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Archive: 'Rebecca' Category

Playing Shiva

Children charged through our house, laughing and shrieking and calling to each other as their games shifted fluidly from one imaginative burst to another.  In the dining room, their adults sat around the table and talked, benignly ignoring the chaos around them.  Earlier, there had been a group photo of the kids and rides in a crazily-painted convertible.

I sat in the kitchen window seat, my feet braced against the middle frame, staring out into the back yard.  The afternoon was chilly and bright but not sunny, as befits March in Cleveland, but I didn’t really see it.  I only know what the weather was like because I’ve gone back to look at the photos of that day.  Whatever light was entering my eyes and falling on my retinas wasn’t leaving any impression in my brain; I was focused somewhere unseeable, trying not to think about the unthinkable.

A hand on my arm snapped me back.  Rebecca stood next to me, her expression clouded and frowning.

“Hey there, Little Spark.  What’s up?”

She climbed wordlessly into my lap and curled up against my chest, her back to the window.  She rested a cheek in a cupped palm that pressed on my sternum, looking unseeingly into the kitchen, still pensive.  The chaos was downstairs in the play room now, distant and muted.  I circled my arms around her curled frame, gently pressing her to me, listening to and feeling her breath draw in and out.

I knew she was upset, and I knew just as certainly that she wanted to talk about it.  I was far less certain that I wanted to hear it, but this wasn’t about me.  It never had been, and it was far less so now.

“What are you thinking, sweetie?” I asked after a few moments.

“I’m scared that my brain cancer won’t go away and I will get dead,” she quavered miserably.

Suddenly I was hugging her tightly, my face half-buried in the bright blue shmata she wore on her head, tears coursing from my eyes.

“Me too,” I choked out.  “I’m scared too, honey.  Mommy and I are both scared.  It’s okay to be scared.”

We wept quietly together, curled up on the window seat.


I had been crying a lot at that point.  Three nights before, after all the kids had gone to sleep, I had stumbled into Kat’s and my bedroom, collapsed on the bed, and sobbed without stopping for more than an hour.  At some points, I wept so intensely that Kat tried to get me to take medication to calm myself, afraid that I was about to literally choke to death on my own sorrow.  Part of me wanted that to happen.

Because earlier that day, we had been told that another tumor had emerged.  As soon as the doctors walked into the room, we knew from their body language that the news wasn’t good.  When they asked Rebecca if she would go play with the Child Life specialist while Mommy and Daddy talked to the doctors, we knew it was bad.  I felt the blood drain from my face as I reached out to take Kat’s hand in mine, both of us staring at the lead doctor and still trying to hope that it wasn’t as bad as we feared.

It was.

The previous August, the doctors in Philadelphia had told us the tumor was essentially completely removed, and that a long course of radiation and chemotherapy could, possibly, prevent a recurrence of the cancer that had almost killed our daughter.  They didn’t give odds.  They didn’t have too many assurances to give us, save one.  They could pretty well assure us that if the cancer came back, all we could do was watch Rebecca die.

Now it was March 20th, almost exactly seven months from the day she had first seized.  We had gotten her through multiple surgeries, two months of treatments in a city far from her home, and then weekly chemotherapy back home.  Holidays had come, her MRIs had been clear, we’d returned to a relative normalcy.  The nightmare had engulfed us, then receded.

Now it engulfed us again, more complete than ever.  For those seven months, I had held my fears in abeyance.  Now there was no dam to hold them back.

I lay in my bed, almost screaming my sorrow, choking and nearly convulsing, as I tried to cope with the certainty that our little girl was going to die soon, and there was no hope left.  Although she would ultimately prove me wrong, because of course she would, I tried to come to terms with my desolate conviction that Rebecca wouldn’t even graduate kindergarten, let alone turn six.

That night, I started to mourn my child’s death.


Within a minute or two, Rebecca was done crying and starting to get restless to rejoin the chaos.  I paused my own grief, wiped the tears from both our faces, and gave her kisses.  She smiled at me and climbed off my lap.

Five minutes later, she charged through the kitchen with her friends, the kids she’d shared a playgroup with since they were newborns, shrieking and laughing along with them, because to be five years old is to live completely in the moment.

They thundered onward, down the steps to the back hall and up the stairs to the sun room and on to the living room.  I listened to her bright, sunny voice echoing from across the house, drew in a deep breath, wiped away my tears, and resolved to live in the moment as much as I could.  For her, and for me.


