cerebrum

There’s an image floating around the memesphere lately that hits too close to home. As a tear rolls down the doleful face of Barack Obama, the text reads “when you Google your symptoms and discover you’ve got four diseases and two weeks to live”.

Welcome to my world, Barack.

In 2011, long before the dawn of the age of the meme, this is almost exactly what happened to me. As my seventeenth year stretched before me, I was growing increasingly perplexed by the workings of my own corporeality. Teenage years are admonished for their synonymy with physiological tumult – but my body took that concept and ran with it. I was young, ostensibly healthy, and I could barely stay awake. Studying for five A Levels and participating in a host of extra-curriculars, I excused my extreme exhaustion for months, dismissing it as a by-product of an overloaded schedule. I put my perennial tiredness to the back of my mind. But my body was displeased by my refusal to acquiesce to the warning signs it was sending me, and my sickness quickly climbed its way to a frightening crescendo.

I started awakening with migraines so severe that I would feel paralysed, each tentative movement sending seismic shockwaves of pain resonating throughout my skull. My exhaustion reached its apex, rendering it impossible to maintain consciousness throughout the school day; I would drag my weary body to a quiet corner of the library whenever opportunity presented itself. I felt physically fatigued, as though someone had stealthily affixed a heavy weight to my every limb whilst I wasn’t looking. I started lactating, feeling flashes of heat swell inside my boobs and running to the bathroom before I was betrayed by the telltale wetness seeping through my shirt. I would vomit suddenly and without warning, often fainting immediately afterwards like some perverse encore.

As these ailments began to proliferate, I did what any scared seventeen-year-old would do: I hit the internet.

I searched through seemingly endless pages of contradictory information, feeling more lost than when I’d started my quest. My symptoms were so multitudinous and erratic that the internet was quick to inform me – with the technological equivalent of smugness – that they could signal a deluge of horrendous ailments. Migraines could be a sign of meningitis, nausea could prelude gastroenteritis, lactation might reveal a furtive kidney disease, and fainting seemed to be attributable to every serious condition from diabetes to dysentery. After several hours of shell-shocked scrolling, my eyes fell upon two words.

‘Brain tumour’.

I went to see my doctor a week later, convinced I was dying of a parasitic cranial invader. It turned out that my internet-induced hypochondria would come to be a blessing in disguise. Sat in the surgery feeling frightened and diminutive, I vocalised my long-term exhaustion and plethora of peculiar symptoms. Sensing his palpable disinterest flood the room, I voiced my concerns that my body’s actions were a sign of something more sinister submerged under my skin.

In a tone heavy with condescension, he asked, “Did you Google your symptoms? There’s a lot of misinformation and fearmongering on the internet. I think you’re just suffering from the strains of puberty, but we’ll take a blood sample to put your mind at rest.” With that, he stood up to signal my dismissal, steadfast in his belief that my fears were unfounded. I was hurried along to the phlebotomy clinic, and handed over to a brusque nurse who had neither the time nor the empathetic capabilities for my rising terror. As I went to leave (containing several less vials of blood than I arrived with) I happened to pass my doctor in the corridor.

“What if it is a brain tumour?” I asked him, brimming with trepidation. My voice was so small that the room seemed to swallow it seconds after it left my lips. I was assured that we would cross that bridge when we came to it, and then he left.

As it turns out, we would come to it the very next week – at which time, we began a crossing that has thus far lasted six years.

I received a call one afternoon informing me that my blood tests were universally normal – with one notable exception. My prolactin level, which should have been “20 or less” was elevated to the dizzying heights of 770.

(I think about this phone call often. The arts have taught me to expect the significant moments of my life to take on a cinematic quality, but the sheer inaneness of this moment has stayed with me. I was heading to class, and surreptitiously slipped into a bathroom to take the call, to evade the wrath of my teachers. There was no swelling orchestral climax, no soft-focus shot of a tear streaking down my face, no close-up on my shaking hands as I took in the news. Instead of announcing themselves with dramatic fanfare, I’ve learned that the biggest moments of my life tend to sneak up on me quietly, when I am least expecting them. This was one such instance. My life changed forever in a bathroom stall at high school, and then I was late for geography.)

