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Twenty Years Later

It was right about now, exactly two decades ago, that I pulled on my Tom Servo “I’M HUGE” T-shirt and strolled from my apartment over to Strosacker Auditorium for the CWRU Film Society’s screening of MST3K: The Movie.  I’d gotten the evening off from my tech crew duties on Schoolhouse Rock Live! at the Beck Center so that I could catch the movie in a theater again, having been one of the few who’d seen it during its initial theatrical run.  To say I was looking forward to it was an understatement.  I’d been a fan ever since my high school best friend, Dave, had introduced me to it with a VHS copy of the “Rocketship X-M” episode.  The first HTML document I ever marked up was a copy of the MST3K Episode Guide I’d found on Usenet.

I was a staff member of the Film Society, as well as of the university—at that point I was just over a couple of years into being the campus Webmaster and, more or less coincidentally, not quite a couple of years into being divorced.  The Film Society was a fun way to pass weekend nights in good company, contribute to a collective effort, and get to see a bunch of movies.  So when I pushed through the glass lobby doors, I looked around to see what needed to be done.  The ticket counter was already staffed by a couple of people, neither of whom I’d ever seen before.  Which was to be expected, a month into the fall semester.  We always picked up a few new members as incoming students got adjusted to campus life and looked for stuff to do.  I clearly remember one of them, a laughing girl with short-ish curly hair and a unique clothing style.

I remember because later that evening, after I’d seen the movie and was manning the concession stand for one of the later shows, she wandered over to see if I needed any help, then stayed to flirt.  For once in my life, I smoothly responded in kind.  We kept up the good-natured banter throughout the evening, peppering it with sharp looks and sardonic grins.  As things were winding down on the last show, just as I was opening my mouth to ask her if she’d like me to walk her home, she asked me if I’d like to walk her home.

And that’s how Kat and I met, twenty years ago tonight.

Anyone who knew either of us well would never have pegged the other as a likely match.  She wasn’t even an MST3K fan: she’d come to Film Society that night, a month into her graduate school studies, to join up and thus have a group to hang out with, and hadn’t even really looked at the schedule first.  We had wildly different tastes in music, art, food, recreation, even basic relationship expectations.  And yet, somehow, one way or another, with a lot of work and a lot of luck, it’s worked out.

In the time since, we’ve had experiences more amazing and suffered more deeply than either of us could have imagined, as we traded tidbits of information and innuendo over an array of candy bars that balmy September evening.  We’ve each shown strength neither of us would have imagined in ourselves.  I think we also bring out the best in each other, and that too is a kind of strength.

Two decades.  Hard to believe, sometimes, but we did it…and, as Crow might say, I’d do it again if I had to.

Thank you, Kat.

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.

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.

September 2016
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