Posts from May 2015

It was the end-of-the-school-year picnic at the local elementary school, and we were invited.  Not because we have any students there right now, but because it was Rebecca’s school, and the PTA was set to dedicate a Little Free Library in honor of her and Trishka Tantanella-Holcomb, another student who died in 2014, a few months before Rebecca.

There were some words spoken, readings read, and then the Library unveiled.  I shook the hand of Trishka’s mother, expressing my condolences, and then I found myself locked in an embrace with Trishka’s father, taller than me, his breath hitching.

“I know,” I said.  “I know.”

He sobbed in my ear, quietly, despondently.  We stood back a step.

“Every day,” I said, looking into his eyes, my throat tight.

He shakily held up a finger.  “Not… not one day,” he ground out.

We turned to look at the new Library, adorned with the names of our little girls, hands on each other’s shoulders.  Kids and adults alike were putting in books they had brought to contribute, one after another.  Someone decided they’d had enough of the raucous pile of books, and started standing them on their ends, sorted by size.  I could imagine Rebecca saying, “Aw, boo!” in the casual, lighthearted way she liked to say it.  Expressing her disapproval, but without any heat to it.

A storm was moving in, so the crowd scattered back to their homes as a few of us quickly broke down the tables and sound equipment to move them inside.  The storm arrived just as we finished, filling the now-empty playground with curtains of rain, racing with the wind.  A minor lake immediately began to form as the playground’s storm drain was overwhelmed by the outpouring.  I thought about the video Kat had taken of Rebecca and her best friend Ruthie playing in another such lake, a little more than a year before, splashing and laughing as they poured water out of their rain boots.

As quickly as it had broken, the storm was over, the rain trailing off to a minor sprinkle.  I looked at the clouds to the west, realized what was about to happen, and fished my iPhone out of my pocket as I turned around.

“Get the kids outside,” I told Kat, who’d gone home with them ahead of the storm.  “There’s going to be a rainbow.”

I waited.  But not for long.  It slowly coalesced over the school, the first full-spectrum, full-arc rainbow I’d seen since a few months before Rebecca’s death.

She loved rainbows.

I wish so many things, all of them pointlessly, but one of the most piercing is that I wish I’d thought to make a rainbow for her while there was still time.  All it would have taken was a late afternoon and a garden hose, sprayed from the porch roof; all it would have taken was for me to break free of myself just long enough to think of it.  Just one more rainbow, just for her, just to see her eyes widen and her mouth arc upward in delight.

• Into Each Life was published on Sunday, May 31st, 2015.
• It was assigned to the Parenting and Rebecca categories.
• There have been four replies.

Yesterday was the eleven-month anniversary of Rebecca’s death.  I’ve been trying not to focus on those monthly anniversaries, but this one stuck out for me.  Because in a month — thirty days, as I write this — it will be both the first anniversary of her death, and the day she would have turned seven.

I haven’t really written directly about the grieving process since late March, because it’s been in a stable pattern and nothing has really changed.  Kat and I still grapple on occasion with the question of whether this is a nightmare or a post-dream.  Are we having a nightmare that our daughter died, and we’ll finally wake up; or did we dream that we had a middle daughter, and have since woken up?  Of course neither is true.  She came to us, and grew, and died.  It’s just so hard to come to peace or acceptance or even just comprehension that the mind hunts for an escape hatch, some way of making some part of it not true.

Don’t take this as intimation that we spend every waking second in agony, paralyzed by grief and shock.  Those periods of irreality and escape-seeking are just that: periods of time.  Not all the time.  Most of each day, I function normally, and honestly don’t think about what happened.  There’s work to do, projects to start or complete, errands to run, books to read, kids to raise.  These things all take precedence in their own ways, and Kat and I are both committed to being as present as possible in our lives.  We don’t deny what happened, but we don’t fetishize it, either.  Life cannot stop because a life stopped.  It’s not how either of us could live, even for ourselves, and we have more than ourselves to consider.

