I, Who Was Robbed of My Voice: Surviving the AIDS Drug Scandal

I was silenced.
Threatened that if I spoke up I would lose my future, and if I stayed silent my heart would break.
Whichever I chose, I was destined to be hurt.

I was a child whose blood would not stop.
Even just scraping my knee from a fall, blood would overflow from the depths of my life.
My mother would press gauze to the wound, my father would drive the car in the middle of the night,
and I would fall asleep crying, wishing to be a normal child.

Eventually, a medicine appeared.
When I inserted the needle and let the liquid flow into my body, the bleeding stopped.
"With this, I can live tomorrow, too."
I believed it.
My family believed it, too.
Not one of us ever imagined that the medicine was something that would steal my future.

The day I was told of the infection,
the word "HIV" echoed inside my body like a bomb.
I used the medicine to live.
That medicine invited death.
I wanted to scream.
To say, "This is not my fault."
But the moment I screamed, I would lose friends, be stripped of my job, and have love rejected.
And so, I had no choice but to remain silent.

—Silence.
That was the punishment meted out to me.
I have a voice, yet I cannot speak.
I have a name, yet I cannot identify myself.
Even in court, I was called by a "number."

But I am here.
Even when forced into silence, the trembling did not fade.
The pain that flowed through this body still pulses today.

And so, I write this down.
This is not "someone else's case."
This is the proof that "I" survived,
and the prayer of countless others who were forced into the same silence.

I will not trim, I will not embellish; I will pass it on just as it is.
To leave the trembling that was locked away in silence as a voice for the world.

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─Table of Contents─

Chapter 1: The Child Whose Bleeding Wouldn't Stop
Chapter 2: Believing in the Future with Every Injection
Chapter 3: What Entered My Body Without My Knowledge
Chapter 4: I Can't Say It
Chapter 5: The Eyes of Discrimination
Chapter 6: Meeting Fellow Survivors
Chapter 7: Called by a Number
Chapter 8: The True Identity of the Shadow
Chapter 9: The Day I Heard the Apology
Final Chapter: Living On Regardless
Afterword

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Chapter 1:
The Child Whose Bleeding Would Not Stop

I was never "normal" from the moment I was born.
If I just fell down, the bleeding from my knees would not stop.
If I cut the inside of my mouth, the taste of blood would never go away.
I wanted to play, but if I ran, my joints would swell up and I would be unable to walk.
"Why only me?"—as a young child, I carried that question with no answer.

My mother pressed gauze against me time and again, trying to stop my bleeding.
The cloth would immediately turn bright red, and my mother's hands would tremble.
My father would speed his car to the hospital in the middle of the night.
His back was a mix of impatience and prayer.
As a child, I could only watch in silence the anxiety that appeared on my parents' faces.

Even at school, I had to sit out of physical education because it was "too dangerous."
While watching my friends chase after a ball,
I clenched my fists on the bench.
"I want to be normal."
"I want to run."
"I want to fall down and stand back up with a laugh."
That was my greatest dream as a child.

But the dream was soon shattered.
As the bleeding continued, my bones and joints were steadily destroyed.
On nights when I couldn't sleep from the pain, my mother's tears fell onto my futon.
"What will become of this child?"
My mother whispered that, but I pretended not to hear.
Because if I heard it, I would have to think, "Am I not meant to live?"

There was silence even within our home.
I stopped asking for affection.
Even when the blood wouldn't stop, I tried not to cry.
If I cried, my mother would cry.
If I cried, my father would suffer.
So I silently endured the pain.
What was etched into my child's heart was...
the fear that "raising my voice hurts someone."

As a child who couldn't stop bleeding, I had already learned silence.
I did not yet know then that this silence would lead to an even greater silence later on.

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Chapter 2
Every time I injected the medicine, I believed in the future

I had always longed to be "normal."
Carrying a body that wouldn't stop bleeding, I couldn't play, couldn't run, and dreams and the future felt so far away.
Then, one day, "medicine" came to me.

A transparent liquid.
A cold needle.
The liquid flowing slowly from the syringe felt like a miracle.
The swelling in my joints went down, and the bleeding that wouldn't stop finally ceased.
"Now I can live."
My mother cried, and my father smiled with relief.
For the first time, I felt the word "future" inside my body.

If I injected the medicine, I could go to school.
Although I still had to sit out during P.E. class most of the time,
I could still sit at a desk and attend lessons.
"You were absent yesterday because of the bleeding, but you're here and doing well today."
I was happy to be told that.
Instead of just envying my friends who could run, I could sometimes run with them.
Even if I fell, I could laugh and say, "I'm okay."
Each of those small steps was the realization of a big dream for me.

