At the end of 1997 I was thirty-two, living in Richmond, Virginia and in a relationship that was approaching its third anniversary. My boyfriend and I were happy enough, I thought. We shared a rented house, cooked meals; accumulated electronics, bad art and two dogs. Then one day I realized I wasn’t happy at all. But there we were: living together with a pair of dachshunds circling our feet. The break-up was my decision. As we were in the process of moving into separate places, my now ex-boyfriend said he didn’t think the dogs should be wrenched apart just because I’d decided to wreck everyone’s life. He wanted to keep them both. I knew he was hurt and angry, but I also knew that the dogs were very attached to each other (they spent every waking and sleeping hour together, cleaned each other’s ears, stared into each other’s eyes with gummy affection). After much hand-wringing, I consented, stipulating that I wanted to see the dogs on a regular basis, maybe take them every second or third weekend. I wanted visitation rights.
A week later, my ex called and said we needed to meet. He claimed to have some papers for me to sign that would assure his being able to get the dogs proper veterinary care in the event of an emergency.
Something was afoot, I knew. What vet would refuse to treat an animal because the paperwork wasn’t in order? But I felt too horrible about instigating the break-up to say no. I also felt exhausted. I hadn’t been sleeping much, was weepy at the drop of a hat, was antsy and eager for this segment of my life to be over. I told my ex I would meet him on my way to work but that I wasn’t up for another argument, not today. I was about to start a double shift at the bar, about to embark on a nine-hour conversation with strangers, wherein everyone yammered and I had to listen and keep a stupid grin plastered on my face while I poured drinks and cut lemons.
We met in the food court at the mall (my idea; I thought the public setting would negate the possibility of an argument). Exactly what was on the papers he brought, I can’t say. I didn’t read them. I only remember the logo for the American Kennel Society at the top, and that my hands were shaking, and that his demeanor was very calm, all business. Once I’d signed and he’d folded up the papers and I’d paid for our coffees, we parted ways. But a few moments later, still in the mall and on my way to the parking lot, I felt something jab into the middle of my back. His umbrella, it turned out. Did I want to see a monster? he asked. Did I really want to see a monster? (As if I’d mentioned that I was toying with the idea.) I told him no, I didn’t want to see a monster. Too bad, he said. Then he informed me in a loud, head-turning voice that I was mentally ill, that I was a terrible human being and that I’d never see my dogs again.
And so we argued in that public place I’d thought would obfuscate arguing. We raised our voices and made wild gesticulations and eventually stormed away from each other – only to storm back and argue some more. In short, we made asses of ourselves. There was a last word, but I can’t remember which one of us had it.
Minutes later, barrelling down Monument Avenue in my pickup truck, I began to experience the mental flashes neurologists call auras. At the time, I didn’t know them by that name, or by any name. They’d been happening since I was an adolescent – maybe every few months, always at times of high stress – and they were so bizarre and difficult to convey that I’d never tried to describe them to anyone. Here’s my best shot: Imagine your mind is tripping through a litany of memories. One memory in particular stands out because it’s simultaneously both familiar and foreign. (In my case, this is always an aural memory – something someone once said to me, or something I heard in a movie, or something I may have listened to over and over again on a storybook record when I was a child.) What is that sound/voice/musical phrase? Where is it from? You try to place it but are unsuccessful, and then – you can’t help yourself, it’s like running downhill and picking up speed – you become obsessed with placing it, and it’s this effort that starts a hot wave pulsing inside you, stemming from somewhere in the vicinity of your stomach and eventually climbing up your neck and welling into your head: wa-wa-wa. Before you know it, an hour has passed, sometimes two. You’re disoriented and mournful, you can’t remember what you were doing, you only know that you’ve undergone something intensely private and unsettling. If you’ve been reading a book, whole chapters are wiped from your mind. If you’re at the cinema, the bad news is that you’ve wasted your money; the good news is that you can go to the same movie again at some future date and enjoy it for the first time.