Some days are more difficult than others, of course, but for whom is that not true?  We all get through life one day at a time.

One of the things that has really helped us as a family, and Kat and me as parents, has been to go on family vacations.  Some went better than others. A short trip we took to Amish Country in late July of 2014 was probably too soon.  Our annual August trip to New Jersey, coming as it did on the first anniversary of Rebecca falling ill, was both helpful and difficult; and maybe the difficulty was part of what made it helpful.  The trip we took to Gatlinburg/Pigeon Forge just after Christmas was just about right, in terms of timing, and was definitely a huge boost to us emotionally.

These escapes from the normal routine of home and calendar, where we could just concentrate on being together and doing things together and not having any particular demands on us, were incredibly helpful to the healing process.  Friends told us after our trips that we seemed more relaxed, less haunted.  The time we spent together helped us figure out how to be a new family, without all the distractions and chores of everyday life.

The other thing that Kat and I in particular appreciated about our trips is how we could make Carolyn and Joshua the center of the experience.  When Rebecca was being treated, and then when she was dying, we did what we could to make Carolyn and Joshua feel not marginalized, but there was no way to avoid it.  Mommy and Daddy went on a two-month trip to Philadelphia with Rebecca, not them.  We went with her to the hospital, not them.  We worried about her temperature and bruising level and energy, not theirs.  People made banners and posters and cards and healing stars for Rebecca, not them.  Friends and family came to see us because of Rebecca’s cancer, not because of them.  Make-A-Wish granted Rebecca’s wish, not theirs.  People came to pay respects to the memory of Rebecca’s life, not the ongoing reality of their lives.

How could they not feel marginalized?

Kat and I worried about this all the way through, guided to some degree by the insights I had from my own childhood, and tried to counter it as best we could.  Kat went on theater dates with Carolyn, and lunch dates with Joshua.  I played games they liked, and took them to parties.  Regardless, they knew what weighed most on our minds, and we never tried to deceive them or tell them they were wrong.

But those trips, after Rebecca was dead, could be all about them.  They were central again.  We went to the Jersey shore, and did old favorite activities as well as tried new things.  We went to Disney and granted their wishes as best we could, getting them to special character events and letting them stay up to watch the fireworks.  We took them to the museums and shops and ski slopes in Gatlinburg and Pigeon Forge, picking the things they wanted to try out.  We made them feel special again.

You can’t imagine how great a gift that is, both for them and for us, unless you’ve been through this yourself.

That’s a gift that Kat and our good friend Karla want to give to families who are going through this.

That’s why, a week ago today, they launched Rebecca’s Gift, a 501(c)(3) non-profit dedicated to providing healing family vacations after the death of a child.  Rebecca’s Gift is accepting donations in support of that mission, and has its first fundraiser scheduled for this November.

Their goal is to raise enough money to send two or three families on healing trips in the summer of 2016; that is, summer of next year.  At first, the scope of Rebecca’s Gift will be narrow by necessity: eligible families will be those who had a child die of cancer between six and 24 months before the trip is taken, and who have surviving children age 18 or younger.  Rebecca’s Gift will work with partner organizations to identify families who need this support.  They don’t plan to take on anything more ambitious than that to start, in order to make sure those first trips are everything they can be.

As for the future, we’ll see.  The hope is that this will one day be open to more than a few families per year, open to families whose child died from something other than cancer, and perhaps open to parents who have no other children.  If Rebecca’s Gift grows strong enough to do those things, then I feel confident they will.  Those are all questions for the future.  For now, they’re focused on making sure they can help families who need the same time away to reconnect, rebuild, and relax.  Even if it’s just for a few days.

If you can help, I know your support will be welcome.

• Rebecca’s Gift was published on Friday, May 8th, 2015.
• It was assigned to the General and Personal categories.
• There have been three replies.

