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Bittersweet

This morning, our youngest child Joshua attended his first day of kindergarten.  After breakfast and lunch-making and a shoe argument and coffee for everyone but me, we walked up our sun-dappled street to the elementary school together, me and my wife and our son and the empty hole beside him, where his sister would have been.

Today was his big day, and Kat and I worked hard to keep it that way.  We took his picture on the front porch, as we did for each kid on their first day, and strolled along the sidewalk.  We smiled as he shifted his brand-new backpack on his shoulders, getting used to its weight and feel with its folders and crayon box.  We ruffled our hands in his first-day-of-school haircut—a Mohawk, at his request—as he assured us that he and his friend M.L. would know everything they needed to do in school, since they’d already learned it all in preschool.  We stood with him outside the school’s front door, chatting with parents and teachers as we waited for the start of the day.  We headed into the building in a line, eventually splitting off into the kids’ room and the parents’ orientation room.

We didn’t talk about our missing third-grader, even to ourselves.  We refrained from sharing the looks, the touches, the abbreviated sentence fragments that are painfully clear to us and nobody else.  Our kids may not understand exactly what we’re saying in those moments, but they know exactly what we’re talking about, just from the way our jaws stiffen and the dull sharded light in our eyes.

We didn’t talk about our hopes of past years, how we’d looked forward to our kids walking to school together, hand in hand.  We didn’t talk about the two years we’d been away from the school, years we had expected to be there as each kid moved through the grades.  We didn’t talk about the absent eyes that would have shone with pride and protection.

We didn’t talk about how we had only made one decaf coffee for the kids that morning, instead of two.  Joshua, like Rebecca before him, loves coffee.  As long as it’s loaded with milk and sugar, that is.

Bittersweet.

As we got ready to leave the school and Joshua to his day, we gave him hugs.  He showed us the work folder he’d been given, a plain Manila folder on which the kids had been asked to draw a picture of their families.  He’d drawn us all: Kat, and me, and Carolyn, and himself.  And between him and Carolyn, a line.

A marker drawn in marker, holding open a place in his family that can never be filled.

We told him it was a great drawing, and to have a great day, and held our tears until we were well out of his sight.

It’s not fair to anyone, least of all him, that these milestones are so irrevocably tinged.  We try, and often succeed, to keep them focused on the present, to take them for what they are rather than what we wanted them to be.  And we’re getting better at it as time passes.  Better is not perfect, and I doubt it ever will be.

But if you’re reading this years from now, Joshua, please know: we were so happy to see you start kindergarten.  We truly felt joy seeing you meet your classmates and teachers, and give everyone that sly half-smile you’ve perfected.  And we felt pride at seeing that you haven’t forgotten the sister who died when you were so very young, and whose memory you keep alive in your own ways.

We may have missed Rebecca, but we didn’t miss seeing you take those first steps into your new school, and we’re beyond grateful that we could be there to see them.

Pokéstop and Think

As I write this, Pokémon Go is still huge.  One of the latest moments was the stampede that occurred when a rare Pokémon spawned in Central Park.  And one of the stories that’s fascinated me the most has been that of Boon Sheridan, who lives in a converted church that’s marked as a Gym—so now he has random people hanging around outside his home at all hours.  (The Gym has since been removed by Niantic.)

There’s a lot I could say about Niantic’s apparent lack of foresight regarding how Pokémon Go play might intersect badly with the physical world and the people who inhabit it.  Spawning a water Pokémon in the middle of New York City’s 9/11 Memorial, for example, comes off as a little bit…callous?  Disrespectful?  To say nothing of the reports of Pokémon Go play disrupting the Holocaust Museum in Washington, DC, or Auschwitz.

But that’s not what I want to ponder right now.