That is why I trusted the medicine.
I trusted the injections my mother offered me.
I trusted the words of the doctor when he said, "It will be okay."
Every time it entered my veins, I embraced the feeling of "living."
It felt as if the future was gradually drawing closer.

However, that feeling of trust gradually turned into "dependence."
Without medicine, I could not walk.
Without medicine, I could not go to school.
Without medicine, there was no future.
"Medicine equals living" became my reality.
I could not escape from that equation.

What if the medicine ran out?
What if I could no longer obtain the medicine?
That fear was always clinging to my back.
That is why I never doubted the doctor's words.
"This is a new medicine," "This will work."
Whenever I was told that, I would offer my arm without hesitation.
Because the fear of not being able to take the medicine was far greater than the pain of the needle.

Every time I took the medicine, I believed in the future.
"With this, I can become an adult."
"With this, I can get married."
"With this, I can lead a normal life."
That is what I thought. That is what I tried to force myself to believe.

But no one told me that death was mixed into that medicine.
It wasn't just hope that entered my body.
An invisible, tiny virus was carrying the seeds that would destroy my future.
Even so, I could not live without taking the medicine.

Injecting hope and death at the same time.
Without knowing that cruel truth, I laughed, ran, and kept believing in my dreams.

The very act of believing in the future was also the act of having it stolen away.
That was what it meant to "take the medicine."

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Chapter 3:
Things that entered my body without me knowing

Every time the needle pierced my skin, I believed I would live.
I never imagined that death was lurking within that act of belief.

The clear liquid was neither cold nor painful.
But there was something invisible inside it.
HIV.
Something small, too small for anyone to see.
It slipped deep into my body.

The lethargy persisted.
The fever would not break.
My lymph nodes were swollen.
"It's probably a cold," "It's probably just fatigue."
That's what I was told, and I tried to convince myself of the same.
But my body knew.
It knew that something was inside.

The doctor told me.
"You are infected with HIV."
The words were quiet.
Yet, that one sentence caused my world to collapse.
My future was shattered into pieces.

"Why? How could this happen?"
The questions overflowed from my throat, but no answer came back.
The doctor simply averted his gaze and closed my medical chart.
The government remained silent.
The company remained silent.
No one said, "It was because of the medicine."

I carried death within my body.
The medicine I trusted to keep me alive had become a poison that destroyed my future.
"It's not my fault."
I screamed it in my heart over and over.
But if I screamed it aloud, discrimination would rain down on me.
I would lose my family, my friends, and my job—everything.
And so, I fell silent once again.

Things that entered my body without me knowing.
It wasn't just the virus.
"Betrayal," "indifference," and "neglect" also seeped into my body.
They flowed through my veins and tightened coldly around my heart.

At night, I thought about it while in bed.
"Am I going to die?"
"Will there be a tomorrow?"
There were no answers anywhere.
Deep in my chest, a transparent death was simply breathing quietly.

From that day on, I became a being who carried "living" and "bearing death" at the same time.
The medicine I took, believing in a future, was also a blade that stole that future away.

Something that entered my body without me knowing.
It was a silence by the name of a virus.

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Chapter 4
Cannot Speak

From the day I was told I was infected, I closed my mouth.
I knew that if I spoke, I would lose everything.

I couldn't even tell my mother.
When she peered at me with concern, asking, "What's wrong? You look pale,"
I only answered, "I'm fine."
In truth, I wanted to cling to her and cry.
I wanted to scream, "I only trusted the medicine, so why did this happen?"
But I thought that in that moment, I would destroy my mother's life as well.
That is why I could not say it.

I couldn't tell my friends, nor my lover.
The moment the word "AIDS" came up, smiles would cloud over, and distance would grow.
On the television news, stories were broadcast about the homes of infected people being burned down,
and about people being driven from their workplaces.
The moment I thought, "That will be me," my mouth was tightly sealed.

The silence weighed down on me like a command.
At the hospital, the doctor whispered to me.
"Don't tell anyone."
There was a red mark on my medical chart.
The nurse touched me while wearing double gloves.
Her eyes said, "You are dangerous."
It wasn't just my own life I had to protect.
"Not letting anyone around me find out" was also made into a duty I had to uphold.

But that silence killed me.
I couldn't talk to anyone.
No one understood.
At night, I could only tremble under my covers.
I wanted to say, "I don't want to die," but I couldn't.
I wanted to scream, "Help me," but I couldn't scream.
The silence devoured my heart.

Before long, a shadow fell even over my family.
When my mother tried to separate my dishes,
and when my father muttered, "Isn't it dangerous to use the same bath?"
my heart was crushed.
"Even the people who should believe in me cannot fully believe."
That reality robbed me of even more words.

