“Dad, where is the core of the house?” the youngest asked me this morning, as I made his lunch for school.
I might’ve answered differently if he’d asked me what, but this was specifically where. Still, I wanted to be sure what he meant, so I asked what he meant by “the core.” It turned out that, as I thought, he wanted to know the location of the center of the house, like the core of an apple.
I didn’t ask why he wanted to know. I try not to, in cases like this, although sometimes I say something like, “Why do you ask? It’s okay that you want to know, I’m just curious about what led to that question.” But I try to reserve that for questions that seem like they could lead to dangerous activity — e.g., “What would happen if I jumped off a roof?” (Which, to be clear, I don’t think he’s ever asked, but if he did, I’d answer his question seriously and then ask why he wanted to know.)
This time, I just said, “It’s a good question! Let’s figure it out.”
First I had him determine which was wider, the living room or the dining room. He counted off steps and determined the living room was wider. Then he counted the steps across the front hall (such as it is), and then added up the steps from the three spaces. They had been big steps, so it was 18 steps across the house.
More steps were taken to measure the house front to back, at which point we figured out that the center was somewhere in the main stairwell. (Also the only stairwell.) But then I threw the curveball: we’d measured the house side to side and front to back. What else had to be measured?
He thought hard a moment, and then he got it. The slow-blooming grin on his face was priceless. Then he laughed. “How am I supposed to count steps from the basement to the attic?!? I can’t walk in the air, of course!!”
So we counted the floors and their heights in our heads, and considered that the roof’s peak was a bit higher than the attic ceiling, but that the attic and basement had lower ceilings than the first and second floors. In the end, we decided the core of the house was probably the step just below the first landing of the stairwell, about two-thirds of the way across it. He sat in that spot, looking pleased and maybe a little smug. Then he slid down the stairs, telling me his head felt weird when he thought about how he was sitting in the exact center of the house.
A few minutes later, he’d hauled out the deluxe snap circuit set his uncle had gotten him for Christmas, and was building a circuit of his own making. Once it was completed, we talked about current flows and why the fan went slower and the light came on when he opened the switch, and the light went off and the fan sped up when it was closed.
And then it was off to kindergarten. As we walked up the street, he asked why a leaf had moved closer to the door when he slammed it shut instead of being blown further away, so we talked about fluid displacement. The conversation lasted until he spotted a friend getting out of a car, at which point he ran off to compare outfits. (Today was Pajama Day at the school.)
I love talking with him about the world and how it works, because it lets me see the world through new eyes. I felt the same way when I had the same kinds of conversations with his sisters. It’s a cliché that a small child constantly asking “Why?” is annoying and exasperating, but not to me. I never, ever want them to stop asking why. I will always answer their questions, or tell them I don’t know and we’ll find out together. The internet makes that last part much, much easier than in the past, admittedly.
I have another reason to always give an answer, though.
If I always answer my childrens’ questions, I teach them that questions are okay, that questioning is a good thing. And more importantly to me, I teach them that they can come to me with anything, and be taken seriously. Kat feels and acts the same, thankfully.
This has been a real advantage with our eldest, as she moves through middle school and into her teenage years. She knows she can be honest with us. More than once, she’s come to us with serious situations in her peer group, and known that we will listen, take her concerns seriously, and will act as needed. She’s… well, I don’t know if she’s exactly comfortable discussing the biological ramifications of growing up, but she’s able to do so without hesitation or shame. Because she knows I’ll take her seriously, and listen to her, and not tell her she’s wrong or inappropriate. A lifetime of answering her questions about ice and airplanes and the Moon and the color of the sky taught her that.
Always listen. Always give an answer, even if it’s “I don’t know.” Always take them seriously.
Because one day, that open door may give them a place to go for help and shelter, right when they most need it.
The story of a mixer-breaking cookbook, the vault of all practical human knowledge, and what I see when I look at my hands
It all started with an afternoon date. It ended in grease.
Kat and I took a weekend afternoon by ourselves to head down to University Circle, to have some early tea and macarons at Coquette and to see what we might find for a late lunch afterward. We wandered up and down the new Uptown section, chuckling to ourselves over the massive changes since we’d each come to the city. See that bowling alley? Remember when it was a broken parking lot? And when this bookstore was a strip of gravel and weeds?
In the window of the bookstore, I was looking askance at a coloring-book-for-grownups based on “The Walking Dead” when Kat exclaimed, “Oh, that looks fabulous!” It was, I was not surprised to discover, a bakers’ cookbook. Kat loves to bake, mostly for others. In this case, it was Uri Scheft’s Breaking Breads: A New World of Israeli Baking.
