Our Souls Have No Color
by Judy Joy Jones
"Black People Not Allowed in Iron Lungs"
by Judy Joy Jones
He died because he was Black Joni told me.
“What do you mean?” I asked.
“Harold, Harold was only ten years old and in the polio ward of the hospital I was in. But he was in a separate ward, the one for ‘colored children’. This was the 1950’s you know.”
“Well Harold went home for Christmas like many of us kids in the ward, but when he came back, the hospital had admitted another child to the colored section and there were no more iron lungs except in the white ward. They wouldn’t let Harold use one and he died.”
“Oh,” I answered, tears running down my cheeks.
“When I first got polio and the ambulance was taking me to the hospital, I was eleven years old, and I knew, I mean I really knew, it was gonna be bad, that what was wrong with me was horrible, and I started to pray ‘Thy Will be Done.'”
“And thus began my 60 years in this machine called an Iron Lung had begun.”
“When I finally got out of the hospital at age 35, I took me and my iron lung and got an apartment and put myself through college. I even got a car especially designed for me to drive with my crippled legs and arms.”
“And then my life came to an abrupt halt, and I knew, just like I did in that ambulance when I was eleven years old, I knew this time whatever was wrong would not end for the rest of my days.”
“What was wrong Joni?”
“I had Post Polio Syndrome. And Dr. Jonas Salk didn’t want to hear anything about us, fearing it might bring down his name since he was known as the doctor that cured polio thru his vaccine.”
“You see Post Polio Syndrome is when you get polio all over again, and now I am not only sleeping in an iron lung, I have to use portable oxygen to get through the day.”
“My car went first. I had no strength to drive anymore. As my dreams died one by one, my depression worsened.”
“How could God, whoever God was, do this? I had a chance, a real chance, to live life on my terms and now someone had pulled the window shades down and the only light I saw from that moment on was the one on my iron lung, the one I leave on all night so I can tell from the mirror who is coming in my room.”
“We were the mirrors the doctors never wanted to see in the first place, and now they don’t see us. We are invisible.”
“I know in my heart that many doctors feel great compassion for us. But there are some who treat us as though we are the untouchables.”
“Joni, how did you go on, keeping your spirits up through a lifetime of suffering that few on this earth will ever ever know? How did you pull yourself out of your depression?”
“Jesus. Without my faith I would not be smiling and talking with you. Without knowing that I am here for something greater of which I may never see, I would have killed myself, but Jesus talks to me, you know? It’s like I have a roommate and he never ever leaves me alone.”
“Even now the corporations are threatening to let us die. Yup, they say they can’t do the upkeep anymore on Iron Lungs. I never dreamed corporate greed would let us die. Well they might try, but Jesus is here and we won’t leave until it’s time.”
“But I figure seeing all I have, and feeling all the the pain has given me something that just can’t be broken or ever taken from me. When I ask my attendant to close me up in my iron lung at night, I look up at a prayer taped to the top of my lung;
‘Hold me Father close and warm
may no one do me harm
I am a child of Thee
and You have protected me
thru every storm;
my heart is yours
completely
and may Thy Will be Done’
“I cry lots, I get angry, but I have close friends that help me through those nights with no end. I can call them anytime, but mostly I just call on God.”
“When I am called home and they come to take this Iron Lung out of my apartment, I only hope I have made a few people smile, cry, and get angry … you know just feel life, really feel, cause in the end that’s all I had to give.”
When Joni and I first met, I had accepted a job to help her and moved into her apartment. Within three days she threw me out on the street! Joni was hurting badly and was so angry, her pain was beyond human endurance, mine included. I didn’t have a place to live.
And right before me Nancy, a friend with severe cerebral palsy who could barely talk and was confined to a wheelchair, had tried to live with Joni to help her and was escorted, in her wheelchair, out the door by the police. Yup, Joni hurt and lashed out at everyone, especially those closest to her.
But I knew that the brief moments spent with Joni, well, they were about as close to God as I’ll ever be on this earth. And Harold, I’ll never forget Harold. He and I will meet one day where the color of our skin just doesn’t matter. Oh yeah, I’m certain of that.
c jj 2023
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My lungs were quite sound upon leaving the hospital in January, 1964 at 21 after five weeks of recovery there from being paralyzed completely from the neck down, but breathing and my own. Walking out with only my hands and arms atrophied, still able to walk, for which I was grateful to be alive… I feared the idea of an iron lung and its confinement. I'm glad that one gave comfort to Joni.
That February, my twin brother, Roger, began swelling on his left leg moving up is left side that the local hospital in Menomonie diagnosed as polio. They sent him in a high speed ambulance 200 miles to Madison, Wisconsin, where he would have an iron lung if he needed one. My parents were distraught when they heard after what happened to me in December during surgery. It turned out he had cellulitis that was treated by antibiotics for three weeks and he fully recovered, but lost nearly a semester of college studies that he made up for by going to summer school. I had lost a whole year. By attending to summer schools, I graduated a semester after him with the same degree.
I've known many long-term polio survivors, some of them on oxygen. But all of them complaining about the treatment they were getting. I didn't know that iron lungs still existed after oxygen devices were readily available both at home to sleep and on wheelchairs. But, I see the advantage of an iron lung as I struggle to sleep each night trying to keep warm while even covered with blankets. Having pressure on my body and lungs would greatly enhance my temperature control. I gave up CPAP long time ago because I couldn't stand it. Perhaps I should reconsider even though I'm sleeping well when warm. Sometimes, I'm too hot.
Like post polio syndrome, my paralysis has gradually become worse with age. I tried to sign up for a postpolio syndrome study in 1987, but the director told me I didn't qualify. Instead she took me under her wing and tried to find out what the problem was. In the end, by 1990, I learned that nothing could be done to stop it. Why I am amazed I'm still alive and healthy at 80 years old.
Ron