My scoliois saga continues on this page

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Scoliosis, my saga continues...

It was time to go home after just over a year in the orthopedic hospital.

Home.

I was released to go home for nine months, to return to the hospital in January 1964 to have the localizer cast removed, and verify my breathing function was back in order after being “locked in” for 20 months.

Leaving the hospital in a new-to-me blue Mercury Comet, I was very careful with my right leg lest it break. The lectures from nurses on how the leg could break like a toothpick, and the memory of seeing one of the girls going home in a full leg cast after breaking her leg getting into her dad’s car, were uppermost on my mind.

The new Comet my parents purchased while I was at NCOH came with a new device... seatbelts. A new rule came with them—always buckle up. I obeyed then and I still obey today.

Everything New.

When I longed for home, I saw it as it was when I left it. But when I got home, it wasn’t home anymore. Everything was changed. I felt like a stranger.

Stuff was different. The accessories that decorate a home were new, like the big decorative ash tray on the coffee table. Who would think such a small thing would make me feel like I did not belong anymore? It hurt in a way I cannot explain. Joan in 1963, curlers in hair at the kitchen tableLife was lived at home in a normal way while I was gone, but I was not there living it with my family. I felt strangely out of place.

My parents had sweetly gotten a little fold out cot for me to lay on in the living room during the day, thinking I would be more comfortable laying across it like I did on the bed at the hospital. But it was rather rickety, not stable, and a lot lower than a hospital bed. I just knew it would collapse under me. It quickly fell by the wayside. I was more comfortable sitting in a kitchen chair like a regular person.

I reckon as strange as home was to me, I may have been strange to my parents and brother. They did not know what to do with me.

Charis, our Chesapeake Bay RetrieverThe biggest change to the household, and a good one, was Charis... my replacement for my twin brother, John. My uncle gave John a Chesapeake Bay Retriever, the runt of the litter born to his retriever. Charis already knew me when I arrived home, probably from smelling the dirty clothes my parents brought home twice a month from the hospital to wash. I was honored that sweet Charis filled my shoes.

Public school was almost out for the year when I got home, so it was decided it would not be necessary that I return to school until the fall. I passed the sixth grade.

In the fall I started the seventh grade. Some powers that be wanted to put me in a school for disabled children, but my parents wisely told them I was not disabled.

A Party.

A boy at school was having a birthday party and I was not invited. Somehow his mother found out about me and called my mother about coming to the party. I did not want to go because I felt like it was an after thought. My wishes were ignored and my dad dragged me to the base exchange to buy a nice boat model of some sort for a gift.

My mother had purchased a new dress for me, which I remember well. It was beige and white with a full skirt. I liked it. But I did not want to go to the party. My mother told me I had to go as I was the “guest of honor”, it was supposed to be a surprise. I knew better. To go to the party as “guest of honor” in my mind was a cover for not being invited... and it was stupid to me. I would not budge, my parents finally quit trying to force me, and my dad had a moment—threw and broke the boat.

I had heard horror stories in the hospital from girls who had gone home and returned, of how they were treated by other kids. I reckon I had my share of being made fun of because of the cast, but on the whole I did not have bad experiences with kids. My bad experiences came later, as an adult, from adults.

Vietnam.

Before I returned to the hospital my daddy received military orders for Vietnam.

I re-entered NCOH to have the year old localizer cast cut off my body. I began physical therapy (PT) to build my lung capacity. During rounds a younger doctor complained that my breathing function was not increasing as it should. The older doctor snapped back that if he had been in casts for as long as I had, his would not be either.

Even though I had been at the hospital longer than normal working on increasing my breathing function, it was not budging. Nevertheless, the hospital released me in order to join my family as we moved from North Carolina to Maryland to be near my dad’s brother while dad was in Vietnam. It was agreed that I would go to Walter Reed Hospital in Washington, D.C. for follow-up.

A Straight Body.

I got out of the cast and lived happily ever after in a straight body, right? No! My body was straight for a while, but I didn’t enjoy it as I lived in fear that my back would not stay straight.

Walter Reed Hospital.

The backwards-C curve in my spine caused my left hip to be higher than the right hip. After treatment, my hips were balanced. Yet, Walter Reed personnel were fixed on my hips and legs as they kept measuring my legs over and over and insisted one leg was longer than the other, and finally sent me home with a lift to wear in my left shoe.

At some point after my visit to Walter Reed, in my young 13-year-old mind I reasoned if I would lean to the left, it would keep that hip down. When I sat down or laid down I would consciously try to lean to the left by lowering my left shoulder.

Return to NCOH.

My mother started to notice something was not right in my shoulder area and took me back to the orthopedic hospital in North Carolina (NCOH). Though we were no longer North Carolina residents, they made an exception to see me again.

The doctors at NCOH had a fit over Walter Reed putting a lift in my shoe, compromising the integrity of their treatment. They admitted me for an exploratory surgery, but ignored what was happening in my upper spine. When I came out of surgery they told me they had not done anything, but yet I had pain for the first time. They explained they had taken fused bone from one area of the spine and braced it in a weaker spot, that was all.

Being alone at NCOH this time was awful. My dad was in Vietnam, and my mom and brother in Maryland. I knew no one. One of my favorite nurses, Miss Weaver, sent her nephew to visit me once during visiting hours.

Joan at 15 years old

A neighbor who was not aware of the jacket cast slapped me on the back and got the surprise of his life. As did kids when they bumped into me walking down school corridors. I admit I enjoyed that little surprise.

Shortly thereafter a new cast was put on. It went down past the hips, but only came up to my collar bone. With a blouse on, you would not know I was encased in plaster. One of the senior doctors did not like the way the cast looked and wanted to reschedule for a recast. However, a junior doctor pointed out that my mother was there from Maryland staying in a motel, and therefore due to her expenses, they should let me return with her. It was agreed and I was released.

Home again.

My grandmother didn’t like the way the cast looked. But because doctors are god-like and to be trusted to know what is best, the issue was not pressed by anyone.

My dad came home from Vietnam, but not the daddy who left. He was never the same. His new assignment upon his return from Vietnam was at a radar squadron near Winston-Salem, North Carolina. He was stationed there to be near the orthopedic hospital.

Crooked again, no longer straight.

Eight months after putting on that crooked cast, October 1965, it was removed on an out-patient basis. I remember when the doctors came in to see me after the cast was removed. With my back to them in that old Ward Walk stand, one commented to another that I was their mystery patient. Typically, they discussed my body like there was no person inside of it listening. They simply sent me home, to return for follow-up six months later. And I was shaped just like the cast I wore for eight months.

My straight body was no longer straight. Not only had the backwards-C curve increased to what it was at eleven years old, the spine also went forward. But they didn’t seem to notice. I was fourteen years old. According to medical records, the curve which had progressed from 13o to 36o, with this cast was now 33o. My opinion, based on living in the cast and my body, is that this cast is what caused my spine to go forward.

I returned to NCOH as an out patient until I was 18 years old. The last time NCOH measured the curve on August 6, 1968, it was 43o, two degrees under what it was the day I entered NCOH on April 3, 1962. One purpose of the scolio surgery was to keep from having restricted lungs when you grow up. All that, and my breathing function was less than 50%.

And so began a life of contending with respiratory infections and pneumonia, ever being conscious of breath. And ever conscious of not being straight. The combination of these two issues would prove too much for me to handle alone.

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