Bones

It feels a little perverse of me to wonder whether there's a food or cookbook angle to National Scoliosis Awareness Month which takes place in the June of each year. If I was being lazily obvious I'd tell you about Cooking on the Bone by Jennifer McLagan, an excellent cookbook which reminds us of what is sacrificed flavour and cooking-wise when we choose boneless fillets over cuts sold on the bone. And there exist hundreds of books extolling the virtues of bone broth (one of which is titled 'Game of Bones'), or how to avoid osteoporosis through diet, and why (or why not) a Paleo diet will save you. I enjoyed reading Bones: Inside and Out by the brilliantly-named Roy A. Meals, an eclectically artistic and scientific exploration of our skeletal physiology and the role bones have played in human culture. It's nearly six years old now (a lifetime ago in scientific terms) but holds up well. I reread it last week because I have skin (bone?) in the game.

Twenty-two years ago this June, my daughter, then sixteen, was admitted to Hinchingbrooke Hospital for surgery to correct the kypho-scoliosis that became apparent when she was thirteen. She required years of assessment and preparation before her surgeon deemed her ready to consent to such invasive treatment and the lengthy recovery that would follow. When I first began writing on WordPress, I published a post about this experience. It is a piece of which I remain proud, but unfortunately became homeless when I shuttered my blog. I've therefore decided to republish it here in the hope it might be of help.

But Tales From Topographic Kitchens is about food and cooking and food writing, you might protest, and you'd be right. Yet food writing can be shockingly divorced from the mechanics of the body, and I not only chafe against this, but against the restrictions imposed by this newsletter's beat. And I'm annoyed by my need to preface this post with book recommendations, but understand how wildly off-topic this post might otherwise feel for some of my readers. Consider my introduction a clumsy attempt to bridge that gap.

If I really wanted to peg this to the topic of food, there's much I could write about the experience of hospital meals when you're caught between childhood and adulthood. My daughter was nursed on an adult ward despite her tender age, where she was served food from a menu that didn't really reflect her needs or circumstances. Adolescence is marked by the search for an identity separate from one's parents, but illness can regress even the most independent teenager to a more dependent, comforting time. One way this often manifests is through food.

My daughter wanted nursery food: menu options that reminded her of school lunches and the meals I cooked when she was much younger. She rejected most of what was offered and, only after several days had passed, did a sensitive nurse think to bring her a menu from the children's ward. This delighted her as much as anyone can be delighted while lying flat on their back in a ward full of women some forty years older. (There was no adolescent or young adults' unit at the time.) She was served fish fingers, pre-formed teddy bear-shaped chicken pieces, toddler yoghurts (she received three instead of just one), jelly and ice cream, pots of neon-bright fruit salad, and baked potatoes loaded with beans or tuna. Her visitors were asked to bring in prawn sandwiches from M&S, a remembered treat from the days when both her great-grandparents were alive; this was what they gave her to eat on days out.

It's important that patients are nourished, particularly when they are admitted to hospital malnourished, are immunocompromised or elderly, have difficulty chewing because of dentures or a reduced sense of taste, are vulnerable to pressure ulcers, or have other comorbidities—all of which place greater demands on the body's nutritional resources and can impair its ability to absorb nutrients effectively.

What some food writers fail to appreciate, however, is the importance of getting calories—energy of any kind—into vulnerable patients in whatever form they are willing to accept, particularly when they have little appetite. There are times when we 'unlearn' how to eat and illness is one of them. Once patients have regained some weight and begun to feel better, nutritional intake can be fine-tuned. Those low-residue, high-calorie foods (often processed or ultra-processed) can be lifesaving in the short term. They are easier to chew, swallow, and absorb; they require less effort overall, which matters when energy expenditure must be minimised; and they provide the emotional and cultural comfort to which many people gravitate during periods of illness.

