I was about eight years old when the school nurses came to do their annual health checkup. They urgently wanted to speak to my Mother after my checkup. My mother just had one of her back operations and could not come to the school. I was told that my back was crooked and urgently needed to see our family physician, who would advise what to do next as I was still young. This was the first time I heard about scoliosis. I did not know it then, but scoliosis became the health issue that rules my world. My journey had begun.
Test for Scoliosis - the Adams Forward Bend Test
I thought it funny because all they did was bend me over and ran their fingers down my spine. They did it a couple of times before wanting to speak to my mother. Unbeknownst to me I inherited this crooked back from my mother.
The rollercoaster had begun and I was on it and could not get off even if I wanted to. I was scared as I had seen my mother suffering and having an operation. It ruined my life as I could no longer be a child and play like other kids did.
We went to see our family physician and at first he said it is not that bad as he measured the difference between my left and right body with a ruler and how much my shoulders did not line up. He said it is Scoliosis. He made it off as trivial and I started to hear the one phrase I would hear my whole life through:
“You just need to suck it up and live with it.
It is not that bad.”
After a while with my mother’s insistence he referred me to the Scoliosis Clinic at HF Verwoed Academic Hospital in Pretoria, now known as Steve Biko Academic Hospital. My journey of once every 6 months in the beginning and later on every three months had started. The up and down driving began from Harrismith to Pretoria for checkups. It was a 3 hour drive there and another 3 hours back. Normally we left before 5 in the morning and came back after dark.
We had to be there before eight in the morning as it was a question of first come first served. We would sit in the queue, then register, then sit again in another queue to pay. My mother had to supply proof of my father’s income as we would pay according to his income. By then my father would disappear to go watch a movie or visit his sister.
X-rays for Scoliosis - a new nightmare
Then I had to go for x-rays which was a nightmare. They would push and pull me to all sides. They were firing instructions to stand up and hold your breath. Firing instructions to turn so they could take X-rays from all angles, back, front, sideways left, sideways right. Still not enough and I had to get on the table, where I had to lie on my back, then on the side with wedges between my legs. Another round with wedges in my sides, turn around to the other side as well and hold your breath. Being crapped on when you could not stay still enough or keep your breath long enough.
My mom would wait in front patiently knitting or crocheting while I disappeared into the nightmare. When they finished pushing and pulling and shouting, I could go and sit with my mother where we would wait for the x-rays. When they finally called my name I could receive my life sized x-rays.
Back into the never-ending passageways to go and wait in another row. There you sit and wait again. Sometimes my dad would pitch with a cold drink to see how far we were and then he would disappear again. It was a waiting game. Finally they will call your name and you go into a room, change into the hospital robe with the ties at the back. Then you are poked and prodded by the orthopedic surgeon and the students while they are talking about you as if you were not there and you could not understand what was going on.
Determining the treatment by using degrees of curvature
The surgeon drew lines on the x-rays on 3 places between the vertebrae and then drew some more lines and measured that to determine the curvature.
The degrees determine the severity of your Scoliosis and your subsequent treatment. These degrees were all that everyone was always talking and/or asking about.
First I had to bend over so they could compare the visual signs on the outside of my body with the life size x-rays. Talking about the different curvatures saying 34 degrees Lumbar and 36 degrees Thoracic and a hump (Dorsal Kyphosis) forming at the top due to the spine twisting. They even talked over my mother and we were mere spectators. They used terms like “Juvenile idiopathic scoliosis” and told my mom that I might have inherited it from her and that I was growing too fast as I was taller than other girls my age. I had an S curve and that was all I could remember.
Social nightmare
This was and is an Academic training hospital. As a girl I was so embarrassed as I were made to wear a hospital gown which opened at the back and then in full view of a room of students, at that time mostly male, I had to bend over so they could look at my back. The gown obviously fell forward and I could just as well have been naked. Some students giggled at my discomfort and I blushed, which made them laugh even more.
