Friday, December 21, 2012

Busy With The Good

There is nothing, nothing worse than what happened on December 14 at Sandy Hook. The fact is, evil is real and "the line between good and evil runs through every heart" as Solzhenitsyn said. We are all a little more broken this year. And we must live with that reality. But with all the heartache and terror that life on this planet brings, I am convinced that people are fundamentally good. And therefore I have hope. Here are a few (personal) reasons for my optimism from 2012 as the year comes to a close. 

John Green's book, The Fault in Our Stars rocketed to #1 on many lists! This book is dedicated to our Esther and I think of it as a kind of love story she never got to have. It is a hopeful look at a hopeless reality. That's good news.

My kids: 
Angie quietly went back to being called, "Evangeline" -her given name. This makes me so happy! Though I like “Angie”, Evangeline means "one who brings the good news" and she IS good news. This spring, she'll be getting away to Europe for several months for some "woofing" (look it up!). 

Abby continues to shine brightly out in southern California where she's carved out her own, sweet life. Of course, most of my conversations with her are about her eventual return here! But I'm learning acceptance. I’ll sometimes think of her and be amazed that someone so wonderful could also be my daughter.

Graham is mostly sweetness and light and he's a gentle soul with a lot of potential ahead. He and I are good friends and I don't know what I'd do without him in my daily life.

Abraham (he goes by "Abe") has established himself as...himself. He is a one-of-a-kind original! All year long, he continued to skateboard, and even went to Camp Woodward in PA for a week of expert instruction. He learned a ton of new stuff this year, broke a wrist, bashed his face falling and all that. He loves a fellow third grader and has been sure to let everyone know all the details. (I would have been mortified at that age.) He has also begun to write. This was his "Year of The Letter" and his little notes are amazing. A neighbor recently lost her elderly mother and Abe wrote a letter of condolence. I didn't realize he'd been aware of all the medical traffic next door. Or that he cared so much. He wrote, in part: "First, I know that your mom died, so here's a letter to cheer you up! We know that your mom has been to the hospital a lot. Well, when your mom was alive, she was awesome! You are awesome too. Finally, you are the best friend ever! ps. We wish your mom did not die. pps. I am so sorry that your mom died. I'm just glad it wasn't you! Have a happy Christmas."

Esther. She's with me all the time. I realized something this year. I used to say, "Other people's children die, not mine." At least that's how I made sense of it. You see, my daughter is fully alive, very much with me, inside me, living. I continue to relate to her. Recently, a woman my age came up to me after I spoke about Esther and told me about her son, a young man in his early 20's, a soldier who didn't come home from Iraq. As I looked in her eyes, there was deep sadness but also abundant life. Because I could see him, alive in her! There were no words, just a mutual tightening of the throat, a knowing hug and an understanding. I know what she knows. You can't kill love. We are all vagabonds of grief. So, there is no such thing as the way I used to think. Your child's death is my child's death. There is no "other death." Another's death is equally our diminishment, to paraphrase John Donne. 

In 2012, I also finished writing Esther's Book! Yes!! Although, in terms of any project, I am only allowed to say the following:   “It’s still very much a work in progress but I’m hopeful we will know more soon.” However, you think John Green's book was exciting?! That's it. In November I did speak about Esther in front of 400 high school students in San Diego at a Tedx youth event. That was awesome! The whole experience was beautifully inspiring and I am grateful for any opportunity to tell her story far and wide for as many years as the fates allow! (Again, for more info about my book, simply refer to the sentence in quotation marks above. Wink. Wink.) 

We visited with friends and family in California, New York and beginning tomorrow, we'll be with Lori's family in New Jersey, which will be fun. I'm reminded that family and good friends are everything in life. I think the best kind of life is lived in community and I am convinced that some of us need more alone time to find ourselves but all of us cannot truly know who we are without each other.

Our foundation, This Star Won't Go Out, this year went over the $100,000 mark in giving! This is amazing when you consider that a typical donation is $5 or a few hundred dollars from a group of high-school students through various fundraising events. It's quite astonishing and deeply satisfying. There is nothing as wonderful as hearing, seeing, or reading about the tears of joy these very shattered families feel when they get an unexpected check. Thank you to everyone who gives to TSWGO or to anything positive! You prove my point that goodness wins. 

