Episode One, 1992.

“What’s wrong with me,” I wailed, sobbing like a preschooler. A doctor smiled down at me. “That’s what we’re going to find out,” he said, patting my arm.

My body’s crazy throes had just subsided, thanks to the sedative flowing directly into my veins. At least, I thought, if you’re going to have a physical equivalent of a nervous breakdown, it’s handy to do it in a hospital emergency room, surrounded by a half-dozen men and women in white.

I heard “CT scan” mentioned, and knew they suspected a tumour. But the sedative forced me to relax, as I pondered the path I had followed which brought me here.

***

Just a few weeks ago, I was perfectly fine. I adored my new apartment of several months. I revelled in my newfound independence, after many years of single parenthood. My children were grown and doing well, living on their own.

The first sign of something ‘not right’ happened one night in bed. A strange tingling invaded my right hand and foot. Then a severe cramp in my mid-section, on my right side, clutched me with surprising strength and wouldn’t let go. I couldn’t remain in a supine position, so I slid down the side of the bed and sat there, holding my side, taking shallow breaths. Panting, I waited it out.

It was over in about a minute. I chalked it up to a severe muscle spasm, an isolated incident that probably would never recur. But I was wrong.

Several days later I was on the phone with my friend, when I started to feel the same tingling in my right hand and foot. I stumbled into my bedroom, thinking that I would lie down; already my right-side stomach muscles were beginning to contract. I tried to stretch out on the bed, but couldn’t – my body tensed up strongly, all along my right side. Instead I lay on the floor, on the carpet, face down. Somehow this position seemed the least uncomfortable. Seconds passed that felt like hours, as my body, rigid now, twitched rhythmically.

When it was over I felt weak, but relieved. I tried to think, to analyze what was happening to me. I mentally went down the list: stress, low blood sugar, or…?

The low-blood-sugar theory seemed doubtful; I’d already had a glucose-tolerance test a couple of years before, with normal results. But stress had to be a factor, I thought. Hadn’t I often reacted to stress or anxiety in physical ways? Maybe I was still frazzled from the move. I convinced myself of this hypothesis, so I didn’t consider seeking medical help. Yet.

A few days after this episode, the tingling began again. I headed for the kitchen, inanely thinking that food might help. I yanked open the fridge, blindly grabbed at something – salami! – and plunked it down on the counter. [Seems laughable in retrospect!] I grasped a knife to slice it, and saw to my growing horror that I could barely hold onto it: my right hand was stiffening, turning into a “claw.” Down on the floor I went, deliberately, before I fell down.

But I wasn’t on the floor at all. There I was, up near the ceiling, looking down at my thrashing body below: right hand clenched into a claw, right arm and leg jerking and twitching, stomach contracting, hard. And suddenly my watching self exclaimed, silently: “Hey! This is just like an epileptic seizure!”

Well! I’d heard of out-of-body experiences before, but I never expected to have one myself. When the seizure – for that’s what I now realized it was – ended, I sat up, dazed, noting the poignant sight of my glasses lying askew beside me. How can it be epilepsy! It’s impossible, I thought.

Confused, I finally called my family doctor. She listened to my description of my ‘episodes,’ and then asked me, “Did you ever lose consciousness?” When I said no, she confirmed my own denial by saying, “Well then, it’s not epilepsy.” Somehow reassured, I made an appointment for an examination the next day; we also planned a new glucose tolerance test.

But plans sure changed. That evening, the dreaded tingling again began to creep up my right extremities. Oh, no! I quickly told my friend on the phone that I had to hang up. I started to lie down, right there on the floor of my study. An astute voice in my head had just enough time to warn, Take the telephone with you! – so I put it on the floor, and then lay next to it.

This had to be the worst so far. My body jerked violently… I’m going to die, I thought! Even my neck muscles were contracting; I feared that my trachea would be “cut off” by the squeezing. Dial “911,” I told myself frantically. I tried reaching for the phone with my “good” left hand, but realized it would be useless – I couldn’t talk; I was practically strangling! Wait… wait… while my body held me hostage… Finally, my muscles eased just a little. That was it, I had to phone for help, now! Even if this wasn’t epilepsy, it was still horrifying to feel such loss of control, such fear for my very life. I wanted to get to a hospital right away.

