'Close your eyes, Jessica. Be a good girl and close your eyes. Just count to ten and close your eyes.'
I closed my eyes obediently. I was very obedient in the hospital. More obedient than I ever was at home. All of the nurses and the doctors on the children's ward were kind yet firm and they just naturally commanded that we be obedient. Being obedient meant that we were praised and called 'brave' and 'good' and given ice cream and badges. When they told us what to do, we tended to do it.
So I was a good girl and I closed my eyes and I counted.
obedient
one, two, three....
I reached five before I slipped under.
I think.
I don't know.
My dad knows.
I had selected him as the parent to hold my hand whilst the anaesthetist injected me with whatever it was that would make me plummet into the darkest and deepest of inky black sleeps. Over the next seven hours I had to be unconscious enough to be fully unaware of the crushed ice which was to be shovelled around my body.
And I had to be totally oblivious to the scalpel which would tear through my skin, creating a long cut and then three little holes.
Three little holes.
And then, most importantly, I had to be utterly and completely ignorant of my ribcage being forcefully cracked apart and then deftly winched open in order to reveal my internal organs. Only once my tiny, six year old body was fully splayed open, bloody and raw with ripped, weeping skin and torn muscles, would the surgeon delve into my heart and locate the tiny defect. The defect which despite its small size, had caused me to get out of breath within minutes of running around with the other kids. Prevented me from keeping up during sports day races and woken me in the middle of the night, sweating and gasping.
Funny really.
When you think about it.
In order to fix my flawed and fragile body, these surgeons had to almost completely obliterate it first.
When I look back at childhood photos, I see myself as an infant, chubby and grinning. But when you look closely you can see the slight sheen of sweat over my face. I wasn't overweight or unhealthy, but just normal everyday exercise could cause my breath to get shallow and my forehead to bead. It was the little things like this which prompted the maternal instinct within my mother to constantly prod and poke at her until several tests and hospital visits proved her right.
I was ever so slightly defective.
Obviously I was aware I was visiting the hospital and the doctor a lot but I didn't think anything of it. I just thought it was normal, something all kids did. Friendly and smiley doctors listened to my heart and took x-rays. They tested my blood and took my temperature and everyone behaved as this was a daily and regular occurrence. Nobody ever gave me a reason to be scared or afraid.
And even when I was eventually told about the hole in my heart, I wasn't frightened or nervous. Just curious. And kind of excited.
My mum had sat in a doctor's office and been educated about atrial septal defects. She had been lectured about the hemodynamic significance of my particular atrial septal defect. She had been shown diagrams of the pulmonary circulatory system. They explained to her that a surgical closure of the atrial septal defect was necessary and strongly recommended as no additional drug therapy would be needed and it would prevent a paradoxical embolism.
And then she took all of this information home and attempted to explain it to a six year old.
And that was how the whole thing started for me.
My mum sat me at the dining table one night with a sheet of blank paper and drew a picture of a love heart in it. A symbol I understood and recognised. She then drew a large black dot in the middle of it and told me how that was my heart. She explained that the hole was bad and that it needed to be fixed. She then drew another little love heart on the same bit of paper with a sticking plaster on it. She said that the nice doctors at a hospital were going to fix my hole and make it all better.
She sensibly chose not to go into detail about the cracked ribcage, general anaesthetic, weeks of bed rest, permanent scarring and three little holes.
And instead gave me a new nightie.
It was mostly white with red and yellow balloons all over it.
I thought it was brilliant.
Time off school and a new nightie to boot. Needing heart surgery was the best.
I had been brought up on literature about kids disappearing into the backs of cupboards or flying off to secret lands to discover little boys who never grew up. And my life in a quiet road in a small town had always rather paled in comparison. Here was my opportunity for adventure and excitement.
The children's ward of a Liverpool hospital became my Narnia. My Neverland.
There were about eight of us on that children's ward which was right in the centre of a large Victorian building in Liverpool. Because it was at the heart of the hospital there were no windows and no sign of the outside world, just vast pale green walls covered in metal pipes, and a black and white tiled floor. My bed was right next to the door to the ward so I was always immediately aware of visitors and people entering and leaving. Right opposite me was the nurse's station which stayed lit and bustling 24 hours a day. I must have slept at some point during my few weeks there but I don't remember. The constant movement and light seemed to keep me forever awake and aware, staring at the pale green ceiling and the frayed Disney posters.