Lincoln, the movie that is, was my favorite film of the year and when he and his wife were arguing about who has grieved more, well...well, I sobbed and sobbed and used up a box of tissues on that one scene alone. 

My favorite book this year was TFiOS (obviously) but I also read and read many other, worthy tomes. A nonfiction equivalent of TFiOS that I really enjoyed would be, A Brief History of Thought: A Philosophical Guide to Living by the French Philosopher Luc Ferry. This book has worked in me like a massage on my knotted soul. And music! I think the most profound songs of the year were I Will Wait by Mumford and Sons and Home by Phillip Phillips. Both songs are amazing messages of hope and good reminders for what's ahead in 2013. 

Home. I know it when I feel it. So, there's much to be glad-hearted about. My favorite thing this year was anytime I heard my bride happy. Lori has brought much hope to many college students as an instructor and especially as a Life Balance Coach at Quincy College. She broke her wrist in an awful way this year. I was truly, really sad for her. But she is strength walking. And, besides her indomitable spirit, she's given me much encouragement, either through affirmation or rebuke, as needed. We struggled to make ends meet and vowed 2012 would be the last year of that nonsense. I threw out my shoulder in the summer (sorry Red Sox, no longer available), lost my first adult tooth to decay and, for a while, the only silver linings that appeared for me this year were the ones above my ears. But I end expectant and renewed. And I know what happens after death! But, sadly, this blog entry is out of room so the answer to the meaning of life will have to wait for another day.

Finally, I woke up the other day with these words on my lips: "I saw you busy today." So I end with them.

I saw you busy today
in a world where Evil is real. 
Where there are no excuses
And no words for the -
We must live with that. 

I saw you busy today
your hands were dirty
but your heart was clean
and I wondered if that's the way it works
that wholeness is found in healing you

I saw you busy today
sometimes changing sad faces to happy ones
sometimes being sad, too
And you were Goodness
And therefore I have hope.

Busy with the good. Watch out 2013!

Sunday, December 9, 2012

Great Gifts!

Congratualtions to the author, John Green! What a great gift to give to the world on this first day of Hanukkah! His novel, The Fault in Our Stars made it to several Top 10 lists for 2012 including the #1 spot on Time Magazine's Fiction Book of The Year for ALL categories! Not too shabby for a book which is dedicated to -and partly inspired by- our Star. (Check out the Goodreads comments below about Esther.)  Oh- the book should come with the following warning: "You will cry." And it should also include a box of tissues. Soft tissues. "Not the sandpaper kind." Esther would say.

One more thing; the foundation we began in Esther's honor, recently passed the $100,000 mark in gifts given to needy families! Now that's an even better Holiday gift idea.
This Star Won't Go Out!

Sunday, November 25, 2012

Love is Real

Last week I spoke to 400 high school students in San Diego about the topic, “Life before death.” It was my first public talk about my daughter Esther. Esther was well loved in life and is deeply missed by so many now. Often, I’ll get asked about that, about whether a larger, shared grief is a comfort or a burden. It’s not even close: it is a great comfort that a growing number are inspired by her story! And I am deeply grateful that I can be a sort of ambassador for her message of hope. The only thing better would be sharing the story with her by my side. But then, I kind of have that, too.

Here are a few, disconnected excerpts from the talk which was entitled, “Life Before death; My Daughter’s Hope for the Future.”

I want to talk with you about a Hope for the Future; about the possibility of living in the face of death. Dying is inevitable. Living is not. Death is not the most powerful thing in life. Life is the most powerful thing in life. And Love is the engine of Life. There’s something stronger than even death!

Recently, Esther’s 9 year-old brother Abraham asked, “Dad, is Heaven real?”  After a moment, I said, “Let me ask you a question. Is Love real?”

Esther’s life message was clear for all to see: Somebody, somewhere is waiting to love you; somebody, somewhere is waiting for your love.