Auras are a symptom of temporal lobe epilepsy. Focal epilepsy, to be precise – a chronic neurological condition that brings on what are called ‘absence’ seizures (temporary loss of awareness) and can indicate the onset of ‘tonic-clonic’ seizures, what we used to call a good old-fashioned fit.
I drove to work, couldn’t have told you where I’d come from, whether I’d stopped at the last three intersections or hit all the lights green. When someone honked for no apparent reason, I raised my middle finger and sailed forth.
An hour into my shift, the awful scene in the mall came flooding back to me. As it did, I once again heard something echoing in my head and felt that hot flush. It wasn’t anything I or my ex had recently said; it was something else, from further back.
The waiter told me I didn’t look so good.
Really? I wanted to say. Because that’s not surprising, I’ve got some serious shit going on right now and it’s stressing me out. Only, I couldn’t speak. Even stranger than that, I didn’t mind that I couldn’t speak. The wa-wa was in full pulse, the hot flush was taking over my face, and I didn’t think there was anything even remotely odd about the fact that I was unable to form a word or summon a syllable. I just nodded.
‘Maybe you should go to the office,’ he said. ‘Take five. I’ll cover for you.’
I kept nodding, and after a few moments I walked out from behind the bar and headed down the long, narrow hallway that extended before me like something in a funhouse. My balance went wonky. I pushed off one wall, then the other, until finally I reached the office, where I closed the door, bolted it and sank down into the desk chair.
Sometime later (five minutes? fifty?), the waiter asked the cook to stand behind the bar and came back to check on me. He tried the door, then knocked. I remember taking comfort in the fact that my chair was on wheels and the floor was wooden; I shoved against the desk, rolled across the office, unlocked the door and shoved against the doorframe until I was back at the desk. The waiter came in and asked if I was OK. According to him, I looked straight up at the ceiling, closed my eyes and slipped like a ribbon onto the floor.
A grand mal (or ‘tonic-clonic’) seizure, according to the Mayo Clinic, is characterized by falling unconscious and having muscular convulsions. I’m told I didn’t convulse. Instead, I remained inert until the paramedics attempted to strap me into a gurney and ferry me out of the bar, and then I struggled – but only a little. Either surrendering or relaxing, I folded my hands over my stomach and crossed my legs at the ankles, like someone in a lounge chair.
I woke up a day later in Stuart Circle Hospital with plastic disks attached to my chest and a needle sunk into my arm, dripping something clear into my veins. I was completely disoriented and had the worst headache I’d ever experienced. And that, for a time, was the sum total of all I knew about myself.
A nurse, and then a doctor, tried to explain what had happened.
‘I want to go home,’ I said, though I couldn’t remember where I lived or whether or not I had a roommate, a boyfriend, a wife or an entire family – even children – waiting for me.
‘You seem to have had a grand mal seizure,’ the doctor told me. ‘You’ll be here for at least three days while we run some tests to try to figure out why you collapsed.’
Nonsense, I thought. I hadn’t collapsed, and what the hell was a grandma seizure? Couldn’t I at least stop by my house and sort through my mail, see what bills needed to be paid? Couldn’t I go to a diner and have a cup of coffee?
No. This was serious, and they had tests to run.
‘I want to go home,’ I said again.
I have no recollection of calling my mother or sister, both of whom lived two hours away, but there they were, standing over me and looking very worried. (Later I would learn that what had happened to me was exactly what happens to someone who has a brain tumour, and my mother, who was a nurse, knew this.) I have no memory of calling my somewhat estranged father, and maybe I didn’t; perhaps someone else in the family notified him. All I know is that the phone rang next to my bed, I picked up the receiver and there was his voice: ‘Rick, are you okay?’
‘I’m fine,’ I said. ‘I just want to go home.’
