Living as a Writer with Scoliosis

It’s 1969, and I’m sixteen years old and standing in a small, bare room, attending a routine school medical at my school in Salisbury. I’m cold, and worse, I’m excruciatingly embarrassed because I’m in my bra and pants. The doctor glances at my back and brusquely tells me she’s going to refer me to my GP because there’s something wrong with my spine. Though I’ve been experiencing pain for some time, this is a shock to me. I assumed everyone had back pain.

A few weeks later, at a hospital in Salisbury, I see for the first time an X-ray of my spine. It snakes in an S-shaped double curve. The orthopaedic consultant tells me that my condition, which now has a name, scoliosis, is incurable.

Shift forty years later to 2009. I’m in my mid-fifties and consulting a neurosurgeon at Addenbrooke’s Hospital in Cambridge. I’m on my own, having told my husband not to come with me to an appointment that I assume will be a waste of time, yet another exercise in being told that nothing can be done. My back hurts from the waiting room seats and my guts twist with anxiety.

I’m looking at an X-ray, the first I’ve seen since the Salisbury one. The S-shaped curve has become more of a C-shape. The decades have dragged my spine over to the right side of my body. The image shocks and upsets me. I’m seeing inside the body I’ve become adept at hiding, even from myself. This is the truth in black and white: from roughly sternum level my vertebrae, those intricately carved segments of bone that guard the spinal cord and hold the torso upright, sway off sideways. My spine loops under the right half of my ribs before making a change of direction and heading back towards the sacrum. My lumbar vertebrae are perilously close to scraping against my pelvis.

I’m here because I know that something is badly wrong; I’m here because of chronic pain. I know its pattern intimately – after all, each day is similar. When I wake up, I’m fine. In my twenties, the pain held off until the evening. As time passed, it insinuated into the afternoons. These days I have an hour or so in the morning before it makes its presence felt. It has always lived in the same place, on my right hand side, just below my waist. On bad days, it feels as if someone has inserted the flat blade of a knife between my vertebrae and is waggling it up and down.

Chronic pain is relentless and exhausting. I would like to hand it over to someone else, just for a day. It invades every part of my life. I can’t use a baby sling, and my children learn very young to climb in and out of the pushchair without me having to lift them. I choose a restaurant by its seats, not its menu. Benches are impossible and any chair without a solid, padded back is going to be uncomfortable. My spine doesn’t hold me vertical so I need to prop myself up by making a cushion out of my coat or bag. Long journeys are an ordeal. I avoid carrying heavy bags, I choose lightweight handbags and empty my purse of coins. Sometimes I have to ask my husband to carry my handbag.

By the time I’ve reached my forties, I avoid activities that require lengthy sitting or standing still, especially in the evening – meetings, committees, parties, long-winded plays and concerts. I like a film to last no more than two hours. A matinée is preferable to an evening performance. The words ‘six-course tasting menu’ make my heart sink.

I buy clothes a size too big so they don’t ‘show my back’. That’s what women with scoliosis do. Tops must be loose or empire line. A jacket is useful to disguise the rib hump. There’s a twist in the spine as well as the lateral curve. One side of my rib cage stretches out, inflated, while the other is squashed up, the ribs squeezed up against each other like piano keys.

The type of scoliosis I have, adolescent idiopathic scoliosis, is generally diagnosed in the mid-teens. Scoliosis severe enough to require treatment is much more common in girls than boys, for reasons not yet fully understood. Genes can play a part. This is certainly true of my family – my mother’s spine was curved. The magnitude of the curve in the teens is a predictor for whether the condition is likely to progress. Double curves are more likely to progress than single curves.

Scoliosis is as much a part of me as having blue eyes and being able to spell. It won’t go away, so as far as possible, I shut it out. I don’t talk about it – after all, what is there to say? It’s a tiresome, dreary companion that has inveigled its way uninvited into my life and I give it as little attention as I can. There are some things I have a choice about. I can be a complaining person with back pain, or a cheerful person with back pain. I choose not to let scoliosis define me.