The bookstore was closed, so I took a picture of the cover and we moved on, eventually ending up at a ramen shop. I had an unagi don.
I gave Kat the book for her birthday. It’s one of the few things I got right about that celebration this year.
Not long after, Kat had to work at the clinic on a Friday, and asked if I’d make challah from the book so it was ready for dinner that night. I figured, what the heck. What could go wrong? So I hauled out the stand mixer and digital scale, assembled the various ingredients in a line, and started to work.
The challah recipe is sized to make three loaves, because (according to Mr. Scheft) the dough mixes better in large quantities than in small. I was pleased to see the recipe gave all ingredients first as weights, so I didn’t have to convert. I’ve never been great at cups and spoons, especially with baking ingredients, and most especially with flour. I either leave too much air or pack down too hard. A kilogram of flour seemed like a lot, but once I realized it was only a bit more flour than in the overnight bread recipe I’d made several times before, I forged ahead.
Everything fit fairly well into the mixing bowl, which had been my first concern. There was enough room to not have the flour overtop the rim and form a glutenclastic flow over the countertop, at least as long as I started slow. So I did.
Our mixer is a KitchenAid 325W model, bought many years ago and since put to hard service. Kat as I mentioned before, enjoys baking, being good enough at it that she can often free-style in baking and produce wonderful results. I do some baking of my own from time to time, though cooking is more my area of strength. Carolyn has enjoyed learning to bake, and it’s common for her and a friend to decide to make a cake or some cookies when hanging out together, or bake cinnamon rolls for breakfast on a Saturday morning. One of the last things Rebecca did entirely by herself was hold the dough paddle and slowly, methodically eat raw chocolate-chip cookie dough off of it. Joshua isn’t as interested in baking yet, but he’s certainly a fan of paddle-cleaning.
As the challah dough started coming together, it kept climbing the dough hook and slowing the mixer, making the motor whine a bit. I kept shoving it back down, turning the mixer off occasionally to really get it down there. I was faintly smiling over the possibility that the dough would end overtopping the bowl instead of the raw flour when the hook stopped dead and a buzzing noise burst forth from the motor housing.
Uh-oh.
After I’d removed all the dough from the hook and set the bowl aside — the dough was basically done at that point, thankfully — I tried flipping the gear-speed lever back and forth. Nothing but buzzing. It sounded exactly like what you’d expect an unseated gear to sound like, as the teeth buzzed past the gear it was supposed to turn.
There was still bread to make, so I set the mixer aside and got on with the kneading and stretching. Once the dough started its first rise, I went back to the mixer. I figured, what the heck, so I banged on the housing a few times to see if the gear would reseat. And, lo and behold, it started spinning again! There were still some odd sounds, but it seemed to be mostly okay. I decided to clean it off, put it away, and see if the “fix” held.
It was a week later that we found the fix had not, in fact, held. Kat was making babka — from, once again, a recipe in Breaking Breads — for this year’s St. Baldrick’s event in Cleveland Heights when the paddle seized and the buzzing noise once more erupted.
We finished the recipe with a hand mixer (my hand ached for an hour) and I retired to the dining room to search Amazon for a replacement mixer. We could get the same model for about $300, or a more powerful model for more — although that would mean tossing a bunch of accessories, since the more powerful models use a completely different bowl type. There wasn’t, so far as I could find, a stronger motor in the same form factor.
On a whim, I opened a new tab and typed “kitchenaid stand mixer stripped gear” into the search bar, and clicked the “Videos” tab. There were, of course, multiple videos at YouTube, that vast repository of all practical human knowledge. If you want to know the history of stand mixers, you go to Wikipedia. If you want to know how to use or fix them, you go to YouTube.
I started watching the first result, realized it was for a different mixer model, and skipped to the “Up Next” video, which was just what I was looking for: same model and everything. I was a couple of minutes into it when Kat walked into the room saying, “Hey, why don’t you see if maybe you can fix — oh.”
I have not, generally speaking, been what you would call a handy person. Most of my repair attempts made things worse, not better. On occasion, I managed to turn a minor inconvenience into a major expense. I was never particularly ashamed of this, although I was annoyed by the cost. I wasn’t a stranger to manual labor, but I was always better with a keyboard than I was with a hammer — first 88 keys, and then 104.
