I Didn’t Die From My Disease, I Died From Neglect

The doctors said I wouldn't live to see fifteen.

Von Willebrand disease—the name was too long for me to remember fully. I only held onto what it meant: my blood had forgotten how to clot, and any tiny cut could kill me.

The day I was diagnosed at ten, I could hear Mom sobbing through the clinic door.

After that, I became the "fragile girl." My world shrank to clotting factor injections, medical bills, and the exhaustion that settled deeper in my parents' eyes each day.

But here I am, almost eighteen—just three days until Lina and I turn eighteen.

We're twins, though in the mirror she stands half a head taller, her cheeks flushed with color, her eyes bright like mine used to be before the diagnosis.

"Ella, you're really not coming?" Lina stood in my doorway wearing her graduation gown.

Today was her high school graduation ceremony. She was the valedictorian, scheduled to give a speech.

And me? I hadn't set foot in a classroom since my diagnosis. I used to be an honor student too, used to dream about standing on stages and making a difference. Now I just watched from bed as she lived the life I should have had.

"My knee's killing me." I pressed my right knee. "I can't stand for long."

Mom rushed in, car keys clutched in her fist. "Lina, we're going to be late!"

She saw my hand on my knee and her voice caught. "It's acting up again? Today of all days?"

"Mom, I don't think I can make it..."

"Eight years." She cut me off, her voice shaking. "Every single important day for Lina, you get sick. Every single one."

"I'm really hurting..."

"Really?" Mom suddenly grabbed the medication box from the coffee table—next week's clotting factor, three thousand dollars a box. "For this, I quit my job to take care of you full-time! For this, we sold everything we could!"

The box trembled in her hands.

"Just today," she stared at me, "let Lina have her graduation. Let your mother catch her breath. Please?"

I opened my mouth but no words came out.

The box slipped from her grasp.

The glass vial shattered with a crisp sound. Fragments scattered everywhere, and one shard grazed my ankle—barely a scratch that wouldn't need a Band-Aid for anyone else.

But my blood doesn't clot.

Droplets welled up. One, two, then a thin line.

The air went still.

"I'll get gauze!" Lina spun toward the bathroom.

"Stop!" Mom's voice was ice cold. "Let her handle it herself."

She grabbed her keys and Lina's wrist. "We're leaving."

"But Ella..."

"Now!"

The door slammed shut.

I stood alone, watching blood trail down to my foot and drip onto the light wood floor—the same floor Mom mopped every day.

I crouched down, trying to wipe it with my sleeve. The blood just smeared, spreading into a larger stain.

Cold crept through my body, starting from my toes. I knew this feeling too well.

I stumbled toward the bathroom—my sanctuary, where I soaked in warm baths during every bleeding episode.

Sinking into the bathtub, the warm water temporarily chased away the chill.

I reached for my phone and tried Dad first. He'd taken the whole day off for the graduation.

The phone rang and rang. No answer.

I called Mom. When she picked up, I heard a marching band and cheering crowds in the background.

"Now please welcome our valedictorian, Lina Carter!" Thunderous applause.

"Ella?" Mom's voice was hushed. "What is it?"

"Mom, I'm bleeding..."

Two seconds of silence.

"What are you trying to pull now?" Her voice turned hard. "Lina's about to give her speech! Are you doing this on purpose?"

"I'm not making this up, it's real..."

"Enough! Handle it yourself like always—get gauze and deal with it. You'll be fine!"

The line went dead.

I held the phone, listening to the bathroom's echo. The bathwater grew redder, my body colder.

Mom's knitted cardigan hung on the tub's edge. I pulled it over my face, breathing in the lavender scent.

When I was twelve and hospitalized after breaking my arm, she wore this same cardigan while holding my hand through the night.

The water gradually cooled.

The bleeding slowed—not because the wound was healing, but because I was running out of blood.

Consciousness started slipping away. I thought: Maybe this is better.

Dad and Mom wouldn't fight about medical bills until dawn anymore.

Lina wouldn't have to write "My sister is seriously ill, so I'm choosing an in-state school" on every college application.

And I wouldn't have to fake optimism anymore, wouldn't have to bite my pillow through midnight pain attacks, staying silent.

With my last bit of strength, I pulled the shower curtain across—the waterproof one with sunflowers that Mom had chosen because she said sunflowers represented vitality.

I left a small gap in the curtain.

If they came looking for me, maybe they'd see me.

If...

The water turned completely cold. I was so cold.