I felt as if I were disappearing while still alive.
My existence was here, but I couldn't raise my voice.
I had a name, but it was never called.
Even though I was screaming, "I am here," from the depths of my throat,
a wall of silence covered me thickly.

—Things I could not say.
That was the greatest suffering imposed upon me.
More than the illness itself, the silence ate away at me.

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Chapter 5
The Eyes of Discrimination

Even when I remained silent, the eyes of discrimination pierced me.
Even though I said nothing, it was as if they could see right through me.
Just because I had hemophilia, people whispered, "Is he not an AIDS patient?"

In the classroom, desks were gradually moved away from mine.
"If you eat school lunch with him, you'll get infected."
Such baseless rumors spread, and my chopsticks became lonely.
Just by watching gym class,
I was laughed at, told, "He can't run because he's tainted."
Amidst the laughter, I felt like my heart was being crushed.

It was the same at work.
Perhaps they had seen the results of my health checkup, as my boss whispered to me.
"Is there something wrong with you?"
The gazes of my colleagues turned cold all at once.
When I reached out to take some copy paper, the other person deliberately avoided my fingertips.
That gesture spoke volumes: "I don't want to touch you."

When I thought about marriage, the eyes of discrimination became even sharper.
The person I loved accepted me.
However, their family became a wall.
"It will spread to the children."
"It will tarnish the family name."
A wall that love could not break separated me from my future.
The tears of the person who cried, saying "I want to be with you," only tore my heart apart even more.

Even the hospital was not a safe place.
They put a red mark on my bed sheets, and the nurses wore double gloves when they touched me.
Amidst the smell of disinfectant, I was treated not as a human being, but as a "pathogen."
The place that was supposed to save lives had become a place that branded me as "dangerous."

The eyes of discrimination were not just from strangers.
They even crept into my own family.
My mother separated my dishes, and my father muttered, "Is it really okay to use the same bath?"
Every time those words spilled from the mouths of the people I loved,
I heard the sound of my own existence crumbling away.

—The eyes of discrimination were a wall.
Though invisible, they were everywhere.
At school, at work, at the hospital, at home.
And that wall pierced my heart time and time again.

Even if I stayed silent, those eyes would follow me.
Even if I said nothing, those gazes would seal my lips.
To be constantly watched by the eyes of discrimination was the same as dying in silence.

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Chapter 6
Meeting My Peers

Locked in a cage of silence, I thought for a long time that I was "alone."
I couldn't tell anyone, no one understood, and if I spoke up, I would be discriminated against.
That is why I had no choice but to remain silent.
In that silence, my heart felt like it would break time and time again.

However, one day, a scrap of paper arrived.
"I am also infected. I cannot tell anyone. But I want to live."
The moment I read those words, something that had been frozen deep in my chest trembled.
"I wasn't the only one."
That single sentence written on the paper melted my loneliness just a little.

There was a small gathering.
A community center with the curtains drawn tight.
We didn't call each other by name, just sat with our faces cast downward.
At first, there was only silence.
But then, one person said in a trembling voice,
"I trusted the medicine, yet I was infected."
In that instant, as if a dam had broken, voices overlapped one after another.
"I can't tell my children."
"I was driven out of my workplace."
"No one will hold me."
Tears and voices mingled, and the room was filled with quiet sobbing.

For the first time in that place, I learned that I was "not alone."
I was not the only one who had been forced into silence.
There were companions who had been robbed of their voices just like me, and who had been trembling just like me.

Anonymous letters, secret gatherings, trembling testimonies.
These gradually connected, becoming the seeds of a movement.
Some people even sent letters to newspaper companies.
"This is not an accident. The government and the companies must take responsibility."
The small article was only a few centimeters of space, but it stirred our hearts.

Meeting fellow victims was also a source of fear.
"What if my name gets leaked?"
"If it's known that I'm here, I'll be discriminated against again."
While carrying such anxieties,
the fact that we were "together" became an even greater support.

—In the silence, a voice was truly beginning to sprout.
It was still small and trembling, but the sprout was definitely there.
"I want to live," "I want to reclaim my voice."
That wish made me stand up once again.

On that day I met my companions, for the first time, I thought from the bottom of my heart,
"I am not alone."

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Chapter 7
Called by a Number

The courthouse hallway was quiet.
However, that silence was not dead air, but rather a stillness taut with fear and determination.

I stood in line there.
With my hat pulled low, my face hidden by a mask, and my gaze cast downward.
The person next to me was hiding their face in the same way.
No one called each other by name.
Because the moment you revealed your name, you would lose everything.