This discovery sparked a whirlwind of medical activity. That same week, I was hurried to hospital for an MRI scan. As I lay with my head strapped to the plastic cage, prostrate within the claustrophobic circle of the deafening device, the volume of my life seemed to ascend in accordance with the roars of the scanner. Each minute seemed louder and more discordant, as if it vibrated through the air. The closeness of the machine’s mouth felt like being committed to a coffin; I cried for thirty minutes, suddenly hit by the weight of what was happening as if it had descended from the radio-waves.

Thankfully, the results were returned quickly; disappointingly, they were not good news. My doctor talked me through the photos in a monotone – here was the tumour that had caused the lactation and the nausea. Here was the space where bleeding had occurred, causing me to sporadically lose consciousness. Here was the contact between the tumour and optic nerve, which could cause future blindness. Then, he confronted the final surprise – here were a host of smaller lesions that had found a home in my white matter. He described them as “bright spots”, as though each cellular cluster was a star within a glittering constellation of sicknesses, forming nebulae in my axons. As the last image faded to blackness, I drifted into the waiting room as if emerging from a trance.

I will never forget the experience of telling my mother that I have a brain tumour. She stood up from her seat when she saw me exit the consultation room, her face hopeful, betraying the optimism she was still clinging onto. I told her. What else could I have done? In that moment, I wished I had anything else to offer her but that one sentence. I wanted to tell her that the scans had come back free from abnormalities, that it had all been an unnecessary precaution, that normalcy could seep back into our lives slowly yet assuredly. But the truth spilled out, oozing into the air between us like a toxic pollutant. I could only watch helplessly as the hope slowly drained from her face. I held her as she cried, and watched as the world seemed to fall in on us. I was too shell-shocked to cry. We walked home in silence.

During that month, I seemed to transmogrify into a new being, unaware of the change until it was too late to reverse it. Gone was the diligent student with a stellar academic transcript (I was such an overachiever that I scored 100% in my Geography A Level, compelling the exam board to send their congratulations). In her place stood a tumour patient who could barely commandeer the energy to attend an hour-long class. I started a heavy dose of a punishing medication, which exacerbated my exhaustion until I could only remain awake for ten hours a day. But in the eye of the proverbial storm, I unearthed a determination within myself that I had never known. I completed my exams, securing a partial scholarship to the University of Bristol. After graduating, I moved to London to partake in a postgraduate degree at Goldsmiths College – paid for by none other than the Goldsmiths Company. I graduated with a distinction on my research thesis, and emerged into the world as a Master of Arts.

Yet there was no ascendancy without copious amounts of strife. These moments of elation were interspersed with crushing migraines, blood tests, crippling exhaustion, brain scans and fluctuating states of wellness. The tumour shrank; the tumour grew. There were frequent moments of fearful existentialism where I would wonder how much of myself was synthetic, cobbled together crudely from medicines, hormone replacements and years of treatment. Relying on tablets to keep my body controlled, it was easy to feel that I had lost myself – as if selfhood had been scraped away with the tumours.

I spent hours lost in swathes of white-hot jealousy, wondering how healthy people did it all. I watched peers juggling jobs, social lives and hobbies, feeling exhausted as a mere witness to their achievements. With envy burning through my bloodstream, I would imagine what it would feel like to have boundless energy at my disposal. I lost myself in these fantasies, dreaming of a single day spent in a tumour-free physique.

