i can’t make myself get out of bed / underneath a blanket i’ve has for ages / wearing his t-shirt but nothing else / trying to make myself do something / anything / but anxiety is such a paralyzing monster

Wheelchair

I once saw a girl in a pink wheelchair,

But I don’t think anyone else did,

Always looking away as if was a contagious impair.

 

She was trying to act normal,

And keeping really still,

Trying to control her arms and legs,

That always moved against her will.

 

And I wish I had enough courage,

To walk up to her and say,

“Don’t try to normal,

Just because you feel like running away.”

 

I’m sorry your legs don’t work like mine,

And I never appreciated it before,

But thanks to you,

I’ll never over look it anymore.

 

I’m sorry people see your condition,

Which is not at all of you,

But people never see that,

Because their point of view.

 

You can never run away and hide,

Like I can always do,

And when there are games to be played,

I wonder if anyone invites you.

 

It must be hard watching from the sidelines,

And watching actions seem so effortless,

And I don’t think people even realize,

The extend of their unkindness.

 

But as for me I now know,

I’ll never look at you differently,

Because I now understand,

How hard it must be.

 

 

 

 

 

 

Imperfect Lungs

I saw her friends gathering homework,

From all the classes that she missed,

Saying softly when asked about her imperfect lungs,

“She’s on the transfer waiting list.”

 

But every knows how long it takes,

To get a perfect set of lungs before it’s too late,

And soon enough you start to despise the words,

“Just wait.”

 

So all she does is try to inhale oxygen,

That no one else seems to struggle to do,

As every day she wakes up and hooks to a tank,

To start Chemo anew.

 

Her friends stop by every day,

Wondering if one will be her last,

And if all the times they talk about her,

Will be forever be spoken in the past.

 

The school sends hearts and cards,

And her best friend brought balloons and teddy bear,

Everyone trying to show her,

How much she makes them care.

 

But as she grows pale and thin,

Waiting, Waiting, Waiting,

For a set of perfect lungs,

To be hers again.

 

You just wish that bile didn’t come up,

Instead of food,

And that she can somehow can gain weight,

And do anything but sit and brood.

 

She’s stuck in a bitter cycle,

Just like she’s stuck with imperfect lungs in her chest,

As every day she is prodded with needles,

And takes another new test.

 

The teddy bear she named “Hazel Grace,”

Hoping that somehow it will bring her good luck,

And not have doctors say bad news to her face.

 

But there’s always more waiting,

And people only see her condition,

Waiting to throw a celebration party,

When she goes into remission.

 

But it never happens,

And the teddy bear doesn’t bring good luck,

As the tears and screams as the news comes,

Get unstuck.

 

She never wanted to be,

Just a girl with cancer,

Waiting for a set perfect lungs,

To take the imperfect ones away from her.

 

But someone in the end,

That is how she ended up,

A girl who tried her best,

To fight the lack of oxygen in her chest.

 

There are tons more like her,

With a similar story,

Trying to fight the horrible monster,

Stuck in the “cancer” category.

You told me to turn away,

But I didn’t listen then,

And now I watch you fade every day.

 

Pale skin,

Chapped lips,

But still the boy I know within.

 

Clear IV fluid,

White tiles,

More bills and scans,

More medical files.

 

Foam cup,

Waiting for the PET scan,

Wondering if there is hope,

Holding your pale hand.

 

Trying to pretend,

That the thing eating away your bones,

Will not be your end.

 

Green and purple bruises,

Faded smile,

Where is my happy boy?

I haven’t seen him in a while.

 

Visiting hour ticking away,

Please make this not be,

Your last day.

 

 

 

 

 

 

 

 

I see you in the stars tonight,

Cocky half grin and all,

But I still ask myself,

Which I would prefer:

Seeing you there every night,

Or having you by my side.

It’s been a long day,

Since I’ve seen you last,

And angel,

I hope you have wings,

To see me,

Even when I can’t,

See you.

She was born,

With birth defect,

In her left leg,

The caused the veins to be atrophied,

So not enough blood,

Flowed to it.

 

It made her leg shorter,

Then the one,

And skinnier.

