“LOVE IS STRONGER THAN DEATH”
by Wayne Earl
“And those who are wise shall shine like the brightness of the sky above; and those who turn many to righteousness, like the stars forever and ever.”
~Daniel 12:3
On August 17, 2010, Esther sat down to complete her 11th VEDA for the month. In what would be her final YouTube post, she showcases the downstairs of her home. Beginning with her trademark cheerfulness, she says playfully, “I know what we can do! Let’s tour my house!” She then takes the viewer on a walk through her bedroom: “ . . . now it’s my bed, and now it’s my lamp, and now it’s my bookshelf, and now it’s my Harry Potter shrine. Archie comics shrine! Oh and this is Denmark! You guys have never met Denmark. He’s, um, my oxygen machine. I love him.” She walks through the kitchen, entryway, living room and finally ends up in the bathroom where she concludes by saying, “Look at this! Lookin’ at myself in the mirror! Lookin’ at myself in the camera . . . in the mirror! Lookin’ at myself—at you!” Finally, she pauses, smiles broadly and ends with a familiar good-bye: “Hey . . . Love ya!”
After that, her video shows a drawing of her cookie monster character at the bottom of the stairs and we hear her voice saying, “Lalalala, whoa! Stairs! Whoa! I do not pass. You shall not pass!” At the bottom of this drawing, Esther added the words: “And so he never passed the stairs again.”
She recorded one more, brief video clip on Sunday, August 22nd as part of Catitude’s group greeting for John Green’s upcoming 33rd birthday. In it, she looks tired, and is obviously struggling to breathe, her face pale and puffy; but she is smiling. Uncharacteristically, her comments are brief as she offers a sincere, “happy birthday” and “I love you” along with a promise to contribute something more appropriate later when she’s feeling better.
The following day, August 23rd, Esther was exhausted and spent most of her time in bed. That night, she sent what would be her final text message to a fellow Catitude member, containing two words: “love you.” She also viewed various TED talks online and was struck by one discussion concerning developmental disorders in children and the relationship of such disorders to the brain. Thinking about its application to her brother Graham, she sent the link to us, writing, “Idk it’s interesting but probably irrelevant to Graham but y’know still interesting and it’s only 10 minutes hey not too bad!!! She then commented on the same video via Twitter, saying: “I really like watching someone talk about something they are passionate about because as they talk they get all THIS IS A REVELATION, GUYS-y and to me that is entertaining/inspiring/hilarious . . . ”
It was her last time on the computer.
Her attempt at sleep that night was impossible. She couldn’t catch her breath. By early the next morning, it was clear that she needed more care than could be provided at home. We watched while the EMT’s carried her out, carefully placing her into the ambulance. Lori got in beside her for the ride to Children’s Hospital in Boston. Esther smiled bravely, though weakly through her oxygen mask, and then waved good-bye.
Before long, we arrived in the emergency room and gathered around our Star who was once again lying down on a familiar hospital bed. I went right 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 my hand, and held it tightly, closely, like a child on her first day of school who knows she must soon part, and do so bravely, keeping the tears in check.
And then once again we were in a hospital elevator, going up and up. Although we would not have wanted to be anywhere else, at the time we thought of this ascension to the familiar eleventh floor of Children’s Hospital as yet another necessary detour in Esther’s ongoing treatment plan.
By the time she got settled in her room, her online friends had become aware that she was “back at the hospital.” Soon, the comments, texts and questions on Facebook, Twitter and Esther’s CaringBridge site mounted concerning her status. Blaze, from Catitude, tweeted, “I know most of you reading already know, but @crazycrayon is sick and she’s all of my thoughts right now.” From Florida, another online friend, ericaeeks wrote: “I <3 @crazycrayon, please keep her in your thoughts tonight . . . ” and her friend, Andrew Slack wrote: “Plz send love, light, & breath to 1 of the brightest stars in the world w/a smile that lights up my heart: @crazycrayon.”
Strangers too were feeling the anguish and sent note after note of encouragement. Dripduke texted: “I just had to leave class because I was about to start sobbing.” Most of the messages were similar to the one by hazmatbarbie who declared, “Esther I love you!!! You can do this.” RebeccaActually summed up the feeling of many when she said, “You’ve never met me, but I love you.” 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, we took turns following this outpouring of affection, which brought much comfort to everyone, including Esther though she was in too much discomfort to respond.
It seemed to us that everyone online was talking about her! We shouldn’t have been surprised. It was the natural response of Esther’s online friends, collectively known as nerdfighteria. “A community,” someone once 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 family that Esther had come to know and love and now that one of their own was in trouble, they were standing with her. They could sense that their young Star was struggling, fading and they determined to keep praying, texting, tweeting, messaging, chatting and talking on the phone throughout that afternoon and well into the night. They were determined that Esther not go through this alone.
Esther continued experiencing much discomfort and was becoming increasingly unstable overall as the fluid collected around her internal organs. At one point, hospital staff decided to insert a urinary catheter, a process she had endured more than once and something she hated. One 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?” Gratefully, by late afternoon, the enormous amounts of pain medication she’d been receiving began to calm her. She was less agitated, and her breathing appeared less labored (with the help of the ever present BiPAP machine). She was still conscious but began keeping her eyes closed for longer stretches, and spoke less and less.
