Kia con bu’o’m vang
Xoe doi canh
Tung canh bay nam ba vong
En ngoi xem
There the yellow butterfly
Spreads its wings
Takes its flight
We contemplate it
– Vietnamese Nursery Rhyme
The Baby Orphanage is home to twenty eight children, the youngest a newborn, the eldest four years old. The orphanage gates are tall, wide and baby blue, mostly rusty and uncared for, opening to a courtyard, wide and sunny, with a few trees and plants. Bicycles and motorcycles are strewn in the shade of the trees. In the centre of the courtyard are the stairs leading up to the orphanage. The entrance is open to the elements, as is most of the Orphanage, and no physical barrier holds these children in. Walking through these gates, I am treated to a welcome like no other in the world. Tiny excited figures come running, screaming with excitement, attracting the attention of the other children who run in this wake. At the top of the steps they jiggle, shout, dance on the spot and leap into my outstretched arms.
Giang is first into my arms, a beautiful little girl of two or three, big liquid brown eyes, soft hair like a baby and flawless latte skin. I lift her onto my left hip. Lan Chi is next, a little tomboy of three or four, gorgeous plump shapely lips, petite nose and equisitely shaped eyed, in blue clothes and lilac flowered sandals. She swings herself into my free arm and onto my right hip. Gai runs to me, a girl of two or three, with her round face, sparkling smile, arms stretched open for soft cuddles and a giggle like no other, she wraps her arms around my right leg. Nhu takes my outstretched hand, smiling shyly, a quiet and calm girl of three or four, her elegant eyes reflecting her long elegant limbs, small string of tiny beads around her neck, she loves to write and adores to be praised. Ngoc appears, a strikingly beautiful girl of two or three, pale skin, distinctive eyes, revealing an ethnic makeup from beyond Vietnam’s borders, into wider Asia. She places a soft hand on my left leg. She is followed by Chi, girl of three or four with a sad and worried face that melts into a beautiful free smile at the tiniest kindness, often sharing kindness herself in consoling other tearful children. I buckle under this pile of children and Chi runs to us as we all giggle, tickle and hug.
On other days I am greeted by the boys, arriving to find them keeping watch at the orphanage gates. First into my arms is Ca’an, a caring and warm boy of four, beautiful big smile, from one of ethnic hilltribes, he loves to be lifted and cuddled, always with a protective eye on his younger brother. I swing Ca’an onto my left hip as Loc emerges, king of the jungle, a four year old boy with hydrocephilis, a little boy who loves to talk, laugh, play and sing. He runs to me, already talking, taking my hand, tapping on it and chattering to greet me. Tu runs out to see what is happening, a naughty and mischevious little boy of three or four, always the one to knock things over with flying limbs, to break things in his hands with overexcited curiosity, a boy with a large vertical scar on his belly left by surgery to save his life when he was very small. Tu does not want lifted, instead he runs energetic circles round us as we gather. Trang appears from behind a pillar, running to me faster that his tiny legs can carry him and he stumbles just as I sweep him up into my free arm. A beautiful, tiny, strong little boy of two or three, always in orange, baby huge wide eyes, always sparkling with excitement, a face that bubbles in anticipation of fun, I lift his tiny weight easily and throw him onto my hip. Not yet through the gates, I am absorbed into a tiny huddle of excited chatter and affectionate cuddles.
The children wear little outfits that look like pyjamas. Clothes are shared amongst children of similar size and come in sets of top and bottoms, always matching, with a child’s name written in pen on the top. Usually there are two or three names, the first crossed out, the clothes passed down. Always the legs are too short, revealing ankles and bellies. To my left, on a washing line in the courtyard, I see tiny matching sets of clothes in every colour swinging in the breeze, along side a few threadbare towels. There is no underwear or cloth nappies, on the washing line or on the children. They are a cute sight in these little outfits, pants far to short and clearly for a child much younger. Even so, the small sizes are far too big for their malnourished bellies. The children hold the waists of the pants as they run, to stop them falling down.