Myself and the other kids on my ward weren't dying. Or fighting cancer. Or recovering from horrific car accidents. We were just in there for maintenance. As whole human beings we worked okay but all of us had some organ which just wasn't ticking over as well as the rest of us. So our parents had returned us to the hospital, like faulty iPad owners marching back to the Apple Store, where we were left for several weeks to have our internal malfunctions corrected, before being sent off home again.
Kids deal with that kind of thing okay and all eight of us, having initially looked over at our neighbouring bedfellows warily, began to play together and talk and socialise over our staple lunches of fish fingers, baked beans and chicken nuggets. This diet was hugely thrilling to me as I was not allowed this kind of stuff at home. Our lunches were served to us on a low round table in the playroom which was directly adjacent to our ward. If I had to visit another part of the hospital for yet another test or examination, I always peered into the adult wards and felt sorry for the older patients who ate their dinners at their own beds in quiet solitude. I thought they must be lonely.
When adults are in hospital on a full ward, they tend to discuss their ailments and issues with other patients. But in my windowless Neverland, myself and the other Lost Boys/Girls never mentioned anything of the sort. Discussing our reasons for being there was dull and boring and we didn't care. Plus we probably didn't really know. Some of us were sicker than others and had operations which were more severe, but we didn't compare or even empathise. If we were playing in a group, one of us would be pulled out briefly but when they returned we didn't ask them where they had been or what for. We just played our games in our brand new night dresses and pyjamas, (I don't remember any of us ever wearing proper clothes) until it was time for dinner or bedtime or a group activity that one of the nurses had organised like finger painting or a video.
Obviously it wasn't all plain sailing. There was occasionally pain or discomfort or fear. Emotions that we struggled to deal with. Adults can recognise these feelings and react appropriately but maybe with some dignity. They might sob loudly then apologise for making a fuss afterwards. Or explain politely where it hurts or complain about something in a passive aggressive e mail. Grown ups have years of practise of how to deal with stressful situations.
But we were kids.
So we just shat our pants.
Those badly paid, over worked nurses spent less time administering medication and far more hours cleaning up whatever bodily fluid we had forcibly emitted. They did it without chastising and they never complained. Just got out the J cloths and disinfectant and wiped up the piss, poo or putrid vomit which a distressed five year old had tearfully ejected, before changing us into yet more fresh pyjamas.
Often they would talk to us and reassure us about whatever surgery one of us was about to experience. I quite often discussed my surgery with the nurses and felt pretty confident and reassured about the operation itself. I had no reason to be scared and was endlessly trusting of the medical professionals around me.
Had I known about the three little holes I may have felt slightly different.
Sometimes I would find myself bereft of playmates for one reason or another, and would have to occupy my time alone. Fortunately I had two creative parents on hand to entertain also. They took it in turns to juggle their jobs, my two other sisters and bedside time and ensured that I had a parent present at all times. My thirty six year old father was a schoolteacher and often turned up at the hospital with items he had taken from his secondary school, such as pens, school books and other random bits of stationery.
'Playing School' was actually a favourite game of mine and I loved using my bed as a 'school desk' whilst my father gave me various instructions. One time he brought me an empty exercise book and said that I should write a story.
'What about?'
He gave me three things that I had to include in the story, like a bear, a magic slipper and a fairy, and I had to integrate these things in and give it a storyline. I delved into the challenge whilst concentrating on the tale and trying my best to write something that would entertain my daddy whilst he read the paper.
The next day it was my mother's turn to sit attentively next to my bed and I showed her the story I had written the previous day. She read it approvingly and suggested I write another.
'What should I write about this time?'
She shrugged.
'You can write about anything, darling. Anything you want.'
write about anything
And I think that's how it started.
Those exercise books got filled with stories about magical witches and wizards and also about events at the hospital. I often wrote about Santa Claus. It was Christmas time so, being on the children's wards, we were bombarded with visits from various Santa Clauses, some of them a better quality than others.