And then, right in the middle of the Fairy Tale, came the cancer. On Thanksgiving Day, 2006 the diagnosis: “Papillary Thyroid Cancer metastasized to the lungs.” The clouds had moved in and were about to cover the sunshine.
Gravity may have tethered her to the four corners of her bed, but her spirit would not be bound. She would live a life before death, embracing the beauty and enduring the agony. She reached out  –she was a Welcomer after all-  and through a growing, online presence that included vlogs and blogs, she built a community of friendship in those virtual spaces in that Magical Land of Adventure known as “Nerdfighteria.”

With big sister Abby’s encouragement, she met the King of Nerdfighteria himself, the author John Green. At Leakycon 2009, she walked up to him, stuck out her hand and said confidently, “Hi, I’m Esther!”  “That’s a nice name” he responded with a friendly smile. After a slight pause, she awkwardly blurted out, “YOU’RE AWESOME!!!”

John would get to know her and was charmed by her (naturally) and celebrated her spirit which increased her visibility as a passionate advocate for those without a voice. She also became somewhat of an Advice-Giver, answering online questions, some of which were ridiculous and trivial but most of which were of a serious nature. And she tweeted:

“Welp. I'm going in to the hospital again. Thanks lungs I love you too.”

“Just wish I could get better so I don’t have to keep worrying about getting better.”

Just a few days before she died, I said, “Esther, what am I going to do without you? How am I going to live without you?”  And I thought she would talk and say, “Well, Dad here's what you do; here are the three steps to dealing with grief...” But she didn't say a word. She was sitting on her bed; she just held out her arms and said, “Come here.” So I went over and hugged her and she hung onto me and I held her. And she didn't have to say anything. She didn't have to say anything at all. It was her way of showing me that we were going to be ok.

After her death, her little brother Graham left a few messages on the house answering machine: “Can anyone out there please tell me how to get in contact with my sister? I want to tell her that I love her and I miss her and she can visit me anytime she wants.”

She was buried with a “Save Darfur” wristband on her arm. Her life was entirely this world focused. She believed in doing good work here and in leaving eternities with eternity. While she rests in awesome (as it says on the back side of her tombstone), we work for awesome.

So, yes, Abraham, Love is real. 

~Designed by Zach Payne

Monday, October 22, 2012

"Radio Comfort”

I have always loved the radio. Whether it was pop music or a Dodgers game with Vin Scully, listening as a child brought me much comfort. I even dreamed of one day hosting my own radio program where I’d interview interesting and important people! This love of radio continued into my young adult years when I found a favorite in National Public Radio. To this day, unless I have a lecture to listen to on CD, the radio dial in my home or car remains set on NPR.

In 1998, I went with my wife and four children to teach English in Saudi Arabia.  My students were all members of the Royal Saudi Navy. However, my first trip into the “magic kingdom” was without my family as it was customary for new teachers to first complete a requisite probationary period. “Some teachers have their families arriving after only two or three weeks at most!” said our Saudi contact, a certain Mr. Rashad, as he broke the news to me just days before our scheduled departure.

It was only a few days after all, quite reasonable, we thought, so on August 6th, after a long flight on Saudia Airlines, I landed in a different kind of holy land. Before the plane descended, I watched several Arab women transform from jean-clad and open-faced to abaya covered with their faces hidden behind the omnipresent veil. An abaya is a kind of ankle length, long sleeve robe which is always black. My wife describes it as a “heavy wool blanket,” but “otherwise quite comfortable.” Most Saudi men cover their heads and wear white robes, called thobes. I would soon get used to seeing the sight of these men in lab-coat white trailed by women in black, their brown eyes alone exposed behind thick veils.

I saw no clouds in the late evening sky and on the ground everything appeared covered in lunch-bag brown.  I noticed that air conditioners were attached to every building, regardless of size and that all were running. Within a few days, I realized that a hot, indoor shower and a summer day outside in Arabia were similar experiences! And I would quickly learn how to relieve my sweat-soaked necktie through arduous squeezing.

My temporary “single status” apartment was just a few blocks from the Persian Gulf on the Navy compound itself. Right away, I received the first of many corrections: “No, Habib. This is Arab water. Persia is over there, but this gulf is ours. It is the Arabian Gulf.”

