I look at my cell phone, feel it in my hand, and realize I’m speaking with my mother. I’m scared. I know I’ve been repeating myself, I can sense it, but I can’t remember exactly what I’ve been repeating. The digital clock says 23:32. Nearly midnight.
My body hurts. My tongue is bleeding. A pool of blood and spit is on my pillow.
I bit myself, but I didn’t mean to... don’t remember, couldn’t control myself –
The situation feels familiar and foreign at once. Where am I? How did I get into this bed? It’s like I started a movie in the middle and I don’t remember pressing play. Like I woke up in the middle of a scene I don’t recognize and I can’t rewind.
I know why I called, but I can’t remember doing the dialing. I’m repeating myself again.
I failed again. Not again. I know I took my pills. Wait, did I? Why can’t I remember? I’m trying to look back and there’s nothing there.
I’m ashamed like I was before. I cry like I have cried before. I remember crying like this before...
… I wake up and the sun is glowing through my window. The white curtain is bright. My cell phone is resting next to my pillow where I left it hours before. My memory has returned and my head is throbbing. The small room with green walls that felt unfamiliar in the dark of night feels right again. I’d moved in just four weeks before to begin my college semester abroad.
I stagger into the bathroom,to survey the damage. My legs are sore -- as if I had run miles in my sleep. Gazing in the mirror with my mouth agape I see an angry red bump where I bit my tongue, a sliver of blood shining on top. I’ll speak with a lisp for a week or so. There’s a green-purple bruise on my left elbow, a sibling of sorts, larger, on my left inner knee. Did they collide somehow? Knee versus elbow? Or perhaps they both crashed into my dresser, at different moments. I wonder if it’s noisy when it happens. I wonder if anyone heard me.
I quietly return to my room to review my cell phone call history. Even though I couldn’t remember where I was hours before, I easily recalled the sequence of twelve numbers required to place an international call to my mother. That information is locked somewhere in my misfiring brain, never disturbed.
It’s the second seizure I’ve had in a month. I was diagnosed with epilepsy years ago, when I was 15, and my seizures had just about stopped once I started taking medication. My neurologist says that I don’t always enter my REM cycle correctly, that’s why I have seizures. But as for the disruption in my REM cycle, no one can explain that. He once called it extra-ordinary.
But two seizures in four weeks? That was extra-normal. Concerning. I was nearly 6,000 miles from my neurologist, in an apartment in southern Spain. I had no doctor to call and I didn’t even know how to say “seizure” in Spanish.
I took a taxi to the hospital. I wore a blue sundress that displayed a collection of fading bruises on my shoulder, markers of the most recent seizure. My backpack was slung over my arm and my Spanish-English dictionary was clutched in my hand. I had written two words on the inside cover the night before – “ataque” and “epilepsia” – Spanish for “seizure” and “epilepsy”.
The Spanish neurologist was pleasant. Handsome too. Far superior on both counts to my American neurologist. He scheduled me for an MRI and EEG that day even though I’d undergone both tests numerous times before. Still, my primary concern in that moment was that I had to return to school after my appointment and I would surely have some residual EEG putty left in my hair.
The MRI came first and a radiologist guided me from the waiting room. I was strangely calm and the Spanish was flowing out of my mouth perfectly. Perfectly! A thought ran through my mind: “wow, I am speaking so well right now!” (but perhaps the thought came out in Spanish).
The radiologist asked me to lie down on a sterile white table that had slid out from inside a large white tunnel, the MRI scanner that I would soon inhabit. He placed my head in a white apparatus that prevented me from turning my neck and told me that I would be in the MRI machine for about a half hour. 'Don’t be afraid', he said, 'you can call for me if you want to stop the test.' He touched my knee and he smiled. I smiled back. He slid me into the tunnel and left the room, to observe the images of my brain safely from behind a thick sheet of glass.
It is perfectly dark inside of an MRI scanner. Everything looked like the black of my inner eyelids. I opened my eyes and closed them, opened and closed. Nothing changed.
It was peaceful in the dark. It was quiet, and no one, save for the doctors, knew where I was.
Then there was a bang. And another bang. And another. A gun is being shot over and over and over in the MRI machine and I can’t see anything. I can’t move my head. I’ve heard this noise before – the camera taking rapid-fire photos of the mess in my cranium. But I can’t move and I’m alone and I’m scared and oh god, how do you call for help in Spanish?
I had never seen someone have a seizure until I was 23; I was in a restaurant. Friends and family who have witnessed mine have described the episodes to me – how my arm and leg muscles clench and flail, how my body shakes violently, how my jaw, my teeth, grip down on my tongue without regard for the harm caused.