The Orphanage is mainly made of a large open space, around which there are doors opening into small bedrooms and a small classroom on the left, baby rooms directly ahead and an eating area, kitchen and office on the right. The bathrooms and showers are to the back left and are open to the elements. There are signs that children live here. The open space has some rusty and faded playgear, an old slide, climbing frame, seesaw and toy animals, child sized chairs and cushioned floors. The walls are chipped beige paint and colourful painted murals, jungle animals run through green trees, butterflies flutter by under yellow suns. It is bare, basic, stark even, but it is not soulless. The soul of this place is found in its small pyjama clad lives who shelter here. Warm skin, beautiful round eyes, shaped at the corners, high cheekbones, happy giggles and tiny cuddles breathe warm life into this space.
We walk into the orphanage and the children leap from my arms to share in the oranges and bananas we have brought for them. Children are swung hugh in the air by volunteers, a cupboard of toys is opened and the Orphanage is filled with the excited laughter of children and the colour of toys and building blocks. Music begins to play as the children run to greet all the volunteers, to find a coveted space in arms or on a knee, or to be trusted with a camera or the key to the toy cupboard. We have to lock the toys we donate away whilst we are not there, else things go missing. I find this so sad. These children have nothing, who would take a few pitiful toys away. I ask but no one seems to know where missing things go. As saddened as me by it, no one wants to know. The children are unperturbed, used to having things taken from them. The sound of their laughter bounces around the orphanage. As the atmosphere settles into the beat of a steady rhythm, I negotiate my way through cuddles and coloured blocks and I walk ahead to the Baby Rooms.
The Orphanage has two Baby Rooms, opposite the entrance. I kick my shoes off before pushing the door open, my sparkly flip flops falling into a small huddle with the dark sandals of the Mothers. Some of the toddlers and children wander into the baby rooms, their presence signalled by their tiny shoes left hapharardly outside the door. I guess bare feet are intended to keep the baby room floor clean for little hands, although I do not find babies crawling or playing on the floor, not on my first day there or any day after. There are two baby rooms, on the right are newborn to maybe seven or eight months old, on the left seven or eight months to about eighteen months, when the babies join toddlers and children. Both rooms are well lit, clean, although very basic. Each has one Mother, Mae, caring for five or six children. Mae looks after the babies laundry, food and bathing, so are busy and not always in the baby room. Usually I would find babies alone in their cots, alone in the room, alone in the world. Some of the cots were made of stretching material and although a little grubby seemed adequate at least, even comfortable. Other were made of rusty metal bars and wooden bases. These were not a baby’s cot or a child’s bed, they were more like cages. The tiniest newborns lay on a double bed, away from the edges, swaddled under layers and layers of tiny clothes, far too many for the tropical heat I think, but there they lay, under rows of tiny blue mosquito nets.
There were no toys in the cots, the baby room toys were tucked away on an out of reach shelf. I searched for toys, thinking there must be something, knowing that I had brought small rattles myself. I found a stash hidden away out of reach on a high shelf and happily passed these out to the babies, giving them something to have in their cots, for fun, colour and stimulation. The babies stared blankly at the strange objects I had put in their hands. They stared blankly at me when I showed how the toy was played with, shaking rattles, cuddling bears. They looked blankly at me when I offered them the toy back, did not reach out for the toy and did not react when I again put rattles in their hands and bears in their cots. I realised that these babies had never seen toys and had no idea what to do with them. When I returned the next day, the toys had been taken from the cots and put back on the high shelf. I got them down and handed them out again. This ritual was to continue for weeks.