Late into the night I watched CNN and then the BBC and for a few hours the television helped to tame the homesickness. At 4 AM, I finally admitted that facing my aloneness and falling asleep were better companions than forced insomnia. But sleep remained elusive and I became tormented by all that I had left behind. I began to panic because I couldn’t visualize the faces of my children so I sprang up from the bed and returned with a picture of my wife and children. For a while, I tried sheer silence. Finally, I turned on the radio and found in a PBS broadcast a familiar voice from NPR.  I was comforted by news from home and was soon fast asleep.

I have often reflected on that early morning trial. I prayed hard. I sought relief through distraction, through exhaustion. I was inconsolable until I closed my eyes and that invisible voice spoke to me, sang me to sleep. A mundane heavenly lullaby touched me. Words spoken from earth to sky and back again gave me the peace I so desperately sought.

It took 10 weeks before my family was allowed to join me in Arabia. I’m still not sure that 70 days was worth the cost but we did end up having some wonderful adventures over what would eventually be three years in that sleepy, sandy place. No, I never became a radio personality. And I’ll admit that it wasn’t the last time I fell asleep listening to NPR! But I am so grateful the radio was there when I needed it.

And yes, I recently made a pledge.
~Arabia 1999~


Friday, September 21, 2012

Autumn ~A True Story

As they moved between the rows of gravestones, he asked his daughter if she knew what they meant.

“They are there so families can find their relatives?” she answered with uncertainty in her voice.

“True, true” her dad responded, chuckling. “But it’s more than that. It’s because these people once lived. Even though there are names and dates and sayings on the gravestones, after a while no one alive will remember any of the people buried here. But we show respect for them because they lived. And these granite monuments last a very, very, long time and represent eternity. But even they will crumble into dirt. Everything must finally die,” he finished, a sadness in his voice.

She leaned in and put her arms around his waist. “But you won’t die, soon, will you?” she asked, sincerely, looking up into his, now reddened eyes.

“I have no plans to! But I’m not in charge of that,” he said, returning her embrace.

For a minute they were silent, looking around at the stones and trees whose leaves hung on defiantly in the face of those early days in October.

Her dad broke the silence. “You know...” he said smiling, “I can’t really die, anyway.”

“What do you mean, daddy?”

“Well, there’s something bigger than death, something stronger, still. Do you know what that is?” he asked.

“God?” she answered.

“Yes. But remember, the..."

“…It’s love! It’s love, isn’t it?" she interrupted, excitedly. "Love is more than this. I remember! God is Love and nothing can separate us from God’s love."

“Yes! You are so smart!”

“Think about it…” he said, moving one arm in a sweeping motion as if to collect all the names and dates around them. “Every one of these people was once loved by someone. There was a day when their loved ones gathered around these spots to bury their grandparents, friends, moms and dads, brothers and sisters, sons and daughters. They would have cried and cried, knowing they would never again hold them again in this life. But even though most of these people are now forgotten by us, they are still loved by God and because of that, they can never truly be forgotten.”

“They can never really die,” she whispered, as if trying to keep this one, big secret just between the two of them.

In the quiet, he gently held her head close to his side, occasionally swallowing up her unbroken hair in his large hands while she kept her arms locked around his waist, this father and daughter, alone and keeping vigil for the remembered dead. Soon, a strong wind, rude and proud and blustering, arrived to shake loose a cluster of leaves from a nearby tree. Unyielding, these first fruits of autumn shot upward in an attempted escape before gravity arrested them and so began a reluctant, but inevitable waltz downward, toward the earth.

Saturday, September 8, 2012

When Dogs Die

Last month, Agnes died. They got her as a pup over 15 years ago and just a few days after a neighbor shot dead their beloved malamutes for "bothering" his sheep.

Agnes was gloriously red, energetic and fully devoted to her mom and dad, who also happen to be my parents. I guess that makes her my sister. But she was also very old, blind, and could no longer get around and it was clear that her time had come. On that August day, the vet came to the house and, with the ones she loved most in the world by her side, for one last time, Agnes fell happily asleep. Afterward, my father buried her in a deep hole he'd dug out back. They put a huge rock on top of the spot which will, no doubt, become a favorite jumping off place for the grandkids. I think Agnes would have liked that.

