As posted at Disability*Blog..
Colleen’s Story: Part I –
My Childhood Years
By Guest Blogger Colleen M. Feldman
This is the first in a three part series by Colleen M. Feldman, who contracted polio in 1941, just prior to her 13th birthday. In this post, she describes her childhood & teen years living with polio and her rehabilitation. The next two posts in the series will address her experiences later in life as a wife and mother with a disability raising three children, and eventually entering the workforce. Mrs. Feldman brings a unique perspective to Disability.Blog, having lived with a disability more than 50 years before the Americans with Disabilities Act (ADA) became law. She is also the mother of Disability.gov’s Content Manager, Robert Goldstraw.
I am 83 years old, and last year marked my seventh decade of living with a disability. During the “dog days” of the summer in 1941, I became infected with polio, just a few days before my 13th birthday. To this day, I remember it all very well – the high fevers, headaches, neck pain, sore throat and not being able to raise my head up. I remember my father at my bedside, looking like a very old, worried man, when he was probably still only in his 40s, and the doctors coming to my home to tell my parents what was “wrong with me”– labeling it everything from sun stroke to “growing pains,” and one simply saying, “I don’t know.”
After three weeks at home flat out in bed with no real medical care, on August 25, 1941, I was taken to Children’s Hospital in Baltimore. They put a card at the head of my bed that read “acute poliomyelitis.” I was actually happy to be able to tell my parents what was “wrong” with me. By then, I’m sure they already knew, but they seemed shocked to hear me say it. I don’t remember signing my name on any dotted line or some official document, but everyone kept saying – “she ‘contracted’ polio.” During that time, my dad was making plans for a motor trip to Kentucky. His relatives warned him not to come, because of this dreaded disease called poliomyelitis spreading throughout the south, not realizing at the time that his baby daughter had been infected with this very disease.
I was paralyzed from the neck down and put in a Bradford frame – right arm in a splint, a collar around my neck and my legs in shell-like casts with a bar between them to keep them separated and my feet held in place. I remember seeing a long list of figures written in red on the doctors’ clipboard. I later learned that red wasn’t good – it meant a level of weakness below what the goals were. One day, I took the neck collar off. It had an itchy wool cover on it, and I hated it. I showed everyone that I could lift my head off the bed. It was removed, and I never wore it again.
In the 1940s, the physical therapy I received consisted of a sun lamp and massages with cocoa butter cream. I still love the smell of that, but hate the smell of ether. A woman would come to our home three times a week and massage my legs and right arm. She was a kind, gentle woman who would tell me about her other patients. She connected us through correspondence, and at one point, I was writing letters to more than 70 people affected by polio.
That summer, several weeks before I came down with polio, my father bought me green bike from Sears. He took me along and let me pick it out. It was beautiful. Needless to say, it was like new when I went to the hospital, and not long after that, a neighbor approached my dad to ask him if she could buy it for her daughter. After all, she figured the girl with polio had no use for it! My dad was not known for his diplomacy, but they told me that was shown at that moment. I never did ride that bike again. No more bike riding, ice or roller skating or running through the woods with my big dog, Teddy.
In a few years, I went from a child to a young lady, started to wear lipstick and put ribbons in my hair. With my left hand, I would brush my black hair straight up against the white sheet. I had blue eyes and black hair, and people said I was pretty. I always felt that such compliments were given because people felt sorry for me, but I went from the “ugly duckling” of the three girls to a pretty teenager. My mom used to say, “Your sisters will have many, many dates and boyfriends, but the one who likes you, will like you for who you are.” As it turned out, that proved to be true.
Despite the compliments, there were certainly some ugly things said and discrimination, too. The mothers of some of my classmates burned my letters. They told me not to write anymore – they feared “catching” polio from my letters. It got back to my mother that a woman she knew had said polio was caused by “uncleanliness,” which hurt her very much. (The same woman who said these things also said that a wealthy, “upper-class” woman in our home town had a child come down with polio the following year.) Only two boys and one mother of a classmate visited me, and I never reconnected with my classmates after seven years of being together.
From August through December of that year, I was in the hospital. Much of my time was spent listening to the radio, singing along with popular singers of the day like Sarah Vaughn, Ella Fitzgerald and Eartha Kitt. To this day, I remember FDR’s announcement of the bombing of Pearl Harbor on the radio. (Roosevelt, too, had polio, and one of his biographers called his attempts at hiding his disability his “splendid deception.”) I will never forget that I had visitors in the room that day, and dad asked us all to be quiet, as that somber voice came over the radio announcing the attack. I remember later saying Pearl Harbor and I got “attacked” the same year. Just before Christmas, I said I would “tie sheets together to get out the window to go home,” and a few days later, I was discharged.
Back at home, it was a very difficult time for my mother. Our dining room was turned into a bedroom for me so I could be on the first floor. Over time, with physical therapy, I was measured for braces, orthopedic shoes and crutches so I could learn to walk again. The heavy, steel-leg braces back then were nothing like the lighter, “high-tech” ones of today. Years later, I would walk without them with a limp and serious drop-foot in both feet. I never regained the muscles in my feet, and had a surgery called posterior bone-block to help with that.
My schooling was interrupted for close to two years, and when I returned to school, I had to repeat the last half of the seventh and eighth grades and then, was off to high school. My dad again stepped forward and took me for an interview to a very small, all girls private school. I wore slacks to hide my braces. I was told by the principal, “You will not wear slacks to this school young lady.” That “cured” me of being ashamed of my braces.
My father stands out in my mind as a very strong influence in my life. He always described me as strong, brave and beautiful – after awhile I began to believe it! I never wanted to show feelings of weakness for fear of disappointing him, having always felt protected by him and his strength.
In those days there were no accessible movie theaters, social halls, churches or other places for me to go to socialize, and certainly no curb cuts for those who used wheelchairs – nothing was accessible! So my dad looked for other things for me to do. He would drive me to Ft. Meade, Md. with a USO group to sing for the WWII soldiers, and even tried to get me on the Arthur Godfrey Talent Show. (I’m sure most of you are way too young to remember that show!) I even sang “Together” live on a local radio program for teens.
To be continued….
Visit next Tuesday (March 27) for Part II of Colleen’s story
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