The second baby room is home to six older babies, still round bundles but less tiny, at least physically. Lying in cots is replaced with sitting, bottles replaced with spoons. Any affection afforded to them for their baby cuteness seems to be left in the smaller baby room and the atmosphere here is less kind, the Mothers less loving and I am less welcome. In this room babies are potty trained, placed sitting in buckets and tied with rags to the bars of a cot to hold them upright and keep them from escaping. Some ingenious toddlers had learned to move with the bucket still attached, using their feet to propel themselves and sliding the bucket along the floor. We saw their understandable drive to break for freedom, bucket still attached, but the Mothers wanted to keep track of the children, so tied to the bars of the cages it was. This method unsettled me, the children did not look confortable and were often distressed by the use of restraints. If I ever found a tied child crying I would release him or her as this indicated to me that they were being held more than just upright by the rags. It was worth the grumpy looks of the Mae in my direction to respond to a baby’s discomfort and set a child free, if only for a few minutes. Within time, as I learned how the Orphanage worked, the demands placed on the Mothers and the duties they should be performing, I became frustrated with tying of children to bars. Whilst customs and practices of child raising vary from culture to culture, it became clear to me that this use of rags and bars was unacceptable here too. I made my feelings know without a word of english or vietnamese, simply untying the children, sitting with them till they had used the potty, then cleaning them and putting them back in their cots, or on the floor to toddle and play with each other.
Survivorship is a delicate term. After all, aren’t we all just surviving? Aren’t we all just living scan to scan?
After many painful, blurred, shocked, sobbing months, after endless days of strangers walking into rooms to pierce my delicate skin with needles without explanation, intrusive examinations, one diagnosis after the next, scans, walking lost and aimlessly into the park and crying in the rain, one surgery after the next, not one day or night free from these endless pains, labels that I mostly was spared due to my navigating this new nightmare reality not only in a state of disbelief, but in another language, I discovered that I had forgotten my own name.
My own name.
At appointments, on medical notes and later in hospital, I am called for, referred to or physically pushed around as if I was not human when pain or inability to move despite all my physical effort prevents me moving, as “Madame”. There was nothing rude in this day to day, my bank statements had made me giggle given the bizarre combination, but otherwise I lived, worked and studied in a first name environment (note to self, learn first names of all potential nobel prize winners who may just sit down next to you at lunch, introduce themselves using their own first name as a friendly retired professor and find their hour taken up with a lovely conversation not about discovering flavours of neutrinos, but instead the snow on the Jura and what a pretty day it was). Even then, albeit to the doubt of those within a fifty metre radius, I knew my name.
After everything changed, and everything changed, I became “Madame”. I have so much to focus on, to block out, to endure, to remove myself from, that whilst the irony and sadness of being referred to by an adult’s title in a world of adults more than twice my age that no adult with their opportunities and experiences behind them, their support systems in place and their experience closely recognised should experience, I was the outsider, the sad one, the child who needed cared for amongst this. I go to my appointments with a teddy bear and the seat next to me is empty. I look down at my hand and count the unbelievable on my fingers and thumb. My survival chances. I look at my hand, five of me, I grasp the two of me who will die. I am 27.
I am the one the doctors become emotional over, from sadness, to arguing amongst themselves, to shouting at a confused me, to strangers writing in formal emotionless reports of an incredible sad case and poor girl. I was the one they became attached to and this was not lost on me. I couldn’t be this one off sad case. Tears fall, I continue.
After months upon months, I realise I have forgotten my own name. I was asked and I couldn’t remember. I didn’t know.
My name, with my identity, was gone.
This is what this illness does, an illness I deny a name not because I have forgotten, simply because it does not deserve one.
It strips you bare. It takes you to places of yourself that never before existed. It gives you no choice but to continue on your hands and knees, in the street if you have to and often, unabashed, as what else can I do. I had to. It reduces you to unrecognisable. It takes away your intimate personal dignity, your hopes, dreams, your work, dedication, your relationships, your choices, your body, everything that you ever have been, everything you have worked for, everything that you were ever to be are gone in that first instant.
As time passes and your weight drops as you can no longer eat and your muscles waste away, as you become a chart, a room number, everything of who you ever were is slowly and inexorably shed too. In my case, I found that you even lose your name.
