I BECAME A WOMAN...AND LOST MYSELF 2-What Remained

CHAPTER ONE: The Diagnosis That Destroys Hope

Porto, Portugal — April 2011 (Age 32)

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Dear Diary,

I have not written in you for six months. Not because I had nothing to say. Because I was afraid of what I would write.

Today, I finally got the diagnosis.

Twenty years. Seven doctors. Eight, if you count Dr. Rocha, who told me my body was “difficult.”

The eighth doctor was a woman. Her name is Dr. Lúcia. She has grey hair and kind eyes and hands that do not shake. She listened to me for an hour. An hour. No one had ever listened to me for an hour.

She ordered an MRI. She ordered a transvaginal ultrasound. She ordered blood tests that required three vials and left a bruise the size of a fig.

Then she sat me down in a room with a poster of the female reproductive system—the same poster I had seen in Dr. Rocha’s office—and she said the words I had waited twenty years to hear.

“You have endometriosis. Stage four. Deeply infiltrating.”

I did not cry. I had used up my tears in the parking lot.

Then she said the words I had not waited to hear.

“There is a chance you may never have children. Are you prepared for that?”

The room did not spin. The floor did not open. I just sat there, my hands on my knees, and I felt something I had not felt in a long time.

Grief.

Not for the children I had not yet imagined. For the choice. They had taken the choice.

— Agnes

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I.

The hospital was called Hospital de São João — Saint John’s Hospital. It sat on a hill in Porto, white and modern, with windows that reflected the grey April sky. I had walked past it a hundred times. I had never gone inside.

Today, I walked through the automatic doors at eight in the morning. The air smelled of antiseptic and coffee and something else—something like waiting. The waiting room on the fourth floor was full of women. Some were pregnant, their hands on their bellies. Some were old, their faces lined with years. Some were young, like me, sitting alone, staring at the floor.

I sat in the corner. I had brought the black notebook—the one from the papelaria, the one that had become the book. I did not open it. I did not want to write. I wanted to be told the truth, for once, without having to fight for it.

“Agnes Souza?”

The nurse was young, with dark hair and a kind smile. I stood up. I followed her down a hallway. The walls were beige. The doors were white. Room 412 had a sign with a plastic flower.

Dr. Lúcia was already inside. She stood up when I walked in. She shook my hand. Her grip was firm, warm.

“Thank you for coming,” she said. “Please, sit.”

I sat on the examination table. The paper crinkled. The poster on the wall showed the uterus, the ovaries, the fallopian tubes—cross-sections and labels I had memorized years ago.

“I have reviewed your MRI,” she said. “And the ultrasound. And your blood work.”

I waited.

“You have endometriosis,” she said. “Stage four. Deeply infiltrating.”

The words landed in my chest like stones. But they were not heavy. They were light. Because after twenty years of being told I was difficult, dramatic, too sensitive—someone had finally named the thing that had been living inside me.

“I knew it,” I said. My voice was steady. “I knew it wasn’t normal.”

Dr. Lúcia nodded. She did not say I’m sorry. She did not say you should have come sooner. She just nodded.

“The endometriosis has spread to your bowel and your bladder. It is also affecting your ovaries. You will need surgery.”

“What kind of surgery?”

“Laparoscopic excision. We will remove the lesions. But there is a risk.”

I knew what was coming. I had read the websites. I had joined the forums. I had seen the word infertility so many times that it had become a background hum, like the refrigerator.

“The risk of infertility,” I said.

“Yes.” Dr. Lúcia looked at me. Her eyes were kind. “The endometriosis has damaged your ovaries. Even after surgery, there is a significant chance that you may never conceive naturally. Or at all.”

She paused. She let the words settle.

“Are you prepared for that, Agnes?”

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II.

I did not answer immediately.

I thought about the girl in the olive grove. She was eleven. She had never thought about children. She had never thought about a future at all. She had only thought about the next branch, the next fig, the next race to the tree.

