Nicola

Nicola’s scoliosis was first noticed at a school medical when she was 7 years old. She had two fitted plaster casts from shoulders to waist, with their trademark tummy sized hole missing, and several removable braces over a period of 11 years.

“My hospital stays were at The Royal National Orthopaedic in the mid-late eighties and the staff there made it far less scary for me than it could have been. My consultant was a Mr Morley, who I remember to this day for his support and humour, and my curve was thankfully rectified without surgery. I was discharged from treatment at the age of 18 and I’m forever thankful for it allowing me to lead a near normal life ever since,” said Nicola.

Nicola has written this short story about having scoliosis as a child, finding it therapeutic to write her feelings about having this condition onto paper.

 

Someone once said ‘to stand straight and tall, you must first be bent and small’. I decided when I was both bent and small that scoliosis was never going to define me.

I close my eyes and I am seven again, thrilled to have been asked by my cousin to be a bridesmaid. My Mum lifts the dusky pink dress out of the box and I gently touch the embroidery that runs in perfect straight lines on the top half, from neck to waist. Intricate stitches stand out in pink and green, and I notice tiny silk roses dotted here and there. It is quite simply the most beautiful dress I think I have ever seen, so soft and delicate. My mind races about how it will look, what shoes I might wear, and whether I will have my hair up or down. My Mum smiles as she gestures to me to try it on and I am brimming with excitement.

I try to read her expression, as I look down at myself in the fairy tale dress. My smile is wide, as my hands run up and down the smooth material, once again my fingers catching on the exquisite stitching. My Mum seems confused though, as her eyes settle on my chest and the lines that are now standing quite proud. But they are not straight. They do not run from top to bottom, up to down, point to point. All I see is that each one has a distinct curve and my young mind quizzes itself as to how that could be. In the box, the lines were straight, but now, with the dress resting on my little body, they are not. I look up, and my eyes reach my Mum’s. She smiles, but it isn’t the wide smile I had but a few seconds ago. Her face is concerned and confused; it is worried.

The clock in the hospital waiting room ticks so loudly it is as if it is the only sound in the world. The lady sitting in the chair opposite us is wearing a daffodil yellow coat and it hangs tiredly around her shoulders. I think about how old she might be as her hair is peppered with grey and I wonder if she is a Grandmother. If she is, does she have a bedside drawer filled with sweets like my Nan? Or maybe she cooks egg and chips on a Saturday afternoon for her Granddaughter like my Nan does for me. I smile at the thought. Maybe she also tells her Granddaughter not to worry about the stitched lines on the dusky pink dress, that do not look quite as they did when they were in the box. My name is called and I stop thinking about the Grandmother in her tired daffodil coat. We walk into the consultation room where there is an aroma of disinfectant, and I wrinkle my nose at the smell.

I think that scoliosis is a funny word. A long word that is hard to pronounce. Maybe it is a grown up word I just haven’t heard of before, although my Mum doesn’t seem to know what it really means either. I decide that it will be fine as we will just learn about it together. My X-ray is hanging on the light box and I almost giggle when I see my bones, like a funny little skeleton having had its photo taken. I know what part my head is and I can see lots of straight bones going from side to side across my chest. My eyes stop as I take in the image of the big long bone that goes from top to bottom, almost taking up the whole X-ray. I tilt my head to one side to look at it from another angle and I think it reminds me of a big letter S. I’m almost hypnotised by this big bony letter. It is actually inside my body and I think that is amazing. I can hear the doctor talking to my Mum, but I just can’t stop looking at the X-ray. Aren’t we humans just the cleverest of things.

I learn quite quickly that the big bone isn’t supposed to look like a big letter S. It’s supposed to be straight, more like a big letter I, and all my friends and family have that. I don’t though, and nobody seems to know why that is. I conclude this to be the reason the lines on the dress do not sit just right. I have to bend and touch my toes for the doctor, and I feel his warm fingers trace my spine as I stand in front of him. He runs his hands across each shoulder blade, as if he is quietly assessing my frame, measuring me, looking for differences. Sometimes it tickles and I laugh. He makes lots of notes with his dark blue pen, which is just like the one my Dad uses when he writes special letters. I can’t see what the doctor is writing, but I don’t think it’s a special letter. As he makes me laugh again when his fingers tickle my skin, I look over at my Mum, but she isn’t laughing. She is looking at the floor, and she’s wringing her hands.

It is quite the adventure to stay in hospital I decide, but I am also very nervous. I notice that the ceilings are so high, and there are not many windows. Rows of beds are placed in one big square room, all with the same light blue blankets placed on them. I hold my Mum’s hand tightly as we are led to my bed. It seems very high and I am already worried I will fall out of it during the night. There are other children walking around, some in wheelchairs too. I’m not really sure why I’m staying here, as I do not feel ill in the slightest.

