I had food, shelter, safety, loving parents, encouragement, stimulation. Why shouldn’t I have been happy? And though I can’t have entirely forgotten how oppressive and monotonous classwork and schoolyard politics could be, or how easily my usual bouts of enthusiasm were derailed by the most trivial problems, when things were actually going well for me I wasn’t in the habit of counting down the days until it all turned sour. Happiness always brought with it the belief that it would last, and though I must have seen this optimistic forecast disproved a thousand times before, I wasn’t old and cynical enough to be surprised when it finally showed signs of coming true.
When I started vomiting repeatedly, Dr. Ash, our GP, gave me a course of antibiotics and a week off school. I doubt it was a great shock to my parents when this unscheduled holiday seemed to cheer me up rather more than any mere bacterium could bring me down, and if they were puzzled that I didn’t even bother feigning misery, it would have been redundant for me to moan constantly about my aching stomach when I was throwing up authentically three or four times a day.
The antibiotics made no difference. I began losing my balance, stumbling when I walked. Back in Dr. Ash’s surgery, I squinted at the eye chart. She sent me to a neurologist at Westmead Hospital, who ordered an immediate MRI scan. Later the same day, I was admitted as an in-patient. My parents learnt the diagnosis straight away, but it took me three more days to make them spit out the whole truth.
I had a tumor, a medulloblastoma, blocking one of the fluid-filled ventricles in my brain, raising the pressure in my skull. Medulloblastomas were potentially fatal, though with surgery followed by aggressive radiation treatment and chemotherapy, two out of three patients diagnosed at this stage lived five more years.
I pictured myself on a railway bridge riddled with rotten sleepers, with no choice but to keep moving, trusting my weight to each suspect plank in turn. I understood the danger ahead, very clearly … and yet I felt no real panic, no real fear. The closest thing to terror I could summon up was an almost exhilarating rush of vertigo, as if I was facing nothing more than an audaciously harrowing fairground ride.
There was a reason for this.
The pressure in my skull explained most of my symptoms, but tests on my cerebrospinal fluid had also revealed a greatly elevated level of a substance called Leuenkephalin—an endorphin, a neuropeptide which bound to some of the same receptors as opiates like morphine and heroin. Somewhere along the road to malignancy, the same mutant transcription factor that had switched on the genes enabling the tumor cells to divide unchecked had apparently also switched on the genes needed to produce Leu-enkephalin.
This was a freakish accident, not a routine side-effect. I didn’t know much about endorphins then, but my parents repeated what the neurologist had told them, and later I looked it all up. Leu-enkephalin wasn’t an analgesic, to be secreted in emergencies when pain threatened survival, and it had no stupefying narcotic effects to immobilize a creature while injuries healed. Rather, it was the primary means of signalling happiness, released whenever behavior or circumstances warranted pleasure. Countless other brain activities modulated that simple message, creating an almost limitless palette of positive emotions, and the binding of Leu-enkephalin to its target neurons was just the first link in a long chain of events mediated by other neurotransmitters. But for all these subtleties, I could attest to one simple, unambiguous fact: Leu-enkephalin made you feel good.
My parents broke down as they told me the news, and I was the one who comforted them, beaming placidly like a beatific little child martyr from some tear-jerking oncological mini-series. It wasn’t a matter of hidden reserves of strength or maturity; I was physically incapable of feeling bad about my fate. And because the effects of the Leu-enkephalin were so specific, I could gaze unflinchingly at the truth in a way that would not have been possible if I’d been doped up to the eyeballs with crude pharmaceutical opiates. I was clear-headed but emotionally indomitable, positively radiant with courage.
i had a ventricular shunt installed, a slender tube inserted deep into my skull to relieve the pressure, pending the more invasive and risky procedure of removing the primary tumor; that operation was scheduled for the end of the week. Dr. Maitland, the oncologist, had explained in detail how my treatment would proceed, and warned me of the danger and discomfort I faced in the months ahead. Now I was strapped in for the ride and ready to go.
Once the shock wore off, though, my un-blissed-out parents decided that they had no intention of sitting back and accepting mere two-to-one odds that I’d make it to adulthood. They phoned around Sydney, then further afield, hunting for second opinions.
My mother found a private hospital on the Gold Coast—the only Australian franchise of the Nevada-based “Health Palace” chain—where the oncology unit was offering a new treatment for medulloblastomas. A genetically engineered herpes virus introduced into the cerebrospinal fluid would infect only the replicating tumor cells, and then a powerful cytotoxic drug, activated only by the virus, would kill the infected cells. The treatment had an eighty percent five-year survival rate, without the risks of surgery. I looked up the cost myself, in the hospital’s web brochure. They were offering a package deal: three months’ meals and accommodation, all pathology and radiology services, and all pharmaceuticals, for sixty thousand dollars.
My father was an electrician, working on building sites. My mother was a sales assistant in a department store. I was their only child, so we were far from poverty-stricken, but they must have taken out a second mortgage to raise the fee, saddling themselves with a further fifteen or twenty years’ debt. The two survival rates were not that different, and I heard Dr. Maitland warn them that the figures couldn’t really be compared, because the viral treatment was so new. They would have been perfectly justified in taking her advice and sticking to the traditional regime.