She had a good life and was spoiled in every way, but I know my mom's heart is broken so I wrote a little poem for her, and for Agnes.

"For Agnes"
I have never been a dog person
they take up my time
they need to be walked
my heart has chosen smallness
before such expansive giving
Someone will ask, "Do dogs go to heaven?"
"Can animals live forever?"
Foolish humans with their questions!
Heaven is Love
Dogs love.
that's what they do
that's who they are
(cats endure us! but dogs adore us)
why? why? when our rising is at best beneath them!
Certain lucky ones, somehow in the mystery
become the objects of their adoration
and the feeling bends to mutuality
which is evidence of divinity
look at my mother and her dogs
I have never been a dog person
but I may yet be!
my heart seems softer, larger now
on this saddest of days
because of Agnes
Agnes of the Lake

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.


“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)


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 ├╝ber 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? 



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:


Saturday, July 28, 2012

No Caravan of Despair

It was the last weekend in July and I was in big trouble. Dad hadn’t been able to keep the place in San Jose. It was just too big for the three of us so we moved across town next to the many storied Pruneyard Towers at 100 Union Street, Apt #36 in Campbell, California.

I was relieved to be many additional miles away from one acquaintance who had invested a fairly large amount of illegal material in me. Mick expected a substantial return in the market I was to open up in this new city. Unfortunately, my younger brother and I had enjoyed his investment very much, profit and all! I now owed a considerable sum to this tough kid with biceps the size of my thighs. The movie, Rocky had recently won the Oscar for Best Picture and this guy was also an Italian-American from the east coast who actually looked and sounded like Stallone. He was even left-handed!

After all the evidence went up in smoke I tried my best for several weeks to stay away from him. I long ignored his ‘generous invitations,’ but finally consented to meet him, and would try hard to bluff my way through, to buy more time, to con the con man face to face. At first congenial, within a few minutes he took me aside and, in true gangster-like fashion, promised that our next meeting would likely not go well. Unless, of course, I had the money I owed him, with interest. Back in front of his entourage, which included attractive ladies and a handful of body-building and juvenile hall alum, Mick pulled me close to his face, smiled menacingly and whispered that he would find and sincerely hurt me if he didn’t get his money. He was very serious. I could smell it on his breath. Then he released me from his grip, flashed that mile wide, handsome, perfectly-toothed smile and sent me on my way. I had one week.

Where could I get that kind of cash? I asked my dad. He frowned. I couldn’t tell him why I needed such a large amount. Like me, my friends had nothing to offer. I was broke. I wasn’t working. I had no valuables to sell. I didn’t want to steal but that seemed a new possibility.

I spent the next few days hiding at Half Moon Bay with my best friend Mark. We thought and thought about how to come up with thousands of dollars, how to produce such a large amount out of thin air! We finally gave up our escape attempt and dejectedly headed back over Highway 17.

I thanked Mark for his friendship and for all his help. He said again that he was more than willing to face my enemy and even fight him in my stead.

“That SOB needs someone to kick his butt,” he urged. “I should be the one to defile his pretty face. I may get bloodied doin’ it, but he’ll regret every minute he wrestled with me!” He was right; Mark could stand up to him but I knew I had to be the one to face the giant alone.

“It’s cool, Mark. I got myself into this hole…and maybe he’ll forget about it anyway,” I said, knowing it wasn’t true.

When I arrived home that evening my dad said two “friends” were waiting for me in my bedroom. “Friends? What do they look like?” I whispered, as the color drained from my face. My worst fears were being realized. Mick was there, in my room with one of his cronies. How did he find this apartment? Who gave him the directions? I excused myself and ducked into the hallway bathroom. As my heart sank, I thought of running. But where would I go? I couldn’t run forever. He knew where I lived! Surely he would give me another week to get the money. I left the bathroom and entered my bedroom.

He was there with Tony, who was even tougher looking than his boss. And there, too, was my little brother, sheepishly grinning and blissfully stoned. Jerry had often stood up for me, fighting ferociously whenever duty called. In fact, not too long before, with one punch he had flattened an acquaintance who dared to threaten me. Of course, the kid he knocked out was not the one now sitting on my waterbed. Jerry knew that I’d have to settle this alone and was quite content to stay behind while the three of us made our way past my dad and out the door.