But for some reason, one of the first things I did to try to manage my grief, late in 2014, was ask my friend Ferrett to help me do some rough carpentry. He had the tools, having taken woodworking classes in the past, and I wanted to put a bookcase in the wall of our finished attic. From that first painful attempt — it took us all day to put together a not-particularly-well-made case — we started getting together once a week or so to just build stuff. Our friend Jim got into the act as well.
A bookcase here, a shelf there, we’ve gotten better at it. We’ve managed to use every tool in the arsenal, though not always wisely. We’ve made abstruse jokes based on the biscuit cutter being made by Freud. We’ve invented hacks on the spot to make cuts easier and figured out later why things didn’t go quite as intended. We’ve learned that you can never be too rich or have too many clamps. (We depart from standard societal attitudes toward thinness.)
As we’ve progressed, those attitudes and skills have osmosed into regular life. Minor home repair is now a thing I do, and approach with confidence instead of trepidation. No real surprise there: practice at anything, and you’re likely to become better at it. But when the screen door latch broke, I bought a replacement and improvised a way to make it work when the frame bracket and latch didn’t line up. I took a Dremel to my aging laptop stand in order to keep it from scratching desks. I’ve fixed more than one damaged or jammed toy.
So, sure, why not see if the mixer could be fixed with a cheap part replacement? After all, a handyman told me years ago, if it’s already broken, trying to fix it can’t make it any worse. Though I remember thinking to myself that he’d never seen me try to fix things.
I assembled my tools, covered the dining room table in several layers of drop cloth, and started the video. I had real trouble getting out the roll pin that held the planetary in place, but WD-40 and persistence won the day. I had to stop for a while while I searched for surgical gloves, but eventually they turned up and I got into the great globs of grease that keep the gears going. And yes, just as the video had prophesied, the problem was the one plastic gear in the mechanism, nestled in amongst the chain of solid metal gears.
Well, see, there’s my problem.
I’m not annoyed by this. That gear, I believe, is intentionally plastic as a last-ditch defense against burning out the motor or shattering a metal gear or the paddle itself, should somethiing seize up the planetary. Think of a metal bar that somehow gets thrust into the paddle, forcing it to stop. Something has to give. A small worm gear acting as a fail-safe is a better option than most others.
I went back to Amazon, this time to order a replacement part. When I found out they were $6.24 each, I ordered three. Until the new worm gears arrive, the various screws and pins I removed are taped in groups to a piece of printer paper, each group labeled according to their points of origin in the mixer assembly. The gear tower pieces I put in a plastic sandwich bag, also taped to the paper, to keep their grease contained.
The broken worm gear I may throw away, or I may keep as a memento.
I am, in my way, pleased with myself about all this. Proud both that I may be able to fix a problem for $7 and an hour or two of time, instead of having to replace an entire appliance for a few hundred dollars; and also for having developed the skills and familiarity to let me try it in the first place. True, I likely couldn’t have done it without YouTube, but in years past, even with YouTube I’d have been hesitant to try, for fear of making it worse, or just being hapless and frustrated by the feeling that if I only knew more, I’d be able to do it right.
Now I know more. I’ve learned — not at internet speed, but at slow, methodical, human speed. I’ve changed, but in ways of my own making instead of ways that circumstance thrust upon me.
When I look at my hands now, I see tools that not only create, but can also repair. They can put to right at least some things that have gone wrong.
There is much more solace in that than I would ever have guessed.
I don’t know, as I write this, whether the mixer will work again. I may reassemble it incorrectly, or even correctly but without success. Sometimes that happens. Sometimes you do everything right, and still have no path to success. But if we do have to junk it after all, I’ll know it wasn’t for lack of first trying to correct the situation.
I will draw pride from that, just as I did from the challah I made for my family and friends, an entire loaf of which was quickly devoured. Just as I have drawn pride from things I’ve written, shaping words that have helped others in ways large and small, and sometimes in ways completely unexpected.
The difference is that when I fix things, I fix for myself, not for others. One small repair at a time, I fix myself.
If there’s one thing that’s made it possible for me to learn as much as I have, and create as much as I have, it’s that my default attitude about things, especially technical things, is that I’m probably wrong about them.
When I first took up CSS and it didn’t do what I expected from reading the spec, I started creating simple, focused tests of each property and its values, to figure out what I was getting wrong. Because I wanted to be sure, I built tests for all the properties, even the ones I was confident about understanding — and, in places, found out my confidence was misplaced. Eventually, those tests became the CSS1 Test Suite. Since I had discovered that, in a lot of cases, the browsers were actually wrong, I decided to document CSS support in browsers. That became the CSS Mastergrid (long since gone). On the strength of that resource, I started writing articles to explain how things worked, or didn’t, which led to writing my first book. And so on.
