My scoliosis saga, part 1

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Scoliosis.... Curvature Of The Spine

Joan at 10 years oldScoliosis showed up at an early age, but my mother refused to notice. When I was four years old, one of her sisters forced her to see and acknowledge that my body was not straight.

It was like yesterday, sitting on hard brown wood chairs at a military hospital, waiting and waiting to see a doctor and then being shuffled off to x-ray to wait and back to the doctor and waiting some more. I can still feel the boredom of the ordeal. The doctor referred my parents to a children’s orthopedic hospital in North Carolina—the North Carolina Orthopedic Hospital (NCOH) located in the town of Gastonia.

NCOH.

In April 1962 I entered NCOH at the age of eleven. My dad was in the Air Force, stationed at Seymour Johnson Air Force Base in Goldsboro, North Carolina, about a four or five hour drive one way from Gastonia. Visiting hours were two hours on Wednesday and Sunday afternoons, and due to distance, I saw my parents only twice a month. Children were not allowed to visit, therefore I did not see my twin brother for a year. I adjusted to being alone, and only had difficulty during Sunday afternoon visiting hours on the weekends my parents could not come.

The first day at NCOH.

It seems like yesterday when I first walked the old musty corridors of NCOH toward Ward C, which would be my home for over a year. As we came closer to the nurses station that separated Ward C and Ward B, unfamiliar odors assaulted my senses. Huge wooden wheel chairs, and stretchers—some piled high with bed pans—lined the sides of the corridor walls.

I vaguely remember a ruckus with the station nurses as to my placement. Ward B was for younger children, and Ward C for older up to 18 years old. The station nurses wanted to place me in Ward B, but the head nurse, Mrs. Putnam, stood her ground and Ward C became my home. I was the smallest occupant of Ward C.

As I cautiously walked into Ward C, I was taken aback and confused. Girls were everywhere. Some “drove” the big wooden wheel chairs I’d seen in the corridor, some wore casts that wrapped around the back of their heads and chins and stopped below their hips. Is this who I was? I was one of them? I did not understand.

NCOH – Ward C Real Estate & the Frame.

Ward C real estate consisted of an approximately fourteen bed open ward and three porches. A Side Porch held six to eight beds with a door leading out to a large balcony. The three-bed Middle Porch, a home to fight for, was at the far end of the open ward and had a door leading outside to a ramp. The four-bed Back Porch, just past Middle Porch, had it’s own bathroom—a couple stalls and a sink. The choicest spot on the entire ward was the bed in the little alcove behind that bathroom. It was THE place to live on Ward C. And in due time, it became mine.

I started off two beds from the nurses station in the open ward, out in the open for all to see. I quickly learned to live within my own world which consisted of a narrow hospital bed, a hospital night stand which housed my clothes, and a shoe caddy which I brought with me as instructed to hold “stuff” at the head of the bed. It became a functional headboard.

I went to bed the first night feeling sorry for myself because I did not have a pillow. Frustrated, I tried to improvise by using my new dirty clothes bag stuffed with my dirty clothes as a pillow. One pair of dirty clothes for a 50 pound 11 year old didn’t make for a good pillow. A real pillow was found for me the day I was no longer allowed to use a pillow, and it turns out the last day I ever wanted to use a pillow; the day they delivered a frame to sit on top of my bed, and which I was required to sleep on at night flat on my back. My great grandmother and me at EasterYou can see my neighbor’s frame on her bed in the picture to the left. The frame was made of metal covered in canvas. It ran the length of the bed, positioned in the middle, leaving 4 or 5 inches of bed on each side. There was a hump built into it near the top, according to the rotation of the spine. The hump on my frame was so high I could store my belongings under it.

I wondered two things when the frame arrived. Why did they bother looking for a pillow if they knew I wasn’t going to get to use it, and would I fall off the frame during the night? Certainly I would. Nurses assured me I would not roll off. During rounds at night nurses assured all scolio patients with frames were on their backs.