We went downstairs to the parking lot and stood facing each other in an empty space on a cool, summer evening. Mick said my time was up. He wanted his money, and he wanted it now. “Steal it! Borrow it from your mother,” he barked. Most of his vocabulary consisted of profanity, limited to just two or three words which he used to great effect though he did manage to toss in an occasional pronoun.

I reasoned with him; I pleaded. But I would not beg. He became highly agitated and began to pace and circle me like a hungry animal that must soon pounce on its prey. Nothing less than a fight would satisfy him.

“Mick, this is crazy. Look at you! You’re huge. I can’t possibly compete,” I reasoned, trying to bluff him, trying to avoid the inevitable.

“Take off your jacket!” He snarled, nostrils flaring and head lowering for the charge.

I definitely did not want a fight but he was beginning to get on my nerves. “An irritating fly that just won’t shut up.” I thought. I decided at the right moment that I would go down swinging. He continued to banter and then began to shove me as his muscular friend remained silent, standing off to the side with arms folded, stationed like a sentry who would insure no retreat.

Mick tried a new tactic. He began to mock me and my father and brother. In many ways he spoke the truth though I wouldn’t understand that until later. I remembered the few times I had boxed him in my back yard with regulation gloves and timed rounds surrounded by a crowd of our peers who jeered and cheered. And I’d done well against every opponent, including Mick. Most of the groupies who dared enter the ring with him were too afraid to actually throw effective punches for fear of what would surely follow. I understood that; I had been afraid, too! Still, I had wanted his respect and so had fought as well as I knew how and he knew that.

His unreasonable and ridiculous rantings were bringing me dangerously close to losing it. “Get that so-and-so jacket off now and fight like a man!” He screamed. The balance now tipped and I resolved go down with dignity and make him regret this assault.

I wish I had remembered the approach taken by my matinee idol, Steve McQueen when confronted under similar circumstances. Or, had I responded like Paul Newman in the movie, Butch Cassidy and the Sundance Kid, I would have gained the edge I so desperately needed. Newman’s character toppled his much larger foe through a surprise, well placed kick to the groin. But, while I considered my first move, Mick remembered the movie.

Exasperated and flushed with adrenaline, I began to remove my light coat. When it was half way off my arms, my head exploded and down I went. Mick had taken advantage of my momentary incapacity and this southpaw had buried his massive left fist dead center into my face. I was completely knocked out! I had often wondered why those boxing greats couldn’t just “jump right up” after such a punch and continue to fight. Now I understood.

I tried to move but everything was spinning around. At first, I couldn’t make out where I was or even what had happened. He challenged me to stand up but I had always been a bleeder. Even if I had wanted to continue, the slightest nose bleed required that I sit for at least twenty minutes.

“It will be even worse if I don’t see the cash by this weekend,” he threatened, slapping my head for effect before stomping off.

I was now alone. Flat on my back and slurping down gulps of my own blood, I found myself dreading the future. It wasn’t about the money. It was about my life. My folks were long divorced. My siblings were getting into trouble. I was sure to fail my second attempt at a senior year. My best friend was the only boy in school who wore an earring. I was without a girlfriend or a job. Even a peaceful journey, on a beach south of San Francisco, had been unable to bring relief. The blow to my face was miniscule compared to the impact on my heart. But I would change. I would leave this life style of multiple humiliations. It would be my turning.

Well, you can’t hide blood. I returned to our apartment and promised dad that I’d find a job and pay him back. That weekend, I sent someone else to deliver the money. I was officially finished with Mick.

Until recently, that is, when I located him on facebook. He was still in possession of that handsome, toothy smile and his muscles appeared unchanged. And he was apparently living a happy, affluent life. As I looked, I wished I had punched first.

I quickly left the page.

“Come, come, whoever you are.
Wanderer, worshiper, lover of leaving. It doesn't matter.
Ours is not a caravan of despair.
Come, even if you have broken your vows a thousand times.
Come, yet again , come , come.”


