This is the second part of a three-part series on what it’s like to have a brain tumor diagnosed, then surgically removed. To read the first entry, ‘What it’s like to have a grand mal seizure’, click here.
I left the hospital with an appointment to see a neurosurgeon and a large dose of medication to suppress the seizures. I did feel safer on the medication, but I could barely string a coherent thought together. Despite the fact I’d just discovered I was going to require brain surgery, I was more worried about the fact I suddenly had no interest in what had previously obsessed me – news, politics, wars, the lives of strangers. I was afraid my career as a journalist was over.
I wrote this fragment in my diary on November 4th, almost a week after the tumor was discovered:
“Is it that matters of politics and war don’t matter when your health is compromised, or is it that they don’t matter at all? Why aren’t you interested in all the things you’ve been following for months and months? Have you turned a corner permanently? Is this posting over, not for health reasons, but because it’s no longer your destiny?”
My husband David had to go to Cairo for a couple of days on a work trip he couldn’t postpone. My insurance had not yet confirmed it would pay for the surgery (it did in the end) so at this point we thought we may have to pay for the surgery ourselves. He was reluctant to go, but I assured him I’d be fine.
After two days spent grieving my increasingly addled mind, I decided to stop my meds for a day. I’d clear my system, then start again on a lower dose.
I didn’t understand how serious my condition was.That night, when I closed my eyes to go to sleep, the seizures started coming.
In the moments before a fit, some people get an aura – a period of altered reality that warns them they’re about to fit. Auras can come in many guises – some people describe a strong sense of de ja vu, others hear voices or smell something unpleasant.
These moments before a seizure can even feel transcendent. One of history’s most famous epileptics, Fyodor Dostoyevsky, described his auras as an experience of “such joy that no one else could have any notion of. I would feel the most complete harmony in myself and in the whole world and this feeling was so strong and sweet that for a few seconds of such bliss I would give ten or more years of my life, even my whole life perhaps.”
But as I closed my eyes to sleep that night, I felt none of Fyodor’s joy – only terror. Drifting into the space between wake and sleep, I felt my brain literally coming free of its stem, like a hot-air balloon being untethered before flight, as though my skull were the world, and my brain was floating up into the sky.
Snap out of it! I shook my head back to awake, and commanded my mind to reach for the rope, to re-tether my brain to its stem. I am my mind. I am in CONTROL of my own mind. A film fragment played over and over – one of the final scenes from The Wizard of Oz. The Wizard would float away in his hot-air balloon, wave goodbye to the crowds below, and Dorothy would be left behind, with no way to get home.
Over and over appeared the Wizard, then Dorothy’s anguished crying. Play, rewind, play, rewind. The balloon would leave – my brain would float – I’d shake awake – re-tether. The Wizard waved. Dorothy wept. Rewind. Play.
I sat up in bed and sobbed. Frustration and fear. It was the deep blue before sunrise. I had to sleep, but sleep meant surrender. CONTROL. I needed to be in control.
Goddamit! FUCK this! Fuck the whole thing and fuck the whole world. I gulped down my medication, pleading for swift mercy, begging this chemical to take back control of my brain. Be doped up, useless, who fucking cares. Just let me feel safe going to sleep, please just let me sleep.
Sometime later I must have passed out, exhausted. When I woke, it was late morning.
I lay in our bed that day, autumn sunlight dappling through the window. Is that vomit? Was that one of those phantom bad smells that comes before a seizure? Hold on to the rope. Keep your brain in position. Now the muscles in my right arm were limp. I couldn’t lift my arm. Did I lean on it the wrong way, or was this the beginning of a turn?
As I lay there, I wrote in my diary:
“My brain is an entity of its own behavior and accord; I have no power to control it. Only an artificial chemical can keep it in place, stop it from untethering with the Wizard.
But the chemical warden patrolling my head exacts her own price – she wants to exert herself, flex her muscle, jangle her cuffs. My moods, my instincts – they’re all under her control. She’s got my brain in her grip – until I stop feeding her. I stopped feeding her yesterday, feeling her so huge in my head, and the next morning she was tiny, barely holding the rope.”
Then, as I wrote, I started to seize. The fits came in waves. Each time a fit would pass I’d keep writing, as though by recording them, I’d be able to regain control:
“I’m sitting up in bed and the tumor has me. I’m staring at the doona, neither totally awake nor asleep, and my eyes start moving again. Up to the right and diagonal, up, up, up, up – NO! NO! NO – NO. I am not having another fit. No. My mind is my own. No. Stop it. Stare at the bed. You can control this. You can stop it.
My head obeys, stops tilting. I’m staring at the bed, but my eyes are ticking over to the side of the room, like a reptile, seeing only the point I’m staring at and then suddenly a point several metres away.
It’s a warning. You can control the seizure this time, but your mind is not your own. You need the warden, and you’ll just have to put up with her until you can kick her out for good.”
Soon after this David came back from Cairo, several days earlier than planned, and we were able to control the seizures together – when I felt one coming, I’d tell him and he’d just hold my hand and talk me down.
But the days dragged. I tried to work, to read, but I could barely even focus my eyes. I couldn’t sleep the days away because dozing was terrifying. I wanted somebody to just put me into a coma, and wake me up when the tumor was gone.
To anyone who asked I would say I was so lucky it wasn’t cancer, and so grateful to have had the seizure. But I didn’t feel lucky – I felt empty. Even with constant support from David and, from afar, my parents, I felt myself becoming more unrecognisable by the day. My work – my sense of empowerment – felt a million miles away. Apart from loving my husband, I couldn’t imagine what it would feel like to have any kind of purpose again.
Like a husk, hollow. Invisible.
Postscript: One night the following week I spent several hours in an emergency ward with stabbing stomach pains. Doctors thought it might be a burst appendix, but it turned out to be a reaction to the medication. A different course of meds helped control the seizures and my moods, until I had the tumor removed on November 17th.