Skip to: site navigation/presentation
Skip to: Thoughts From Eric

Archive: 'Cancer' Category

The Beginning of the End

One year ago today, it had been two days since Rebecca’s birthday party, held jointly with her best friend Ruthie, who not only shared her initials but was also four days older than her.  We had celebrated them both with a donut van and a balloon maker and the Rocket Car, which Rebecca rode at least four times.  It was completely over the top, but she was still with us, after ten months of treatments, even with the new tumor in her head, and that was worth celebrating.  Kat and I also decided to go all-out because we didn’t believe she’d ever have another birthday party.  A CT scan a few weeks before had indicated that the tumor had stopped growing, but each day she was getting more and more tired.

Except for her great big birthday party.  She was in better spirits than she had been for weeks, just for that day.  People commented on how much better she seemed, and when they confidently asserted that of course she would beat this, we smiled and didn’t say what we really thought.  Kat and I would occasionally share a glance, as people poured their optimism over us: Do they not understand what’s happening here?  Sharing our secret language of fear and pain, the way other couples share a secret language of love.

The day after the party, Rebecca was more tired than ever, barely speaking for hours at a time and increasingly distant.  So now we sat in a waiting room in the Children’s Hospital of Pittsburgh, our study site, waiting with two of our best friends for the results from her latest MRI, wondering if we were being paranoid or prescient, not wanting to know.

The lead doctor came into the examination room alone, clutching a folder to his chest like it was a life vest, and we knew.  He started to speak, but we interrupted, asking if Rebecca could go play with the Child Life counselor, because we knew.  Of course she could, and she did, heading off with the counselor to the play room, leaving our side for the last time.

“I don’t have good news,” the doctor said, wincing a little, apology in his voice.

We knew.

I remember only a few fragments of what he said.  “Significantly larger” and “many flare sites”.  I remember thinking that they hadn’t even bothered to count them, there were so many.  Tumors coming, everywhere, all throughout her brain, the brain that was already being slowly squeezed by the enormous tumor we thought had been stopped.  All our dreams of extended time with her, of trying to find a way to roll back the runaway growth, shattered.

And then: “A few weeks at the most.”

We knew.

Our little girl, dying.  The end of hope.

“I’m so sorry, you guys.”

We knew.

As we drove away from the hospital, each of us sunken deep into our horror and despair, a torrential burst of rain hammered the roof of the van, overpowering the wipers even on high, all the while bathed in direct sunlight.  All the components for an incredible double or even triple rainbow—except the sun was too high in the sky.

Rebecca sat silent and still in the back seat, staring straight ahead, glowing in the rain-muted sunlight, never stirring even to ask where the rainbow was, let alone look around for it.

She had four days left to live.

Playing Shiva

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.

Big Little Heroes

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:

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.

Rebecca being fierce, July 20th, 2013.  Her first tumor, which was already present in this picture, was discovered a month later.

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.

Six Months, Ten Seconds

Six months ago today, our child died in our arms.

I still have trouble believing this.  Kat and I both still have trouble.  But only on occasion, these days, and not for long.  As someone once said, when it comes to the death of a loved one, you don’t get over it, but you do, eventually, if you allow yourself, get used to it.  We’re slowly getting used to it.

Half a year.  It seems like it’s been forever, as if uncountable years have passed since Rebecca died, and yet there are still so many traces and impressions of her that sometimes it seems as if she was only just here.  We struggle, sometimes, to decide what to preserve and what to let go.  We had to force ourselves to put the few boxes of mementoes we’ve kept into storage this past week.  It felt like we were consigning Rebecca to the attic, which doesn’t seem like much when you think about it, but it was in some ways as difficult as consigning her remains to the earth.  For that matter, we were recently making some changes to the family picture wall, and for each picture of Rebecca, we had to ask if it should stay up or come down.  None of those choices were easy, even after half a year.

Of course, half a year is less time than elapsed between her diagnosis and her death.  I remember so much, and so little, of those months.  But this is unremarkable, given that we remember so little of our regular lives.  (Think about yesterday, or of last Friday.  How much of the day do you actually remember?  How many of those several thousand minutes can you no longer recall with clarity?  Now, what else have you forgotten?)

We have thousands upon thousands of images of Rebecca; just in my iPhoto library alone, there are 10,188 photos tagged with her name, 1,624 of which I flagged or rated five stars (or both), 785 of which are on Flickr.  Kat has thousands more, as do so many of our friends and relatives.  Those pictures can take us back, clarify our memories, or remind us of some aspect of her personality.  Myriad facets of a life so short, and yet so fully lived.

