Tuesday, August 7, 2012

My Esther Day 2012

Esther Day, August 3rd, is now an official holiday in Nerdfighteria for the celebration of love. It’s named after my 16 year-old daughter, Esther Grace who succumbed to cancer in August of 2010. I cannot improve on what others have said regarding the day’s beginning, definition, purpose or influence (see below for links) but I can say I knew Esther well and she’s all that. She has inspired the writing of two books! Gorgeous art work, superbly written essays, many poems and beautifully crafted songs have been created in her honor. I can even imagine a talented nerdfighter writing a stage play, or musical, based on her fascinating and extraordinary life! Mostly, though, she cared and nobody was beyond hope in her world, in her circle of love that remained open to anyone.

My favorite memory of Esther Day 2012 was when my second daughter, Evangeline, read from John Green’s “Love Letter” to Esther. His words expressed what she felt about her little sister and it was the first time that Evangeline had spoken publically about Esther. There was healing to be had in her tears and in mine. And I read from the beginning pages of Esther’s biography. I had promised her I’d write it, and now it’s nearly complete and will be published soon. Here's an excerpt. Of course, there is much editing to be done before then! But no edits are needed for Esther’s life. It unfolded, and ended, beautifully, though much too soon.

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“August 24, 2010” 

This World is not Conclusion.
A sequel stands beyond—
Invisible, as Music—
But positive, as Sound.

~Emily Dickinson
Poems, Third Series (1896)

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She was lying down on a familiar hospital bed. Her father went to her side.
“Hi daddy, I’m glad you are here.” She said groggily.

“Where else would I want to be? This is the main event. After all, you’re famous in this place!”

She smiled and took his hand, holding it tightly, closely, like a child on her first day of kindergarten who knows she must soon part, and do so bravely, tears in check. Esther had recently turned 16, and she’d always been strong so he expected nothing less than this present show of courage. Looking back on that scene, he realized that she did seem uncharacteristically frightened but, more than that, he remembered that she had remained alert and accepting of all that was happening to her. In fact, it was her remarkable ability to accept the trauma that had become part of her daily routine that had impressed her doctors and nurses. Her parents had learned to shrug, saying dispassionately, “Yeah, that’s Esther” but inside, they never tired of the pride and gratitude they experienced whenever her caregivers spoke about their daughter as they usually did in near, hushed tones. For anyone who met her, holding Esther in high esteem seemed an appropriate response; it was simply the natural result of being around her.

Esther’s mom and dad had long reflected appreciatively about her place as their middle child, a sort of hub-child, a peace maker and joy giver. Her positive, gentle spirit and genuine empathetic personality often set the tone at home and her mom and dad, like everyone else, received much enjoyment in her presence. She had always been physically attractive with a full head of untamed reddish-dirty blonde, near shoulder length hair balanced on a slim and muscular, 5’ 1’ frame. Until now, her deep blue eyes still lit up and danced. Life had been good to Esther Grace.

And then, right in the middle of the Fairy Tale, came the cancer.

Her dad walked alongside the movable bed, still holding his daughter’s hand as they entered the elevator. Her father silently calculated that this was at least the ninth or tenth time that they’d made this trip. The whole family had been through this drill so many times together. The boys were already bored with the routine and started in chattering about what they wanted for lunch from the hospital cafeteria on the first floor. Oldest sister, Abby, who arrived immediately from her apartment in Beverly, was thinking about college homework that needed to be done, imagining she’d return home later in the day once Esther stabilized. Each of them thought of this ascension to the familiar 11th floor of Children’s Hospital in Boston as yet another detour in Esther’s ongoing treatment plan.

The night before had been awful. Esther simply couldn’t catch her breath. For many weeks now, it was usually Esther’s mom, Lori, who would sleep by her side on the pull out couch, which had been set up in the bedroom so that she could be more easily cared for.  Lori had been up most of the night trying to help Esther find relief.  It was clear that this was a significant crisis and the visiting nurse arrived early.  After it was determined that Esther needed more than could be provided at home, the ambulance came for her. Big sister Evangeline (Angie), brothers Graham and Abraham, and her mom and dad watched while the EMT’s carried her out. As they loaded her into the ambulance, Esther smiled bravely, though weakly, through her oxygen mask and then waved goodbye.

As the evening wore on, August 24, 2010 appeared very much like it might turn out to be just the start of yet another long hospital stay. In fact, Esther’s parents sent Abby back home and, one at a time, each left the room to get food. However, Angie never left her side. She and Esther continued to talk together, interrupted only by hospital staff or Angie’s own beautiful voice singing softly, as she patted Esther’s head with a cold cloth.

At one point, her caregivers decided to insert a urinary catheter, a process Esther had endured more than once and something she hated. The nurse explained that it was necessary in case she needed to urinate, to which Esther replied, “Yeah. Good. But what happens if I need to take a crap?”

She continued experiencing great discomfort but the enormous amounts of morphine and other pain meds began to calm the agitation and she also spoke less and less. Many doctors were coming by the ICU and there were comments about how significant the dosage of pain medicine was that she was being given. “The amount she’s taking would kill both you and me, combined” said one physician, much to her father’s surprise. He long understood that he would be no match for the level of pain tolerance that his daughter had come to endure, but “kill me?” he thought. “Why are they saying that?”