My daughter was an otherwise healthy teenage girl, but major surgery can render even the most robust person vulnerable to infection if they do not eat enough and lose interest in food. My nurse training emphasised this: if you are recovering from surgery or illness, you need extra calories because healing requires additional fuel. It was therefore critical that she ate three meals a day, even if they were not nutritionally ideal, with the aim of improving her diet as her appetite returned, encouraging her digestive system to work in a predictable and reliable manner. (It should be said that, after surgery, the alimentary tract can temporarily shut down and take time to resume normal function. My daughter was also so heavily dosed with opiates, delivered via a syringe driver, that nausea and constipation became significant problems.) Despite conscientious preventative nursing from staff and us, my daughter began to develop reddened skin on her feet, where the edge of her soles rubbed against the bedclothes. It was imperative she ate so as to reduce vulnerability to further skin breakdown. My priority? To ensure meals did not become a flashpoint and trigger for a perfectly logical rebellion by someone whose circumstances were otherwise beyond their control. And pleasure had to come into it, because God know, there's precious little of that to be had on a hospital ward. So we fed her whatever she felt like eating and eventually she began to self-regulate, srequesting and eating healthier, sturdier meals.

Once home, our daughter was prescribed bed rest and had to remain completely flat, only standing with assistance to use the bathroom. The only time sitting was permitted was on the loo. This continued for two months, requiring us and her siblings to effectively decamp to her bedroom to keep her company. She did not venture downstairs for ten weeks. Meals were eaten lying down, which further compromised the digestive process. They had to be carefully plated and were sometimes fed to her. They also needed to consist of foods that could be eaten with a spoon, with fingers, or easily managed with a fork. I took great care not to drop food onto her hair which understandably was challenging to wash. My Mexican chicken stew appeared on repeat, our ultimate comfort food. I learned to make it at the age of five from a Mexican woman employed by my parents to raise me, who offered me a similar sense of maternal harbour.

My daughter's bedroom was transformed from the private sanctuary so important to adolescents into something much more public; its door had to remain slightly ajar at all times. I tried hard to ensure that food smells did not linger after meals. I bought pretty new bowls and plates. Somewhere in my mind was the memory of Katy Carr learning how to live as an invalid in Susan Coolidge's What Katy Did—albeit without the book's insistence on noble, uncomplaining suffering. Its central message, however, remains a sound one: every effort should be made to keep the sickroom light, bright, airy, and aesthetically pleasing for its occupant. The 'sick room' should reflect its occupant, not the nursing process, as much as possible.

Two decades on, memories of this time rob me of my breath. Whenever I think of it, I am suffused with panic for my daughter, and my younger self. How on earth did she get through it? How did we? It feels unimaginable now, and yet people endure far worse. I think of the unnamed teenage boy who died after the same surgery just a few weeks before, and of the pain and frustration at his loss written across the faces of her surgeon and anaesthetist. We are very lucky. It was one of the most remarkable processes I've ever witnessed, and also the most terrifying.

Anyway, here's the full piece published below. I hope you find it interesting.

“The operation will consist of anterior release of the thoracic curve through double mini thoracotomy on the convex side of the right side of the deformity. Second stage will be posterior correction with multi segmental fixation system and two rods. The surgery takes practically all day.”

The explanation on this letter from my daughter's consultant neuro-orthopaedic surgeon made sense to me as someone trained to decode the mysterious and protective language of medicine. Surgery deals in the measurable, the objective and the recordable, flying in the face of the vagaries of the human body and its messy emotions. Some weeks after receiving that letter, we had a last meeting with her surgeon and his specialist registrar at nine pm on the day before the surgery, down in the reception area of the X Ray department, my daughter safely sedated and asleep upstairs. This meeting dealt with the less objective- a promise to do their best and an admission that sometimes things could go wrong- two weeks before a young boy having a similar operation had died of post operative MRSA. Our surgeon and his specially trained team- handpicked by him to manage the demands of a surgical procedure that used to be two-stage and now, thanks to his hard work could be done all in one, were all deeply distressed by this loss. We shook hands and I remember focusing on his hand in mine, steady, dry-palmed and cool. I felt reassured. I did not have doubts.