Maybe my enkephalin sainthood spurred them on somehow. Maybe they wouldn’t have made such a great sacrifice if I’d been my usual sullen and difficult self, or even if I’d been nakedly terrified rather than preternaturally brave. I’ll never know for sure—and either way, it wouldn’t make me think any less of them. But just because the molecule wasn’t saturating their skulls, that’s no reason to expect them to have been immune to its influence.
On the flight north, I held my father’s hand all the way. We’d always been a little distant, a little mutually disappointed in each other. I knew he would have preferred a tougher, more athletic, more extroverted son, while to me he’d always seemed lazily conformist, with a world-view built on unexamined platitudes and slogans. But on that trip, with barely a word exchanged, I could feel his disappointment being transmuted into a kind of fierce, protective, defiant love, and I grew ashamed of my own lack of respect for him. I let the Leu-enkephalin convince me that, once this was over, everything between us would change for the better.
From the street, the gold coast health palace could have passed for one more highrise beachfront hotel—and even from the inside, it wasn’t much different from the hotels I’d seen in video fiction. I had a room to myself, with a television wider than the bed, complete with network computer and cable modem. If the aim was to distract me, it worked. After a week of tests, they hooked a drip into my ventricular shunt and infused first the virus, and then three days later, the drug.
The tumor began shrinking almost immediately; they showed me the scans. My parents seemed happy but dazed, as if they’d never quite trusted a place where millionaire property-developers came for scrotal tucks to do much more than relieve them of their money and offer first-class double-talk while I continued to decline. But the tumor kept on shrinking, and when it hesitated for two days in a row the oncologist swiftly repeated the whole procedure, and then the tendrils and blobs on the MRI screen grew skinnier and fainter even more rapidly than before.
I had every reason to feel unconditional joy now, but when I suffered a growing sense of unease instead I assumed it was just Leu-enkephalin wi
thdrawal. It was even possible that the tumor had been releasing such a high dose of the stuff that literally nothing could have made me feel better—if I’d been lofted to the pinnacle of happiness, there’d be nowhere left to go but down. But in that case, any chink of darkness in my sunny disposition could only confirm the good news of the scans.
One morning I woke from a nightmare—my first in months—with visions of the tumor as a clawed parasite thrashing around inside my skull. I could still hear the click of carapace on bone, like the rattle of a scorpion trapped in a jam jar. I was terrified, drenched in sweat … liberated. My fear soon gave way to a white-hot rage: the thing had drugged me into compliance, but now I was free to stand up to it, to bellow obscenities inside my head, to exorcize the demon with self-righteous anger.
I did feel slightly cheated by the sense of anticlimax that came from chasing my already-fleeing nemesis downhill, and I couldn’t entirely ignore the fact that imagining my anger to be driving out the cancer was a complete reversal of true cause and effect—a bit like watching a forklift shift a boulder from my chest, then pretending to have moved it myself by a mighty act of inhalation. But I made what sense I could of my belated emotions, and left it at that.
Six weeks after I was admitted, all my scans were clear, and my blood, CSF and lymphatic fluid were free of the signature proteins of metastasizing cells. But there was still a risk that a few resistant tumor cells remained, so they gave me a short, sharp course of entirely different drugs, no longer linked to the herpes infection. I had a testicular biopsy first—under local anesthetic, more embarrassing than painful—and a sample of bone marrow taken from my hip, so my potential for sperm production and my supply of new blood cells could both be restored if the drugs wiped them out at the source. I lost hair and stomach lining, temporarily, and I vomited more often, and far more wretchedly, than when I’d first been diagnosed. But when I started to emit self-pitying noises, one of the nurses steelily explained that children half my age put up with the same treatment for months.
These conventional drugs alone could never have cured me, but as a mopping-up operation they greatly diminished the chance of a relapse. I discovered a beautiful word: apoptosis—cellular suicide, programmed death—and repeated it to myself, over and over. I ended up almost relishing the nausea and fatigue; the more miserable I felt, the easier it was to imagine the fate of the tumor cells, membranes popping and shrivelling like balloons as the drugs commanded them to take their own lives. Die in pain, zombie scum! Maybe I’d write a game about it, or even a whole series, culminating in the spectacular Chemotherapy III: Battle for the Brain. I’d be rich and famous, I could pay back my parents, and life would be as perfect in reality as the tumor had merely made it seem to be.
I was discharged early in December, free of any trace of disease. My parents were wary and jubilant in turn, as if slowly casting off the fear that any premature optimism would be punished. The side-effects of the chemotherapy were gone; my hair was growing back, except for a tiny bald patch where the shunt had been, and I had no trouble keeping down food. There was no point returning to school now, two weeks before the year’s end, so my summer holidays began immediately. The whole class sent me a tacky, insincere, teacher-orchestrated get-well e-mail, but my friends visited me at home, only slightly embarrassed and intimidated, to welcome me back from the brink of death.