I thought about the girl on the tram. She was twelve. She had been touched by a stranger’s hand. She had frozen. She had not screamed. She had learned that her body was not hers.

I thought about the girl in the hoodie. She was thirteen. She had cut off her hair to become invisible. She had buried the brown strands under the olive tree. She had not thought about motherhood. She had thought only about survival.

I thought about the girl in the photo. She was seventeen. She had trusted a boy who broke her. She had become a ghost in her own body.

I thought about the woman in the parking lot. She was twenty-nine. She had cried for forty minutes after a doctor told her that her body was “difficult.”

That woman was me. And now I was thirty-two. And I was being asked if I was prepared to never have children.

“I don’t know,” I said. “I have never thought about it.”

Dr. Lúcia nodded. “That is honest. Most women say ‘yes’ or ‘no’ immediately. They are lying to themselves or to me. You are not.”

“What would you do?” I asked.

She smiled. A small smile. “I am not you. But I will tell you this: you have time. The surgery is not tomorrow. You can think. You can talk to someone. You can decide what you want.”

“What if I don’t know what I want?”

“Then you wait. The endometriosis will not go away. But you do not have to decide today.”

She handed me a pamphlet. White, with blue letters: Endometriosis and Fertility: What You Need to Know.

I took it. I put it in my bag, next to the black notebook.

“Schedule the surgery,” I said. “I will decide about the rest later.”

Dr. Lúcia wrote a referral. She handed it to me.

“You are brave,” she said. “Not because you are not afraid. Because you are afraid and you are still here.”

I stood up. I shook her hand. I walked out of the room, down the hallway, past the waiting room, into the elevator, out of the hospital, into the grey April air.

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III.

I sat on a bench outside the hospital. The sky was low. The wind was cold. A woman with a stroller walked past. The baby was crying. The woman was tired. She did not look at me.

I thought about that woman. She had a child. She was tired. She was probably happy, in the tired way that mothers are happy. She had made a choice—or maybe the choice had been made for her.

I had never made a choice about children. I had never been in a relationship long enough to have the conversation. The men I had known—Duarte, and the few who came after—they had not been fathers. They had been boys who needed mothers. I had been too busy surviving to imagine creating a new life.

But now the choice was being taken from me. Not by a man. By my own body. By the same body that had bled, cramped, been touched, been photographed, been shamed. The same body that had carried me through twenty years of pain.

I took out the black notebook. I opened it to a fresh page. I wrote:

I have stage four endometriosis. I may never have children.

I do not know if I wanted children. But I wanted the choice. And now the choice is gone.

I am angry. Not at Dr. Lúcia. At my body. At the doctors who dismissed me. At the years I lost while the endometriosis grew.

If someone had listened when I was twelve, when I was seventeen, when I was twenty-four—maybe this would be different. Maybe I would have had time.

But no one listened. And now I am thirty-two, and I am sitting on a bench outside a hospital, holding a pamphlet about infertility.

This is what it cost me to be a woman. Not just the pain. The theft of time.

I closed the notebook. I put it back in my bag.

The woman with the stroller was gone. The baby had stopped crying. The wind was colder.

I stood up. I walked to the bus stop. I waited.

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IV.

On the bus, I called my avó.

“How was the doctor?” she asked.

“She said I have endometriosis. Stage four. I need surgery.”

“And?”

“And I may never have children.”

There was a silence. I could hear my avó breathing. The same breathing I had heard all my life, steady and slow, like the tide.

“Do you want children?” she asked.

“I don’t know.”

“Then do not mourn the loss of something you never wanted. Mourn the loss of the choice. That is real.”

“How do I mourn a choice?”

“You feel it. You write it. You speak it. And then you decide what you want now. Not what you might have wanted. What you want.”

“What if I don’t know what I want?”

“Then you wait. The waiting is also a choice.”

She paused. I heard her light a cigarette—she had started smoking again, after my father left for the last time.

“I never wanted children,” she said. “Not really. I had you because it was expected. I do not regret you. But I never chose you. The choice was made for me.”