Saturday, June 30, 2012

I've Got a Song

Earlier this month, my son, eight year-old Abraham asked me if I’d be upset were he to become a rapper. Now, I have not yet developed a taste for that genre, but I told him I’d be happy to support him, whatever he sang, as long as his music was positive.  Around the same time I attended a concert and, except for a few, young staff members, I’m pretty sure I was among the youngest in attendance. I recognized just one song in every six or seven but the folks on my right and left and all throughout the room knew far more; in most cases, every piece. These were folks in their early eighties through mid nineties and the songs we heard had been the music of their lives.

As I sat there in that assisted living facility, I wondered. Here were people who had at one time danced to these songs, made love to their melodies, cried with the vocalists. I mused about their sacred connection to what they were, once again, hearing and to what they so obviously were enjoying. Even the most bent over, sat upright and, as I looked around, all the faces seemed to soften, even with the tears. They were connecting to something other, something more. We’ve long known that each person has a unique soundtrack playing in their head, put there before birth, by choice as we age and myriad tunes smuggled in without our permission. It’s all there, this music, this lyrical life.

When does such a soundtrack of a life begin, and end? I have fifties and sixties music in me because that’s what my parents listened to on the car radio and what they collected for their record player at home.  I liked Motown and The Osmonds and decided early on that I would one day marry Marie.  I remember my mother and father slow dancing to a long Johnny Mathis album and later curling up on the living room couch, low lying clouds of cigarette smoke floating above their heads while The Righteous Brothers sang, “You never close your eyes anymore, when I kiss your lips…” their eyes betraying the song.

When I was 12, I heard what sounded like rain, or waves on the beach and thunder as I walked into my sister’s room to find her with friends in the midst of what smelled like tree leaves burning. They were giggling and invited me to stay and “hear this one song.” I didn’t like all that smoke but I sat down because her friends said I was cute and because they had noticeable breasts. “Girl ya gotta love your man, Girl ya gotta love your man, Take him by the hand, Make him understand…” and one of them took my hand and pulled me up and she swayed and they laughed and offered me what they were smoking but I refused.

Later, Kevin would introduce me to Cat Stevens and a few others and by myself, I would find Jim Croce and secretly enjoy David Gates and sing all their songs to my imaginary girlfriends in front of the mirror. Later, The Beatles would come and stay, and America and The Eagles. I hated Disco but endured it for the sake of one girlfriend who loved The Bee Gees and Abba. Until I was 19, the radio was always on and I drank deeply from the pop music of the seventies, loved the group, Boston and determined that I would one day live in the city they named their band after.  As the decade was ending, a girl from my childhood, now a young woman, invited me to stay the night and I wanted to, but I had seen her unable to fall asleep without drugs and without Led Zeppelin blaring on the eight-track, so I told her, as she sat on the bed waiting, that I "needed to go.”

Like most Americans my age, I made sense of the world by inhaling the music of the fifties, sixties, and seventies. When the eighties arrived, I pretty much turned off the radio, except for pre-70’s tunes. From then on, I would only buy Christian rock and roll, declaring that I would not be influenced by the messages “of the world” -as if I could divide my worlds.  However, I did continue to read Rolling Stone magazine in order to stay aware of what was influential in pop culture. A few songs would sneak by and find their way into my heart like Roy Orbison’s “Anything you Want”  which I would adopt as my anthem to my then, one year old daughter, Abby, singing it to her as we drove beside the beaches of the north shore in Massachusetts. 

In my early 40’s I realized my kids were growing up and I decided to start listening to what they found exciting. I also went back and selectively listened to all the music I had missed. I found a lot that was amazing, such as U2 and…U2… (Okay, there were other groups and songs and I even found a Madonna tune or two I learned to enjoy!) I liked Coldplay right away and am listening to them now as I write.

When I am ninety-five and the young band members stop by to entertain “the old folks” with “oldies” I will know everything they play and I will love the music, even Bee Gees songs which I will rise and attempt to dance to. When these musicians play what they have learned, I will hear what I have internalized, words and melodies that have made me who, and what I am. And I will be happy with that and when they play their calm version of Zeppelin’s, “Ramble On” I will look longingly toward the door as the past, present and future melt into one, my fingers forming guitar chords, my feet moving as my heart soars.  When they play Croce’s, “Time in a Bottle” or Cat Stevens’, “How Can I Tell You?” the young staff will whisper that those were such ‘nice songs so long ago’, but I will smile, gratefully, and think, “No, these are my songs, today.”