Over the weekend, I published “Time and Emotion” on The Pastry Box, in which I pondered the way we’re creating the data that the data-miners of the future will use to (literally) thoughtlessly construct emotional minefields — if we don’t work to turn away from that outcome.

The way I introduced the topic was by noting the calendar coincidence of the Star Wars-themed tradition of “May the Fourth be with you” and the anniversary of the Kent State shootings in 1970, and how I observe the latter while most of the internet celebrates the former: by tweeting some song lyrics with a relevant hashtag, #maythe4th.  I did as I said I would…and Twitter blindly added a layer of commentary with a very simple little content filter.  On twitter.com and in the official Twitter app, a little Stormtrooper helmet was inserted after the hashtag #maythe4th.

So let’s review: I tweeted in remembrance of a group of National Guardsmen firing into a crowd of college students, wounding nine and killing four.  After the date hashtag, there appeared a Stormtrooper icon.  To someone who came into it cold, that could easily read as a particularly tasteless joke-slash-attack, equating the Guardsmen with a Nazi paramilitary group by way of Star Wars reference.  While some might agree with that characterization, it was not my intent.  The meaning of what I wrote was altered by an unthinking algorithm.  It imposed on me a rhetorical position that I do not hold.

In a like vein, Thijs Reijgersberg pointed out that May 4th is Remembrance of the Dead Day in the Netherlands, an occasion to honor those who died in conflict since the outbreak of World War II.  He did so on Twitter, using the same hashtag I had, and again got a Stormtrooper helmet inserted into his tweet.  A Stormtrooper as part of a tweet about the Dutch remembrance of their war dead from World War II on.  That’s…troublesome.

Michael Wiik, following on our observations, took it all one step further by tweeting a number of historical events collected from Wikipedia.  I know several of my British chums would heartily agree with the 1979 tweet’s added layer of commentary, but there are others who might well feel enraged and disgusted.  That could include someone who tweets about the election in celebration, the way people sometimes do about their heroes.

But what about appending a Stormtrooper helment to an observance of the liberation of the Neuengamme concentration camp in 1945?  For that matter, suppose someone tweets May-4th birthday congratulations to a Holocaust survivor, or the child of a Holocaust survivor?  The descendant of a Holocaust victim?

You might think that this is all a bit much, because all you have to do is avoid using the hashtag, or Twitter altogether.  Those are solutions, but they’re not very useful solutions.  They require humans to alter their behavior to accommodate code, rather than expecting code to accommodate humans; and furthermore, they require that humans have foreknowledge.  I didn’t know the hashtag would get an emoji before I did it.  And, because it only shows up in some methods of accessing Twitter, there’s every chance I wouldn’t have known it was there, had I not used twitter.com to post.  Can you imagine if someone sent a tweet out, found themselves attacked for tweeting in poor taste, and couldn’t even see what was upsetting people?

And, as it happens, even #may4th wasn’t safe from being hashflagged, as Twitter calls it, though that was different: it got a yellow droid’s top dome (I assume BB-8) rather than a Stormtrooper helmet.  The droid doesn’t have nearly the same historical baggage (yet), but it still risks making a user look like they’re being mocking or silly in a situation where the opposite was intended.  If they tagged a remembrance of the 2007 destruction of Greensburg, Kansas with #may4th, for example.

For me, it was a deeply surreal way to make the one of the points I’d been talking about in my Pastry Box article.  We’re designing processes that alter people’s intended meaning by altering content and thus adding unwanted context, code that throws pieces of data together without awareness of meaning and intent, code that will synthesize emotional environments effectively at random.  Emergent patterns are happening entirely outside our control, and we’re not even thinking about the ways we thoughtlessly cede that control.  We’re like toddlers throwing tinted drinking glasses on the floor to see the pretty sparkles, not thinking about how the resulting beauty might slice someone’s foot open.

We don’t need to stop writing code.  We do need to start thinking.

