Posts from March 2015

Earlier today, Facebook announced a new feature called “On This Day”.  With On This Day, you see pictures, posts, and other events that occurred on a given day.  If you’re familiar with Timehop, it seems very much like a Facebook-only Timehop.  That will probably seem limited and broken to actual Timehop users, but for the vast majority of Facebook users, it will be a new and potentially very welcome feature.

As you can imagine, given what happened with Year in Review, I’m very interested by On This Day.  I haven’t interacted with the actual product yet, so I don’t know what kinds of opt-in or opt-out features will be present.  If any.  From the screenshots in the Facebook announcement, it looks like they’ve taken a much more neutral direction with the visual design.  There are calendar pages and abstract photos, with few of them expressing much in the way of emotional content.  An exception is seen at the top center of the banner image on the announcement, depicting what appears to be a woman in love, but that’s actually a decoration on the banner, instead of a UI component.  Whether those sorts of things will show up in the UI, I don’t know.

But this is what I wonder: is Facebook about to hurt a bunch of people?  From the announcement:

To see your On This Day page, you can click on the On This Day bookmark, search for “On This Day,” or visit facebook.com/onthisday. You might also see a story in your News Feed.

Putting “a story in the News Feed” is exactly how Year in Review became a viral news story.  And it’s what distinguishes On This Day from Timehop or ThinkUp (which has “your most popular update” features).

If I install Timehop, for example, I know what I’m getting into.  I’m actively, consciously deciding to revisit events from past years by way of Timehop.  I can decide not to launch it at all on certain days, if I know what I see would be too painful.

On This Day, on the other hand, is part of an existing ecosystem.  Dropping On This Day into the Facebook news feed without consent is very much like having Timehop install itself onto your smartphone and then auto-launch, all without asking.  If this happened, we’d (rightly) take the responsible parties to task.  Patronizing dismissals that “you use a smartphone, you get what you deserve” would be relatively thin on the ground, whereas I’m sure there will be plenty of that directed toward any Facebook user upset by what an On This Day new feed entry shows them.  That was certainly the leading line of condescension around the Year in Review news feed post.

There isn’t much more to go on in the announcement, though I did notice:

…you can choose to subscribe to notifications so you’ll be alerted when you have memories to look back on. You can also edit and delete old posts, or decide to share your memories with friends.

Editing or deleting old posts is interesting, if a bit troubling to the historian in me, and the ability to sign up for notifications is a welcome sign of opt-in ethics, but what I notice here is what’s missing:  I don’t see any reference to an ability to opt out of On This Day, either for certain days or altogether.  It might be there and simply not referred to in the product announcement, but I wonder if this is something that Facebook users will simply have to get used to.

The timing of this has a personal resonance.  As I wrote about yesterday, we just passed the first anniversary of the day Kat and I were told about Rebecca’s second tumor.  For the next eleven weeks, both our posts and pictures from last year, wherever they’re housed, will form a chronicle of the last days of our daughter’s life.  How will we react to Facebook, how will we feel about our experience there, if On This Day constantly reminds us of those events?  Will this product increase our affinity with Facebook, or our antipathy?  Perhaps we might go to Facebook to catch up with friends and joke around with them a bit, as a form of mental respite.  Or, perhaps, we would have done that, but now will be unable to do so.  We’ll soon find out.

Lest anyone misunderstand, this isn’t just about Facebook.  It’s about every service or product that seeks to increase user affinity, and avoid user antipathy.  Facebook just happens to be providing some very obvious grounds on which to base these conversations.  Given their line of business and scale of operation, that’s probably to be expected.  I’ll be following this with great professional and personal interest.

• On This Day was published on Tuesday, March 24th, 2015.
• It was assigned to the Commentary and Web categories.
• There has been one reply.

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.

• Playing Shiva was published on Monday, March 23rd, 2015.
• It was assigned to the Cancer and Rebecca categories.
• There have been eleven replies.

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:

• Everett B.
• Elizabeth K.
• Sean H.
• Ruth M.

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.

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.

