Tag: cancer

Doing Something

For 515 days, my sister and I shared my Facebook profile picture, smiling to the world from a little circle above my name. My cover photo was taken that time we went to Jerusalem and she posed with my children on Yoel Solomon Street.

515 days ago I sat down and looked through all my pictures to find one of her actively living after 22 months of watching her actively dying.

 

Now, I update the images.

Update.

My heart trembling, I write:

Changing my profile and cover picture feels like a betrayal. As if Hudis should be everywhere I am, leading me with every interaction I have online the way she walks ahead of me wherever I go. But it’s also relieving in a way like I’ve let her be my little sister again and no longer hold her above me. She’s plastered on my heart, etched on the inside of my skin…her image, a collage of the face I met when she was born, the face I kissed when she died, and every moment I saw her in between, is bright and beautiful and tucked away in the drawer of my soul where the most precious parts of me go.

My daughter is watching me closely, reading over my shoulder.

“Ima, your words…”

She kisses me gently and wipes the tear that formed when I saw that she gets me.

The night my sister died I couldn’t sleep. Words were marching across the inside of my brain, demanding I let them out. I sat up in bed and wrote my goodbye.

“I figured it out,” you said.

“I know what death is.”

It was last August, at the end of an epic summer, and you were saying goodbye.

It was in the living room – on the couches you hated and in typical fashion, you spoke bluntly and decisively about the topic most people avoided around you.

“It’s just my body.  That’s all it is.  And I am not just my body.  My body is sick…my body will die…but I am so much more than that.  I am everything else that I am, and that will never die.”

Oh, Hudis…

You are right.

You will never die.

Your body is here now – finally pain-free…finally unhooked and untethered from everything that you are…

And Hudis you are everything.

You are the strength of a thousand people…

You are the courage of one lone soldier against a mighty army.

You are the love that binds hearts together….

You are the innocence of a million children

You are the joy and laughter of uninhibited play…

You are the song that rises from the brokenhearted…

You are the notes teased from ivory keys, rising and falling with every breath you no longer need to take as you write the lyrics to the greatest song on earth…

Hudis – we will play that song…

We will add notes and harmonies and a baseline that keeps us moving forward.

We will write the stories of our heavy hearts and weave them through your lines.

We will create a bridge that connects it all and we will sing it…

And we will surely sing it too loud and too intrusively and off-key – the only way you can possibly sing a song that can never die.

Achrona, achrona chaviva Hudis.

Save the best for last.

You’ll always be the best.

It was read to her body before we took her to a hole in the ground and covered her with dirt.

We sat.

We sat in our puddles of grief and people came and tried to comfort us.

But I am not comforted by words spoken at me.

The words that comfort me fly from my fingertips, race across the screen and scream with intensity as my lips close and my heart slows and I can feel my lungs fill with life.

Still, I have to do something.

My father set up a table with a box.

Chai Lifeline.

People dropped their dollars in as they left the weeping house. Death makes you want to do something.

I sat at her computer and wrote again.

A lifeline is a rope…a chain…a ladder
thrown into the depths of hell
pulled back into a safety net
where there is air to breathe.
A lifeline is strong…sturdy…unbreakable.
A lifeline is a last hope…an only chance…a leap of faith.
A lifeline comes at a moment of despair
a moment of panic
a moment of confusion
and slows down time
so the path can be seen.
It is a painful path
a broken path
a path full of pitfalls and craters hidden under beds of green
but all along the way
the lifeline is there
ready to jump in
ready to provide a hand
ready to descend into the pit
and pull.
That is a lifeline.
Then there is Chai Lifeline.
And suddenly
there is a way to be more than
the only possible way.

I sent it to myself and printed it out.

Her name was on the top like she had written it.

from: Hudis Storch
to: Bracha Goldstein

We made copies and put it on the table with the box of money. When we got up and walked around the block we had done something.

We started living again.

But we still wanted to do something.

Hudis was determined to run the Miami Marathon for Chai Lifeline. The day she was supposed to fly out, she woke up with a fever. She took her suitcase with her to the hospital. She never made it to Miami. She made her own finish line in the pediatric oncology ward in Robert Wood Johnson and crossed it with a smile that tricked us all. She looked so alive. We couldn’t have known she only had four months left.

Two of my sisters decided to finish it for her. They started raising money before we even go up off those chairs and they ran and walked and pushed themselves harder than they ever thought they could.

I watched them and felt something stir.

I wanted to do something.

I crossed the ocean when it was a year and kissed the slab my sister lies beneath. I wrote again because I don’t know how to do anything else. This time I read it out loud and my voice shook.

I can’t fly to Miami and run. I can’t keep the picture of my baby sister in front of me always. I can’t get my revenge on cancer. I can’t dig up the dead and force the world to stop and remember my sister and all the people actively dying while we passively live on.

My older sister is running the marathon again.

I can do something.

I can write.

And I can tell you about this life and this world and the bits and pieces of who we are as we pass through. I can string words around so that you get how it feels to want to do something as you watch people who have more courage than you can imagine walk into hospital rooms, look cancer in the eye and ready their weapons to fight, no matter how many battles they may have lost.

Chai Lifeline does something.

You can too.