I try physiotherapy, yoga, Pilates and Alexander technique. All are useful but none combat the pain. I try a TENS machine, which helps for a while. When I write, I put a semi-inflated Pilates ball behind my back, which I adjust constantly to avoid sitting in the same position for too long. I retreat to the sofa or bed with my laptop when I can’t bear sitting at my desk. Writing is essential to me. Writing sends the pain to the back of my mind. Get absorbed in a scene and I stop noticing it. I can’t think about two things at once. When eventually I attend a chronic pain clinic, I discover this has a name: distraction technique.

I walk every day because walking seems to put my vertebrae in a better place. I imagine my poor, squashed bones re-ordering themselves. Sometimes I walk for ten miles; the exhilaration counters the weariness.

I stave off taking painkillers until I’m fifty because I assume I’ll have to take them for the rest of my life. But then I must, because I can’t cope. A low dose of amitriptyline takes the edge off and an anti-inflammatory helps too. Neither, used long-term, are without side-effects, but needs must.

By then, I’ve lost a good few inches in height. I used to be taller than my sister, but no longer am. I gaze up at my sons. I try not to look at my body, my crumpled-up midriff and especially the rib-hump. The term ‘hunchback’ makes me flinch.

I feel frightened of the future. The pain is getting worse, despite the meds, and the thought of what it will be like in five or ten years’ time frightens me. I’m frightened of what I will become. Chronic pain doesn’t necessarily make you a nicer person. I try to find out through my husband’s American business contacts whether there is any treatment for adult scoliosis in the U.S. I would go anywhere, pay anything to get help.

By the time I’m in the Cambridge consulting room I’ve been taking painkillers constantly for six years. Pain takes up too much of the space in my mind. When the neurosurgeon tells me that if he were to operate he would be able to reduce the curve by only fifty per cent, I don’t take it in. I can’t; I’ve been told so often that there’s no treatment that my mind shuts off. It’s only weeks later I think about what he said and even then I don’t dare hope. The possibility that my spine can be straightened is too marvellous to contemplate.

Over months of tests and appointments, my main fear is that I will be judged unsuitable for surgery, that the lifeline will be taken away. Spinal fusion for adults with scoliosis was at that time a new procedure and required – still requires – very major surgery. The curve is straightened and instrumentation used to hold the repositioned spine in place.  Fragments of bone placed between the vertebrae will, over time, grow and weld the fused section into a single, solid bone, stabilising the spine and reducing pain. I’m told the operation carries significant risks – of infection, blood loss, even paralysis – but I bat these warnings away. I want this.

I’m in surgery for six and a half hours – ‘skin to skin’ as a registrar afterwards gruesomely expresses it – and in the operating theatre for a lot longer than that. My spine is fused from T8 – L5. I have two long titanium rods in my back and a multiplicity of screws. My surgeon achieves a curve reduction of over fifty per cent. Sitting on the hospital bed, wary of the huge dressing, I carefully run my hand up and down my spine. My back is flat, the rib hump gone. I leave hospital several centimetres taller than when I went in. Just two weeks after the operation, the pain is noticeably diminished.

I can’t bend at the waist any more and it’s hard to look over my shoulder. The sudden alteration in body shape takes a while to get used to, but it’s miraculous to be tall and straight. I stop taking painkillers. I have to teach myself to sleep without them, so there are lots of broken nights and early mornings. I replace my wardrobe, though it takes me a while to stop buying garments that are too big. It’s wonderful to have a spine that holds me up, and even more wonderful to be free from pain. Going out for a meal is a pleasure instead of a torment (though I still avoid the six-course tasting menu).

I feel utter relief that my spine is fixed in place. I no longer have the loneliness of wondering how on earth I’m going to deal with it, if – when – the pain gets worse.

I know that I’m lucky to live in Cambridge, near brilliant Addenbrooke’s hospital. I’m lucky to have a GP who understands about scoliosis and referred me to a specialist surgeon. It was because of the immense skill of my surgeon and his team that the surgery went smoothly. I’m also lucky that clever scientists invented the internet, because now, at last, I can find out about the condition.

Through Addenbrooke’s, I meet other women who missed out on treatment when they were young, and who have since had spinal fusion or are considering it. We share a similar body shape – tall, thin, long-limbed – and we share memories too. We are a diminishing community because scoliosis sufferers are now routinely treated in their teens and twenties. I feel an affinity with these women. These are my tribe.