Posts in the Rebecca Category

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!”

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.

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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.

• Inadvertent Algorithmic Cruelty was published on Wednesday, December 24th, 2014.
• It was assigned to the Rebecca and Web categories.
• There have been two hundred seventy-four replies.

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.

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.

• Six Months, Ten Seconds was published on Sunday, December 7th, 2014.
• It was assigned to the Cancer, General, and Rebecca categories.
• There have been thirteen replies.

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.

• Indescribable was published on Monday, September 8th, 2014.
• It was assigned to the Cancer, Observations, Personal, and Rebecca categories.
• There have been eleven replies.

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.

• Divergence was published on Wednesday, August 20th, 2014.
• It was assigned to the Cancer, General, and Rebecca categories.
• There have been two replies.

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.

• One Year was published on Friday, August 15th, 2014.
• It was assigned to the Cancer and Rebecca categories.
• There have been seven replies.

Every day or three, I upload another batch of photos to Flickr, trying to work my way through the backlog and get caught up with the present.  This is a habit I enforce inconsistently, because I’m bad at maintaining regular habits even at the best of times.  That halfway explains the backlog.  When I do enforce it, my habit is to upload no more than 10 or 15 photos at a time, so that I can properly tag and geolocate them without having to invest hours in the process.  That explains the other half of the backlog.  Right now, as I write this, I’m about six weeks behind.

Which means that yesterday, I uploaded the first half of the pictures from Rebecca’s sixth birthday party.  It’s been over five weeks now since she died, but in the Flickrverse, she still has six days to live.  She’s still tired but essentially herself, riding the Rocket Car and eating mini-donuts and chasing bubbles and hula hooping and blowing out the candles on her half of the enormous Frozen-themed cake shared with Ruth, her best friend in the whole world, the girl who shares her initials and whose birthday is only a few days apart from hers.

She still doesn’t know, none of us know, that the experimental medicine has failed and the tumor has been growing unchecked for weeks, compressing normal brain matter and now only days away from killing her.  Just two days after her birthday party, an MRI will reveal the horrible truth, but in the Flickrverse, that day has not yet come.

Flickr and my laptop combine to become a digital slow glass, bathing me in the light of days past.  I look at those pictures, tag them, adorn them with metadata, sort some into albums, and all the while I remember how we felt that day.  We were worried, Kat and I, but we still had hope.  Everyone there still hoped that she’d find a way to survive, and that hope was not unreasonable.

And so the party was not a wake for a still-living child, but a joyful celebration of her life and the simple fact that she’d lived long enough and well enough to enjoy the party.  There had been times in the previous few weeks that we’d thought she wouldn’t make it that far.  Had we held the party six days later, on her actual birthday, as originally planned, she wouldn’t have.

We didn’t know that then, but I know that now.  As I witness those days past, trying to taste some trace of what life was like then, I also have the horrible foreknowledge of what will happen in the days to come.  I know without question that the MRI will happen, that the news will be dire.  That she will sink into herself and lose so much of what we fought so hard to preserve, and that it will be lost quickly, in the span of a few days.  That we will believe she is leaving us the day before she actually does, and be surprised when she wakes and has a semi-normal evening, believing when that happens that she has a week or two left.  That the next day, the week will end with her actual birthday, the day that shatters us, the day she dies.

Today or tomorrow, I’ll upload the second half of the party photos, and her birthday party will once more be over and that final week will once more begin.  I could stop there, just walk away from uploading forever, and a large part of me cries out to do exactly that — but doing so would arrest more than just the glacially slow expansion of my Flickr account.  If I allow myself to stop there, arrested in the days when we could still feel hope, it will be that much harder to reconcile the past and present.  Without that reconciliation, it is very likely I will never feel hope again.

For myself and my future, the future we were unable to bring her into but must inhabit anyway, I have to keep going.  I have to upload the photos of that last week, relive the horror and anguish, the moments I captured as well as the moments I didn’t but will never be able to forget.  I have to let her go again.

And so the light keeps coming through the slow glass we’ve built, emerging from distributed panes aglow with the light of other days, pushing closer and closer to the unwelcome present.