“Are you glad you had me?”

“Yes. But I would have been glad without you, too. Happiness is not a child. Happiness is a decision.”

I did not know what to say. My avó had never been sentimental. But her words landed in my chest like stones. Not heavy. Grounding.

“I love you,” I said.

“I love you too. Now eat something. You sound thin.”

She hung up. I looked out the window. The streets of Porto passed by—the river, the bridges, the tiled buildings, the people.

Happiness is a decision.

I did not believe her. But I wanted to.

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V.

I went home to Coimbra. The apartment was cold. I turned on the heat. I made tea. I sat at my desk.

The pamphlet was on the table. Endometriosis and Fertility: What You Need to Know. I had not opened it. I did not want to know. I wanted to be told.

I picked up my phone. I searched for “endometriosis and infertility stories.” A thousand results. A thousand women who had been told the same thing. Some had children anyway. Some had adopted. Some had never had children and had learned to be happy. Some were still grieving.

I read for an hour. I read until my eyes burned. I read until the tea went cold.

Then I put the phone down. I looked at the pamphlet.

I opened it.

The first page had a drawing of a uterus. The same drawing from the poster. The same drawing I had seen in Dr. Rocha’s office. But the words were different.

“Endometriosis affects 1 in 10 women of reproductive age. Up to 50% of women with endometriosis experience fertility challenges.”

Up to fifty percent. Not all. Not none. Somewhere in between.

I closed the pamphlet. I put it in the drawer with my passport and my avó’s letters and the napkin from Alfama.

I did not know if I wanted children. I had never held a baby. I had never babysat. I had never felt the clock ticking that other women described. My clock had been too busy counting pain.

But now the clock was broken. Or maybe it had never been wound.

I lay on my bed. I stared at the ceiling crack—the river. I followed it with my eyes.

What do you want?

The question echoed in my head. I did not have an answer.

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VI.

That night, I dreamed of the olive grove.

I was eleven. The trees were in bloom. The sun was warm. João was there, holding a basket of figs.

“Race you,” he said.

I ran. The grass was dry. The wind pulled my hair back from my face. I was fast. I was free.

I looked down at my hands. They were clean. No blood. No shame.

I looked up. The olive grove was gone. I was standing in an empty room. White walls. No windows. No doors.

In the center of the room was a crib. Empty.

I walked toward it. The crib was small, wooden, painted white. There was no baby. Just a blanket, folded.

I touched the blanket. It was soft. It smelled like lavender.

Then I heard a voice. Not my own. Not anyone I knew.

“You could have been a mother. But you were too busy surviving.”

I woke up with tears on my face.

The ceiling crack was above me. The river. I followed it until my breathing slowed.

I did not go back to sleep.

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VII.

The next morning, I called Dr. Lúcia’s office.

“I want to schedule the surgery,” I said. “As soon as possible.”

“The doctor has an opening in three weeks.”

“I’ll take it.”

I hung up. I sat at my desk. I took out the black notebook.

I wrote:

I do not know if I want children. But I know I want to stop hurting. I know I want to be free of the pain that has followed me since I was eleven.

The surgery will not fix everything. It may not fix my fertility. It may not fix my trust. It may not fix my fear.

But it is a start.

And a start is more than I had yesterday.

I closed the notebook. I put it on the shelf.

I made coffee. I drank it. The sun rose over Coimbra, pale and gold.

I thought about the question Dr. Lúcia had asked me. Are you prepared for that?

I was not prepared. I was not ready. I did not know what I wanted.

But I was still here. And that was a kind of preparation.

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Dear Diary,

I have twenty years of pain. I have a diagnosis. I have a surgery date.

And I have a question that will not leave me alone.

What do you do when the choice is taken from you—not by the world, but by your own body?

I do not have an answer. Not yet.

But I am going to find one.

— Agnes

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END OF CHAPTER ONE

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Mastery Q

What would you say to the girl you were, if you knew she would never become a mother?