 

She always felt self-conscious

About wearing jeans,

And she had to have them,

Specially made.

 

Oh but my darling,

Don’t you see,

How wonderful that makes you?

 

You can wear special shoes,

With a heel on your left one,

And rock styles,

No one else can!

 

You are exquisitely unique,

In a way,

That no else can imagine.

 

So darling,

Please understand,

That no one sees’s you as horribly imperfect,

Or badly flawed physically.

 

They see a strong girl,

Who was given something special,

Which made everything normal,

A little bit harder.

 

And darling,

The strongest people,

Are my favorite.

 

A Girl Who Waits

For the hopeful

 

My darling,

You are a girl,

Who waits,

For something wonderful.

 

You wait for sweetheart,

Something the world,

May never give:

A cure.

 

I wish I could make one,

Of love alone,

Because you would be healed,

In no time.

 

But dearest,

Who am I to say,

What time you have?

Who am I to guess,

When your lungs give out?

 

Because angel,

I don’t want to imagine,

A world without you.

 

So if you become,

A girl who waits honey,

That is fine with me,

As long as I can keep you,

Here a little longer,

Living on nothing,

But hope.

 

 

Crash

Dear Elliot,

This is for you.

This is not for the boys,

Who laughed at your name,

And didn’t want to date a girl,

Who could beat them in any sport.

 

Dear Elliot,

I wish you had noticed sooner,

How beautiful your freckles are,

Because even though only a few,

Ever called them anything but,

You seemed never to think,

That they could be beautiful.

They were, E.

They were.

 

Dear Elliot,

I remember

  how much,

You always loved black,

But I don’t think,

You would like,

Your funeral,

Because everything was red,

Or white,

Or grey,

And only a few people,

Wore black.

 

Dear Elliot,

Phobia is stuck a strong word,

But I fear it makes me weak,

Because I won’t get into a car,

Because I know,

That is what killed you.

 

Dear Elliot,

Your name is stitched,

Onto the back,

Of every soccer jersey,

In white,

And you would be proud,

To know,

Your soccer cleats,

Sit in the trophy case.

Our school team,

Is now named,

Elliot’s Angels,

But I think,

The better name is,

Elliot’s Warriors,

Because you were never,

The soft kind of the girl,

So that is why,

It took something made out of steel,

To take down,

The iron girl.

 

Dear Elliot,

Your rose gold ring,

Was smashed on impact,

But your mom,

Now wears it,

Around her neck,

As a charm.

 

Dear Elliot,

Come back.

 

Dear Elliot,

The boys lacross team,

Out of respect for you,

Paint an “E” on their cheeks,

In black paint,

Whenever they go on the field,

Because you earned that.

 

Dear Elliot,

The entire school is changed,

You made an impact.

I only wish you could be here to see it.

 

 

 

 

Ependymoma

You left before,

You even had a chance at life.

The only scar you had,

Was above your left eyebrow,

And the only love,

You had ever known,

Was family love.

You had never ridden,

On a roller coaster,

Eaten a mango,

Or figured out to color,

Inside the lines.

Six,

Is such a horrible age,

To leave the world,

Because you almost had chance,

To do it all.

After the first,

Doctor’s appointment,

You only smiled,

And said,

“It’s okay Izzy, I’ll get better.”

You didn’t though,

And the name of your cancer,

Seemed to worm its way,

Through the house,

And into every adult’s mouth.

I remember the bright smile,

You gave me,

When your speech was slurring,

As you said,

As clearly as you could,

“It’s okay, Izzy can talk for me.”

You laid in bed,

After you started,

Having difficulty walking,

And you always mumbled,

When you seemed too weak to talk,

“Izzy. Uno?”

Angel,

You left the world at six,

And if you had been able to stay,

It would have been,

A better place.

Non-Hodgkin Lymphoma

Chemo:

They hooked you to,

An IV,

Which let the clear fluid,

Go right into you,

And darling,

Have you ever noticed,

Your tears were the same color?

 

Hair loss:

You always wore,

A white beanie,

To cover the fact,

You had no hair.

But darling,

Why be ashamed,

Of a mark,

Of a survivor?