Nearly seventeen years earlier and pregnant with my daughter (my first child) I made a home and a garden and read Sylvia Plath- happy Plath, herself pregnant and writing about her upside down tumbling unborn child. In ‘You’re’, I homed in on her words: "Bent backed Atlas, our travelled prawn" and this image of a curled creature, the pale tracery of its spine against the darkness of the womb, had come to life in the smudgy early scan photos I brought home. The lightness and brightness of my daughters backbone were illuminated on that little screen then captured in a photo, the dark walnut of a heart and her own moon skull just like Plath’s baby which carried the weight of her hopes, just as my own unborn child carried mine.

Our spines are our midline, fulcrum and linchpin. They give us shape, hold us up and channel the electrical sparks that in turn give us volition and drive, movement, and stillness. A spine guides the body as it grows and develops and is metaphor for all kinds of pep talks: “Hold your head high!”, “Stand proud”, “Show some back bone!” and, sometimes, self-reproach “spineless!”. As my daughter grew, her spine turned rogue and one evening as she leaned over the sink to brush her teeth, shortly after returning from a holiday somewhere hot where she wore few clothes and ran in the sand, straight-backed and carefree, I saw something had changed. It was not where it was supposed to be. Somehow in a few short months, it looked as if her scapula had been pushed upwards, towards her clavicle and the top of her shoulders. When she stood and straightened, her spine did not straighten with her. I traced its line with my eye noting how it did not follow the customary route- the one my eyes wanted to take.

A deep breath and a call to the doctor the next morning started the process that led to our time at a regional hospital in Huntingdon, home to the team that would change everything for her. And as more than two years rolled past, we watched her spine continue to curl, curve and twist, copying the name of what afflicted her- an onomatopoeic scoliosis with its S ss's rollercoaster twists of consonants and vowels. Her ribs twisted into a wing bulging out of one side of her torso, one shoulder blade reared upwards and she ached with both the effort of supporting a skeleton which was not supporting her, and the physical discomfort of lungs trapped inside a cage of twisted rib.

“The waiting is the worst” became her (and our) mantra. The repeat outpatient visits, the measuring with callipers and acronymed machinery housed inside narrow tunnels (MRI), encircled her body (CT) and asked her to stand semi-naked and vulnerable in rooms where strangers peered through the window of a lead-protected cubby. Adolescence is a time when a child redefines their boundaries, asserts their privacy and develops their sense of impending adult self, but my daughter was being stripped naked and asked to offer up her internal and external self for examination and photography.

“The waiting is the worst” moved from a thought to a verbal chant as she lay on the trolley, rolling down to the anaesthesia department, waiting to be ‘flown’ by a quietly assuring teddy bear of an anaesthetist who promised he would not leave her and did not- he stayed with her not only for the thirteen-hour surgery as was his remit, but also monitored her 1-to-1 in the recovery room. The experience of losing his last scoliosis-afflicted patient remained fresh in his mind. My daughter was the first surgical case after that tragedy as the team had taken two weeks to reassess and try to learn from what happened whilst we sat at home and wobbled and worried.

We were and remain grateful to her surgeon who insisted he would not undertake the surgery until my daughter had done her research and could show she was fully cognizant of what it would involve, both the surgery and its arduous and often tedious rehabilitation. A familiar pattern assumed itself- a visit to the surgeon for monitoring, a chat on the way home followed by research online supervised by us, then tears, anger and finally pragmatism. “I have no choice so I need to get on with it. The waiting is the worst.”. In the United Kingdom, Scoliosis and its variant forms affect 3 or 4 children out of every 1,000 and can develop at any age, but is more common at the start of adolescence. In very young children, it may correct itself as they grow but in older children and adults, it is unlikely that scoliosis will improve without treatment and in some cases the curvature may get progressively worse. My daughter was one of them and she soon achieved a magnificent curve of 85%: a spine akin to the curviest roller coaster at Alton Towers- a double curve in fact, as we watched in trepidation. Our fears and her spine appeared to spiral off in tandem.

“The patient will be nursed in bed for seven days. After six to eight weeks the patient is usually well enough to travel by car. The patient will not be able to sit for six to eight weeks and will have to remain flat on their back or upright for short walks to the bathroom. The patient will not be fit to travel home by car and will be transported in an ambulance.”