Then, maybe, maybe, they’ll play a few songs made famous by a now, middle-aged musician named Abraham Earl. That will be the highlight! And I will know all his songs by heart.

I've got a song, I've got a song
And I carry it with me and I sing it loud
If it gets me nowhere, I go there proud

~From Jim Croce's "I've Got a Name"

Saturday, May 26, 2012

Necessary Adjustments

For me, almost nothing would be as terrible as losing my sight. To test this, I recently asked a friend (a sighted person) if they thought they would be able to continue living were they to suddenly or gradually, become blind. They quickly answered "No." A very honest response and I agreed that it would seem an impossible burden for those of us who usually take such abilities for granted. My friend then asked me the same question to which I responded, "I cannot even begin to imagine what that would be like, but I hope so. I hope I'd (eventually) accept it and make the necessary adjustments. And I imagine it would be a bit easier to bear up under if I were accustomed to living a rich, interior life." That made us both think. If you are living from the inside-out, then whatever happens on the outside cannot truly get at the real treasure, buried deep within. But what is this kind of life and how to nurture it?

Religious traditions have called it things like mindfulness, centering, growing in Christ-likeness. It's an ancient idea, transcending peoples and places. Let me be clear! I am not saying that the body is bad and that another part of us, some, ghost like "other-us" is good and is to be encouraged at the expense of what we can see, touch and hold. I do not think that kind of separateness is helpful; we are one in being, fully connected to our brain stems, feet, to one another and the universe. At death, we change; this body ceases to be as it is, but only as it is, now. In some way, somehow, our soul is our body is our mind is our consciousness and all that...all of that, needs careful curing and tending.

What does it look like, this part of us that is all of us that lives fully in me but is less than me without you? I don't know! But Wisdom is a good picture. So is caring for mercy more than for justice but not at the expense of justice. Can there be something more than Justice? A bigger, more enduring reality where all that is broken, and sick and evil can find its way to reconciliation? At the space where justice raises its gavel in triumph there exists a greater permanence.

It's in that place that our interior life is called to shine. It is solitude and community, aloneness and gum-on-your-shoe everyday reality. It's kindness and gentleness, peace and pain. Welcome and safety. The land where hell and heaven meet and where both are swallowed by More. The 8th Century Sufi Mystic, Rabi'a al-'Adawiyya, said:

I carry a torch in one hand
And a bucket of water in the other:
With these things I am going to set fire to Heaven
And put out the flames of Hell
So that voyagers to God can rip the veils
And see the real goal.

She was right! This is bold action and it begins within. Pails 'afull and torches aflame are now my weapons of the spirit. I want my brothers to see! But the inundation and burning up begins in me, with me. I must decrease so that Life may increase. My diminishment is my abundance. One cannot kill life. Change it. Disturb it. But Life will win for "death has lost its dominion" as Dylan Thomas said so brilliantly.

Wise men and women have often said that when we begin to speak about such mysteries we have already diluted them. When we pretend to speak about most things, humans often do so with unabashed authority, with an absolutism, with little room for humility. Rabi'a spoke to that, as well:

The one who explains, lies.
How can you describe
the true form of Something
In whose presence you are blotted out?
And in whose being you still exist?

And so I dilute. My life is a dilution. But also a perfection. I must reach into the deep while also pointing away from me to what is higher still. I release the silence and the beauty, and turn to the cries of the voyaging; I must rise and fill my arms with earthly things...though not lesser things. I look inward to live and live outwardly to find the way of knowing and to know the way of finding.

Take time to make the adjustment; fix-it. Begin within, but resolve to continue with a commitment to living a "life on the outside." Otherwise, we've got a stagnant pond, a salten sea, a deadly poison. We were meant to give life, not take it. For me, nothing would be as terrible as losing my true vision: a deep, interior life.

But there is hope even in that place.

Don Quixote at lunch.