Magical Realism: From Seizure to Surgery

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 4^th, 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 17^th.

 

What it’s like to have a grand mal seizure

I wrote this account one week after having a grand mal seizure, and two weeks before having brain surgery to remove the tumor that caused it. At the time I was still having seizures every few days, and just the act of writing about the first seizure in such detail almost brought on another one. I initially planned to keep this account private, but after two months, I’ve decided to share it, if only for the fact that it might be useful to others who have had or will have a similar experience.

It was late on October 28^th and I was laid out with my eyes closed on a row of cushions in a tiny house just outside of Yemen’s capital, Sana’a. I had several hours to kill before my flight, so my guide, Jameel, had brought me to his house to meet his family. After seeing that I was tired he insisted I lie down, and his wife brought me a blanket. Their beautiful young daughter sat beside me watching a Turkish soap opera, the volume down low.

As Jameel and I were leaving for the airport, his wife stopped me in the hallway and handed me a necklace of dark blue beads. They were hers, she said; she wanted me to have them so I would remember her. There were warm goodbyes at the airport, confusion at check-in, and then the plane took off. After eight hours of tiled purgatory at Dubai Airport, it was finally time to reboard the plane: next destination, Beirut. I was exhausted.

My head resting against the window, I was swimming around somewhere between awake and asleep when I felt my mind fall through a trapdoor and into a vacuum. Suddenly, there was no ground for my mind to land on. No language. No concepts. Anxiously I grasped through the smothering black for an idea, a word, something I could articulate. Nothing. Just black.

Then I felt my eyes roll up in my head. On a slow, steady rhythm, they started jerking forcefully to the right. Language flooded back i’ve lost control! and jerk, jerk, jerk, further and faster my eyes pushed to the right. Breath quick and shallow now, eyes so far up and to the right they pushed painfully against their sockets. My head jerked too now, like it was being dragged by my eyes jerk, jerk, jerk, I tried to push out a sound, a grunt. Nothing but spittle.

In full seizure now, shaking uncontrollably, I could still see out of the very corners of my eyes. There was no-one sitting next to me, and the man two seats down was staring into his iPad. I couldn’t talk, shout, scream someone pay attention to me now! look at me right now! my head is going to twist off! Now now now I was shaking violently, silently, up against the window. Eyes pushing, pushing, head convulsing, trapped, exploding. Thoughts spitfiring, futile it’s hurting someone make it stop I can’t scream LOOK AT ME!

Consciousness shredding, I dragged movement from somewhere inside me and heaved myself across the row and onto the man’s lap. He looked down, eyes wide.

he sees me! thank god

spittle foaming now, mouth shuddering, seizure in full flight.

throat seizing, can’t breathe if I don’t pass out I’ll die

‘Medic!’ I heard him shout. Immediately a flight attendant appeared, flustered – ‘Calm down’

it’s okay i’m seen *calm down* hahfunny and down, out of the shaking, into a different, gentle darkness

i’m not dying 

letting go, going still, taken care of

so grateful

Unconscious.

“ARE YOU COMING TO BEIRUT TO PARTY?” A young woman in the seat in front was turned towards me, talking to me like I was a child. She handed me a bracelet of dark wooden beads. “Here, have these. I make them.” I thanked her, and leaned back in my chair. The man in the row behind asked how I was feeling. “Tired,” I smiled. Why is everyone being so nice to me? Do I look terrible or something? I got up to go to the bathroom. My legs feel weird. The flight attendant told me not to lock the door. Is it broken?

Back to my seat. Nobody was sitting in my row. Where’d that guy go? I wasn’t in my chair. I looked across at the window chair I had been sitting in. It was wet. Oh my god. My pants were wet. Oh my god.

“What happened?” I asked a passing attendant. Perfect hair and make-up knelt down beside me. “You had a seizure.” A beat. Then it came at me in a rush. Just stay calm. We were about to land. People were disembarking. I was at the door of the plane. My legs were collapsing. “I need a wheelchair.” An airport employee arrived with a squeaky standard-issue, loaded me in and pushed me hastily to customs, through the empty U.N. line, to the baggage carousel. My bag was there mercifully quick. “Welcome to Beirut,” he repeated nervously, pushing me out onto the street and towards a taxi. Taxi driver took my bag. “Ten dollars,” the wheelchair man said. “What? No fucking way!” I replied furiously. “Ten dollars, ashura,” he pushed. “Get fucked,” I said, and climbed gingerly into the cab.