Seven days of chest drains and urinary catheters. Of morphine pumps and a ward filled with much older women because she fell into the gap between child and adult services. Obtaining the menu from the children’s ward was reassuring- fish fingers and chips and teddy bear-shaped food allowed her to regress back to a time that seemed commensurate with her level of dependence. Yet the morphine also made her strangely adult and stoned; sage pronouncements came from this tiny, wounded creature in her bed. We pressed the PCA (Patient controlled anaesthesia) for her when she was asleep in those early days to ensure pain did not wake her and her sleep was our respite too. It allowed us to drop our adult guard and slump, show our worry on our faces to each other and the staff. Gradually though, this turned into a belief that it was going to be okay. Strange fevers from things growing in her bones would not come to take her away. MRSA was the monster under the bed we feared the most and as her incision healed strong and clean, we imagined the bone grafts in her spine becoming impervious and inviolate, merging with existing bone although in fact, the grafts take several years to become fully patent.

A post-op trip to X ray to check placement of the rods resulted in a meeting with a radiographer who introduced himself to her by saying “I saw your beating heart”- her thoracotomy and coloplasty had left her laying opened up and exposed on the table while the radiographer was brought in (part of the team responsible for the monitoring of her spinal cord function during and after the placement of the rods which would hold her spine straight). She was unfazed and deeply proud of the fact that two of her ribs now lay in the bone bank to help others and intrigued by what had gone on during her surgery. “What did you both do,Mum, while I was under?” (Endless Scrabble games kept us sane inside our flat in the hospital’s staff accommodation- I no longer enjoy Scrabble.) We turned inwards and forgot about everything else so it was shocking to us to see the reactions of other relatives to her. Seeing the distress on their faces at my daughters temporarily bloated swollen face (oedema from being face down for hours on end) dragged us from our self-protective bubble. We found it easier to cope by not being told how well we were coping.

How can I explain how I felt upon my return to the ward after a walk, to see a straight-backed girl in a pale yellow t-shirt sitting, back to me, on the edge of her hospital bed, being supported by two physiotherapists? I had grown so accustomed to the brutal curve of her spine that it had become an identifying feature. Lazily, it had become easy to use that. It was gone and what replaced it was a success beyond the hopes of her surgeon and his team. The remaining curve was imperceptible to the naked eye and the twist to her rib cage was far less apparent. She stood carefully and briefly, crying from pain and my other marker of time passing had changed: she was nearly four inches taller- although as the weeks went by this settled to three. We had plaited her hair before the operation and she had been kept so still that the plait remained, tidy and neat, following the livid scar that traced the now straight line of her spine from the nape of neck to her butt.

“After six months following follow up in clinic, the patient can gradually recommence activities, including different functions, building them up to one year following the surgery.”

Her surgery was one week after the end of her GCSE’s. She missed out on the celebrations, she did not collect her results from the school. She missed the start of her drama course and returned some months after, guarded by a literal circle of friends surrounding her, as she walked slowly and carefully through the crowds of students. Health and Safety assessments guarded her in a more formal manner. A quiet space made available for her to lie flat, a plan for what to do if the fire alarm went off- she couldn’t walk fast and must not be jostled- a modification of drama classes, an awareness that her rods restricted her from bending fully. My daughter is flexible in spirit and mind, her body sometimes lags behind.

We live in image-heavy times and the messages we are given about what is beautiful and perfect are twisted and skewed. At times kypho-scoliosis impaired her emotional growth, caging her with pain and embarrassment. She worried about it skewing her in the eyes of others although she has met men who have loved her for who she is and admire her courage and dignity. Now, ten years on*, she has her scars, a beautiful and striking faded line nearly as long as her spine, and the two ‘tiger slashes’ that bisect both sides of her thorax. She has answered enquiries about these scars by joking that she was mauled by a tiger. A few people find that more believable than the truth.

*This was written in 2012.

My daughter's treatment was specific to her needs and condition and may not apply to other cases. Her surgery took place some years ago and treatment protocols may have changed. If you have any concerns about scoliosis please see your GP or contact a support organisation. This is a good one.