"Plaintiff Number One," "Plaintiff Number Two."
The voices calling out echoed through the hallway.
There were no "names" there.
I was made to stand as a "number."
Not a human being, but merely a part of a case.
Even so, that number spoke for my life.

When I entered the courtroom, cold gazes pierced through me.
Judges, lawyers, reporters.
To them, I was "data" and a "case study."
"Causality has not been proven."
"It was unavoidable at the time."
Listening to those voices, I stood at the witness stand.

"I only believed in the medicine."
"I only took it to live."
My voice was trembling.
My throat felt like it was closing up.
Still, I forced the words out.
Because if I didn't scream, the meaning of my being here would vanish.

When I returned to the hallway, my companions were waiting.
No one exchanged words.
But I saw traces of tears on their downcast faces.
Those tears supported me.
"I am not alone" — that conviction kept my feet moving.

However, when I stepped outside, cameras were waiting.
Flashes burned my face, and the words "AIDS plaintiff" flew about.
I covered my face and simply walked.
I was allowed nothing but silence.
Yet, that silent walk was, in itself, an appeal to society.

I, who was called by a number.
I, who was robbed of my name.
But behind that number, there was, without a doubt, an existence called "me."
And to ensure that existence would not be erased, I kept walking down the hallway.

—That day, I was a number.
But even when forced into silence, my trembling could not be contained within that number.
The trembling became a voice, filling the hallway.

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Chapter 8:
The True Identity of the Shadow

In the courtroom, my voice was too small.
Even when I screamed, even when I trembled,
the people sitting across the desk refused to listen.
All that came out of their mouths were cold words.

"Causality has not been scientifically proven."
"We did our best at the time."
"It was difficult to switch immediately."

My life was crushed by a single line of those words.
The days I spent bleeding, having my future stolen, and being exposed to discrimination,
were dismissed with the phrase, "It couldn't be helped."
In that moment, I was no longer a human being; I was reduced to a mere number.

Government bureaucrats had documents spread out on their desks.
Among them, there must have been materials marked "dangerous."
Heat-treated products were already being used around the world.
Yet, in Japan, shipments were not stopped.
Why?
— Because there was still inventory left.
Boxes stacked in a warehouse were prioritized over human lives.

Pharmaceutical companies protected their profits.
"It can still be sold," "It can still be used."
Saying this, they continued to ship non-heat-treated products.
In the meantime, the virus entered my body,
and destroyed my future, one piece at a time.

Some doctors were also within this shadow.
"Isn't dying from blood loss scarier?"
"So, you must continue the medication."
When told that, I had no choice but to obey.
Because if I stopped the medication, I might die right there on the spot.
I had no choice but to believe the doctor's words.
But that act of believing is what eroded me.

— The true nature of the shadow was not negligence.
A silence that persisted even while knowing the truth.
That was the true nature of the shadow.

The government knew.
The companies knew, too.
Some doctors knew as well.
"There is a risk," "The rest of the world has already switched."
Yet, no one spoke up.
"I can't say anything now," "I can't act now."
Each one of those silences chipped away at my life.

It was not only social discrimination that forced me into silence.
It was because those in power used silence as a weapon.
They crushed us with paperwork, fenced us in with technical jargon, and hid the truth under mountains of documents.

--The true nature of the shadow.
It was the silence of those who knew the weight of my life, yet looked away.
That shadow was cold and long, and it kept stealing my future from behind me.

But the darker the shadow grew, the stronger the voice inside me became.
"I will not be silenced."
That tremor was becoming a blade to tear through the silence.

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Chapter 9
The Day I Heard the Apology

March 29, 1996.
I still remember that day deep within my body.
The air in the courtroom was heavy, a settlement reached at last after a long battle.
My hands, as I sat in the gallery, were damp with sweat.
The friend next to me was also trembling slightly, head bowed.

Standing on the podium was the Minister of Health and Welfare, Naoto Kan.
Television cameras were pointed his way, and reporters' pens were racing.
In that moment, he bowed his head deeply.
"I am sorry."
Those words shook the entire room.

A warmth spread through my chest.
I thought, "It has finally reached them."
A voice that had been silenced for over ten years
felt as though it had been truly heard for the first time.
Tears spilled over on their own.

But at the same time, my heart was torn.
"What good is this now?"
"The friends who died won't come back."
"How will you atone for ten years of silence?"
The apology certainly resonated.
But it lacked the necessary weight.
What was taken from us was simply too great.

In my mind, I saw the faces of friends who could never show their names or faces.
Those who died without ever being able to speak, referred to only by "numbers."
Those who could never walk the hallways of the courthouse.
Is it right for me to accept this "I'm sorry" on their behalf?
That thought spilled out along with my tears.