• The Light of Other Days was published on Monday, July 14th, 2014.
• It was assigned to the Cancer, Rebecca, and Web categories.
• There have been twenty replies.

One month ago today, just thirty days past, Kat and I held our daughter as she took her last breaths.

I still have trouble accepting this.  We both still have trouble.

Kat says that she often feels like none of this is really happening, that she’s stuck in a nightmare about Rebecca, who is alive and fine and never had cancer.  Sometimes she thinks that Rebecca’s just spending the day with a friend, and we’ll see her for dinner.  She knows this is untrue, but that knowledge doesn’t change the feeling.

I have the opposite problem.  Sometimes I feel like she never really existed, that we’ve only ever had two children and I just had an involved dream about a little girl who lived between our daughter and son.  As if she were a sprite who let us see what our lives would have been like with three children instead of two, and then vanished with the sunrise.  Sometimes I expect to look at the family photos on the living room wall and not see her in them.

But of course she was real.  Imprints of her life are built into the very structure of our lives.  The expansion of the house itself, undertaken to accommodate the three children we realized we wanted instead of the two we always thought we’d have.  Five coat cubbies in the back hallway, instead of four.  Five bar stools at the kitchen island.  The bedroom adorned with castles and clouds and rainbows and fancy princess dresses, a pink painted sky above purple painted hills, a purple fairy canopy over the bed and a cross-stiched birth announcement on the wall, the bedroom where she died, its door now an unadorned white and almost always closed, at least for a while.

A lot of the grief I have yet to really deal with is bound up in her last day, her sixth birthday.  I remember so many things about that day that I wish I could erase, and those are the things I need to deal with.  There are three things in particular that are particularly painful, most of all the moments her body gave out and she physically died.  Twice.  Even though she was gone well before either of those moments, they are still, to me, the moments of her death, and I still can’t shake that impression.

The other two things I’m not ready to allude to, let alone describe, even to myself.  I’ll know I’ve made some progress when I’m ready to write a chronicle of that day.  I may never show it to anyone but me, but I have to write it, have to create a structure where I can store some of my sorrow and receive some measure of peace.

Some day.  Not today.

Today it’s been a month since she died.  One month.  Measured by the weight of my grief, it feels like it’s been a lifetime or more; but measured by the progress I’ve made in dealing with my grief, it feels like it’s been no time at all.

• One Month was published on Monday, July 7th, 2014.
• It was assigned to the Cancer and Rebecca categories.
• There have been twenty-two replies.

There is a sound a family makes that only its members can truly appreciate.  The interplay of voices, footfalls, laughter, sobbing, shrieks of joy and frustration and anger, songs sung, catchphrases, the rattle and chirp of beloved toys played with, doors slamming, the rustling of clothing and whispers of breathing, running water and bath splashes and teeth brushed.  The aural fabric of lives entwined.  It forms a curtain around you, altering your perceptions of the world.  It becomes the world.

You feel it, usually half-consciously, but if you stop and listen with purpose, you can actively hear it and savor it and know that the world is right, secure and content inside the cocoon it weaves.  It’s not a symphony, it’s nothing so organized and artificial and remote as that, but sure, yes, call it a symphony, because words like “texture” and “landscape” are even more misleading.

And now a whole section has been silenced.  Not simply resting, not waiting to rejoin the piece, but utterly removed from the stage.  Vanished forever.

I cannot describe how utterly wrong that feels.  Everything feels wrong, sounds wrong, every instinct is scraped on edge, screaming danger, because something has gone fundamentally, horribly wrong and I must fix it.  And I can’t fix it.  It can never be fixed, not by anyone.  Someone is missing and will never be found, no matter how many times we look; can never be replaced, no matter what we might do to try.

There is a silent hole in the world, and the best I can ever hope to do is train my ear not to hear it, most of the time.  Find a way to hear around the void and let what’s left fill my ears.  If I am lucky and work very hard at it, I can learn to appreciate the symphony for what it is, and not constantly obsess over what it once was and should still be.

• The Silent Hole in the World was published on Thursday, June 26th, 2014.
• It was assigned to the Parenting and Rebecca categories.
• There have been eleven replies.