• Warning Hashflags was published on Tuesday, May 5th, 2015.
• It was assigned to the Culture, Observations, Politics, Tech, and Web categories.
• There have been eight replies.

This coming Monday, as has become tradition, a significant fraction of the Twitter user base will send out Star-Wars-themed tweets tagged #maythe4th or #maythefourthbewithyou, because saying the day in that way makes for a handy bit of wordplay.  There will be cosplay pictures, Yoda-esque inversions of sentence structure, and probably (this year) a fair bit of squeeing about the upcoming sequel and its brilliantly fan-service trailer.

Also this coming Monday, as has become tradition for me, I will send out a tweet containing the opening lines of “Ohio” by Crosby, Stills, Nash & Young, tagged #maythe4th, because it was on May 4th, 1970 that National Guardsmen fired a volley into a crowd of Kent State college students, wounding nine and killing four.

Anniversaries are potent psychological markers.  We reflect on historical events, both global and personal, that have particular meaning to us.  We celebrate the days of our birth, of first meeting our loved ones, of all manner of wonderful life-changing moments.  We mourn the days of our losses, of our betrayals, of all manner of terrible life-changing moments.  In every heart, a secret calendar.

There are only so many days in the year; pile enough things together on a calendar, and some of them will coincide.  Some of those alignments will coalesce into rays of remembered joy, warming us from the past.  Others will form spears of relived pain, lodging afresh in our hearts.  A few may do both, comforting and piercing all at once.

The longer we spend online, the more traces of those secret calendars will take public shape.  The dates of my first marriage and divorce are not, to the best of my recollection, recorded anywhere online, but the date of my second (and current) marriage is there, thanks to some early blog posts.  The date of my first professional award is there.  The dates of our children’s placements and adoptions are there.  The dates of my daughter’s illness and death are there.

The more we build online networks, not physical networks but social and emotional networks, the more pieces we leave lying around for algorithms to gather together and present to us with no real thought for what those pieces actually mean, or for how they should or shouldn’t fit together.  A human can glance through a pile of photos and tell which are emotionally or even narratively out of place.  Code cannot.  A human can quickly determine which scraps of text and pixels were happy at the moment of their creation, only to be transformed into talismans of sorrow by later events.  Code cannot.

We’re collectively creating strata of data, adorned with easy bits of metadata like time and date and sometimes place, but lacking all the truly important metadata like feeling and meaning.  As we share with each other, we share with the future.  We share with the companies that help us share with each other, because it’s easy to store it all.  Content in the old network was ephemeral, and in the older networks was tangible but private.  In the new networks, everything we create is easy to retrieve — if not for us, as users of the network, then at least for the code that runs on the same machines which accept all that we share.

And so, more and more with every passing day, code is written to reach back into everything we’ve created, assembling it along easily-identified axes like Likes or Faves or geographic coordinates or the day of the year, in order to show it to us again.  Sometimes it’s code we invite into our lives, but not always.  Sometimes we find the code that drives the networks we use resurrecting our past without warning.

This will not always be welcome.

There are things we can do to make our remorselessly remembering routines more humane, and most of those things are rooted in experience design.  We can design compassionate consent requests ahead of introducing new functionality, and easy ways to mark which dates and memories and bits of data should be avoided, and even design thoughtful expressions of remorse and apology.  We can and should add this very human layer of thoughtfulness to cushion us from literally unthinking code that yields results which may harm as easily as they may heal.

It won’t be easy, and we’ll make mistakes no matter how hard we try.  Our very attempts to be thoughtful may backfire and make things worse, but we’ll learn from those mistakes and do better the next time.

Nothing could be more human than that.

This article was originally published at The Pastry Box Project on 2 May 2015.

• Time and Emotion was published on Saturday, May 2nd, 2015.
• It was assigned to the Commentary, Culture, Tech, and Writing categories.
• There have been no replies.