I’ve seen a meme circulating around Twitter and Facebook, encouraging Pokémon Go players with extra lures to drive down to the local children’s hospital, in order to draw more creatures to the sick kids, confined to their beds, who might want to play. A picture of a nurse from an anime video, probably a television show, with the caption: “Hey Pokemon Go Players.  Have extra lures?  Then drive to your nearest Children’s Hospital and drop the lure there.  Ther eare plenty of kids who would love to go out and collect Pokemon, but they are stuck in bed, so this will help them.” And, indeed, at least one children’s hospital in Michigan is embracing Pokémon Go to get their patients up, moving around, and interacting with each other.  Hospitals generally have multiple Pokéstops in them already, so luring in creatures is even easier.  Why not jump in the car, as the meme suggests, and bring a few tears of joy to a bedridden child’s face?

Because it might have the opposite effect.  Not every bed in the hospital is within range of the Pokéstops, which means that you might condemn a child unable to leave their bed to watch the creatures spawn and spawn, just beyond their ability to collect them.  Their tears won’t be of joy—and their misery might be prolonged by having other patients talk excitedly about all the Pokémon they caught and levels they gained.

Beyond that, if the Pokéstops in a hospital are constantly in Lure mode, they’ll lure more than just Pokémon: members of the general public will start showing up and trying to gain access to the hospital for no other reason than to “catch ‘em all”.  This can create a number of problems, from the simple disruption to people’s work to adding extra strain on the hospital’s security personnel.  The surge in random visitors at all hours could force the hospital to spend money on extra security staff hours—money which is then not available for other things.  Like medicine.  And children in hospitals are often immune-compromised, which means all it takes is one infectious Pokémon player to cause a serious medical crisis.  A whole crowd of them represents every NICU’s nightmare.

What’s the societally correct thing to do?  Here’s the thing: we don’t know.  We haven’t figured this out yet; in fact, we’ve barely started to think about figuring it out.  When it comes to luring monsters for the benefit of sick kids, please, call the hospital first to ask if your act of generosity will be welcome.  Maybe it will!  Or maybe not, and for very good reasons.  In the absence of better experience design on Niantic’s part, the players need to step up and think through the possible ramifications of their choices, positive and negative.

I can easily imagine some hospitals asking players to only drop Lures at certain times, such as only during daylight hours, or to spread them out so as to maintain a constant supply.  They might request specific Pokéstops be enhanced, and others left alone.  (Remember, Pokéstops’ locations are defined by Niantic, not the physical place that ‘hosts’ them.)

And I can just as easily imagine hospitals having absolutely no idea what to say to people who ask them what they would prefer.  This is all happening at internet-game speed, and large organizations can be slow to react.  So call ahead—and in the absence of a clear “yes, please, come on down!”, assume that the Lures would not be welcome.

I know this isn’t tidy.  In a just world, the idea of dropping Lures for sick kids would be pure and right, with no potential downsides.  But then, in a just world, there would be no need of children’s hospitals.

Between the Rain and the Sun

Late in the afternoon, we all drove over to Mayfield Cemetery to visit Rebecca’s gravestone, two years after her death.

“She’s not here,” Kat said quietly as the kids headed back to the car, for once not making a race of it.

“I know,” I said.

“She’s in her preschool.  She’s at New Jersey.  She’s everywhere we are.  This… is the last place she is,” Kat said.

Misunderstanding her meaning, I shook my head.  “No.  The last place she was, was in our home.  In her home.”  My voice cracked on the last words.

Kat didn’t correct me.  We stood silent, holding each other, feeling the stiff rivers of pain running through each of our bodies.

The cemetery groundskeeper rolled slowly by in his SUV, giving us the “we’re closed” look.  Kat nodded at him.  The SUV rolled on.

I took some pictures of the mementos friends had left earlier in the day.  Flowers.  A rainbow-colored spinner.  A small plastic Rainbow Dash toy.  We nestled the figurine into the earth next to the stone, in hopes that it would stay safe through a summer of mowing.  I whispered a few words to my absent daughter, barely voicing apology and love and regret past the tight bands of sorrow in my throat.

We decided not to go to any of the kids’ favorite restaurants for dinner, not even Rebecca’s.  We drove instead to Chagrin Falls, to eat at Jekyll’s Kitchen, our first visit since its reopening.  After dinner, we got ice cream at Jeni’s and walked down the stairs to the falls.  We showed the kids where I had formally proposed to Kat, one icy March afternoon almost two decades before.  Carolyn was incredulous to hear that we’d jumped a closed gate to do it.  Joshua climbed over rocks and logs down on the river’s bank, falling once and then warning me about the moss on the rocks.  “The moss is very slippery,” he informed me solemnly.  “You have to be careful.”