More often than not, myself and the other kids would be sat in a circle in the middle of the ward, engrossed in colouring or cutting and the ward nurse would announce 'Santa is here!' We would look up at the door, apprehensive and wearily annoyed that our activity had been interrupted by a musty-smelling old man in a dubiously knackered Santa suit who would hand out plastic bits of crap which we naturally had to display gratitude for.
For the three weeks that I was on the ward I must have been visited by half a dozen Santa's and I don't remember getting a half decent gift off any of them. Plus we knew it was just an elderly bloke volunteering for some charity or another.
We were sick but we weren't stupid.
The Santa's that featured in my endless scribblings were very often evil 'fakers' who had kidnapped the real Santa. I didn't realise this until I read some of my stories back the other day. My six year old self was clearly so aware that they were impostors and had incorporated that into my writing.
Eventually the day of the operation came. I was prepped and kissed and cuddled and told how brave I was before being wheeled into the anaesthetist's room where I stared at my dad's face and counted myself into oblivion.
one, two, three.....
And in the unknowing hours that followed, my heart stopped beating so that my malfunction could be corrected.
The days that followed were spent in intensive care before being moved back to my bed where I drifted in and out of sleep, vaguely aware of people and nurses and staring at the world through the heavy metal bars which were put up on either side of the bed.
Everyone told me and my parents that I was 'doing fine'. Everything was as it should be. They just talked about recovery time and resting.
I had a vertical surgery wound, still held together by tiny white stitches, which ran almost the entire length of my torso. And underneath it was a horizontal row of open wounds which still had coloured tubes entering and exiting my body and either side of each one were two loose ends of white surgical thread.
Three little holes.
I was fascinated by the new tapestry of my skin and would often lift the sheets to peer at and stroke the strangely pretty puncture wounds. Again, if this kind of thing happened to adults, they would no doubt struggle to come to terms with how surgery had changed the aesthetics of their body. But we children found the additions to our body gorily intriguing.
The three chest tubes were there to drain air, blood and infection and ran to my pleural space, the space around my lungs. A few days after my operation, the doctors examined me and declared that the chest tubes were no longer needed and could be removed from the three little holes in which they so snugly sat.
This was gently explained to me one morning by the Matron of the Children's Ward and I nodded, trustingly. My parents were both there and looked slightly more anxious than usual. I was placed into a wheelchair which was a painful exercise anyway as my tiny ribcage was still not fused back together and even minor movement caused me great discomfort. I was wheeled, topless but for a blanket which was placed over me, through the myriad of the many hospital corridors and parked up outside a room. We waited for a while before a man came through a door and said they were ready for me. I was wheeled into the room and looked over my shoulder at my parents. A nurse who I did not recognise read my anxious thought and said that mummy and daddy could not come in with me. Not this time.
why
This immediately set an alarm bell ringing. I had been allowed one parent with me for every single part of my journey through the green-painted Neverland and could not comprehend why I now had to face something alone. It has since been explained to me that my parents were advised not to be present for this part as it would just be too distressing.
The only thing I really remember about the room was the stainless steel table in the middle of it with a fluorescent light directly above. The nurse wheeled me in and I was greeted by two more female nurses and one male nurse. The male nurse was blonde and stocky and lifted me from the chair onto the table where I was placed gently on my back, wincing as my fissured ribcage felt as if it was splintering in two all over again. I watched the blanket drop to the floor.
oops
One of the nurses started to gently stroke my face.
'Ssssssshhhhh.' She said over and over.
'Ssssssshhhhh.'
But I wasn't making any noise.
Yet.
Whilst this nurse continued her routine attempt of calming and comforting me, another female nurse began arranging my limbs so that I was splayed out. This was uncomfortable and, as a reflex, I automatically went to move my right leg and arm back in to my body.
But I couldn't.
I looked down and realised that one of the female nurses was now gripping my ankle and wrist and even the slightest repositioning was impossible. Another female nurse was now practically resting her weight on the appendages on my left hand side.
I wriggled slightly, testing my range of movement.