 

Fever:

Why do you always,

Have to scare us,

So much,

Darling?

 

Weight Loss:

You never liked your body,

But sweetheart,

Have you noticed,

You like it no more,

With all the weight,

You loose,

Because of cancer?

Cough or shortness of breath:

You always panicked,

And looked so scared,

As every little act,

Made you gasp for breath,

Or bend over in coughing.

But angel,

Don’t you know,

That we all feel breathless,

Around you,

As if one little puff of air,

Could blow you away?

 

Headache’s:

Your head always hurt,

And the scariest part was,

You never knew if it was cancer,

Or just stress.

But darling,

Don’t worry,

Because I will stand by you,

In both.

 

 

You survived angel, but many of your hospital friends did not.

 

 

 

 

 

 

I like to cry,

At how uninformed I was,

Because to me,

Cancer was cancer,

And there was only one kind.

But that was before,

You had a PET scan,

And you were listed,

For three different kinds.

It was then I realized,

That there are so many different kinds,

That anyone can have,

And even the most normal people,

Walking in the streets,

Can have cancer,

And may not even know it.

 

Ewing Tumor

All the nurses asked me,

While running through the halls,

Pushing me in a metal bed,

While I withered senselessly,

“On a scale of one to ten,

How bad is your pain?”

What pain?

The one in my heart,

Or head because I know,

I’m not getting better?

Or the one in,

My bones,

Eating me alive?

Backbone

She has iron in her backbone,

Built up from,

The plastic brace she wears.

You can’t judge,

What you can’t see,

She  tells herself,

And besides,

Who would ever,

Want to look closely at me?

Yet there is something,

In her bobbed brown hair,

And in her awkward,

Shy smile,

And in the grace,

She carries herself with,

That makes you want to,

Know her.

She has a fragile toughness,

Like there is steel,

Hidden in her bones,

And though her back,

May be crooked,

And have a few bumps,

You can’t take your backbone,

And try to mimic hers,

Because hers has metal,

Does yours?

 

“We lost an angel yesterday,”

Was how they annouced it,

At school.

No,

We didn’t.

We lost a warrior.

We lost a hopeful girl,

A sweet smile,

And sassy retort,

And more importantly:

We lost you.

And no words,

Can describe that.

 

 

 

 

 

 

 

 

 

My cleats always sounded,

Loud,

On the way to her room,

Like I was an imposter,

With my healthy body,

And wearing a sweat-stained,

Soccer jersey,

To the room,

Which held,

The best soccer player,

Who would never be able,

To play again.

I would open the door softly,

And she would say,

“Did you dominate?”

And I would smile,

And say,

“For you.”

Because our soccer team,

May have lost it’s captain,

And best player,

But it would never lose,

Her faith,

Her confidence,

And the love of the sport,

She had passed on to us,

Before cancer claimed her.

Music

Hospital beds,

Are not a good place,

For anything but,

Music.

Because while I saw you,

Dream of getting better,

I also saw you,

Write songs,

On the ceiling with your eyes,

And hum a tune underneath your breath.

So when your birthday,

Rolled around,

I got you,

A small ukelele,

And you sang softly every day,

The same song.

“You crawled into my lung,

And built palaces out of bacteria.

 

You made a dark army,

That matched inside my head,

And twisted everything I had.

 

You crawled into my lung,

And decided you should stay,

Because I had a fine pair of lungs,

A perfect home for you.

 

You emptied hospital beds,

And are the reason,

Behind carved gravestones.

 

You crawled into my lung,

And twisted your way into my head,

And now all you want,

Is to empty,

My hospital bed.”

 

It never emptied,

Your hospital bed,

But it did take,

Something else,

That you cried for,

Every day:

Your voice.

You took my voice,

Lung cancer,

But I have feeling,

You won’t think that,

Is enough.

 

You are you

For Josie

 

 

Your heart,

Never worked,

As a heart should have,

And because of that,

You have scars all across your chest,

Twice-a-day-medicine,

And more than once yearly check-ups.

You can’t run too fast,

Or too long,

And the aspirin medicine you take,

Makes you bruise easily.

Remember when,

You were little,

And nightmares of doctors,

And needles,

Still haunted you?