• Big Little Heroes was published on Friday, March 6th, 2015.
• It was assigned to the Cancer and Rebecca categories.
• There have been no replies.

Not too long ago, I got Step Nined on Facebook.

If that didn’t parse as regular English for you, Step Nine is part of the twelve-step program offered by Alcoholics Anonymous. It states, with edits for out-of-context clarity:

“[Make] direct amends to [people you have harmed] wherever possible, except when to do so would injure them or others.”

And so someone I knew back in the town where I grew up, a classmate all throughout my pre-college education who I’ll call John, sent me a private message on Facebook apologizing for how he’d treated me, stating that he’d had no reason other than just having been a mean kid, and hoping that things were going well for me and my family.

I’ve pondered this message quite a bit in the interim. The message brought me neither upset nor relief, though I can well imagine that many people in such a situation would feel one or both. I bore no mental or physical scars with his signature upon them. There was no need of closure, or of re-opening, or really of anything, at least from my point of view. He and his actions toward me, positive or negative, are one thin thread in the complex skein that was my childhood, lost in the overall pattern.

In truth, John’s message aroused more pity in me than anything else. I thought as I read it, What must he have endured as a child, that hurting other people seemed normal to him?  And in that thought, I felt an echo from the past, as though the question had come to me before. Perhaps my parents made the observation, as I struggled through growing up, and I was finally able to hear it now. I’m not sure. It doesn’t really matter. If his message is anything to go by, whatever John did has been far more damaging to him than it ever might have been to me.

Still, I keep coming back to John’s message and pondering it further. What I’ve thought about, far more than its contents or the history it references, has been the simple fact of how it happened, and what that means.

Had John wanted to offer amends in, say, the late 1990s, he would have had to actively seek me out. It would have taken the effort of calling my parents to ask for contact information, or other people he thought might have it, and then making that call to me. The social distance would have been a barrier to contact, one whose surmounting signified the importance of the act to him. And then, when he did make that call, he would have talked to me, able to gauge my reaction. There would have been a feedback loop to tell him whether or not his amends were injurious in some way.

And yes, of course, John could have done exactly that today. He could have kept his process entirely off Facebook and gone through those efforts, as an act of personal penance or just as a useful social signifier. Or, perhaps, he could have contacted me on Facebook to ask for my phone number, with a brief statement as to why he was asking for it, and then let my decision to allow the contact or not be a measure of whether it would in fact be injurious.

But he didn’t. Because the internet has disintermediated social effort.

What I wonder about, as I ponder this small signal, is the depth of his remorse. How much does John really mean it, and how much is he going through the motions, trying to get through Step Nine as quickly as possible so that he can reach Step Twelve sooner? Is he working through his personal pain, or is he grinding the leveling process? It’s impossible for me to say. I know it’s a lot easier to send a bunch of “sorry” messages to your contacts than it is to talk to each person you feel you’ve wronged, one on one, one by one, and go through that painful process over and over and over again.

I wonder if that simple ease of contact has robbed him of a critical component of his healing process.

Or, if you want to be more accurate, I wonder if that simple ease of contact lured him into a course of action that was harmful to his healing process.

The things we build are almost always meant to make things faster, more efficient, easier. Perhaps, sometimes, they should be harder.

This genie will not go back into the bottle. The internet isn’t going away and Facebook still has a long way to go before its fall. Even then, something will have replaced it. There’s no reason to think these sorts of connections will become more difficult to make, technologically speaking.

I wonder if they will become more difficult, socially speaking — if an act like that will become frowned upon, as we might frown upon a form letter condolence note. I wonder what sort of protocols and expectations, what social mores, will emerge over time in response to the disruptions our work has caused and will cause, and how they will shape personal interactions at all levels.

I wonder how much effort we should be putting into influencing the evolution of those emergent social constructs, whether through our work or our personal interactions, and how much of that effort would be ultimately fruitless.

I wonder how intentional people are about what they do, online as well as off; and how intentional they should be.

I wonder what I should say to John.

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

• Taking Steps was published on Monday, March 2nd, 2015.
• It was assigned to the Commentary, Culture, Tech, and Writing categories.
• There have been no replies.