which I named Christine,
90% of the time. This change is due to the progressive weakness and fatigue associated with post-polio syndrome. Post-polio syndrome refers to the further weakening of muscles
that can occur 15 to 30 years after the initial polio infection. It does not affect everyone who has polio, but it is more common in cases of paralytic polio.”
Grace also describes an unexpected challenge:
“Due to polio partially paralyzing my bladder, I experienced three urinary tract or kidney infections each month for three years. This was by far the most unexpected and
frustrating side effect of post-polio syndrome. I was admitted to the hospital multiple times and had countless visits to the emergency room. Eventually, I was referred to
an infectious disease specialist who developed a medication regimen that successfully resolved the infections.”
Navigating Recovery and Healthcare
Recovery from polio is not about curing the disease, but about learning to live with its effects. For Grace, has also been about learning to advocate for herself and others. Grace reflects on this journey:
“Polio may not have a recovery process, but it focuses on providing supportive care to help individuals navigate their lives. This care encompasses essential tools like leg braces,
iron lungs, wheelchairs, and walkers, which can significantly enhance mobility and independence. Many polio survivors, including myself, have faced a series of surgeries due to
orthopedic complications—I’ve undergone 19 surgeries and procedures, with 15 tied directly to polio.”
Shriners Hospital played a vital role in her care:
“When I was adopted, my parents consulted a close friend and orthopedic surgeon, Dr. Perry Schoenecker, who kindly evaluated my situation—without any obligation for treatment.
Thanks to his referral, I found my way to Shriners Hospital in St. Louis, MO. There, I received multiple surgeries and was fitted with a leg brace. My mother remembers the tiles
where I took my first steps, a testament to the vital care I received.”
Support from Shriners and her family was transformative:
“The most impactful support has come from Shriners and my loving family. Having a foundation of love and encouragement can be transformative.”
Speaking to Healthcare Workers
Grace has valuable insights for medical professionals:
“When speaking to physicians and other medical professionals, it is important to remember that there is no cure or effective treatment for polio. Treatments like physical therapy can
often do more harm than good. The polio virus destroys muscle tissue, which means that there is no muscle to build through exercise—only the risk of overuse injuries.
The best way for a physician or other healthcare professional to support us is by providing accommodations that help us adapt to the world. Leg braces, walkers, and wheelchairs
significantly improve our lives.”
It’s important to note, Grace is far from alone in her critique of physical therapy as a way to manage Post Polio Syndrome; While there is a large body of support for physical therapy in post poliomyelitis, it comes with large caveats. Namely, there is a need for energy conservation, an acute monitoring for any over exertion, awareness of what methods are most critical, and most importantly, a need for time and patience for patient and practitioner.
She also highlights the importance of patient advocacy:
“As a young polio survivor, I have had to educate physicians about polio and post-polio syndrome, which has encouraged me to learn how to advocate for myself in medical situations.”
Patient advocacy is an essential skill for many individuals living with chronic conditions. While the body of medical knowledge is vast and continuously evolving, it is crucial for healthcare providers to respect the lived experiences of their patients. Those navigating life with these conditions often possess unique insights that complement clinical expertise. Furthermore, recognizing patients as experts in their own experiences—not just as victims of a disease without agency, but as whole people—ensures more empathetic and effective care.
Advice for Public Health Workers and Decision-Makers
Grace’s message to public health policymakers and the public is clear and passionate:
“Vaccinate. Stay educated. Know the signs of grifting and quacks. We are doomed to repeat the past if we do not take steps to avoid it.”
It is a concerning fact that due to current political climates, the most outlandish, extreme, or inciting statements gain traction. As Public Health is (and has always been) a political body, we must remain vigilant against what Grace is warning against, both as people and as professionals.
She warns against complacency in the fight against preventable diseases:
“Decision-makers in healthcare need to be genuine healthcare professionals—physicians, nurses, nurse practitioners, and physician assistants—who engage directly with patients
and have a grounded perspective. The harm being inflicted on this country is unacceptable. It is embarrassing to even consider the possibility of polio cases re-emerging in 2025 and 2026.”
Misconceptions About Vaccines
Grace is particularly vocal about misinformation surrounding vaccines:
“The fear of vaccination primarily stems from misinformation and financial motives. Why can’t you find credible scientific, peer-reviewed articles supporting anti-vaccine claims?
Because those claims lack credibility. The anti-vaccine industry relies on falsehoods and exploitation.”
She underscores the hypocrisy of anti-vaccine rhetoric:
“The people who are fear-mongering vaccines are vaccinated. The crunchy mom across the street or your antivax redpilled uncle, THEY. ARE. VACCINATED. THEIR PARENTS CHOSE TO PROTECT THEM.”
Clinical and Epidemiological Background on Polio
Polio, caused by the poliovirus, primarily affects children under five. While most infections result in mild or asymptomatic cases, approximately 1 in 200 leads to irreversible paralysis.
Vaccination has nearly eradicated polio globally, but it remains endemic in a few regions, and remind us of the importance of vigilance. Also, it should be noted, thanks to various political issues including a rise in anti-vaccine sentiment, outbreaks in regions where Polio was assumed to be eradicated have occurred, most notably in the case of the New York outbreak of 2022. Post-polio syndrome, a late complication, affects many survivors, emphasizing the need for lifelong care and that a priority should be prevention.
Final Thoughts
Grace leaves us with a powerful reminder:
“Today, society would struggle to manage a widespread outbreak of a vaccine-preventable disease. Reflecting on the COVID-19 pandemic, it overwhelmed our healthcare system, resulting in millions
of people facing long-term side effects from a disease that still lacks comprehensive understanding. Now, imagine if there were a polio epidemic.”
Her story, told in her own words, is a call to action for all of us to safeguard the progress made against polio and other preventable diseases.
Community Experts remains committed to amplifying the voices of those who live these realities every day. Grace’s story reminds us of the power of resilience, advocacy, and public health vigilance. If you or someone you know would like to share their story about disability, chronic disease, vaccine preventable disease, or anything else similar, please reach out to us on BlueSky or by email at Cody.Carmichael@Broadlyepi.com .