And I said,

“Never forget,

That those are the things,

That makes you,

The bravest person,

I have ever known.”

And I mean it,

To this day,

Because those nightmares,

Only help me see,

What a brave person you are.

Yet,

Your heart condition,

Is not,

And never will be,

All there is to you.

You are your red face,

And breathless laughter,

From daily tickle fights.

You are your love of animals,

And you pet fish,

Named Snow.

You are the shiny gems and rocks,

That you have carefully collected,

And the sweet notes,

You always leave everyone.

You are your thoughtful gifts,

And wide smile,

Your favorite black shirt,

And soccer charm necklace.

Because little sis,

 You are you.

You are not just a heart condition,

Or another medicine dose.

You are not those things,

To our crazy family,

Your busy doctors,

Your endless friends,

And anyone who meets you.

No,

You are you.

 

 

Extradinary

She had leukemia.

An uncurable disease.

They said,

“She fought well.”

And,

“She will always be an inspiration to us.”

Yes,

She will be.

At least,

The smiling girl she use to be,

Will be.

But those pictures,

Will never show,

The raw beauty,

Of an endless struggle,

And a bottomless heart.

They might show,

A picture of her,

When she was two months into Chemo,

And still had the hope,

That she could get better.

Well,

She didn’t.

People still say,

To me in the hall,

“I’m so sorry. She was wonderful.”

No,

She wasn’t.

She wasn’t brave,

Or wonderful,

She was extraordinary.

And the most extraordinary people,

Are the ones,

Who always seem to,

Leave us.

And I almost,

Shouted in the hall,

“She was so much more than that.”

And she was.

She was the tears,

She cried when she had to,

Shave her head,

And the broken compact,

She threw across the room.

She was the positive smile,

She would always wear,

Wheeling her wheel chair,

Into the children’s section,

As she read story books,

To the girl whose heart,

Was not working,

Like a heart,

And the the little boy,

Who had a tumor growing,

Inside his head.

She sang with the girl,

Who had lost her voice,

Because of cancer,

And now,

It was back wanting,

The rest of her.

She played chess with,

The boy who knew,

The name of his cancer,

Before he ever had it.

(Hepatocellular Carcinoma)

She was her soft “Thank you’s,”

To every nurse and doctor,

And the distant small smile she wore,

Whenever she felt cancer,

Rise it’s ugly head inside her.

She was the wirthering mass,

She would become,

When that head struck,

And the sad pale girl,

Who croaked out every morning,

“The sunrise is so beautiful.”

Even when,

Her thick,

Heavy curtains were drawn.

She was the carefully scribbled,

Pictures from her friends,

In the children’s ward,

Taped to the wall,

And the long detailed letters,

From the older patients.

She kept those,

Not the pink paper hearts,

That every girl in school sent her,

Or the thick papered letters,

That all her teacher’s sent,

Or the get-well cards,

From everyone she had ever met.

Because she had that effect on people:

One smile,

And you knew,

She was special.

But cancer,

Seemed to know that too,

Because it took her.

The last time I ever saw her,

Was when she was all but a pale shadow,

Purple viens colouring her skin,

And warm eyes,

The color of honey.

It was then she told me,

With a slack smile,

“I never chose to get cancer,

Or to know the truth,

That was going to die,

But I did choose,

What I was going to do with,

That news.

I chose to,

To lift others up,

While it was dragging me down,

And gives others hope,

When I felt hopeless. I chose to believe,

When all belief was gone,

And I chose to live,

Instead of laying in a plastic hospital bed,

And staring a white ceiling.

Just thinking scary thoughts,

And letting dark fears,

Overwhelm me.”

I made her promise,

An hour before,

She drew her last breath.

I promised her,

That I would visit all,

Her friends in the children’s ward,

And in other places.

And I did,

And I watched as,

Beds emptied,

As kids died,

So cancer could live.

Soon her friends,

Were all but gone,

Except for,

A lucky few.

But I never forgot,

What she had told me,

Or the faces,

Of all the kids,

When they heard,

And there would be no cheery sticky notes,

From room 204 anymore,

Delivered by,

A smiling nurse.