Welcome to Beirut. I sat quietly, collecting myself. Then to the driver, “Twenty dollars, to Gemmayze, ok?” “Thirty.” “Look, I know the price, it’s twenty,” I sighed. Driver shook his head. “That man, he just made me pay him ten.” Fuck. Don’t cry.

When the taxi pulled up my husband David was on the road outside our apartment, eyes frantic but steady. On the concrete stairs I stammered out what had happened. Into the apartment and put down in our bed. David rushed next-door to the Lebanese Red Cross, whose volunteers we could see smoking every night from our back verandah, and came back with our friend John. Vital signs were normal, he said. “But go to hospital now.”

Up to Sassine Square, where a car bomb had killed eight and injured 78 the week before, to Hotel Dieu, the hospital where they were treated, through to Emergency, hooked up to a drip and into the MRI room. Alone on the guerney, silent but for the loud machine bursts that were scanning my brain.  Out, and back in. They needed to double-check something. Then a nurse squirting tiny, cold shots of gel into my hair, preparing for an EEG. More scanning. Then back to the hospital room to wait.

Some time later, a doctor came into the room. “We’re not prepared to call it a tumour yet, but there’s something on your brain.”  They wouldn’t know anything more for many hours, probably not until the next day.

That night on a single cot bed David and I somehow managed to go to sleep, curled tightly around each other. I don’t remember much, except for a few times when we looked at each other and really let the fear in, then held each other and thought it will be ok. Just like it was going to be ok for everyone in the hours before they got their diagnosis.

What I remember most vividly from that night is opening my eyes just before sunrise, and watching the first rays of the sun filter softly through the window. The light was so beautiful, so simple. I lay there quietly, watching it as it brightened, and wondered if that day, some doctor was going to tell me I had cancer.

The sun came up slowly, and the streets of Achrafieh began to bustle. I don’t know what time it was when a doctor finally came into our room to tell us the tumor wasn’t cancerous. I think we were relieved, though I can’t remember what that felt like. He told me what pills would manage the seizures. We paid the bill, and David and I left the hospital, hands clutching tightly.

Over the next three weeks, I continued to have smaller seizures, until my operation on November 17. I kept notes about this limbo period, too, which I will post here soon.

Occupy Denver

Protesters were in a tense standoff with riot police when we arrived at what had been the Occupy Denver campsite.

I was with eight other journalists from East Asia (including Mongolia, PNG and East Timor). We’d touched down in Denver, Colorado, just two hours earlier.

Silently, police cars flashed around the site.

Riot police stood in a line between the protesters and Denver’s capitol building. Pepper spray residue hung heavy in the air, and many people were coughing and sneezing.

Under a tree, tents and campsite debris were piled up like trash. I approached a man in his 50s, who said he’d been a daytime occupier at the site for around a month.

‘Today we went up to the Capitol,’ he began, ‘but they stopped us going up the steps. We came back down peaceably.’

‘Soon afterwards, some police arrived (at the campsite) and started taking down the tents. People were asking them to stop, saying they had a right to peacefully assemble under the first amendment of the constitution. Then there was some confrontation between one civilian and the cops. That’s when they charged the crowd.’

According to several eyewitnesses, police then pepper sprayed and shot rubber bullets or pellets into the crowd. One man had a wound between his eyes. He said a policeman had shot him in the face. He was still wearing his hospital tag.

The New York Times reports that two protesters were charged with assaulting an officer, and 20 people were arrested.

A small group sang Hare Krishna in the background, and protesters tried to engage the police. ‘Why did you attack us? We have a right to be here. We were peaceful, and you attacked us.’ The police stood silent, batons raised across their chests.

I saw only one policeman reply. ‘You do have a right to be here. And when we leave, you’ll still be here.’ While most were standing peacefully, a small contingent were verbally abusive towards the police, and clearly agitating for a fight.

The 50-something told me he’d called a friend at Occupy LA, who described a very different relationship with police. ‘In LA, the cops actually provided them with port-a-potties. They even let them into City Hall to use the bathroom.’