But I didn’t know who I was. I knew I was a person who had legs and arms and a heart and a throbbing head, I knew my own name and the name of the President and what year it was, but I couldn’t remember my personality or anything about the recent past. And this is what very few novels or movies have ever gotten right about amnesia: it’s not exotic; it’s horrific and sad-making. I was sad because I had no story. Elizabeth McCracken, in her novel The Giant’s House, wrote, ‘Babies have no plot.’ Post-seizure, I was a plot-less baby. I ached to remember what my job was. I ached to remember if I had any preferences, any passions, any tragic flaws. I ached to remember if I was a nice person or a mean person, a criminal or a hero. There was nothing exotic about it; I was profoundly depressed because I had no sense of myself, other than as someone glued to a hospital bed.
On top of that, the seizure was like an eraser in the hand of a speed addict: ever scratching at the present moment. I read on the grease board mounted to the wall that it was late December. Had I just celebrated Christmas? Had I given any presents, or received any? I didn’t know. The nurse asked if I’d gotten up to urinate or defecate in the past six hours, but I had no facts on which to draw (other than that I didn’t have to go) and I wasn’t good at lying. ‘Maybe,’ I said.
I grew cranky and impatient. My mother wanted to know if I was in pain. ‘Why?’ I asked, ‘Do I look like I’m in pain?’
‘No, but yesterday you said your head was hurting.’
‘Did the doctor tell you that?’
‘You told me.’
‘Well, that’s interesting,’ I said, ‘since you just got here a few minutes ago, and I haven’t said much of anything.’
She then informed me that she’d been at my bedside for two days.
A friend who’d heard what had happened at the bar brought me flowers and suggested I call my ex and let him know I was in the hospital.
‘What ex?’ I asked.
He told me the name, which rang a bell, and that we’d been together for three years and had recently broken up.
‘That’s awful,’ I said. ‘I should call him.’
But this was before cellphones and I didn’t have his new number, or anything, memorized.
I picked at the tape anchoring the IV. I scowled at the pattern of my gown and at the box that was monitoring my heart. When the owner of the bar called and asked if he could do anything for me, I told him yes, he most certainly could. ‘Would you come by the hospital and get my keys?’
‘Why?’ he asked.
‘I need you to go to my apartment and see if I have any pets,’ I said.
‘What the hell are you talking about?’ he asked.
‘A dog,’ I explained. ‘A cat. A goldfish. See if I have any pets because, if I do, they need to be fed and looked after.’
‘You lost your dogs in the divorce,’ he said. ‘You know this.’
And I did, once he’d said it. But several hours later another friend called, and I asked in earnest for the same favour.
The doctors had X-rayed my head. They’d given me an MRI, an EEG. The headache persisted, and I demanded that I be released so that I could go home, but they informed me that I had one more test to undergo: a sleep-deprivation EEG. Meaning, I would have to stay awake for twenty-four hours and then have another EEG that would tell them what my brain was like under even more stress. After that, I’d meet with a neurologist. Then I could go. But if I fell asleep in the twenty-four-hour window before the test, even for five minutes, I would have to stay another entire day and night.
That was incentive enough. I stayed awake, got out of bed whenever I felt drowsy, walked with my IV pole around and around the floor of Stuart Circle Hospital – which was a kind of circle in that you could follow it through and end up where you started. ‘Here he comes,’ one nurse took to saying whenever I approached the desk. ‘There he goes,’ another would reply as I passed.
In the morning, they shuttled me once again into the EEG room. I thought of Woody Allen in Sleeper. Or was it Woody Allen as a sperm in Everything You Always Wanted to Know About Sex But Were Afraid to Ask? I had seen both films many times but couldn’t remember much about them. I forgot once again that my mother or sister were in town – until I was wheeled back to my room and saw them waiting for me.
‘So,’ the neurologist said later that day, ‘given your history of auras and what happened a few days ago, it’s clear that you have a seizure condition.’
‘What causes that?’
Apparently, no one knows exactly what causes auras or the kind of seizure I’d suffered. But I was told I would have to start taking a daily medication and would be on it for the rest of my life. The neurologist explained that this medication was excellent but might very well deplete my bone marrow as the decades ensued. Which might mean a marrow transplant somewhere down the line. I would need to sign a paper indicating that I understood this.
