Normal in Whose Eyes?

In Everyone has one, Opinion by JoAnn Jackson

Mickey Rooney was the first famous person I almost met. I say almost met because I lay behind the glass window of a ward in the Arsenal Street Isolation Hospital in St. Louis. Among other diseases, this city hospital was the warehouse for treating Infantile Paralysis, as Polio was known then.

1943 was an epidemic year in St. Louis and the wards were crowed with children both older and younger than my nine years, and a few young adults.

Even though I almost met Mickey Rooney, who had waved at me and shouted, “Hi, sweetheart” through the glass. I most remember the smell of wet wool and the thump, thump of the Iron Lungs, metal coffin-like machines some needed to force air into paralyzed lungs. But it was the wet wool permeated every waking moment, five days a week.

All day long the nurses would wrap our affected limbs with hot wet wool, then a yellow oilcloth. It was to be changed when it cooled but at times the overburdened staff would not get back to us until the wool was cold and itchy.

The treatment for Polio, invented by Sister Kenny, an Australian nurse was treatment more born of hope than science. There were hot baths every day, as hot as your skin could bear. As a nine year old, I thought hotter than I could bear.

After, there was physical therapy to stretch and keep flexible arms and legs. In retrospect, those therapists must have trained under Torquemada during the Inquisition..

The hospital was my home for nine months. One Sunday my parents came and, literally, carried me home. I had not walked for nine months and, until “The March of Dimes” paid for crutches and braces, I couldn’t walk.

I don’t remember how long that was but my father carried me everywhere. Wheelchairs were not common among poor people. And the “experts” wanted to make us look as normal as possible and it was normal to stand. It was normal to walk.

One Sunday morning, before they put me on crutches, my father carried me into church. A man said, “If I had a kid as crippled as that, I’d keep her at home.” Funny how after nearly sixty years I can still cry for that little girl. I didn’t cry then. My father did.

I struggled with crutches and braces most of my life. But I stood up like a normal person … almost.

As a grown woman, I was 4’11, had scoliosis and a twisted leg but by God I was standing. I didn’t need to be carried

I was in my 60’s before I realized that the professionals wanted to make me look “normal” even though I was never even close. Using crutches for 40 years and a manual wheelchair after that was the worst thing for a Post Polio. I learned that about 6-7 years ago when I went to a Post Polio Clinic.

My shoulder rotators are shot. I had been wearing myself out while I went to school, raised kids and held down a job. I was making my muscles weaker, not stronger.

The professionals are NOT always right. They were doing the worst thing for me. We are not always right. We are taught to listen to those who, supposedly, know.

What we can do is gather as much information as possible and then we need to be our own advocates. As the Pennsylvania Dutch say I am too soon old and too late schmart.

Wisdom often takes a long time. Knowing what is best can either elude us or no one else gets it either. My disability had worsened over the years but finally, I am what I am.

I have accepted me, even if that causes problems for those who aren’t comfortable with those who don’t approximate whatever normal is perceived to be