The Assault on My Nature.

My first “issue” with my new surroundings, aside from not having a pillow, was the gross lack of privacy for personal hygiene. I was the girl who wouldn’t use the bathroom at school lest someone hear me.

The bathroom was comprised of three rooms. The first room held the bathroom sinks, stretchers piled with bed pans, and toiletry supplies. the tall bath tub at Ward C The middle room housed the one bath tub and toilet stalls, which thankfully had doors. The bath tub, which required a step stool to get in, was to the left of the stalls sectioned off by a curtain. A curtain! The third room was a linen closet, which housed towels and sheets to make our beds. A hospital where patients changed the sheets on their own beds? Yes. We made our own beds every morning, and changed them every Saturday. There weren’t any fitted sheets either, they were all flat.

I adjusted quickly. When the nurses rolled those stretchers loaded with bed pans down the ward at dawn, I hopped out of bed and hit that bath tub before anyone else got up. I became an expert hospital bed sheet changer, and went into that linen closet the night before to choose the newest and brightest sheets I could find.

Typical days on Ward C.

A typical day (after my bath):

  • Breakfast. (We played with the grits, bounced them off the walls.)
  • Physical therapy (PT) with other walking scolio patients. The goal was to loosen us up and if possible find correction without surgery. We assumed the end result of PT and casting was to get the curve straight enough for surgery.
  • School lasted until lunch. If we could walk, we did. Bed patients went to school bed and all. School was 12 months a year, no vacation time. Surgery was not an excuse to get out of class. The teacher would just come to us.
  • Lunch.
  • Rest.
  • PT for walking scolio patients, again.
  • Free time.
  • Supper.
  • Free time.
  • BM (bowel movement) roll call. I am not kidding. The first few times they called out Williams I refused to answer. First because I thought it rather crude to be called by our last names like we were a bunch of boys, and second because it was not any of their business if I had a “BM” that day or not. Another assault to my nature to which I had no choice but to yield.
  • Lights out at 9 PM. (Wow, at home bed time was 8 PM.)

Friday Night & Saturday Morning:

  • Every Friday night and Saturday morning we got soft drinks. While everyone else whined about it, I was ecstatic because the only time I got a soft drink at home was at a movie as a treat.
  • Every other Friday night we had “orders”. We could order something to go along with our drinks. One of my friends would order a bag of Lays potato chips and I’d order chocolate ripple ice cream. The ice cream was the dip for the potato chips. Was it ever wonderful! (Today a Lays potato chip would break in that dip!)

Sundays:

  • Every Sunday morning I went to Sunday school in the auditorium. A different church in the community presented Sunday school each quarter. I cannot tell you one thing I learned from the different lessons. Even when I could walk, I took my bed so that when I got bored—and I always got bored—I could nap. Nevertheless... the Spirit of Jesus met me in the hymns that we sang. The Old Rugged Cross, This is My Story, Trust and Obey, and In The Garden are songs that reached down inside of me. I sang those four songs with such gusto that the boys on the other side of the auditorium said they could hear me sing. It was In The Garden that caused me to want to know Jesus intimately.
  • Visiting hours.

Ward Walk.

Every Tuesday morning the doctors made rounds—Ward Walk. Every girl who could stand would do so at attention, half naked, with our backs to the doctors, waiting for them to come to our bed. Our two piece “outfit” was simply two pieces of material with strings running through them. The bottom looked like a diaper, the top wasn’t much different, it just tied around the neck and back instead of around the waist and hips. In 2005 the outfit would be considered modest, but in 1962—we may as well as been naked. I never did adjust to the attire.

Acutely aware of my virtual nakedness and standing at attention with my legs and feet just so, the palms of my hands would get sweaty as the team of doctors and nurses came close to my bed. I listened to everything they said as they talked about me as if I was not there. I complained about the doctors to my parents in letters, letters which were always read by the administrative office before they were sent out. Sometimes the admin office included explanations concerning the content of my letters in with my letters to my parents. I didn’t miss the fact that the doctors began to step away from my bed before they discussed me.