I signed. ‘Anything else?’ I asked.
‘According to the laws of Virginia, you can’t operate a motor vehicle for six months. We’ve already reported your condition to the DMV.’
My mother drove me home.
Except for what I’ve recounted here, the two weeks leading up to the seizure have never returned to my memory. Nor have most of the two weeks following my release from the hospital. I would live for an hour, then the hour would be erased. I’d have my cereal in the morning, go to set the bowl and spoon in the sink, and find two other bowls and spoons there, still damp with milk.
Things returned to normal. Better than normal, in that I stopped having auras. But being on the medication was like being in a perpetual fog. My thoughts came to me more slowly. Words came to me more slowly. ‘How are the . . . ’ I’d ask my ex over the phone (we were back in limited contact). Then I would mentally flip through a file of imagined flashcards until I found the word I was searching for ‘ . . . dogs?’
The dogs were fine, he’d say. And then one day he added, ‘They miss you.’
I teared up, hearing this – not because I thought the dogs actually missed me but because the statement was so generous on his part.
I called the neurologist and tried to sound casual. ‘Hey,’ I said. ‘Quick question. Is it normal for me to be thinking more slowly?’
Yes, she said. The medication was slowing down the flow of blood to my brain.
‘Huh,’ I said. ‘And that bone marrow thing is still . . . in effect?’
It was, but she advised me not to be concerned about that right now.
I moved to New York and started a new life. But I continued to worry about my marrow.
Eventually, I made an appointment with a neurologist who bore a striking resemblance to the actor Ray Milland. After he’d had me follow his index finger as it tracked back in forth in front of my face, I asked him about the possibilities of weaning myself off the pills.
‘No one does that,’ he said, seeming irritated by the very suggestion.
‘But what about the bone marrow thing?’
‘Mr Ryan –’ he began, and then launched into an explanation of how ludicrous it would be for me to stop taking anti-seizure medication. What would happen if I were waiting for the subway and collapsed just as a train was pulling into the station? What would happen if I fell onto the tracks? His dramatic scenario was superfluous; whenever someone uses my surname and the suffix ‘Mr’ in an admonishing tone, I’m momentarily stunned.
Still, I sought out three more neurologists over the next few years and asked them the same question: Was it possible to wean myself off the pills? The verdict was unanimous: no.
Finally, I consulted a general practitioner.
‘Let me make a call,’ he said. He dialled up a neurologist friend, and they spoke for a few moments. Then he hung up and said, ‘Sure. Taper off, see what happens. If you start having auras again, you can always go back on.’
And so I tapered off, and then stopped altogether. There is a theory that the brain, with the temporary help of medication, can learn not to have seizures. I don’t know whether or not that’s true, but it sounds fascinating and is something I want to believe. I’ve also read that most people who suffer a grand mal seizure won’t ever have another one, and I want to believe that, too. My ex moved on. I did the same. The dogs led good, full lives and are both dead now. My sense of myself has come back. I’ve been off the medication for nearly ten years.
Have I had any more auras?
One. And it was intense and more upsetting than ever. I was with my partner, Fred, and a few friends, waiting for a play to start. They were chatting; I was in wa-wa land. I turned to them, apologized for interrupting, and announced that I had to leave. Outside, I told Fred what was going on. He walked me home and then sat with me for the next two hours while I endured the waves and the hot flashes and the unidentifiable cacophony of voices. I vaguely remember weeping. I don’t remember babbling about the bedroom being crowded with people and complaining that I just couldn’t take it, there were too many of them, and why wouldn’t they shut up? (I take Fred’s word on this; he told me later that it was one the strangest things he’d ever witnessed.)
But other than that one incident, my brain has behaved. I don’t believe for a moment that the auras are gone forever. More likely, the demon is still with me, hovering just inches away, and might reach out tomorrow and tap at my temporal lobe. But if that happens, at least I’ll have the words to describe it – and the marrow.
Photograph © Julie Kertesz