Support my oldest sister as she runs for my baby sister.

Please. 

Click here and donate.

“Ima, you’re writing again?”

I look up at her, knowing she will read my words one day.

“I’m doing something,” I say.

Source

Paused.

It is ugly, this beauty.

It aches in a way that tastes of bile.

The light reflecting off the wall shines a spotlight on the pain…the empty feeling where feeling should be…her presence missing from the picture.

Dusk.

The in-between.

Where the day is and isn’t.

Starting and beginning…the pause between the two.

I am paused.

She was just here…with me.. this exact spot only yesterday three years ago.

Paused.

She paused.

And all I want is to be able to stop time from taking me away from that moment.

Disappear into the stillness

Find her holding her breath waiting for me to start the clock again.

She is missing in the space between time…missing me…the way I miss her.

Time is ruthless.

Night is falling.

It will not let me wait for her.

How Are You?

How is she? 

They ask, everywhere I go.

Sometimes I answer.

It’s hard.  They’re trying something new.  We still don’t know.

And sometimes I don’t.

Fine, thank god.

They want to know news, they want to know progress…they want to know black and white.

I confide in some.

I deflect others.

Mostly, I seethe.

I know everyone means well.

I mean well sometimes too.

How is she?

But do you really want to know?

How is she?

I don’t know.

So tell me dear, dear sister.

How are you?

I bet it hurts.

I bet it’s really bad.

I bet you don’t even know how to explain it to me.

I bet you don’t even want to try.

I bet you want to close your eyes and wake up when it’s over.

I bet you want to travel back in time.

I bet you want me to stop asking you how the hell you are.

I’m fine.

You say it always.

And I wish I could answer you honestly.

You don’t have to be.

 

 

Father, I Dare For Fear

I am sitting in the white van with the red stripe.  I am apprehensive and a little confused.  I do not know what is going on, only that for weeks there has been a nervousness to my father that came with anxious phone calls and whispered unknowns.

The twenty-minute drive in the gloomy Ohio spring stretches over time and space itself.

Usually, I am secretly excited to see airplanes take off and land.  It means there is to be a goodbye or a hello, but this time I sense that something is not right.

Wheelchairs do not come through the gate until after the other passengers have disembarked.  She always uses that service, I used to think for the fun of it, and I spot her white bob rolling our way soon enough.

We lean in for hugs, trying to avoid the smell of mucus oozing out of her trek.  The little ones are afraid.  We overcompensate for their hesitance and I know that she notices.  My father takes the handles of her chair, gripping the rubber tight, and I am overcome with the thought of her life in his hand.

We wait outside for the van, my fingers enclosed in hers.  I am wondering at the strength in her hands when my father pulls up.  He comes to her, smiling, and offers her his arm.  She rises slowly and the blood drains from my father’s face.

I look at her bloated stomach and I know, something is not right.

At home, we show her to her room.  We have changed things around so that she can sleep downstairs.  This year, my mother has also switched the living room and dining room so that the seder will be held in the front room.  There seems to be so much space now.

It is almost Shabbos.  We need to teach the three-year-old how to turn on the machine to clean the trek.  She is not afraid.  She never knew her any other way.

* * *

We sit over the plastic tablecloth, eating our last bits of bread carefully.  The three-year-old breathlessly arrives at my father’s side to inform him that she’s taking his medicine.  We laugh at how adorable it is.  Medicine is medicine to a three-year-old.  I don’t think it’s so funny.  I don’t think anything is that funny these days, but this strikes me as horribly morbid.  My father wants to ease the child’s anxiety.  He goes into the kitchen to show how there are two people in the house taking a lot of medicine.

I hear his voice change and the panic set in.

She is taking his medicine.  He corrects her.  She apologizes.  She said she got mixed up and laughs.  There is fear in that laugh.

* * *

It is Seder night.  We all know what to expect.  It is the same thing every year.  My father tries to lead and she steals the show.

We get to the part where we must be silent.  My father explains everything that will happen.  We begin going at the Matzah, smiling with every crunch.  On to Marror where silent protests over too much horseradish and not enough lettuce passes the time.  It’s Hillelwich time, and we turn to her in anticipation.  She will open her mouth and speak, as she does every year, to tell the joke about the sandwich.

She does open her mouth, but it is to spill blood over her lips and onto the white, white tablecloth.

My father flies back with her after Pesach.  He has had enough of her denying anything is wrong.  We spend the week waiting.

* * *

I am fourteen and very angry.  I pretend to care about nothing, although I sob into my pillow every night over the injustices of the world.  I am a tortured soul, stuck in the confines of teenage misery.

There is a sleepover party planned.  I want to go.  I demand to go.  I scream to go.  I am not allowed to go.  I reach into the ugliest place I find within me and let loose an anger so vast, deep and frightening.  My father returns home just as I have gone beyond my senses.

He looks at me with disgust, and I can feel his disappointment from across the room.

“YOU are going crazy over a SLEEPOVER while my MOTHER has unstoppable CANCER running through her body?  How DARE you!”

I run upstairs and cry and cry and cry.  I am crying over the sleepover.  I will always cry over the sleepover.  It is easier to cry for something I want than for something I don’t.

But…how dare I…how dare I.