And yet, things had changed.
The government apologized.
The words "it was a mistake" came from the mouth of authority.
It was the moment society finally acknowledged,
"We cannot ignore your voices."

As I walked down the hallway with my friends, I whispered.
"It's not the end."
The settlement is not the finish line.
The daily routine of taking medication continues, and the side effects relentlessly erode my body.
Discrimination will not disappear immediately, either.
But it was certain that the words of apology had broken the silence.

The day I heard the apology, I was enveloped in a complex tremor.
An inability to forgive, a sense of being saved, anger, and relief.
Even as contradictory emotions swirled, there was one thing that was certain.

"Our voices did not disappear."

The apology that day was proof of that.

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Final Chapter
Still Living

Even after the settlement ended, my life did not end.
Rather, that was where the real battle began.

Every day, I take my medicine at a set time.
A small white pill.
It is a "proof of life" and also a "proof of illness."
If I forget to take it, the virus will immediately take over my body.
If I keep taking it, the side effects will erode my internal organs.
Headaches, nausea, tremors in my hands and feet.
The medicine that was supposed to connect me to the future was simultaneously destroying my body.

The eyes of society did not disappear either.
"You have AIDS, don't you?"
With those words, the atmosphere changes.
I was avoided at work, lost contact with friends,
and there were times when people I considered marrying turned their backs on me.
Discrimination did not vanish with the settlement.
Like a shadow, it has followed behind me even now.

Even so, I lived.
I confessed to the person I loved.
"I have HIV."
There was someone who accepted those words, spoken while trembling, with tears in their eyes.
There was someone who said, "Let's live together."
In that moment, my silence shattered just a little.

When I held my child, tears overflowed.
"I never thought I would be able to hold you with these hands."
The warmth transcended ten years of silence in an instant.

My companions were also continuing to live.
Taking medicine, enduring side effects, and sometimes breaking down physically,
they lifted their heads and said, "Even so, let's live."
The sound of my companions' footsteps when we raised our voices in court still echoes in my heart.
"We are not numbers."
"We are human beings living here."
That cry is what sustains me now.

--Even so, I live.
That is not an easy phrase.
My body is always tired, and the anxiety about the future never fades.
Discrimination is persistent, and the medicine inflicts side effects without mercy.
But, while carrying all of that, I still wish to "live."

My voice, once forced into silence, can no longer be contained.
As long as this body trembles, this voice will remain for the future.

"I was alive."
"Even when robbed, even when silenced, I survived."

That is my pride.
It is a testament that transcends silence, one that no one can erase.

And this voice will reach someone else.
Someone who is still trembling in silence.
To say, "You are not alone."

--I am alive.
Even so, I am alive.

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Afterword

For a long time, I have lived in silence.
If I speak, I lose everything.
If I remain silent, I fall apart.
I was forced to stand in a place where I could only choose one or the other.

However, what I have written down in this book is not silence.
It is the voice that kept trembling within me.
"I only believed in the medicine."
"I only wanted to live."
"I wanted to be loved and accepted as a human being."
I have finally been able to pass those words on.

I was called by a number.
In a society where revealing my name meant being discriminated against and cast out,
I was robbed of my voice.
But deep within that silence, there was truly an "I."
There was an "I" who survived while trembling.

The day I heard the apology, tears overflowed, but it was not forgiveness.
The lives of my friends will not return.
The daily life that was lost will not come back either.
Even so—it served as proof that "our voices did not disappear."

Even now, the illness has not vanished.
I live by taking medicine, enduring side effects, and facing the gaze of society.
However, I will no longer be silenced.
This voice exists to be left for the future.

I was not alone.
I had companions.
I had companions who were forced into silence just as I was, and who trembled just as I did.
Their existence kept me alive.

Therefore, this record does not belong to 'me' alone.
It is a prayer and a testimony for all those who were left behind in silence.

I hope that you, having read this,
will listen to the voices of others who suffer in the same silence.
I hope that never again will anyone have their voice taken away.

I am here.
Not in silence, but as a voice.
Leaving behind my trembling, as proof that I lived.

—Michiko
With heartfelt gratitude.
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*This work is a record of translating the "trembling words that could not be spoken" of someone.
Sharing this to help others is, of course, perfectly fine. In fact, it is most welcome.
However, please do not misappropriate or alter any part or the structure of this work without permission.
Michiko translates the voices of "others who are not me" as a medium.
I would be happy if you could deliver these voices, in their original form, to those who need them.
If you would like, please share your opinions, thoughts, and comments.