September 19th, 2019

September 19th, 2019

The Episodes

by Ilze Duarte

It was a cool evening in the fall of 1982 in São Paulo, Brazil. I could hear my parents and my sister downstairs in the kitchen, finishing dinner. I was in bed, with my lamp light on, still recovering from “the episode,” as my family had come to call it. It took about three hours to go away this time.

About six months before, different parts of my body started feeling funny, sort of numb: my left calf, hand, and forearm. This would last a few minutes and would scare the living lights out of me, but I told no one. Then the full-fledged episodes hit me, and it was no longer possible to keep these strange, frightening happenings to myself. I would be feeling okay, or at least my usual self, and then, bang, I would get bright spots, c-shaped clusters of shining asterisks spinning in the air and blocking much of the right side of my field of vision. Soon I would become disoriented, couldn’t understand what people said, couldn’t talk, couldn’t even form words in my mind. It would happen anywhere—at school, on the bus, on the street, and once in my car, now that I was old enough to drive.

Lying safely in bed, I should have felt relieved the episode was over, but I didn’t. I knew another episode would hit me again soon, probably in the next few days. My parents were coming upstairs. I overheard them as they stood outside my door.

My mom said: “It seems to be over. She’s in bed.”

“What brings these on?” asked my dad.

“The doctor says it’s something she’s doing to herself. He says she needs to control her nerves.”

At the doctor’s office, earlier that month, I told the doctor my arm felt numb. He touched it and asked if I could feel his finger. I said I could. The doctor looked at me dismissively and told me that if I didn’t “shape up,” I would end up in a madhouse. Years later, I would wish I had told him, “I’m not making this up. It’s like when your foot falls asleep. It feels thick and heavy, and it doesn’t respond to touch the normal way, but you can still tell if someone is touching it, right?” But back then patients didn’t speak up. Doctors knew best, and no one questioned them. I least of all. I was withdrawn and insecure.

Every time one of those episodes came on, I felt like a failure. I had done it to myself again. And I was terribly afraid I was going crazy.

I heard my dad say, “I’m going to go in and talk to her.”

What now? Was Dad going to blame me too?

As Dad opened the door and walked in, Mom stood by the door, looking tenderly at me. Dad stood by my bed and looked down at me. He asked, as a doctor would, “Are you feeling better now?”

“A little,” I said.

I didn’t have the energy or the courage to say, I’m confused. I’m afraid. Why do I keep getting these? And why do I have this pang, this tightness in my chest, like my heart is shrinking? Will it ever go away? I kept my head half buried in my pillow, only making eye contact with Dad when he talked. He went on, still sounding like a doctor.

“Do you feel any pain?”

“No.”

“Then why are you crying?”

I hesitated a bit, unsure of what to say, then replied: “Because I want this to stop and I don’t know how.”

He thought for a while. Then he declared: “You can’t go to school in such a state. You won’t be going to college anymore.”

“No, no!” I started crying harder.

“That seems to be the only solution,” Dad said and walked out of the room.

Mom walked to the bed and sat on it. She stroked my head and said quietly: “Maybe you should see a therapist.”

Even before the episodes had started, I had thought I might need one. I felt all alone no matter where I was, an alien among all the kids at school, and carried around with me a profound, unshakable sadness. I thought maybe I ought to talk to someone. Then I dismissed the idea as foolish. But now that Mom suggested it, maybe it wasn’t foolish after all. What about Dad? He may oppose it. I whispered, “Will Dad agree?”

“Why wouldn’t he?”

“Remember you told me you asked Dad to see a therapist years ago? You said he got angry and told you therapists were for crazy people.”

“I remember. Those were different times, though. I don’t think Dad feels that way anymore. But even if he doesn’t agree—you’re eighteen, you can go see a therapist on your own.”

I looked intently at Mom. I could see she was still wary of Dad, with his violent outbursts, his insults, his disapproval. But over the years, Mom had been more willing to stand up to him when really necessary, if not for herself, then for her daughters.

Mom said: “I’ll talk to Dad if you want me to.”

“Yes, please. I don’t want to drop out of college.” Mom wiped my tears away.

“I know. You won’t have to.”


 

I kept going to college. I started seeing a therapist and continued to do so for several years. The episodes became few and far between, but they never stopped. I couldn’t seem to “shape up.” But I was determined I was not going to end up in the madhouse.


 

It was the fall of 1991. I had been living in Pennsylvania for eighteen months, thrilled to be working on a master’s degree, and had not had any episodes all that time. Near the end of my third semester, sometime during finals, an episode hit me. It lasted several hours, and the next day I went to the university health center. I described my symptoms to the nurse, who diagnosed me on the spot.

“You have a classic case of migraine.”

“Migraine? But I don’t feel any pain.”

“The symptoms you have are often called migraine substitutes. Instead of the pain, you get these other symptoms. It’s still a migraine.”

A classic case of migraine, the nurse had said.

“How come my doctor and my therapist in Brazil didn’t know about this? The doctor said I was doing it to myself.”

“You’re not doing it to yourself. There’s a psychosomatic component to migraines, and that’s true for a lot of conditions, but you’re not causing your migraines.”

I felt a mix of relief and rage. How could they not have known? How could they have let me think all those years I was bringing all that suffering on myself? What if I had seen other doctors? I had lived in a big city, with lots of resources, but it had never occurred to me or to my parents to get a second opinion. The phrase “second opinion” wasn’t even in our vocabulary then.

A new phase was about to start for me. The “episodes” no longer frightened me because now I knew what they were and where they came from. I knew I hadn’t caused them. It would take me a few more years to see doctors as partners in my healthcare, but from the moment of my diagnosis I understood I deserved to treat myself with greater compassion.

Since adolescence, Ilze Duarte has suffered from debilitating migraines, which manifest sometimes as excruciating pain and sometimes as neurological deficits such as impaired vision and speech. Recently, the migraines have occurred less often, but she has not yet found medication that can prevent them or cut the symptoms short. Ilze writes short prose and translates works by contemporary Brazilian writers. Her translations appear in Your Impossible Voice, The Massachusetts Review, Columbia Journal Online, and Ambit. Her short story “Catarina and Bianca” appears in New Plains Review. She lives with her husband and two daughters in Milpitas, California.