Then I had to lie down and they would use a metal prod on my feet, ankles and knees to test my reflexes. Another test was to stroke the sides of my legs from outside to inside. This tested which nerves were affected. The problem was that they asked if the legs feel different while stroking both sides and I would reply no and they said it could not be. They studied the x-rays again and said I am wrong as the x-rays don’t show damage in that specific region. This remains one of the things I hate as both sides lost feeling on numerous places but according to them it was just not possible and I was not telling the truth.
My social nightmare intensified. The little bit of childhood I had left was snatched away and my hate relationship with my back began.
Information on Scoliosis
The only information I could find about scoliosis was plastered on their walls, showing curved spines and colored pictures of the zones on my legs that they were stroking.
I was terrified at the pictures and what was happening to me. I went to the library to find out as much as I could, but there were not a lot of information around our small town.
What I did learn was that I had all the different curves which they called a Scoliosis S-curve due to the shape of the curve as well as the top of my spine turning inwards causing a hump. This resulted in my one leg being shorter than the other one, my ribs on one side touching my hip. My shoulders on different levels and my shoulder blade sticking out. My prognoses was that I would most likely be paralyzed at age 16 as my progression was so fast.
At age 12 I had to wear a brace. This is one of the treatment options offered to young patients as it is believed that by wearing a brace the progression of the curvature can be stopped.
The making of the brace was another nightmare for me. They put me in a type of vest or stocking, then wrapped me in gypsum very tight with a piece of rubber at the back. Before they start wrapping me they placed small wedges were the curves are. The frightening part was when they had to cut it off after it hardened. That is what the rubber was for to protect my back as they were cutting with an electrical grinder. I heard this loud machine and saw the blades and the next moment I felt the pressure and the sound while they were cutting it off. Then they wiggled the hardened cast off and send us home.
At the next appointment in 3 months I went back and they presented me with this hard as a rock, rigid plastic brace about 2cm thick with a rubbery lining and small wedges inside that press on specific places in order to push my spine in a certain direction to straighten the curve.
My new buddy went home with me. I was supposed to wear the brace 24/7. It was hot and uncomfortable, it chaffed me and I had rashes underneath. My mother had me put talcum powder between the brace and the vest. It pushed my spine and was so tight. It fastened at the back.
My new nickname: Freak
Obviously the word spread around and the boys would hit me in my stomach and called me a “Freak”. One boy broke his fist on my stomach. I was no longer allowed to play any sports as I was a risk for the other kids to get injured. I was devastated. I had to stop playing netball. I was not allowed to do anything a young kid would do. I could not play with other kids or run around and have some fun. I had to stop swimming as I was not allowed to take my brace off. I could only take it off when I took a bath.
I was already socially insecure. Everywhere the townsfolk would see me they would ask: “Are you the one with the back?”. I became faceless and turned into the local freak show with the back. Even today, 40 years later the people of Harrismith only know me as the child with the back. Nothing I did or achieved will ever be more than just being the “Freak with the back”.
I resented everyone, for they could have a life and I had to sit on the sidelines. It felt if my life ended and up to today I still struggle to tell anyone when my back hurts. As I sit here now I realize how much it changed me and shaped the person I am today. I am my back and my back is me, but I am not a freak show.
I am more than my back and scoliosis
I am so much more and struggled my whole life to feel that I am more than just my back. The problem is that I have constant nerve pain in my back and legs which I don’t tell anyone about because I don’t want to be known as the “Freak with the back”.
I want to be known as Kesha, a creative soul with who you can have deep conversations and someone that you would want in your life. I have a lot to offer even if I am not able to do a lot of physical stuff.
Yes, I have limitations. I cannot do what I want and had to realize that the things I wanted to do the most in my life I would never be able to. My dream was to become a marine biologist, but was told I would never be able to. Horse riding and skydiving are taboo. I have to think constantly about where I put my foot so that I do not fall down, but this is my life and I am only now realizing that there are so much more that I am able to do.
Walk this journey with me as I discover myself.
There are a number of ‘warning signs’ to look for to indicate that perhaps you or someone you know has scoliosis.
Should you notice any one or more of these signs, you should consult a trained Scoliosis Clinician for a full assessment.
The quicker Scoliosis is detected the better the results of treatment.
ScoliScreen
ScoliScreen is a free online screening tool for the signs of scoliosis.