On our way home, the clouds were underlit by sunlight which I guessed was reflecting off Lake Erie.  As we turned alongside the interstate, I spotted columns of rain off to the north, dark beneath the darker clouds.

I had a sudden hunch.  I turned off the direct path home, working north and west in a stairstep fashion.

“Why are we going this way?” Carolyn asked.

“I think your dad is stormchasing,” Kat said.

“Rainbow-chasing,” I replied.  “I just have to get us between the rain and the sun.”

Soon enough, a light sprinkle fell across the windshield.  Just as I turned west onto Cedar Road, the sprinkle intensified to a light rain.  Ahead of us, the setting sun turned utility lines into threads of golden fire.

“If there’s a rainbow, it will be behind us,” I said.  “Kids?  Is it there?”

A rustling of movement, and then: “Oh my God!” Carolyn exclaimed.

I pulled into the parking lot of the Burger King across from University Square, and there it was: strong and bright at the horizon, fainter at the zenith, paralleled by a still fainter cousin.  Well, would you look at that—double arches over Burger King, I thought, wryly.

The rainbows flared and faded as rain and clouds and sun shifted places, the slow dance of color and light.  I watched it all unfold, feeling anew the ache of regret that I hadn’t been able, hadn’t thought to try, to give her one more rainbowShe would have loved this so much, I thought sadly.  Just as her sister and brother are loving it, right now.

“This is a sign,” Carolyn said.  “It has to be.”  I smiled softly.

Two years.  Two rainbows.

We love you, Little Spark.  We miss you.

Fearing The Cure

I’m afraid there will be a cure for cancer.

Except no, that’s not really it.  In truth, I’m afraid of what a cure for cancer will do to me, and to Kat.

After my mom died of breast cancer in 2003, I gritted my teeth at news stories of promising new cancer treatments.  I’d think to myself, If a cure is coming soon, why couldn’t it have come sooner?  As, I’m sure, the parents of polio victims asked themselves, when the vaccine came into being.

Word came recently that the FDA is fast-tracking a novel treatment for glioblastoma, based on genetically modified polio virus.  Initial trials have been so effective, they’re opening it up to as many as possible.

And I remember reading about this treatment, which had worked in a single case, two years ago, as our daughter was treated for glioblastoma.  We tried to get access to the treatment, tried to get into a study or just be given a sample to administer, and were denied.  Twice.  They wouldn’t let us try it on a little girl with multiple tumors, when it had only been successfully tried on an adult with a single tumor.  That door was closed to us.

So the experimental treatment we tried wasn’t a modified polio virus.  It was something else.  It was something promising.  It didn’t work.

I know this polio treatment, as much as we wanted it then and as promising as it looks now, may come to nothing.  So many other treatments have before.  I remember the every-other-year drumbeat of “Is This The Cure For Cancer?” headlines and magazine covers—all about novel, promising approaches that nobody remembers now, because they didn’t work as it seemed like they might.

“A cure for cancer is the next great breakthrough in medicine, and it always will be,” I sometimes joke, a little bleakly.  But then, that’s what they used to say about polio itself.  About smallpox.  About wound infections.

I read that story about the treatment we’d begged them to let us try, and how it looked like it might cure the cancer we could not, and sick grief ached anew in my chest.  I thought, What if this really works, and we failed to get it for her?  What if I could have called that doctor again, begged and pleaded, and somehow gotten him to say yes that time, and saved Rebecca’s life?  Will I ever forgive myself if the cure was there all along, and I was too weak or blind to force it into our hands?

I still don’t know the answer.

I don’t want brain cancer to remain uncured.  I don’t want any cancer to remain uncured.  I don’t want other families to suffer what we and so many other families have suffered.  There is much I would give to bring about that day, even though it comes too late for my mother, and for my daughter.  There is much I have given, in many senses, to try to bring about that day.

