Carol's Story

i have club feet
I was born in 1944. My great-grandmother was the midwife as the doctor told my great-grandmother it would be a long while before I delivered, so my grandmother just went back to the bedroom and delivered me. I was born at home as we lived in a rural area and my parents could not afford a hospital birth. The story is my grandmother said to my mother did you see the foot and she said, “yes.” My parents took me to a Catholic charity hospital. The first orthopedist in the city was the man who did my surgeries starting at age 1 and continuing every year for three more years. I had physical therapy thereafter for many more years. I just remember a lot of pain when I was fitted with new shoes that were required every 6 months. It felt like a nail was being driven into my left foot. I also remember my older sister hissing to me with a great deal of hate, “if it weren’t for you, we would have a television set.” I never told my parents about this. Both what my sister said to me and the pain I endured. I knew the new shoes that often and the physical therapy were more than they had the money for.

I was always teased as a child that I was a baby because I could not keep up running. I wanted to run fast more than anything in the world.

In junior high, I was a cheerleader and in high school, I was a majorette. I was so exhausted trying to be normal that I became rebellious and “dropped out” so to speak, learning to hang with the wild crowd with drinking alcohol and smoking. Boys never asked me out when I was voted most popular my second year in high school and a majorette and when I “dropped out.”

My mother made me wear the high top shoes that the doctor recommended until she relented to oxford tie shoes in junior high and high school. I tried high heels as soon as I had my first job and figured out that would not work. So I went back to orthopedic shoes, which back then were “granny shoes” or shoes that looked like men’s shoes. One day I was walking along and a young woman that I would have liked to be friends with, looked at me and my feet in disgust. I swallowed hard and said, “Yes, those shoes are horrible aren’t they? I really hate them, but I have a club foot and I have to wear them.” She looked at me surprised and said “I didn’t know that!” We became best friends.

I got tired of never having any boyfriends so when a married man asked me out I went out with him. He got me very drunk at the age of 18 and then had sex with me. I thought I was a whore and so when all his friends asked me out, I let them have me as well. Finally, I met a man who was 7 years older than me and we went out a while and we had sex. I got pregnant and he married me. I had a very painful childbirth. After I started trying to be a mother, I felt my life was passing me by in poverty and diaper changing and drank even heavier. I was divorced and remarried again and again. I felt that the men who were attracted to me had something wrong with them because they were attracted to me. I struggled through and got a degree with the help of the state government paying my tuition and books. Starting in 1965, it took until 1971 to get a degree. Then I realized I had too much pain to be anything but a clerical worker anyway with its constant sitting and so what was the point. I sobered up in there and just lived with my pain level. I never seemed to be able to get health insurance because the job situation would require more walking than I could handle even as a secretary. Thus went my life until I became severely disabled with club foot, meralgia paresthetica, and reactive airway disease. Then I had Medicare health insurance and I tried various braces and shoe lifts to equalize my legs. I was advised to have a triple arthrodesis. None of the braces or shoe lifts helped. It was club foot pain and back pain all the time. Yoga was the only thing that helped. I also had a knee cap that if I hit it against something on the side of it would pop off and I would fall to the floor with excruciating, screaming pain. My right ankle sometimes (the non-club foot ankle) would sometimes mysteriously give way and I would fall to the ground. If I was in public and someone would rush up to help me, I would get very angry at them--I was so humiliated. I was often told that my handicap was minor that there were a lots worse off than me. I always resented that when it was told to me by a non-handicapped person. One day a lady who was studying to be a disabled child’s teacher told me that my handicap was minor. I told her, well, before you say that would you spend a day walking around on the side of your foot and then tell me that. She looked surprised, and said, well, I guess it would be.

The most debilitating thing about the club foot is the way it makes you tired. I read once about a person who had been normal and then had to go into a wheelchair. He said the thing that surprised him the most was how his sleep changed. He went into a far deeper sleep than he had ever had as a normal.

About 10 years ago, I could no longer have sex because my right thigh (the good side) would go into severe muscle cramping when I became excited. So I am celibate now with occasional light masturbation. I don’t even attempt to find a partner because I feel it would be unfair to ask someone to have to deal with my disability and not have normal sex. I oftentimes have severe muscle cramps with a day of activity, back, leg, and foot cramping that is only alleviated by making the muscle bear weight or work. When I walk a lot, the arch of my right foot will itch for several hours afterwards.

I am getting so that I cannot do the thing I love most–-which is garden. If I do it for over 4 hours, then I have to slide my club foot for several days afterwards because the joints in the foot are all arthritic and very painful with overdoing it. I also know that I have bad hips and I have to walk up and down stairs sideways. I love to read so my elder years might not be too bad, but I will really, really grieve the loss of gardening and mobility in general. It has always been painful mobility, but it has been mobility. I know my independently mobile days are limited and I will regret losing the ability to walk.

Added on 27 May 2006

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