My doctor told me once, “This is what cancer does. It takes everything”.
I didn’t say that it could. I didn’t agree to any of this.
I noticed my own choice of language during this time and was so consistent that it impressed upon the small circle of friends who were near. “What is happening with me”, not “What is happening to me”, were my words when the description was required. Nothing happens to me without my permission, unless I let it. As frail and physically broken as I am, as much pain as I am in, as emotionally distraught as I was left, still, I am the one who chooses. Even if I choose that it is too painful, too much, it is my choice.
I spoke of challenges when really, there are no words for the horrors that I and so many others faced. I drop the word “need” from my language. A little bit of food would be a helpful, but I do not need much and I can manage without, I have to as eating becomes impossible or causes many hours of agony and painful sickness. My fridge, once welcoming for guests and carefully stocked for me became a storing place for medication in syringes. Shelter is useful, but on returning to my studio apartment after a month in Vietnam, where four year olds slept piled upon each other on wooden slats of old beds and babies in metal cots that resembled cages, I recall looking around on the spacious expanse and thinking that six of us could live here so comfortable, with so much space. Six of us. I will never forget that thought, my complete change of perspective and complete disbelief, as I looked across the space in the moonlight.
I slept on tiled floors in Vietnam, but I had a pillow to make a support of, I slept in dark, dirty overcrowded rooms of smiling faces of girls in Morocco, I slept in the mud in a Refugee camp in Africa, where my shelter was missing two walls. On each occasion I was one of the richest people in the area, not because of my huge credit card bills that I could no longer pay, nor my crucial medical costs that I could no longer find a way to pay for, not because I had no idea if I would see the months after. It was because I had a mosquito net. That was all I noticed, that privilege I had that others did not.
Meanwhile, the verbal labels for which I have so much distain and cause so much distress to not just myself but to so many, thoughtless labels that reduce humans to nothing but upsetting words, I refused them. I noticed that they were never used around me or to me. They must not have suited me so well. A skinny tearful staggering wreck perhaps, sometimes sobbing so loudly that a distressed neighbour would appear at my door in tears, more often just sobbing curled up in a corner alone. Not able to climb the steps to my therapist’s apartment, but looking up and smiling as I used the handrail to pull myself up each step, smiling as I was comfortably lapped in the park I used to run around by elderly people, walking out into the road without looking as I was sure it was fine.
Saying thank you for the few but immense small moments of kindness that I know only I remember as I felt the difference these tiny moments made to me, then holding each of these people as close to me as I possibly could for as long as I possibly could, as I knew they were angels.
I really never was very good at being a victim.
My doctor also once said to me as I joked ironically over my complete collapse of physical appearance, “Slowly, just slowly, maybe one day you’ll be able to start taking just tiny parts of yourself back”. I was still working on carrying my handbag. I take coins out of my purse to make it lighter. Walking distances takes so many times longer I could not count, or particularly care, I was upright. Myself back through physical appearance, colour my hair, put on eyeliner and suddenly I am considered absolutely fine?
Is this all that cancer survivorship is about? I was a twenty something, not eighty something. Was that all that was expected to be left of me?
There had to be so much more. I needed so much more. Something, someone, as many somethings and as many uniquely important someones to make it all worthwhile.
That was my goal. I didn’t know exactly how I would achieve it, or how long it might take, but I knew what I wanted. Here is where I have discovered I differ a little from many others who have had similar experiences, as scattered and isolated as we are. I decided that I wanted to be grateful that it had happened. Desperation and Inspiration. Where is the line. To choose one day be glad it had all happened. To start with complete acceptance and to choose everyday to find a way to be glad. To trust that one day I will be so grateful. To trust that it will take me to the life and people I could never have imagined possible. To believe that one day my story will be nothing but a life bathed in light and love.
Desperation and Inspiration. It is my only desperate, inspired way to cope.