The extreme seriousness of the situation didn’t really register for us until Esther’s medical team arrived and pulled Lori and me away, saying, “It does not look good. She may very well go tonight . . . ” After they left, we returned to her side. Her eyes were closed and I leaned down and whispered.
“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. I had long thought of myself as Esther’s interpreter, or messenger, and had said on more than one occasion that I would write her story should this disease take her away. And I told her about the conversation we’d just had with her doctors. I told her that she might not make it through this time. I finished our talk with a question.
“Esther, do you want me to send a message and tell your friends how much you love them?”
I expected an immediate and affirmative nod, so was stunned by her response:
“No.” she said, calmly, resolutely.
It was such an uncharacteristic answer but, as hard as it was, I obeyed her order and in my next update didn’t mention that she was sending her love. (I am sure her readers knew how she felt about them.) I made the following entry on her CaringBridge site, mindful that there would be a ripple effect and outpouring of concern, grief and affection.
After an agonizing night trying to catch her breath and get comfortable, we came into the hospital this morning and Esther is now in the ICU. She continues having a tough time breathing due to what they call “fluid overload.” This means that her body, in part due to a compromised kidney, is finding it increasingly difficult to expel fluid as often as it accumulates. Her oxygen levels are also dipping and she’s flat out exhausted.
This visit is very serious. Our favorite doctor said just now that she could go tonight. I told Esther. She’s still fighting and shows no signs of wanting to give up! We are all here. Esther is surrounded by her doting sisters and the staff here who all know and care about her. We long for still more days with our Esther Grace! I told Graham earlier that she could die in the hospital but that we’d rather bring her home and enjoy many more star-lit evenings together. He agreed, saying that sixteen was, “too young to die.” Said Graham, “seventeen is a better age to die. Or maybe twenty because that is really old.”
Later, I would understand that she had already entered that forest, and had resolved not to look back. She had courageously gone into that valley of the shadow, and, like each of us, would have to face alone all that lay ahead. Looking on helplessly, we took turns holding her hands and stroking her amazing hair as she continued a long walk into silence.
With the medication working its way through her tired body, Esther soon fell asleep and it became clear to us that the breathing machine and her powerful heart were the only things keeping her alive. Before slipping into unconsciousness, she had talked with each of us and responded gratefully to our tearful messages of affection, singing, hand massages, and face pats. She loved her family more than anything, and we were all there with her as she slipped away. She would have loved having her beloved cats nearby and they would miss her terribly. (From that day on they would relocate to younger brother Abraham’s bed at night.) As Esther drifted in and out of consciousness, she suddenly blurted out the number “1842!” We were puzzled by this and went scurrying online to see if that date held any significance. I smiled thinking she might have just disclosed the answer to the secret of the universe!
Other than an occasional muffled mumbling, Esther continued sleeping. However, about an hour later, she suddenly opened her eyes, tried to sit up, and, looking directly at Evangeline (who was holding her right hand), said, “I’m going, I’m going.” Asked by Evangeline where she was going, Esther responded, “Oh, I’m just dreaming” And then she closed her eyes and returned to sleep.
Those were her final words.
For the next three hours, the only sounds in the room were from the machine that kept her breathing, the words of comfort directed toward her and the falling tears of those who remained beside her.
Well into the early morning hours of August 25th, we made the impossible decision to turn the BiPAP machine off. With the loud whirring and wheezing ended, the quiet was immense. Within half an hour, Esther’s unassisted breathing became increasingly strained as if to say, “I cannot go on much longer like this.” Evangeline remained at her right side with Abby to the left. Lori stood next to Evangeline at Esther’s side. Abby’s dear friend, Keri, who loved Esther as a sister, remained next to Abby as we kept vigil. Our boys had long before fallen asleep nearby. I stood at the foot of the bed.
After several minutes of waiting, crying quietly and touching our beloved Star, she breathed out one final, unusually long breath, like she was giving it up, offering it, being pulled forward into a newer, richer life. Her dying appeared to us more like a birth than a death, a kind of willing submission, a sense that her struggle was complete and that it was okay to finish this final battle. Recognizing what was happening, I looked up toward the ceiling and, half crying, half laughing said to Esther, “It’s okay, baby, It’s okay. You can go! We love you!”
A few minutes later, the attending physician—who knew Esther—slowly took out her stethoscope, placed it on each, now silent lung and then on that beautiful heart. Looking at me from across the bed she softly shook her head from side to side. As we looked upon the stillness, we all marveled that we’d gotten to participate in so perfect and courageous and amazing a life. Evangeline smiled and said, “She looks peaceful.” Lori commented that it was the first time Esther had “been without the use of her nasal cannula in a very, very long time . . . ” and then her voice broke. Abby pulled up the hospital blanket just a little closer to cover Esther’s shoulders and everyone laughed and wept thinking about that simple gesture, now unnecessary, the very first time any of us had been unable to bring comfort to our Star.
Slowly, carefully, we each offered a final good-bye.
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Back at home, I sat down and wrote the following message on her CaringBridge site.