That night, after the kids were asleep, Kat and I stood in the kitchen, cleaning and putting away the last few dishes left over from the play date.  We talked about the day, how much fun all the kids had had, and shared our mutual admiration of our friends, who had brought their children to play with our child, knowing how that would sharpen their kids’ pain when Rebecca’s death came.

“Thank you for letting me fill the house with people,” Kat said.  “I know it’s tough for you sometimes, having that much noise and activity.”

I shrugged.  It didn’t seem to matter.  Very little did, at that point.

“Do you understand why I wanted them all here today?” she asked.

“You were sitting shiva for her,” I heard myself say, distantly surprised by the words as they emerged.

“Yes,” she said quietly.  “How did you know?”

“I’ve known you for seventeen years now.”

“I was sitting shiva for her while she’s still alive.  How fucked up is that?”

I shook my head mutely.  Tears streaked both our faces.


In the year since that day, a year ago today, I’ve come to realize what an incredible gift it was for Rebecca.  To bring all those kids and adults who loved her so much into the house, all those people she’d known and loved all her too-short life—to give her a day of play and fun and craziness, the kind of craziness she loved, while she was still able to enjoy it—what better form of mourning could there be?

Rebecca knew, long before I did, possibly even before Kat did, why her friends were there.  She mourned the truth, and then had a fantastic day anyway.

I may have been far older than her, but she was far, far wiser than me.

Big Little Heroes

On March 15th, 2015, there will be a St. Baldrick’s Foundation fundraising event at the Cleveland Heights Community Center.  At last year’s event, Rebecca was there, running around and flipping out (in a good way) as her sister Carolyn shaved to raise money.  She gave a big hug to her kindergarten teacher, who had shown up to surprise her and had his head shaved as well.  She was, to all appearances, a totally normal and healthy kid, so full of life that many people there didn’t realize she was one of the honorees.

Four days later was the MRI that revealed the second tumor, the one that killed her two months later.

This year, Carolyn will not be shaving her head, though she is again captaining the team for her elementary school.  In her place, Rebecca’s best friends in the world—the kids from her infant playgroup, as well as her friend Ruth—will be cutting their hair or shaving their heads to raise money in Rebecca’s honor.  If you want to make a difference in their lives, as well as the lives of children who have or will one day have cancer, please consider donating to one or all of these brave kids:

Some of them took years to grow enough hair to comb, let alone braid.  And yet, even at their ages, they are willing to sacrifice that hair in order to do something positive.  We are so, so grateful to them all.

Rebecca being fierce, July 20th, 2013.  Her first tumor, which was already present in this picture, was discovered a month later.

We are also very grateful to St. Baldrick’s for working with us over the past few months to establish The Rebecca Alison Meyer Fund for Pediatric Cancer Research.  This “Hero Fund” is specifically designed to fund promising research into the prevention of tumor reemergence, as well as glioblastoma research in general.  As we say on the Fund’s page:

We were told after [Rebecca’s] first tumor was biopsied that if another tumor appeared, all we could do was watch her die. There were no studies to try to prevent the reoccurrence of the tumor. Once it did recur, there were very limited study options, none of which were life saving—only life prolonging. This is typical of so many types of tumors.

You cannot imagine, unless you’ve lived it, what it’s like to know that your child has a rapidly deteriorating terminal condition about which nothing can be done.  There are no words to describe it.  “Helpless” doesn’t begin to come close.  We hope that Rebecca’s Fund can, in whatever way, however small, help even one family avoid that nightmare.  We hope it can help many, many families avoid it.

You can donate directly to Rebecca’s Fund if you prefer, but please note that all funds raised for the March 15th Cleveland Heights event will be counted as part Rebecca’s Fund.  So please, if you’re inclined to support the Fund, donate to one or all of Rebecca’s friends listed above, because donating to them means donating to the Fund as well.  Thank you.

The Widening Gulf

So many people who knew Rebecca told us how they had to hold back tears, watching the Super Bowl halftime show.  “I wish Rebecca could have seen it,” they say.  “When Katy Perry sang ‘Firework’, all I could think is how much Rebecca would have loved it.”

Rebecca loved Katy Perry songs, you see.  She loved to sing and dance to “Firework”, so much so that her sister Carolyn made it part of the medley she arranged and performed at Rebecca’s funeral.  And Rebecca loved to sing “Roar”, and pretty much anything from Katy Perry.  Even “Brave”, which is actually sung by Sara Bareilles, but when your terminally ill daughter tells you a song is by Katy Perry, then it’s by Katy Perry.

But all I can think is, I wish I could be so sure.