Otherwise, I didn’t really take much back of what had been a lovely, intelligent, kind, warm and popular girl. I had developed PTSD http://www.mind.org.uk/ from the outset, undiagnosed of course, and was experiencing twenty five of the twenty six symptoms, intensely and daily. The only symptom I did not have, tellingly about my character, was anger. The others however, they hit me hard and I knew nothing of the condition or causes, or how textbook a case I was. All that was, amongst all sort of goodness knows what else, was simply the way things were for me and I found my ways to deal with them. Most, if not all, made being the girl I was before impossible.
That innocent girl, I just wasn’t her anymore. I had seen to much, knew too much and felt too much to ever be her again.
I was a blank canvas, quite sure I was on very limited time. So without thinking, I did the only thing I could. Fragile and weak, I had more strength than I knew possible. Terrified to my core, I had more courage that I knew could exist at an age in a lifetime such as mine. With the weight of the world on my shoulders, I was free.
So I listened to my instincts. I tapped into my abundance of complex courage. I was no longer the girl I used to be. I listened to my soul. I was pure.
Mine for the making. I choose my thoughts, no matter how much of a battle that can be. I choose my habits and I choose to battle to adapt and appreciate them. I had to choose who I wanted to be, how I wanted to think. I had to find a way to survive. I had to do it on instinct alone, as there was no other way.
It’s a blessing really, to be a free, with enough of an ability to move and the will to find a way past challenges, laid completely bare, stripped to nothing and left to choose, who do I want to be?
An illness can take everything. Everything.
I choose my thoughts, my morals. I choose who is important to me. I choose love, I chose patience, I choose kindness.
I’ll decide who I want to be
There are women who become mothers without effort,
Without patience or loss,
And though they are good mothers and love their children,
I know that I will be better.
I will be better not because of genetics
Or because I have read more books,
But because I have struggled and toiled for this child.
I have longed and waited.
I have cried and prayed.
I have endured and planned
Over and over again.
Like most things in life,
The people who truly have appreciation
Are those who have struggled
To attain their dreams.
I will notice everything about my child.
I will take time to watch my child sleep, explore, and discover.
I will marvel at this miracle
Every day for the rest of my life.
I will be happy when I wake in the middle of the night to the sound of my child,
Knowing that I can comfort, hold, and feed him
And that I am not waking to take another temperature, pop another pill, take another shot
Or cry tears of a broken dream.
My dream will be crying for me.
I count myself lucky in this sense;
That God has given me this insight,
This special vision
With which I will look upon my child.
Whether I parent a child I actually give birth to
Or a child that God leads me to,
I will not be careless with my love.
I will be a better mother for all that I have endured.
I am a better wife,
A better aunt, a better daughter,
Neighbor, friend and sister
Because I have known pain.
I know disillusionment,
As I have been betrayed by my own body.
I have been tried by fire and hell
That many never face.
Yet given time, I stood tall.
I have prevailed.
I have succeeded.
I have won.
So now, when others hurt around me,
I do not run from their pain in order to save myself discomfort.
I see it, mourn it, and join them in theirs.
And even though I cannot make it better,
I can make it less lonely.
I have learned the immense power of another hand holding tight to mine,
Of other eyes that moisten
As they learn to accept the harsh truth
When life is beyond hard.
I have learned a compassion that only comes by walking in those shoes.
I have learned to appreciate life.
Yes, I will be a wonderful mother.
As I lay in bed recovering from the now hopefully complete treatment, the weather outside my appartment window changed. The oppressive heat of summer gave way to the oranges, browns and golds of leaves of Autumn. When I got out of bed and shuffled over to my window to sit for a while on the windowsill and breathe in fresh clean air, I looked up and could see crisp blue skies of the Fall.
Still I rested, as the first glistening snows danced in the air under street lights outside my appartment, Again I watched from my windowsill as the snows fell, think, heavy, beautiful.There is something so peaceful about a new snowfall, the world becomes so quiet, the city sleeps, under a fresh white blanket. With a fresh snowfall, the world feels clean and pure again.