I was walking out of this small restaurant after dinner, zipping my coat up, preparing to face the cold winter weather when I saw him, seizing in the laminated plastic restaurant booth. His mouth open, his arms flailing, his eyes rolled back in his head. He had lost control; he was an animal. A crowd was forming. I was disgusted -- I saw myself in him.
The man’s friends laid him down on his side. They hugged him, speaking to him so calmly.
And I wanted to hug him too.
A woman with a drink in her hand and one white ear bud in one ear started yelling, “Put something in his mouth! Put something in his mouth!”
Another shout. Louder and stronger. My voice. “No, that could choke him!”
The man’s face began to soften, showing confusion. His eyes blinking on their own accord. I left the restaurant, not wanting to be left among the gawkers. My heart raced. I walked on.
“Hey baby, let me see you smile!” A man called to me.
I take a medication called Keppra twice a day. I used to hide it – go into the bathroom when I needed to take a dose -- disguising the rattling noise of pills being poured out of a bottle. It was a lonely secret – I was damaged in a mysterious way, not even my doctor understood it.
I was 18 the first time I spoke of it outside of my family. I had to tell my college roommate. I had to tell Rachel. I tried so many times but I couldn’t will the words out. And I pitied her deeply for having to share a room with someone like me. Days after I intended to speak, my voice came.
“Rachel, I should tell you, since we’re going to be sleeping the same room...”
“Well, I have this, it’s not that big of a deal...” My voice began shaking, cheeks trembling.
“I have this seizure disorder, but it only ever happens in my sleep.”
Her eyes widened, but it wasn’t fear.
The conversation was a surprisingly brief one. She wanted to know what she could do to help me, as if it were her duty. And then she went back to adorning our dorm room walls with posters. My hands ceased shaking, and I stood up to help her.
The trouble with a panic attack is that once you become aware that one may be imminent, there’s not much you can do to stop it. That’s been my experience, at least. I didn’t want to stop the MRI. I didn’t want to call for help. But it felt like the darkness was swallowing me, it felt like the tunnel was tightening around me. Once I became fully aware of my inability to move, I had to move. I needed to move. But I was afraid to move amidst the bang-bang-banging of the camera above my immobile head.
Taking deep breaths usually doesn’t make a difference, but I tried it, just in case. I could feel my heart beat quickening in my chest, but I couldn’t move my arm to my neck to measure my pulse. I couldn’t move. Deep breaths.
It’s funny, the things that come to mind when you’re in perfect darkness. There was nothing to sense except the rhythmic pounding of the camera.
I thought of Rachel. One moment, all I could hear was pounding, and the next, I was absorbed in utterly unprovoked thought about my best friend and college roommate.
She was fascinated with meditation and alternative Chinese medicine. She believed passionately in things like auras and energy healing. I was skeptical of these ideas, to say the least, but when I thought of her, I thought of her immensely calming presence, her positive spirit.
And the banging stopped.
I once asked Rachel if she ever saw any conflict between her belief in energy healing and her devout Christianity.
“No.” She replied, through a small smile on her face.
In Pasadena, CA, there’s a small denomination of the Church of the Brethren. Rachel is a parishioner. I didn’t know it at the time, but while I was panicking in the darkness of the MRI scanner, this denomination spoke my name in prayer. I had shared with her that I was having health problems, and unbeknownst to me, Rachel had added my name to their prayer list. A church I had never visited, filled with people I’d never met, prayed for my health every single Sunday for six months.
Today, I have no doubt in the power of prayer, or the power of fellowship, for that matter.
During the day I wear this silly bracelet around my wrist, silver with a heart charm. It’s a charm bracelet, and I hate charm bracelets.
This silver bracelet has a single, heart-shaped charm hanging from its loops. A red star forms the background for one of those swirly “medical alert!” symbols. The back has an engraving with my name in tiny letters, not unlike a dog tag. “Epilepsy”, it reads, below my name.
It was left in the bottom of my jewelry box for years. If I didn’t acknowledge it, it wasn’t real. It’s taken a long time to become comfortable enough with my disorder to wear a bracelet on my wrist that proclaims it.
Now, my silver charm bracelet is fastened around my wrist every day. I’ve forgotten to wear it a handful of times; something always feels missing. I wear it in case something happens and because epilepsy is a part of me. It’s not hidden any longer. I have friends like Rachel to thank for that.
Epilepsy is a struggle. The seizures make me hurt myself, make me forget myself.
And in those postictal moments when I’ve regained consciousness, but lack my short-term memory, one thing is certain: I’m not alone.