Because yes, five-year-old-going-on-six Rebecca loved Katy Perry, and Frozen, and hula hoops, and so many more things.  But by now she’d be six-and-two-thirds, and so much can change so fast at that age.  By now, maybe she’d have moved on to Taylor Swift, and Katy Perry would be so last year.  She might be done with Frozen, and instead be into Big Hero Six or The Emperor’s New Groove.

I know that she would be different by now, just as amazing as ever, but different.  Some enthusiasms would have given way to others; her interests would have shifted.  How, we don’t know.  Can never know.

Every day, she becomes a little more distant from us, a little less known.  A gulf slowly widens with the passing of time, and what she would be now becomes ever more uncertain.  We become estranged from our own daughter, not by hurtful words or actions, but by the merciless passage of time, by the choices she never got to make, the changes she never experienced.

I knew that this would come, but for a time I could ignore it.  A month or two after she died, I could still pretend that I knew how she would react, what she would think, how she would behave.  Even though I never knew that with any certainty.  She was never so predictable as that.  Never so static.

Now it’s been too long.

And it hurts, knowing that I can never know the girl she would be now, never know the girl she would have become, never know the woman she would have been.

I miss her, sometimes more than I ever thought possible, so much that I can physically feel the absence.  But sometimes I think what I miss more than the Rebecca I knew is the Rebecca I never got to know.

Inadvertent Algorithmic Cruelty

I didn’t go looking for grief this afternoon, but it found me anyway, and I have designers and programmers to thank for it.  In this case, the designers and programmers are somewhere at Facebook.

I know they’re probably pretty proud of the work that went into the “Year in Review” app they designed and developed, and deservedly so—a lot of people have used it to share the highlights of their years.  Knowing what kind of year I’d had, though, I avoided making one of my own.  I kept seeing them pop up in my feed, created by others, almost all of them with the default caption, “It’s been a great year! Thanks for being a part of it.”  Which was, by itself, jarring enough, the idea that any year I was part of could be described as great.

Still, they were easy enough to pass over, and I did.  Until today, when I got this in my feed, exhorting me to create one of my own.  “Eric, here’s what your year looked like!”

image

A picture of my daughter, who is dead.  Who died this year.

Yes, my year looked like that.  True enough.  My year looked like the now-absent face of my little girl.  It was still unkind to remind me so forcefully.

And I know, of course, that this is not a deliberate assault.  This inadvertent algorithmic cruelty is the result of code that works in the overwhelming majority of cases, reminding people of the awesomeness of their years, showing them selfies at a party or whale spouts from sailing boats or the marina outside their vacation house.

But for those of us who lived through the death of loved ones, or spent extended time in the hospital, or were hit by divorce or losing a job or any one of a hundred crises, we might not want another look at this past year.

To show me Rebecca’s face and say “Here’s what your year looked like!” is jarring.  It feels wrong, and coming from an actual person, it would be wrong.  Coming from code, it’s just unfortunate.  These are hard, hard problems.  It isn’t easy to programmatically figure out if a picture has a ton of Likes because it’s hilarious, astounding, or heartbreaking.

Algorithms are essentially thoughtless.  They model certain decision flows, but once you run them, no more thought occurs.  To call a person “thoughtless” is usually considered a slight, or an outright insult; and yet, we unleash so many literally thoughtless processes on our users, on our lives, on ourselves.

Where the human aspect fell short, at least with Facebook, was in not providing a way to opt out.  The Year in Review ad keeps coming up in my feed, rotating through different fun-and-fabulous backgrounds, as if celebrating a death, and there is no obvious way to stop it.  Yes, there’s the drop-down that lets me hide it, but knowing that is practically insider knowledge.  How many people don’t know about it?  Way more than you think.

This is another aspect of designing for crisis, or maybe a better term is empathetic design.  In creating this Year in Review app, there wasn’t enough thought given to cases like mine, or friends of Chloe, or anyone who had a bad year.  The design is for the ideal user, the happy, upbeat, good-life user.  It doesn’t take other use cases into account.

Just to pick two obvious fixes: first, don’t pre-fill a picture until you’re sure the user actually wants to see pictures from their year.  And second, instead of pushing the app at people, maybe ask them if they’d like to try a preview—just a simple yes or no.  If they say no, ask if they want to be asked again later, or never again.  And then, of course, honor their choices.

It may not be possible to reliably pre-detect whether a person wants to see their year in review, but it’s not at all hard to ask politely—empathetically—if it’s something they want.  That’s an easily-solvable problem.  Had the app been designed with worst-case scenarios in mind, it probably would have been.