The night seems like an endless dark void of hours and hours. I brought my teddy, Toby, with me and the tall nurse with fire red hair has given him a wrist band with his name on, just like I have. I am on Coxen Ward and my date of birth is 21.5.79. I read this on my wrist band time and time again, as it stops me worrying that my Mum is not at the hospital any more. I don’t sleep much as the little girl in the bed opposite me, Jodie, cries a lot. I notice that she is tiny and doesn’t stand straight, in fact one of her shoulders is almost curved around toward her chest. Her frame looks crushed, and when the nurses help her turn over in bed, it seems to give her lots of pain. I screw my eyes shut tight each time she cries out, and hug Toby close to me.

It is explained to me the next day that I am going to have a plaster cast fitted soon, and it will act just like a brace put round the trunk of a young tree to help it grow tall and strong. I like this image, and imagine I will grow as tall as an Oak, standing straight and proud. I just want this part to be over quickly, I don’t like being in hospital and I miss home. School at hospital isn’t the same as normal school, and the lunches which arrive on scratched plastic plates are really not nice. I am glad when the doctor comes and tells me that it is time for me to go to the theatre.

The theatre lights are bright and I squint my eyes against them as I lie against the coolness of the bed. It’s not a warm soft bed, and I think the metal feels hard as there is no mattress. There are several doctors and nurses walking around and they all seem to have an important job to do. A kind nurse gently pats my hand and explains that my body will be put into a position and will then be plastered into place. Her words are a bit muffled in my ears as I am not really listening. I am mesmerised by her sparkling green eyes and how they perfectly match the colour of her face mask. She explains that it might feel a bit strange but that it shouldn’t hurt. I nod, but I don’t really understand. I think that I’m about to cry.

I notice that there are straps at my feet and a plastic chin cup resting on my chest, also with a strap attached to the top of the bed. The kind nurse with green eyes starts to fasten the cool leather around each of my ankles, and also the cup strap under my chin. My skin feels warm and I start to breathe a bit quicker as a strange sensation takes over. The straps are tightened and I feel my legs straighten involuntarily and the chin cup pushes my head upwards. I close my eyes and I feel tears leave them and roll down my cheeks and trickle into my ears. It tickles, just like when the doctor touched my skin, but this time I don’t laugh.

As my fragile little body is stretched straight, the doctors and nurses begin their important jobs. Hot wet plaster is wrapped round and around my chest and back, and its smell is overpowering. Tiny splatters are thrown into the air and land in my hair and on my face. I can’t wipe them away, and they start to feel heavy on me as they begin to dry. I try to take myself away in my mind to somewhere where I can no longer smell the acrid plaster or feel it starting to suffocate my skin.

I am back on the hospital ward a few hours later, and I try to sit up in my bed but I soon realise that I need help to do this. The cast is like a heavy plaster vest, shoulders to waist, and it is too heavy for me to lift myself away from. I decide not to speak to anyone around me, as I do not want to risk crying again. I do feel a sense of relief however, that I can leave this place soon, as it is so full of children who carry such sadness and confusion within them.

Returning to school I know that I am different. My friends ask what is wrong with my spine most days, and why I always wear my hair long to cover my shoulders. I am excluded from PE and I have to stay in the shade on hot summer days when my classmates play on the school field. I have stones thrown at my back in the playground. The other children cannot see my cast, but some know my chest and back appear hard to the touch. A strength test ensues – touching leads to prodding, prodding leads to punching, and punching leads to stones. My cast can take it, and it doesn’t hurt me, but my mind is not always so resilient.

As I sit quietly, watching my friends on the field, I think about the dusky pink dress. The feeling it gave me when I touched its fine material, and the wonder I had of how it would look with its tiny silk roses against my skin. I look down at the bulk of plaster that sits where the dress should be, and a wave of deep and painful sadness hits me like a physical strike.

But then, all at once, I feel something else that is far more powerful. I think of the Oak. The tall, strong, proud Oak tree, helped once by a brace, shaping it into what it’s become. In that split second I promise myself that I will always be proud to have been different as a child, and it would not be something I was to ever feel ashamed of or weakened by. Scoliosis would not determine who I was or what I could do in life, and I would always strive to be stronger than the curvature of my spine.

I smile as I continue to watch my classmates play and run in the warm sunshine and conclude that this is where I am meant to be. ‘Bent but never broken’, maybe sometimes sitting in the shade, but still with the strength of the sun, never faltering, always at my back.

If you would like to talk further about any aspect of scoliosis, SAUK is here to help; please call our helpline or contact us via post or using our e-mail address info@sauk.org.uk.