Their grips tightened. Anxiously smiling as they did it.
'Sssshhhhhhh.'
I can't move
The male doctor came and stood at my right hand side and the 'shushing' female came away from my head and stood at my left. The four faces looked down at me but the fluorescent light above them meant I could just see the outline of their head, not their facial expressions.
'Okay, Jessica. I need you to take a deep breath and hold it in for me. After three....'
obedient
'One....'
The male nurse rested his large, warm right hand against the lower part of my belly and spread his feet to steady himself.
'Two....'
He gripped his left fist tightly around the chest tube protruding from one of the three little holes and rested a little of his weight on my torso.
'Three.'
I breathed in. And at that same moment I saw that tight, tensed fist yank upwards towards the light, taking the tube with it.
And then I screamed.
nonononononononono
I kept on screaming as I watched that fist travelling forever upwards. The tube kept slithering through its hole, scraping against the lacerated and raw skin until the bloodied end finally appeared, flicking out of the wound. The rough edges of my unhealed ribcage grated against each other with the violent and sudden movement causing a grinding pain to emit from under my skin.
'Ssssshhhhhh.'
nonononononononono
I had no breath left to scream so, panicked, I gulped in air and continued to try and lift my head to look down and see what atrocity was happening near the realms of my belly button. The only nurse not forcefully restraining me was tending to the open, seeping wound. She took the two loose ends of surgical thread and tied them in a knot so that the bloody bullethole of a wound was tightened up, the flesh mushing together. The spotlessly white yarn swiftly became stained with red as did her fingers.
'Sssssshhhhhhh.'
The wetness on my face told me that I was crying and I let my head fall back down to the table, staring up at the painted ceiling and the painfully bright light.
Three little holes.
three
And only one down.
still two left
I didn't even scream when the reality of the situation dawned on me.
They were going to do this again.
And again.
Three little holes.
nonononononononono
''Ready?' she said.
I looked up at the 'shushing' nurse but she wasn't looking at me. She was looking at the male nurse who had briefly removed his hands from my torso.
'Ready.'
He repositioned himself and focused his attention on the tube which was protruding from the second hole.
'Big deep breath Jessica. One...'
I was told later that my parents sat outside that door and listened to my screams, still and unmoving. Unable to comprehend that their tiny, weak child could make that kind of guttural noise and trying not to think about the scene which was happening in that room.
Some people say that modern medicine is unnatural. But what's unnatural is two loving parents simply sitting on one side of an unlocked door whilst a group of adults cause pain to their daughter on the other.
The second and the third holes were just as unbearable as the first. For the final one I don't think anyone even asked me to take a deep breath. I was too hysterical and all of my breath was taken up with making that high pitched, unrelenting noise. My ribs felt as if they were being cracked and bent beyond repair and the taut, punctured skin around my tummy had been pulled beyond its usual range of movement.
nonononononononono
Even when the final tube had been wrenched out and the final hole deftly and efficiently pulled together, I carried on making a noise. As I was placed back in the wheelchair with the blanket arranged carefully over the leaking, fleshy bumps, I cried and shouted and made a racket. Ragingly furious at the deceit and injustice which had taken place at the hands of those adults.
disobedient
Back at my bed I sobbed myself into a fitful and disorientated sleep and when I woke up only an hour or so later, I was uncomfortably hot and sweaty under the ward lights which were still on full as it was only mid afternoon.
My fury and anger had not yet been sated but I knew that I needed to do something. Something which would calm me and distract me and take my mind off the hospital and the pain. And the fact that soon I would leave this Neverland and have to readjust to life back home where I would have to rest and not join in on PE or run around at play times.
I looked over at my bedside table and saw one of those navy blue exercise books and a pencil.
write about anything
I lifted up the pencil.
nonononononononono
I opened up the book.
write about anything
I tried to think of three things to write about. Like my dad had taught me.
ow it still hurts
And eventually chose three magical, happy things.
write about anything, darling
write about anything
I forgot about the three little holes.
obedient
And I wrote about anything.
Yeah I know. Pretty different to the theatre ramblings. Sorry for the interruption. Normal service will resume soon. I just wanted to try something new out.