If I could fix one thing about our industry, just one thing, it would be that: to increase awareness of and consideration for the failure modes, the edge cases, the worst-case scenarios.  And so I will try.


Note: There is a followup to this post that clarifies my original intent, among other things.

A slightly revised and updated version of this post was published at Slate.

Six Months, Ten Seconds

Six months ago today, our child died in our arms.

I still have trouble believing this.  Kat and I both still have trouble.  But only on occasion, these days, and not for long.  As someone once said, when it comes to the death of a loved one, you don’t get over it, but you do, eventually, if you allow yourself, get used to it.  We’re slowly getting used to it.

Half a year.  It seems like it’s been forever, as if uncountable years have passed since Rebecca died, and yet there are still so many traces and impressions of her that sometimes it seems as if she was only just here.  We struggle, sometimes, to decide what to preserve and what to let go.  We had to force ourselves to put the few boxes of mementoes we’ve kept into storage this past week.  It felt like we were consigning Rebecca to the attic, which doesn’t seem like much when you think about it, but it was in some ways as difficult as consigning her remains to the earth.  For that matter, we were recently making some changes to the family picture wall, and for each picture of Rebecca, we had to ask if it should stay up or come down.  None of those choices were easy, even after half a year.

Of course, half a year is less time than elapsed between her diagnosis and her death.  I remember so much, and so little, of those months.  But this is unremarkable, given that we remember so little of our regular lives.  (Think about yesterday, or of last Friday.  How much of the day do you actually remember?  How many of those several thousand minutes can you no longer recall with clarity?  Now, what else have you forgotten?)

We have thousands upon thousands of images of Rebecca; just in my iPhoto library alone, there are 10,188 photos tagged with her name, 1,624 of which I flagged or rated five stars (or both), 785 of which are on Flickr.  Kat has thousands more, as do so many of our friends and relatives.  Those pictures can take us back, clarify our memories, or remind us of some aspect of her personality.  Myriad facets of a life so short, and yet so fully lived.

Videos are far more rare—the Flickr album has just three—mostly because I greatly dislike shooting video.  In the end, it didn’t matter.  Our friend Jessica captured a video that is the quintessential Rebecca, a near-perfect distillation of Rebecca’s personality in just under ten seconds—all her sass ‘n’ spice, and all her sweetness too.


(Full transcript available at flickr.com.)

Rebecca Alison Meyer, ladies and gentlemen.  How I wish you could have known her as we did.

I laugh every time I watch that video.  Every time.

Indescribable

A thing they don’t tell you before your child dies, because nobody who knows this would go around proclaiming it unprompted (except, apparently, me) and nobody who doesn’t face this situation would ever think to ask and probably nobody who does face this situation has the meta-awareness to go asking after the truth that they will all too soon have to inhabit, is that the pain of it does not consume you like nuclear fire and leave you a hollow, broken, still-burning shell of ash.

Not continuously, anyway.

It does do that sometimes, much more often in the beginning after the end, but that begins after a while to subside and the moments of overwhelming anguish slowly grow farther and farther apart.

After a while, you don’t even hurt continuously, let alone feel what seems like an endless torment.  There are periods of waking time, seconds or minutes or maybe even an hour or two, where you don’t actively remember your child is gone forever, when you aren’t focused on that ungraspable fact.  The intervals grow slowly, over time.  Because humans can get used to pretty much anything.

The grief remains indescribable, but the nature of its indescribability changes.  At first, it is so vast and deep and overwhelming that trying to grasp it is like trying to understand the true size of a galaxy.  Those are the moments of fire and ash, when an unexpected, vivid memory or sharp regret brings you to a sudden, blinded stop.

You try not to have them while driving.

Between those moments, the grief is still there, but different.  It’s not there in strength every microsecond of every day; it comes and goes.  There are times you can put it aside for a while, to concentrate on a demanding task or play with your surviving children or watch a brainless movie.  When you become aware of the grief again, it’s surreal and confusing.  It’s like trying to understand the true shape and texture of a six-dimensional whale.  Even if you could, there’s no way to describe it in words so that someone else can understand.

In those moments of greater awareness, the surreal nature of the grief makes the entire world, your entire being, feel wrong.  It warps you and everything you perceive.  A previously energetic and focused person can become listless and disoriented, or a fidgety, easily-distracted person can become still and quiet.  Anger comes flaring out in strange directions, over stranger reasons.