But it all started because I assumed I was wrong about how CSS should work, not that the browsers were fundamentally broken. Simple test cases seemed like the best way to find out. One thing led to another. In a lot of ways, you could say that my career was made possible by me assuming I was wrong, and setting out to determine exactly how wrong I was.
It’s not that I want to be wrong; in fact, I dislike being wrong. But I dislike continuing to be wrong much more, so I try to find out how I’m wrong, in hopes of becoming less wrong. It’s not even “strong opinions, weakly held” — it’s more “strong suspicion of error, strongly pursued”. In public, when necessary. (This is where it helps to be willing to look like a dork, or even a fool, as Kitt wrote about yesterday.)
When asking for help, this is the approach I take. When I post to mailing lists or forums, it usually comes out as, “Here’s what I think is so, but results don’t match that understanding. What am I missing? Please help me get it right.”
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.
We were driving back home from our impromptu surprise family vacation in Tennessee, winding our way through the Appalachian Mountains, when I pointed out a long, steep ramp to nowhere branching off the side of the highway. “What do you think it’s for?” I asked the kids.
Photo by Bidgee (CC BY-SA 3.0 AU)
They made some guesses, some quite clever, but none correct. So I told them about runaway truck ramps and how they work. I think they were vaguely interested for a few seconds; I got a well-isn’t-that-interesting grunt, which I’ll take as a win. We swept on past, the kids went back to whatever they were doing before I’d interrupted them, and I kept my eyes on the road.
But I was still thinking about the runaway truck ramp, and how it’s a perfect physical example of designing for crisis.
I also wondered about the history of runaway ramps — when they were first implemented, and how many runaway vehicles crashed before the need was recognized and a solution found. After I got home, I looked it up and discovered that ramps didn’t really exist until the 1970s or so. Even if we assume that no vehicles lost control in the U.S. until the Eisenhower Interstate System was established in the 1950s (just go with it), that’s still two decades of what were probably some pretty horrible crashes, before a solution was implemented.
I feel like web design is at the pre-ramp phase. We’ve created a huge, sprawling system that amplifies commerce and communication, but we haven’t yet figured out how to build in some worst-case-scenario features that don’t interfere with the main functioning of the system. We’ve laid down the paths and made some of them look pretty or even breathtaking, but we’re still not dealing with the crashes that happen when an edge case comes onto our stretch of the road.
I’m trying really hard to avoid “information superhighway” clichés here, by the way.
I’ve been pondering whether to incorporate this particular example into my 2015 talk, “Designing for Crisis” — much will depend on how the talk stands after I go back through it one more time to tighten it up, and start rehearsing again. If there’s room and a good hook, I’ll add it in as a brief illustration. If not, that’s okay too. It’s still given me another way to look at designing for crisis, and how that topic fits into the broader theme that the Facebook imbroglio brought to light.
I’m still trying to get a good handle on what the broader theme is, exactly. “Designing for Crisis” is a part of it, but just a part. Several people have told me I should turn that talk into a book, but it never quite felt like a book. Sure, I could have stretched it to fill a book, but something was missing, and I knew it. I thought there was a hole in the idea that I needed to identify and fill; instead, the idea was filling a hole in a context I hadn’t seen.
Now I have. It will take some time to see all of it, or even just more of it, but at least now I know it’s there and waiting to be explored and shared.
My next big project is to form a rock band called The Why and release a double-length concept album titled “Apophenia”.
Kat and Carolyn were in New York City this past weekend for a brief trip, and when they got back Kat was in a bad way. I picked them up from the airport and Kat’s symptoms were such that I drove her straight to the Cleveland Clinic ER on suspicion of a cardiac event. (It wasn’t.) With the help of friends, I got the kids off to their scheduled activities and stayed with Kat. By late in the afternoon, we knew she’d be staying overnight, and we decided that I should go to be with the kids.
I gathered up the backpacks and dirty clothes from their weekend trip, slung them over my shoulder, and then stood at Kat’s bedside, holding her hand. Not speaking, just standing. Eventually she gave me a small smile and said, “Go on.”
I twitched toward the door, and failed to actually move. Kept standing. Kept holding.
“I’ll be all right, Eric. It’s fine. Go.”