‘And I heard that when the weather got bad in Cleveland, the cops actually donated tents.’

I’d heard similar positive stories about police from people  at Occupy DC (or Occupy K St). People there said police hadn’t bothered them, and had even escorted their marches through the city, stopping traffic to let them pass. The Parks Authority had also granted them permission to camp in the park, as long as they didn’t hurt the trees. Starbucks was even letting them use its bathroom.

In Denver, however, the community’s relationship with the police has long been strained. ‘Denver police has a decades-long legacy of police brutality. But I’ve never seen a show of force like what we’ve seen today. This is something else,’ he said, looking over toward the riot police, shaking his head.

‘We had a food tent – literally just a table with a tarp over it. But the police tore it down, because they said it was a ‘structure’, and you can’t have a structure in the park.’

Indeed, just hours before the confrontation, the new Denver police chief had pledged to lessen the rift between police and the community.

In front of the police line, yoga instructor and media liaison for Occupy Denver, Jeannie Hartley, was urging protesters to upload their photos and videos. ‘Upload them everywhere you can. Send it to iReport at CNN. Post them on Twitter and Facebook. Send them to (CNN anchor) Anderson Cooper.’

‘I’ve been defending the police from day one, but after what I’ve seen today, I’m through defending law enforcement,’ she shouted, her words repeated by the crowd (a common technique at occupy protests called ‘mic check’ – in most cities, microphones and loudspeakers are prohibited).

Standing on the pavement at the end of the police line was a man dressed entirely in black, leaning against a bicycle. His hat read ‘Copwatch’.

‘We’re here to watch the cops,’ he said. ‘We don’t have weapons – we have cameras.’

Copwatch is a national network of groups that observe police activity, documenting incidents of police brutality. This man was in his 40s – he asked not to be named. He said he’d started working with Copwatch after a policeman pulled a gun on him and threatened to ‘blow my head off’. ‘He made a mistake, because I was a private investigator,’ he said. ‘I sued him, and I won.’

Denver’s Copwatchers are trained legal observers, he said, and provide know-your-rights training to protesters. There are five different Copwatch units in Denver. ‘All Copwatchers are uniformed, and have cameras and (two-way) radios,’ he explained.

Standing behind him, was a boy who was barely old enough to be in high school. ‘This is Shawn – he’s fourteen,’ the Copwatcher said. Shawn had joined the group when a policeman had stormed and arrested people in his house. It was unclear whether people in the house were involved in criminal activity, but Shawn said that since the policeman had no search warrant, and had entered a closed house, he had acted unlawfully. Shawn’s mother sued the policeman, and won. He was taken off the force.

‘My aunty is a writer at the Denver Post,’ said Shawn, referring to the local newspaper whose offices were barely 50 metres from where we were standing. ‘My family is very supportive of me.’

‘There have been changes for the better,’ Shawn explained. ‘The police are scared of cameras. They’re scared of being taken off the task force. There was an incident here today: a lady was pregnant, and a cop shot her with rubber bullets. She is two weeks from labour, and she was shot. She was taken by ambulance to the hospital.’

As we were speaking, the riot police began retreating away from the park, back towards the Capitol. Several cars tooted their horns in support as they drove past the park, raising cheers from the occupiers.

Twenty-year-old Seth Van Der Vorst had also been at the protest for the past month. I asked him if he thought people would come back. ‘If they kick us out, we’ll be right back here tomorrow with new signs, new tents. We’ll be back to occupy.’

Walking back up the pedestrian mall, tuk-tuk drivers in Halloween costumes cycled at breakneck speed, picking up passengers in wild costumes. A breakaway contingent from the park was also marching up the mall, shouting slogans about non-violence and police brutatity.

I caught two cyclists having a break, and asked them what they thought of the protest.

‘I have mixed feelings about it,’ said one of them, a man in his late 20s. I think it’s great that people are standing up for their rights and calling for change. But I was down in the park on the first night they tried to close down the camp. There was a group of  people chanting about non-violence. But then there was another group yelling, ‘Fuck tha police.’

We kept our distance from the marchers, and so did the police. Four police cars trailed silently, lights flashing.

Most people on the mall ignored them both.