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