Recognizing this is difficult, and counteracting it is doubly so.  Recovering from it is a long process, the end of which I have not even glimpsed.  I can imagine it in some detail, I know which general direction to go to get there, but I cannot yet see it.  It is either too far away, or too obscured by the warping effects of the grief.  I don’t know which.  It could well be both.

But this is why I seem to check out, from time to time.  I’m not actually going through an internal hell of pain and torment when I do, which is what I suspect other people suspect.  Instead, I’m trying to come to some understanding of the extradimensional horror that always hovers nearby, sometimes right in front of me and other times just out of sight, hoping that if I can somehow comprehend it in its entirety, it will finally go away and allow me to be happy that she lived instead of sad that she died.

Divergence

Being here, in the same vacation spot we were last year when Rebecca fell ill, wasn’t as difficult as I thought it would be… until last Friday, August 15th, the first anniversary of her seizures and life flight to CHOP.

That night, the next day, and the days since were much more difficult for me, as we moved through the anniversaries of her first and second surgeries.  Today is the anniversary of the third, when they implanted the drainage tube that probably kept her functional and complete until the last few days of her life.

These days have been so difficult because I’ve been experiencing what I’ve come to refer to as “divergence stress”.  I feel as though last year’s August and this year’s are running in parallel, branching from this past Friday.  I am here, sitting in our rental, looking at the beach and the ocean waves, and feel as though another of me is up in Philadelphia, gaunt and teary-eyed in a dim intensive care ward and hoping against hope that our daughter will survive, while I sit in sunshine and luxury, wondering why I am not with my little girl who so desperately needs me right now, who I so desperately want to hold and talk with again.

Or worse, that another me isn’t up in Philadelphia, but Rebecca still is, lying unconscious and alone in the intensive care unit.  As though the loop has restarted, but I have stepped out of it, abandoning my baby to her cancer.

I know this isn’t the truth.  She is not there.  We are not there.  We are here, now, and she is not.

But someone else, right now, as you read this, is there.  Another family is assembling around a PICU bed, surrounding their child and hoping against hope and sick, choking fear that their beloved will survive.  Maybe they will.  Many do.

That family, and all the families still to come, need research to give their children a better chance to live.  Many of them will need a place to stay while their child endures weeks or months of surgeries and treatments, just as we did.

To that end, our friends Nancy Massey and Kimberly Blessing have launched a fundraiser with two aims.  The first is to support research into pediatric brain cancer.  The second is to sponsor a room at the Philadelphia Ronald McDonald House for a year.  The $10,000 fundraising goal will allow both.  Going beyond that goal will make it possible to support even more research.

It’s not much to make sure those other families have a welcoming place to stay and a better chance at continued life than we did.  If you can, please make a contribution.

One Year

Exactly one year ago, in the emergency department of Cape Regional Medical Center, Rebecca had the first of her seizures, and our nightmare began.

Now we are back in the same place for our annual family vacation.  The same resort, the same building, even the same floor, though not the same room.  We go to the beach, we swim in the pools, we play games on the boardwalk.  All the things Rebecca loved to do.  In fact, her first wish with Make-A-Wish was not to go to Disney World.  Her wish was that it be summer so she could come back to New Jersey and do all those things.  Disney was a distant runner-up, a sort of consolation prize for not being able to do what she really wanted to do.

Even as we organized for that Disney trip, Kat and I decided to bring the family to New Jersey for an early vacation, if Rebecca was well enough once June finally came.  And then to come again in August, unless Rebecca was still alive but too sick to make the journey.  Neither came to pass.

Instead, we’re here without her.  I had feared this would be too painful for us to bear, but it isn’t.  New memories are being made with our children, and if sometimes Kat and I are drawn up short by a specific memory, or a wish that Rebecca were here to enjoy the trip with us, or just having the instinct to count three heads before realizing that we only have to count two, it is usually a wistful sorrow rather than a sharp agony.  Usually.

Those newly-made memories, of jumping waves and digging holes in the sand and boardwalk ice cream and going to water parks, are the building blocks of healing.  Forming them in the place that Rebecca loved so much is, we hope, the mortar that will glue them together.  It helps that we love it here too, and that love is limned by the memory of her love.

It all still seems unreal.  Our lives were proceeding as lives do, and then, in the middle of our special family time away, we were suddenly confronted with the horror that our middle child, our five-year-old girl, had a tumor in the middle of her brain.

I remember all the shock and terror and anguish, but not like it was yesterday, because it wasn’t.  It was a year ago today.

May 2015
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