It was now November, eleven months after the first diagnosis, eleven months that had changed me forever. Initial treatment complete, it was time to have a PET-CT scan to see if the treatment had been successful and should it appear that it had, to take a first control scan, which would then be used at six monthly and yearly intervals to monitor my body for changes.
I walked to the clinic through the snow to have the scan. It was the same clinic where I had dropped by in the evenings, same time every evening, for help with my daily ivf injections when I just couldn’t face sticking another needle into my already massively bruised thighs. It was the same clinic where I had my surgery, I walked quickly through the glass door and past the waterfall in the entrance, trying not to look around in case I would see pained, desperate ghosts of myself, pleading to me for help with the sunken green and darkened eyes , eyes I knew too well and still recognized now, in the places I had haunted. I faced straight ahead and went downstairs to the nuclear medicine department, where scans are performed.
A scan, when one puts aside the psychological worry of what the results may say and more than that, what the results may mean, is a comfortable physical exam. I have blood taken, not quite sure why, just why not I expected was the logic, then I had an IV placed at the top of my inner lower right arm.They gave me a radioactive tracer drug, then told me to lie as still as possible whilst the tracer soaked into my body, showing any areas of activity there might be. Alessandro was with me but soon got sent upstairs after the doctor heard us indulging in some very gentle joking around and expressed concern that the giggling parts of me would light up on the scan. I relaxed in a comfy chair trying hard not to consider the magnitude of the scan and the soon to be results.
I waited an hour then went through to the room with the big PET-CT scanner machines. Its a long tube structure, I lie on a bed, which is then raised and moved into the tube, head first, so that I am completely surrounded by the scanners. Unlike other medical exams, I find a pet scan quite relaxing and unintrusive. I am given a dressing gown to put on over my underwear, not a hospital gown under which I would be naked. As I lay down on the bed, the nurse put supports beneath my arms, which I hold above my head, and my knees. She puts socks on my bare feet and wraps me up in a blanket, tucking me in a cosy blanket parcel. Then the machine is turned on, the bed is raised and slowly reversed into the circular tube that the machines surround. I dont mind this process at all. Its not claustrophobic because the tube is open at both ends, either your legs or head and arms will be out of the scanner at any time. A clever nurse told me to close my eyes at the moment the bed raised and first went into the tunnel, so that it would not seem so scary and oppressive and she was right. Then for the scan itself, the machines make whooshing sounds around you, the bed moves back and forth through the tube and occasionally a disembodied voice asks you to take a deep breath and hold it and then breath normally. The machine makes a loud, rhythmic whooshing sound. It sounds like the waves of the ocean touching the beach. It’s acually quite a relaxing test, when one ignores the potential for the results. This is exactly what I do. I pretend I’m at a spa. I close my eyes and I’m by the ocean.
…”She walks along the edge of where the ocean meets the land, as if she’s walking on a wire at the circus”…
After the spa through, there is a wait for the doctors to assess the slides, to decide whether they see any evidence of disease or whether treatment has been successful.I try to lie down again in the comfy chairs and be calm and not think of anything, whilst I wait for them. He breezed in after about twenty minutes and said Its all good, the treatment has worked and I see no evidence of disease. I don’t cry with relief, as I expected I would, I just stare at him. “So”, he says, “come back in four months and we’ll do a follow up check”. “Thats it?” I ask. “That’s it” he smiles. Then he breezes off.
I walk out of the clinic in a daze, thinking, I’ve just been given four more months to live, in health. I forget to avoid the ghosts and I don’t see them anyway as I think of those four months and how I am going to do something with them, I’m going to live them.
I walk back to my appartment through the falling snow. I don’t have an umbrella and the snow lands on my face and eyelashes in huge heavy snowflakes.
“A snowflake fell and it felt like a kiss, now I’m alright”