There would be,

No more wheel chair sounds,

As she wheeled herself through the halls.

Because she was gone.

Those kids knew,

More sadness and struggle,

Then I ever could.

The girl without a voice,

Opened her mouth in a silent scream,

And the boy chucked his chess set across the room.

The girl whose heart,

Was not working like a heart,

Sat there,

A few silent warrior tears,

Sliding down her face.

The little boy,

Who had a tumor,

Growing inside his head,

Mumbled as clearly as he could,

As his mother sobbed,

At his bedside,

Because this was the first sentence,

He had spoken all week,

“No. She can’t go bye-bye!”

The little children,

Who she read to,

Sobbed quietly,

As some of them whispered,

No.”

“But we loved her!”

“She said she come back!”

She was extraordinary,

And I am sorry,

You never saw that,

While you were,

Too focused on her disease,

And not the person.

 

 

 

 

 

Don’t leave me

You promised,

When we were just little kids,

On the first day of,

Kindergarten,

That you would never,

Leave me,

And never come back.

And every day of school,

I waited for you,

By the front door,

With a snack,

And a note,

I proudly wrote myself.

When I was old enough,

To go to school,

You promised that,

You wouldn’t let anyone,

Hurt me,

And no one did.

Every bully was too afraid,

Of  you,

To dare lay a finger on me.

And when I went into middle school,

You told me,

Not to worry,

That no boy,

Every looked twice at me,

Because you promised,

Everyone would be jealous,

When I went to prom,

With a junior.

Freshmen year you promised,

That what the girls said,

In the bathroom,

And the halls,

Wasn’t true.

I was beautiful,

And you would never,

Quit reminding me of that.

When I was a sophomore,

And you were a junior,

You broke every single promise,

You ever made to me.

Because brother,

You left me,

You hurt me,

You never took me to prom,

And you haven’t told me,

That I am beautiful,

For four months.

Because brother,

You didn’t have a choice,

Because you fought,

As only you could,

And you lived,

As only you could:

Wonderfully.

The day you took,

Your last breath,

And the entire ICU,

Was full of pain racked sobs,

You whispered to me,

Quietly,

“Promises don’t have an end.”

Your friends,

Never left my side,

Never let anyone hurt me,

Brought me prom flowers,

And told me every day,

How beautiful I am.

Darling brother,

I know you gave me,

More than a dozen promises,

But I still miss you.

You made sure I had,

Five brothers to take care of me,

When you were gone,

And for that,

I will always thank you,

But I miss the brother,

Who kissed my forehead,

And whose bed,

Grows dusty.

Make one more promise,

For me:

Promise that,

You will always live,

In the little things,

Because a world,

That is truly without you,

Is not one,

I want live in.

 

 

Brain Tumor

You were always forgotten,

And left behind in fits,

And rages,

That was caused,

By a dying memory.

As it grew inside his brain,

You felt something growing inside of you,

Too.

He was dying,

And dying meant forgetting,

And you never wanted him,

To forget you,

Just as much,

As you would never,

Forget him.

One day you saw,

A girl in English class,

Who had dyed her hair red,

And had a nose ring.

You bet that,

No one ever forgot her.

So you dyed your hair,

A startling teal,

And pierced one side,

Of your nose.

But he still forgot,

Because of the thing,

Growing inside of his head.

When you grasped his hand,

Pale and trembling,

You pleaded,

“Don’t forget me.”

You were selfish to say that,

But you were desperate too,

Because how could he leave you,

All alone?

He smiled,

The goofy smile you had first,

Fell in love with,

And said,

“I won’t.”

You never did forget, did he?

Sister

She always hears the same questions,

And feels the same empty space:

“Why is she still using present tense?”

The doctor says,

She should “get over it soon,”

And “accept the reality.”

But there is no reality,

Without her,

She screams inside.

How can you act like,

She was never here?

I have a sister,

And she might be gone,

But I will always have a sister,

And you can’t take that truth from me,

With all the medications,

And pills sitting on the table,

And all the therpist trips.

So don’t try,

Because you will tear apart,

And dirty all the memories,

We had together,

So don’t kill my sister’s memory,

Even now that she is gone.