Finally, my trembling fingers jabbed the phone buttons. Although I could only whisper due to sheer exhaustion, I managed to get my message across, address and all. Minutes later, I groped my way to the door and greeted two extremely compassionate ambulance technicians.

By the time we got to the emergency room, I was calmer, though very weak. A young resident examined me and didn’t seem to find anything unusual. In my addled state, I feared she would think I made up the whole thing! Then an orderly wheeled me – perched on the hospital cot – into a corner, apparently for observation.

Soon my daughter, Kathy, was looking down at me, worried, but comforting me. I’d left a message on her answering machine, earlier. She had called her father, and he was with us too. But gradually, as I gazed at Kathy and my ex-husband on either side of my cot, as I felt their concern and caring, I began to tremble with fear. Fear of the unknown. “What’s happening to me,” I cried, looking from one to the other.

Then it began again. The hand, the foot. “Quick! Get the doctor,” I urged my ex. “It’s going to happen again!”

“Now??” He peered down at me anxiously.

“Go, quick!” I turned onto my stomach as the contractions began to tear up and down my right side… worse than ever before. I was clear-headed, though surely over-optimistic: I thought they could stop the seizure in its tracks with a shot of some kind, immediately. “Help me! Help me!” I pleaded. To my horror, the only sound to come out of my throat was a strangulated series of groans. Soon I heard a male’s authoritative voice say “I want you on your back,” and I was unceremoniously flipped over.

Hell: My entire right side was a constricting, jerking, alien mass of nightmarish strength. Terrified, helpless in its powerful grasp, I squinted through my turmoil, and saw my bed surrounded by doctors. I was a living specimen, a lab rat! Why don’t they do something to stop it, instead of just standing there watching! Surely they won’t allow me to die right in front of them!

Now the violence of the convulsions began to diminish. The pincushion brigade took over: Someone started an I.V. drip of a sedative and Dilantin – an anti-convulsive drug – in my hand, after several tries for a vein. Someone else tried to get a blood sample from an artery in my left wrist; so excruciating was the pain that I yelled at the resident, on her third or fourth try, “If you stick me again I’ll kill you!”

It was not a day at the county fair.

***

I’d been at the hospital for five hours. The hastily arranged CT scan showed nothing out of the ordinary. For this, the doctor said, I should be exceedingly thankful. “When we do find something, it’s always bad,” he told me.

Eventually stabilized, I was sent away with a referral to a neurologist and a prescription for Dilantin. I couldn’t believe that my body had “betrayed” me like this.

Two days later, after giving me a complete neurological examination, the neurologist pronounced: “You have epilepsy.”

Shocked, I didn’t hear much of what he said after that. Luckily my then-boyfriend was with me. When we left the office, I collapsed against his chest in tears.

The neurologist arranged more tests. An EEG recorded my brain’s electrical activity. Another CT scan – this one with “infusion,” or dye – provided an image of my brain’s physical structures. All results were normal. More blood tests followed, to monitor the Dilantin in order to find the ideal dosage for me.

“Could be just a tiny lesion in the brain,” the neurologist said, “that doesn’t show up on the scans.” He said he would refer me for an MRI scan which could show more detail than the CT one.

“What about stress?” I asked. “Could that have caused it?”

“No, epilepsy is not caused by stress. Stress can be a trigger, but not a cause.”

Oh. There went my theory.

“But my G.P. said it couldn’t be epilepsy… because I was always conscious.”

“There are many different forms of epilepsy.”

Oh, again.

So my family doctor had missed the diagnosis. Well, I was in no mood for confrontations. I called her office and gave the news to her secretary.

Weeks went by. I had many would-be seizures, where it felt like my right side was trying to stiffen up, but the Dilantin worked well; in every battle for control, the drug always won. About five weeks after my diagnosis, we found – after some experimentation – my most beneficial therapeutic range of Dilantin. The ‘attempted’ seizures stopped.

At that point, the most annoying side effect of the disorder was that I was not allowed to drive… at least until I’d been seizure-free for one year. At first I mourned the loss miserably. To me it symbolized a major loss of autonomy; I hated having to rely on lifts here and there. But I soon rediscovered public transportation and the joy of reading on the bus and Metro. Not so terrible after all.

A couple of years later, with no further seizures, I was allowed to drive again, and was weaned off Dilantin… none the worse for wear… or so it seemed.

Stay tuned for Episode Two, 1997: MRIs Don’t Tell Lies.