In addition to these painful ruminations, there were moments when people were cruel – sometimes to my face, but more commonly by using the internet as a shield. Over the past six years, multiple individuals have suggested that my illness is nothing more than a fabrication – a ploy through which to commandeer attention or to attract ‘special treatment’. (Tellingly, such accusations proliferate immediately after something wonderful has happened as a direct result of my illness, and I’ve learned to blank them out. After all, if I were to falsify aspects of myself to garner attention, I absolutely know what my lie of choice would be: that I was a secret princess from a little-known European municipality.) Similarly, the memory of an acquaintance telling me they would believe I was sick only when they attended my funeral has stayed with me to this day. (I can’t wait to prove them wrong, but sixty years of life before I get to revel in that satisfaction? What if they die before I get my Spike Milligan ‘I Told You I Was Ill’ moment? It’s a problematic grudge to hold, but I cling to it nonetheless.)

I frequently felt obligated to present a strong demeanour when I longed to crumble into weightlessness. Friends would laud my strength, resilience and bravery; strangers would declare themselves inspired by me. I carried these proclamations as weights upon my shoulders, feeling pressured to achieve remarkable successes against all odds to maintain the illusion. I would silence my complaints because they didn’t correlate with the “sickness warrior” image that I had accidentally cultivated. I didn’t allow myself the moments of vulnerability that I so desperately needed because I felt obliged to appear strong. I fought my battle almost entirely alone, afraid to admit to the world that I needed support. I blushingly apologised for instances of fragility, ashamed that my ‘real self’ had burst messily from behind the hardened exterior.

Yet, like all journeys, the path was sometimes paved with victory. Hanya Yanagihara concocted one of my favourite quotes in 2015 when she wrote “no matter what gets damaged, life rearranges itself to compensate for your loss, sometimes wonderfully”. No phrase could speak of my experience of sickness with more truth – because with time, things improved. Lactation ceased, vomiting disappeared, and I stopped crashing to the ground in ostentatious losses of consciousness. My optic nerve was no longer encroached upon by my largest tumour. There were moments of dizzying happiness, when my heart risked bursting from my ribcage. Sometimes, these came about because of my sickness – as though the universe, its tongue in its almighty cheek, was playing a cosmic joke on me. My tumour has gifted me many incredible acquaintances who have fought their own battles beside me – my brothers and sisters in arms, similarly adorned with tubes, drips, and scraps of hope. My illness has inspired unbelievable kindnesses from strangers, many of whom have subsequently become close friends.

In late 2016, I was declared inoperable – nothing more can be done for my tumours except a lifetime of medication. On receiving this news, my initial reaction was one of utter despondency. When confronted with the knowledge that how I am is how I will remain, it was all too easy to allow anger to rush through my veins. I spent days cursing a world that was unable to cure me. Years dragged in front of me, dogged by the greyness of exhaustion. But in time, I realised that my inoperability could be the greatest blessing I had received since my diagnosis.

I have learned to savour the moments of bliss – their sheer improbability renders them extraordinary. At seventeen, blinking in the wake of a then-terrifying diagnosis, I wrote in my journal “I don’t think I will ever have the energy to be happy again”. And yet here I am, at 23, wondering how my chest makes room for all this joy. I am inoperable, but the stasis of this forms a firm foundation upon which to pick up the ruins of my life and stack them towards the sky once more. I remain physically exhausted, but I work, run, dance, and once jumped out of a plane just because. My hobbies are luxuries now, and it makes me love them more than ever. I still find it hard to get out of bed some mornings (and some afternoons, too), but there are days when I sit laughing in front of a heap of pancakes with a friend, or when a handsome man scoops me up in his arms and runs down the street soundtracked by my joyful screams, or when I walk hand-in-hand with my sister, or when I see hopefulness reignited behind my mother’s retinas… and in those moments, I forget I’ve ever been unwell.

The needles, the metallic tang of blood collecting in a sachet, the hours wiled away in waiting rooms, the laparoscopes, the rush of sleepiness brought on by anaesthetic, the reverberating shrieks of the scanners – I have done my time, and it is all but over. I am still a girl with a brain tumour. But during those long, medicine-doped days, I felt like a brain tumour with a girl attached. I am reclaiming my territory – taking back my own skin and bones, and it feels like the most important revolution I could ever stage.