By mid day, Esther’s friends online had become aware that she was “back at the hospital.” No one is certain who sent the first message but, before long, the comments, texts and questions on facebook, twitter and Esther’s Caringbridge site mounted concerning her status. One friend, Avonell, texted from California to say she was “taking deep breaths” for her.  Another friend, Blaze, writing from Florida, referred her recipients to Esther’s username, crazycrayon, saying, “I know most of you reading already know, but @crazycrayon is sick and she's all of my thoughts right now.” Dozens of other friends wrote and called but Esther was in too much discomfort to respond.

Mostly, though, it was strangers who sent line after line of encouragement.  Someone going by the name, RebeccaActually, summed up the feeling of many by saying, “You've never met me, but I love you.” Another user, VerveRiot confessed, “I normally don't pray. But tonight I might start to pray for Esther who is in hospital fighting to not die of cancer!” Throughout the day and into the evening, her parents took turns following the outpouring of affection which brought needed comfort to them and to Esther. 

By late afternoon, it seemed to her parents that everyone online was talking about Esther, praying for her and sending the family well wishes. But it shouldn’t have surprised anyone. It was simply the response of Esther’s online family, known as, Nerdfighteria, “a community,” someone said, that has but, “one zip code,” a magical place where “awesome is celebrated and where every member fights to end world suck.” This was the community that Esther had come to know and love and now that one of their own was in trouble, they were standing with her.  Their young Star was struggling, fading…and their prayers, texts, tweets, messagings, chats and phone conversations continued well into the night.

In the early evening, her father set his lap top down and went to Esther’s side. Her eyes were closed and he spoke softly.

“Star… the internet has been on fire all afternoon with people talking about you! These people online are amazing. Everyone is wishing you well.”

She smiled. He had long thought of himself as her interpreter, or messenger, and had even said more than once that he would write her story should this disease take her away.

“Esther,” he leaned in next to her face and whispered, “Do you want me to send a message and tell them how much you love them?” He had expected an immediate and affirmative nod, so was absolutely stunned by her response.

“No.” she said, calmly, resolutely.

A moment later he was sitting, this time emotionally floundering, the question forming on his lips, over and over, “why no message?” As hard as it was, he obeyed her order and didn’t post anything. Soon, he was back beside the bed where he took hold of Esther’s hand and began a long walk into silence.

Nearly two years earlier, then 14 year-old Esther had come precariously close to dying. When that crisis passed, she and her family resolved to live fully with each day that might follow. Afterwards, she reflected on that terrible week in a letter to her parents:

2 months ago, just a week or so away from another radio-iodine dose, I felt a large rumbling in my lower left/middle lung, and figured it was another wheeze. I was on the toilet peeing, so I breathed in and out and it rumbled a lot.  I coughed, expecting mucus, and instead saw blood.

You don’t know what it felt like to look in my tissue and see blood.  My heart thudded so fast, my stomach sunk and I got light-headed.  I yelled for mom, but I was so worried my voice cracked.  She heard and mom and dad came running up.  After coughing some more into a bowl, dad took me to emergency.  By then I was feeling fine, still unnerved, but fine, my oxygen was cranked up from 2 to 4, but I was fine, fine.  I was checked in and they said I bled mainly because being off my thyroxin (in preparation for radio-iodine) my lung tumors had become über active.

A few days later I had my radio-iodine dose.  I was fine for the first day.  Second day I was headachy.  Third day I was on a new air machine, “bi-pap,” and on morphine.  I only remember sleeping, mom came in and woke me and said Abby and Angie were there, so I drowsily hung out for a few minutes with them.  Mom and dad stayed in my room, sometimes switching and going out for a while because of my high radiation levels. 

Apparently everyone highly, highly thought I was going to die.  That’s why, despite such high levels of radiation, mom and dad spent so much time in my room, and Abby and Angie came in to see me.  But I didn’t know I was close to dying, I just figured because this dose of radiation was so much higher I was feeling quite sick.

Fortunately, praise God, I made it through!  It wasn’t until like a week later, in the ICU where I was staying that mom told me about the dying thing.  Hearing that made me think more about dying, death, heaven, hell.  I’d always thought I knew how scary death was.

I thought you died, and then went to where you were supposed to go, but I didn’t think too hard about it.  Now, being at a point in my life where doctors say I’ll live 6 days, or 6 months, or 6 years, or 60 years, they don’t know, I’ve had more time to say, if I died tomorrow, what would happen?

Even having all this time to think, I don’t think my views of death have changed too much.  I guess now I figure you die, and then you have a sense of looking at your body from above, as dad has said when we’ve talked about it.  And then maybe you meet someone who takes you to where you go.  Or maybe you’re already there, I don’t know.  I wonder if anyone on earth’s idea of death is spot-on.

I do think if I die my family will have a hard time… … I guess all I can do is pray God is with us all? 

Yeah.

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John Green’s Letter about Esther:

Andrew Slack sums it up:

Melissa Annelli writes about the Esther Earl Rockin’ Charity Ball:

Esther’s Tumblr created by the amazing, April Demsko:

The Official Esther Day 2012 Video by TJ Mercier:
http://youtu.be/VFX3uu6VyyU

"Love"