As a result of Tuesday morning rounds, Tuesday nights we gathered to hear who would be recipients of “procedures” the next day (such as casting), or surgery at the end of the week. We wanted to be on the list because to be on the list meant we were closer to home. I was at the hospital, the first time, just over a year and that was a short time. Most girls stayed much longer.

My turn.

From the memory of a traumatized eleven year old — the stretching machine was the shape of a rectangle made of three inch wide metal bars with two or three horizontal bars spaced evenly. Traction devices were hooked to both head and hips. Perhaps this is what kept us from falling through to the floor. At some point, a stocking liner for the cast became my clothing. The traction devices in place, were cranked and the spine stretched. The wet plaster was applied while in the stretched position.

I took physical therapy for four months. Then during school one Wednesday I was called out to return to the ward. Plans had changed and before I knew what hit me I was laying on a cold metal stretching machine with the smell of plaster in my nose and the cold wet of it being wrapped around my body. There was no time to shave the back of my head first in preparation. And worse, there was no whole body “last bath” to enjoy. I wouldn’t see another whole body bath for at least twenty months.

Mary Dodson Deal and me, me wearing my second localizer cast.I was laying on my bed on the Middle Porch, smelling that cold plaster, feeling like I was encased in cement, when the girls came rushing in after school looking for me. The seasoned localizer cast wearers instructed me on how to eat and drink since my chin was now imprisoned. Go ahead and put your elbows on a table, join your hands together and lay your chin on them. Now push your chin up with your hands as you press your chin down into your hands and open your mouth while you are doing it. That is sort of what it was like, except you feel like you are wearing cement.

Most girls encased in plaster ate their meals laying across their beds. You see, the cast goes behind the head, under the chin and down past the hips — laying across the bed took pressure off the chin and hips. Of course we had holes for our arms to stick out! We could lay across the bed with our arms hanging over the side. A chair by the bed become the dinner table. But I didn’t like to eat horizontally and quickly learned to open the top of my mouth in lieu of the bottom half and ate sitting up. I did have to stretch my neck up a bit like a little bird reaching for food from it’s mama.

Changes due to the localizer cast.

A few new things the cast brought into my world:

  • Could not feel clothes around my waist
  • Knitting needles did more than knit, they scratched (I was lucky I could knit as it legally gave me an NCOH banned back scratcher)
  • A bath was taken in one inch of water
  • Learned tricks to take pressure from the cast off the hips temporarily
  • Mirrors became tools to see with, a most precious possession housed in our shoe bag headboards
  • Had to turn the entire body instead of the head, the incentive to become proficient with a mirror
  • Could only bend from the hips... not the waist (which became forever after surgery)
  • The nakedness of Ward Walk was no longer an issue

The Alcove.

My parents and me, in the best spot on Ward CDid you notice above that I mentioned my bed was on the Middle Porch? I moved from two beds away from the nurses station to across the room in the middle of the open ward, then to the Side Porch for a short period of time. Before five months was up I was in one of the prime spots of Ward C real estate. It was from there that I moved to the alcove on the Back Porch. How did I get such favor? I can’t help but wonder if it was because my daddy was so dad burn charming and cute!

Stress begins to show.

At some point during my stay on the Middle Porch the stress of my situation began to manifest. I began to make humming and other such noises. I reckon it was my way of dealing with life. I still do it at times... and it is evidently catching because some have caught themselves doing the same after being subjected to my odd little ways for a period of time.

Fun Stuff.