“I know it’s stupid, but I’m afraid to. The two times I walked away from Rebecca in a hospital, it didn’t end well.”
We spent our last few hours of innocent ignorance in an emergency room in New Jersey, getting Rebecca rehydrated and hoping to figure out what was going on. She was so lethargic and tired, and we feared spinal meningitis. As the day wore on, she seemed stable, neither better nor worse, but one of us had to go get the other kids. We decided to have Kat stay, since she was the medical professional. I gave Rebecca a hug and kiss, told her I loved her so much and to feel better soon, and walked out the door. Not long after that, she had her first seizure.
Just a few months later, after the surgeries and protons and initial chemotherapy and our return back home to Cleveland, Rebecca finally came down with a fever. It was of course at a time that we could only take her to the ER for evaluation, to make sure she wasn’t neutropenic. It was evening, and we were hungry, so I went over to the food court while the last few tests were run before they discharged us. While I was gone, the staff gave Rebecca a routine dose of ceftriaxone, and she immediately had a strong anaphylactic reaction. We had never known she was allergic to it. Antihistamines were quickly administered, and she had to spend the night at the hospital in case the reaction flared up again. It didn’t.
Twice I walked away from a loved one lying in a hospital bed. Twice something went terribly, horribly wrong.
And of course there’s nothing to that but coincidence, but we evolved to spot patterns. It was a survival skill of the savannah, to see how disparate and apparently unconnected events tied together into a cohesive story.
Now we drag it around with us like a growth that we’ve long since ceased to notice. We see stories written in the stars and meaning imposed on our mundanity. The most common question we ask is “Why?”, and that can lead us to wonderful discoveries and insight, but it seems just as often to mislead us into an egotistic reordering of the world. Our obsessive quest for causes can all too easily cause us to invest in illusions. That pattern-recognizer that coils through the hindbrain can and does turn on us.
Think of all the conspiracy theories you’ve ever heard or believed. Think of all the times you’ve heard of something terrible happening to someone and asked yourself why it happened. Think of all the people who get blamed for what has happened to or even near them, regardless of whether we know all they did or didn’t do.
Think of all the Greek or Roman or any other culture’s myths, the stories where some person draws the notice of the gods, who then proceed to punish them for hubris or mischievously grant their prayer according to its letter but opposite its spirit. That impulse is no less strong in us. So many people ask themselves what they could have done differently to avoid their current situation, or what they’ve done to deserve what’s happened to them.
And even our language enforces this view, subtly and persistently. In the last paragraph, I could have written “So many people ask themselves what they could have done differently to avoid their fate”, but “fate” is a concept born of stories. It carries with it meanings of destiny, of supernatural forces directing a specific outcome. I even started to type the word, and then replaced it with “current situation”, which is a far more accurate rendition of what I want to say, but not nearly so poetic.
Not nearly so story-like.
We optimize our language’s patterns to favor the concepts that feel the best to us. All languages do. And in doing so, we not only reflect the patterns we see, but reinforce them. Powerfully. We reorder the way we see the world, we create patterns of filtering, and when we talk to each other we transmit those patterns to each other, self-reinforcing.
I could say the patterns are living, memetic symbiotes, and thus fall victim to the overactive pattern-recognizer in my own hindbrain.
So we ask ourselves what we could have done to save Rebecca. I can and do believe as strongly as I believe anything that there was never any hope for Rebecca. Her genetic makeup, some accident of her conception or fetal development or whatever, meant that she was always going to die of cancer as a child. We could have tried anything from megadoses of chemotherapy to experimental surgery to the latest woo-woo herbal treatments, and she still would have died. All we could affect was how long that took, and what her short life would be like as it came to an end. And we had no way to know which choices struck the best balance of lifespan and life quality.
I like to think that we did well, but for all I know some other set of choices would have given her another six or twelve months with the same quality of life she had. I don’t know, and I don’t torture myself over that; we did the best we possibly could. Perhaps that’s me imposing an absent pattern on disparate points of data again, but she did have great quality of life, up until the last week or so, and we fought ourselves to safeguard that for her. It will have to be enough.
And yet, I still ask myself sometimes if we somehow could have saved her. If there was a moment when the doctors said X, that we were supposed to do Y instead. And there’s that pattern-recognizer, affecting our language again: “we were supposed to”. As if her life was meant to be a long and perfect story, and we were too blind and stupid to see it and fulfill it. As if we failed to understand what we were supposed to do.