When that day comes, if it ever comes, even if it’s just for one type of cancer, celebrate all the lives that will be saved.  Feel that joy and relief.  But also spare a moment of compassion for all the lives that were lost, and all the lives that were broken.  Especially for the ones who died just before the cure came, the ones who mourn both their absence and the could-have-been that came so close.

Until that day comes, if it ever comes, spare a thought for those who live sick with dread and desperate hope, wishing and praying for a breakthrough to save their loved ones.

Spare another for those who live in dread of that day, and hate that they do.

Name Suggestion

I’ve started playing an occasional game with my iPhone, where I type in a word to start a message, and then repeatedly accept whatever autocorrect suggests as the next word.  If I’ve understood the terms correctly, I’m manually accepting iOS’s Markov chain output.

I’m inclined to post the results to a Twitter account, sort of like I did for Excuse of the Day, but I’m stuck on the most prosaic of roadblocks: I’m having trouble thinking of a good name for it.  (Here, ‘autosuggest’ will not help me.)  Anyone have a winning name they’re willing to contribute?  Full credit to the winner in the Twitter bio, not to mention here, plus a percentage of the multi-million-dollar royalties from the inevitable book and movie deals.

Update 10 May 16: thanks to everyone who made (auto)suggestions!  The final winner is @markovmywords, as suggested by Jonathan Schofield (@schofeld).

Invisible Airwaves

All of a sudden, I’m on three different podcasts that released within the last week.  Check ‘em out:

  • The Web Ahead #115 — recorded LIVE! at An Event Apart Nashville, I joined Rachel Andrew, Jeffrey Zeldman, and host Jen Simmons for an hour-plus look at the present and future of web design and web design technologies, featuring a number of really sharp questions submitted by the audience as we talked.  We got Nostradamic with this one, so warm up the claim chowder pots!
  • User Defenders #20 — Sara and I talked with host Jason Ogle for just over an hour about Design for Real Life, digging deep into the themes and our intentions.  Jason really brought great questions from having just read the book, and I feel like Sara and I kept our answers focused and compact.
  • The Big Web Show #144 — Jeffrey and I talked for just under an hour about Design for Real Life and the themes of my AEA talk this year.  This one’s more of a ramble between two friends and colleagues, so if you prefer conversation a little looser, this one’s for you.

Share and enjoy!

Talking Shop

Sara and I are guests on the most recent Shop Talk Show, espiode #212, where we talked with Chris and Dave about Design for Real Life, Google Mic Drop, and more.  We had a good time with it, and hope you will too.

In a moment of slight coincidence, the episode was released almost exactly a year after my first appearance on Shop Talk (espisode #161), where I covered similar topics.  At that point, Sara and I were still researching and tossing ideas for the book back and forth.  Now here we are, a year later, with the book out.  It’s a little wild to contemplate, honestly.  It was a lot of work in a pretty short time frame… but so very much worth it.

In The Manual: “We Are What We Build”

I’m honored to be included in Issue 5 of The Manual, doubly so because it may well be the last issue of The Manual, triply so because I spoke at the very first Build Conference, the event that gave birth to The Manual.

I have two pieces, as is traditional for The Manual: an article titled “We Are What We Build”, and a short, untitled ‘life lesson’ about a whiny 12-year-old me and my grandfather’s quiet wisdom.

A quote from “We Are What We Build”:

The challenge now is in how those fragments of our lives are treated. This is as much a social question as a technological problem, but the two are not separable. What Facebook and Twitter and Instagram and every other at-scale social network does now—everything they make possible or impossible, everything they make easier or harder—will shape what we think of as normal in a decade or two.

Past readers may recognize this sentiment (as well as the title) from my talk at XOXO 2015, which was heavily intertwined with the article for The Manual.  One led to the other, in fact.  I proposed the talk, which Andy B. accepted, and then Andy M. asked me if I’d write it for The Manual.  So I did.

I was glad to write both, and I hope you enjoy them… and more importantly, I hope they provoke some reflection.

August 2016
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