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.