That same impulse is only a short step away from taking responsibility for the cancer itself. Wondering if we could have avoided the cancer entirely if we’d fed her a different diet, or lived in a different city with different air, or taken a different approach in infant medications, or to vaccination. Or if we’d been less satisfied with our lives. Maybe she’d be all right if we hadn’t had the impulse to thank whatever gods or demons might lurk beyond the horizon for our lives that seemed so right, and say no more than that; maybe she suffered for our being humbly grateful for what we had and not thinking that we needed to beg for that state to continue. Punished for the hubris of believing that our lives were good and in no need of improvement.
“What did I do to deserve this?” it’s so easy to ask. “What did she do to deserve this? Why her? Why us?”
“Why”. “Deserve”.
Patterns of instinct, encoded in language, enforced in thought, imposed on the world.
Capricious deities, lurking in the clouds. Heroes and monsters, written in the stars.
Twice I walked away from a loved one lying in a hospital bed. Twice something went terribly, horribly wrong in my absence.
So I stood there holding Kat’s hand, wanting to stay with her even if it meant sleeping in a hospital chair all night, because deep in my hindbrain, the pattern-recognizer was screaming that something would go wrong, just like those other times. That she would die if I left.
I squeezed her hand and gave her a kiss, told her I loved her and to feel better, and walked out the door.
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.
Over the past year, we received much assistance, and even more offers of assistance, so many that we were humbled and a little overwhelmed by it all. In the process, I came to realize that one type of assistance was far more humbling than the others.
For us, the greatest gift people gave us was time. A friend set up a care calendar, where anyone could sign up to come do after-dinner dishes, or wash-dry-fold a couple of loads of laundry, or make a run to the grocery store, or drop off a pre-cooked or easy-to-cook meal, or whatever other thing we needed that would otherwise have taken up our time.
By doing that, they let us use our time for other things. During the day, we could do the legwork of looking for treatment options, or the administrative paperwork of consent forms and privacy releases to try to qualify for studies, or arrange travel details when needed, or run errands that were really best done by us — things like grocery store runs. In the evening, we could concentrate on the kids’ bedtime and take our time with it, allowing a longer bath and adding an extra bedtime story and so on. We could be fully present for every one of Rebecca’s limited and dwindling number of bedtimes, and spend extra time with Carolyn and Joshua as they went through the same difficult passage with us. We didn’t have to short them while we concentrated on their dying sister; we could concentrate on all three, because we weren’t distracted by the back-brain awareness of undone chores.
I cannot overstate how incredibly valuable a gift that is. Not one of us can earn, steal, or otherwise acquire even an instant of extra time. Our time comes to us all at the same rate, never a surplus or deficit, and is of limited duration. Every one of those caring helpers came and spent some of their time, time every bit as finite and unreclaimable as ours, so that we could put our time to other uses. They sacrificed time with their families so we could be with ours. There is no gift that could ever be more precious than that.
It’s definitely hard to give that gift from a distance. What do you do if you know someone several states or oceans away who needs that same gift? Traveling to be with them, taking over that care role for a few days, is an amazing gift, but it’s obviously a lot easier if you live a few streets or suburbs away. Gift certificates for food delivery services or favorite restaurants or Amazon are a decent substitute if you can’t be there in person, though check to make sure the recipient isn’t already flooded with them.
Thankfully, we didn’t need help with expenses. Our health insurance’s deductibles and co-pays were well within our ability to pay them, and we were otherwise able to meet our financial obligations. Not everyone is nearly so lucky.
So what about someone who isn’t so lucky, who’s coping with crisis and tragedy, or for that matter a massively time-consuming joyful event like a newborn child, in addition to an almost-empty bank account? Money is time. Seriously. Donating to a fund for them, or even just sending a check, could keep them from having to work a second job to make ends meet, right when they need as much time as they can get. It could keep them from having to worry about the rent, food on the table, co-payments for office visits and medicine. Or even just straight-up payments for office visits and medicine, if (like far too many in America) they don’t have insurance at all. You might keep them from bankruptcy.
If nothing else, a donation can help them avoid added stress. Money may not be able to buy happiness, but it can greatly reduce pressure and worry and stress and strife, which is very close to the same thing. To be able to just pay for something rather than have to figure out whether it’s within the budget, whether it’s really that important, frees up that energy to concentrate on making better decisions, to put that energy toward making life a little better for themselves and their loved ones.
And of course, if you’re able, you can still offer to come clean up their living room, do the dishes one night a week, watch a little one for an afternoon, ferry a child to and from school, or whatever else they might need.
