“What is polio?” asked two young CNAs in the care facility where I live. I was taken aback at their response after telling them that I used a ventilator because I have post-polio syndrome (PPS). I realized that, at age 85, I have outlived much of the collective memory of polio before the vaccine. The terror parents felt each summer as they scrutinized each cough or fever exhibited by their children should not be forgotten. Polio could return if vaccinations are ignored. While the polio virus affected people in different ways, here’s what I wish people knew about experiences like mine.

I had polio at age 11 in 1952 and was almost completely paralyzed and in an iron lung. By age 19, after therapy and surgeries, I felt I’d recovered. I went to college and graduate school, worked full-time in jobs that required a lot of walking, and travelled in the U.S. and other countries. I thought my polio was history!

I want people to know that polio is not history for those of us who lived it. My introduction to PPS began in 1975. It was like living backwards—losing gains made many years earlier. It became difficult to walk long distances, and eventually, I needed a scooter for mobility and a non-invasive portable ventilator 24/7 to help me breathe. Overwhelming fatigue led to an early retirement at work. When I could no longer stand or transfer myself, I moved to assisted living in 2003 and later to long-term care.

My doctor once said to me, “We don’t see people like you.” I want people to know that I’ve had to become an educator/advocate for myself, providing PPS information when needed, especially in medical care. In long-term care, constant education is needed for rotating staff on how to care for me and my ventilator and understand why I’m always cold. I’m fortunate to live in a facility where caring staff listen and adapt. 

I want people to know that those of us with PPS are resilient and find ways to meet new challenges as they arise. We can live to “bloom where we’re planted.”  AND WE’RE STILL HERE!