In the middle of the trauma, I was also having fun. For example:

  • At Christmas time the Shriners brought Santa Claus to see us, bringing us each a gift for which we had asked. Per the suggestion of my sixth grade teacher, I asked for and received a dictionary.
  • The Lions Club provided us with a watermelon feast one hot summer day.
  • Some of the girls of Ward C put on a skit mimicking our Tuesday morning Ward Walk. Because of our contrast in size, I was the junior doctor and my best friend, Mary Dobson, was the chief. Those were the days of Ben Casey doctor shirts... and we both wore them in our skit. Word got to the chief doctors what we had done, and we were invited to put the skit on at the Lions Club, where the head doctor was a member. (A trip out into the world!) The only thing I remember about the big day of our play is getting tickled behind the scenes, making a ruckus with the folding chairs, and laughing until everyone else joined in.
  • One Sunday afternoon several girls were totally surprised to be invited to the home of a girl whose family lived locally, for a special meal. I do not remember the girl, nor the home, nor the reason we were invited... but I do remember Canadian bacon. It was the first time I ate canadian bacon, and it was wonderful.
  • Some of the girls had a penchant for raiding the coke machines to feed their soda pop addiction. They would sneak outside and downstairs to visit a coke machine set up for out-patients. I tried it once and got caught—never again. A couple of the girls even left the hospital grounds and crossed the street to visit McDonald’s, the new hamburger joint. I didn’t do that either, but my daddy would occasionally bring me something good to eat after first sweet talking the nurses.
  • And of course there was the usual girls-will-be-girls type of things going on. Like a walking patient who got irritated with a demanding bed patient and fetched her some water out of the toilet. Well, such an action would be no fun if the recipient didn’t know the source of her water... so she was told. And she in turn ratted... which brought on a lecture from the nurses.

Surgery, the foster bed, & God.

That first cast stayed on for six weeks. Then another was put on. I wore it for four and a half months as they waited for me to turn twelve years old. I walked into the hospital with a 45 degree backwards-C curve and they got it down to 13 degrees. There were two older doctors at NCOH, and every so often younger doctors passing through. One of the old guys wanted to use rods on me, the senior doctor wanted the spinal fusion using bone. The senior doctor won out, no rod.

January 4, 1963 was the first stage of spinal surgery to fuse my spine from T6 to L4. Second and final stage was two weeks later. My right leg provided bone for the fusion.

me on foster bed, mom sitting with meThe foster bed to the left came in handy. There was a top and a bottom—in the picture to the left I am laying on the bottom portion. When it was time to turn over, the top would be strapped on like a sandwich and then the nurses would flip me over. Being flipped was a scary little adventure. Me on foster bed, mom sitting with meI knew that certainly I would slide out the sides during the flip... but I stayed in the sandwich each time.

While alone in the little room off the nurse’s station, on that foster bed, for the first time in my memory I was aware of God as a Father who loved me. He was very real to me. I was able to comprehend His love for me, because of my daddy’s love. I could move my arms down to a little table top connected to the bottom portion of the foster bed frame. me on foster bed, face downAlone in the room, I took my hand mirror and a ball point pen and on the back of the mirror, near the outer rim, attested to the love of my Father God.

The cast I was wearing before surgery was split with fresh stocking applied, and the shells then used after surgery. Note in the pictures of the foster bed that I am laying within the cast shells on top of the foster bed.

My right leg was in a full leg cast for two months. I was again put in a localizer cast, my third, and moved back to my bed in the alcove on the Back Porch where I would remain in bed for three months. Now I HAD to eat hanging off the bed, my dinner table a wooden folding chair. No sitting up. No standing. No bathroom... bed pans! Sponge baths.

One of the perks... having my bed (with me in it) fly down the old corridors to school, my hair blowing in the cool breeze.... courtesy of the Orderlies.

The first end.

Then came the day I got to sit up, stand, and walk for the first time in three months. The day was full of wonder. Since my right leg could snap like a tooth pick I had to be very careful.

One year and two weeks after I entered NCOH, I got to go home for nine months. Nine months plus the three months I’d been in bed since surgery makes for a year. One year in the same body cast. Don’t you know it got ripe in there? That was okay though, that little body might get ripe encased in plaster for another nine months, but it was a straight little body and that is what mattered. I was fixed.

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