So why did I feel so bad? Why did the sight of the clear blue sky through the window when I opened my eyes every morning—with the freedom to sleep in as long as I chose, with my father or mother home all day treating me like royalty, but keeping their distance and letting me sit unnagged at the computer screen for sixteen hours if I wanted—why did that first glimpse of daylight make me want to bury my face in the pillow, clench my teeth and whisper: “I should have died, I should have died”?
Nothing gave me the slightest pleasure. Nothing—not my favorite netzines or web sites, not the njari music I’d once revelled in, not the richest, the sweetest, the saltiest junk food that was mine now for the asking. I couldn’t bring myself to read a whole page of any book, I couldn’t write ten lines of code. I couldn’t look my real-world friends in the eye, or face the thought of going online.
Everything I did, everything I imagined, was tainted with an overwhelming sense of dread and shame. The only image I could summon up for comparison was from a documentary about Auschwitz that I’d seen at school. It had opened with a long tracking shot, a newsreel camera advancing relentlessly towards the gates of the camp, and I’d watched that scene with my spirits sinking, already knowing full well what had happened inside. I wasn’t delusional; I didn’t believe for a moment that there was some source of unspeakable evil lurking behind every bright surface around me. But when I woke and saw the sky, I felt the kind of sick foreboding that would only have made sense if I’d been staring at the gates of Auschwitz.
Maybe I was afraid that the tumor would grow back, but not that afraid. The swift victory of the virus in the first round should have counted for much more, and on one level I did think of myself as lucky, and suitably grateful. But I could no more rejoice in my escape, now, than I could have felt suicidally bad at the height of my enkephalin bliss.
My parents began to worry, and dragged me along to a psychologist for “recovery counselling.” The whole idea seemed as tainted as everything else, but I lacked the energy for resistance. Dr. Bright and I “explored the possibility” that I was subconsciously choosing to feel miserable because I’d learnt to associate happiness with the risk of death, and I secretly feared that re-creating the tumor’s main symptom could resurrect the thing itself. Part of me scorned this facile explanation, but part of me seized on it, hoping that if I owned up to such subterranean mental gymnastics it would drag the whole process into the light of day, where its flawed logic would become untenable. But the sadness and disgust that everything induced in me—birdsong, the pattern of our bathroom tiles, the smell of toast, the shape of my own hands—only increased.
I wondered if the high levels of Leu-enkephalin from the tumor might have caused my neurons to reduce their population of the corresponding receptors, or if I’d become “Leu-enkephalin-tolerant” the way a heroin addict became opiatetolerant, through the production of a natural regulatory molecule that blocked the receptors. When I mentioned these ideas to my father, he insisted that I discuss them with Dr. Bright, who feigned intense interest but did nothing to show that he’d taken me seriously. He kept telling my parents that everything I was feeling was a perfectly normal reaction to the trauma I’d been through, and that all I really needed was time, and patience, and understanding.
I WAS BUNDLED OFF TO HIGH SCHOOL AT THE START OF THE NEW YEAR, BUT WHEN I DID nothing but sit and stare at my desk for a week, arrangements were made for me to study online. At home, I did manage to work my way slowly through the curriculum, in the stretches of zombie-like numbness that came between the bouts of sheer, paralyzing unhappiness. In the same periods of relative clarity, I kept thinking about the possible causes of my affliction. I searched the biomedical literature and found a study of the effects of high doses of Leu-enkephalin in cats, but it seemed to show that any tolerance would be short-lived
Then, one afternoon in March—staring at an electron micrograph of a tumor cell infected with herpes virus, when I should have been studying dead explorers—I finally came up with a theory that made sense. The virus needed special proteins to let it dock with the cells it infected, enabling it to stick to them long enough to use other tools to penetrate the cell membrane. But if it had acquired a copy of the Leu-enkephalin gene from the tumor’s own copious RNA transcripts, it might have gained the ability to cling, not just to replicating tumor cells, but to every neuron in my brain with a Leu-enkephalin receptor.
And then the cytotoxic drug, activated only in infected cells, would have come along and killed them all.
Deprived of any input, the pathways those dead neurons normally stimulated - were withering away. Ev
ery part of my brain able to feel pleasure was dying. And though at times I could, still, simply feel nothing, mood was a shifting balance of forces. With nothing to counteract it, the slightest flicker of depression could now win every tug-of-war, unopposed.
I didn’t say a word to my parents; I couldn’t bear to tell them that the battle they’d fought to give me the best possible chance of survival might now be crippling me. I tried to contact the oncologist who’d treated me on the Gold Coast, but my phone calls floundered in a Muzak-filled moat of automated screening, and my e-mail was ignored. I managed to see Dr. Ash alone, and she listened politely to my theory, but she declined to refer me to a neurologist when my only symptoms were psychological: blood and urine tests showed none of the standard markers for clinical depression.
The windows of clarity grew shorter. I found myself spending more and more of each day in bed, staring out across the darkened room. My despair was so monotonous, and so utterly disconnected from anything real, that to some degree it was blunted by its own absurdity: no one I loved had just been slaughtered, the cancer had almost certainly been defeated, and I could still grasp the difference between what I was feeling and the unarguable logic of real grief, or real fear.
The Hard SF Renaissance Page 98