Videos are far more rare—the Flickr album has just three—mostly because I greatly dislike shooting video.  In the end, it didn’t matter.  Our friend Jessica captured a video that is the quintessential Rebecca, a near-perfect distillation of Rebecca’s personality in just under ten seconds—all her sass ‘n’ spice, and all her sweetness too.

(Full transcript available at

Rebecca Alison Meyer, ladies and gentlemen.  How I wish you could have known her as we did.

I laugh every time I watch that video.  Every time.


My next big project is to form a rock band called The Why and release a double-length concept album titled “Apophenia”.

—Twitter post, 15 October 2014

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.

She’s fine.

Presence and the Gift

There are two aspects of my parenting that have really helped me cope with the illness and death of my daughter.  One was there long before she became ill, was in place before we had any kids; and the other I learned in the months since the first tumor emerged.

What I’ve had all along is a strong determination to appreciate each stage of our kids’ lives for themselves.  I’ve heard or read any number of parents saying they wish the next stage of development would hurry up, or that a past stage had lasted longer.  You know: “Oh, I can’t wait for Johnny to start talking, all this grunting and wailing is so difficult!”  Then, months later: “I really miss the quiet days, before Johnny talked non-stop all day every day!”

Sure, the current stage is difficult.  They’re all difficult.  They’re also amazing, unique to each child, and they’ll never happen again.

So I went into parenthood determined not to push them forward, and equally not to hold them back.  Of course we teach and encourage them.  We taught them sign language so they could talk before they spoke.  But we also didn’t push it, drilling them and punishing every mistake and rewarding every success.  It was the same with speech: we spoke and signed with them, and they picked up each at their pace.  The same with solid foods, and potty training, and learning to read and write.

Of course this isn’t a 100% deal.  I don’t always manage to maintain a Zen tranquility about every last thing.  I’m really ready for diapers to be done, for example; it’s been a decade now, and I’m pretty much over it.  But we’re not pushing it, and I don’t make a big deal out of it—or even a small deal.  This phase will be done when it’s done.

That focus on appreciating the kids for who they are every day has long made it easier for me to navigate the regular shoals of parenting.  And believe it or not, it’s made dealing with illness and death easier.  I didn’t fidget impatiently for the end of the treatments, or try to block out what was happening.  I didn’t spend my time looking over the horizon, dreaming of future days and missing what was happening in front of me.  I was focused on what was happening, good and bad.  Every day, as much as I could stand.

Given how little time we had, I am incredibly glad that I was present for it.  That I cherished everything good in it, and accepted everything bad.  I shudder to think how I’d be doing now if I hadn’t.

That was the first thing that helped.  The second thing, the one I learned in the past year, is to treat all my kids as if they might die in the next year.  That probably sounds like a prescription for massive spoilage and neuroses galore, but hear me out.

Try to imagine this: you learn that your child has a small but noticeable chance of dying a year from now.  Say, 5%, or something like that.  There’s nothing you can do to change that, it’s just how it is: a small chance they have a year left, and a much much larger chance they don’t.  How would that change how you treat them and interact with them?

For me, it created a new blend of short-term and long-term parenting.  I’ve always been a long-term parent, thinking ahead years or decades.  That sometimes led me to be stern or unyielding, and to not always express an appropriate amount of patience and care when it came time to discipline.

But when I realized Rebecca would likely be dead within a year, I realized I had to change how I acted toward her.  I had to soften how I disciplined.  By soften, I don’t mean letting her do whatever she wanted, or reducing the scope of discipline.  It meant working extra hard to meet outbursts of five-year-old rage with calm and measured words.  It meant being clear about the causes and reasons for punishment while working extra hard to be matter-of-fact and neutral about it.

These were things I’d always tried to do, but in the chaos and tumult of day-to-day life, I hadn’t always pushed myself.  Now, with a limited time frame, I had to make every day count.

And, once I realized that, I realized I had to do it for all three kids.  Because who knows what will happen?  We all have a limited time frame, easy though that can be to forget.  Carolyn might have died in an accident before Rebecca’s tumor came back.  How would I feel if that happened, and the last thing I had said to her was angry in words and tone?

I had been falling short with all of them.  Rebecca falling ill made me realize that, and showed me how to step up.  And so I have.

As I said, that doesn’t mean their discipline has lessened.  Because, to go back to the 5% chance of death in a year scenario, that’s a 95% chance that they’ll grow up to be adults.  So you can’t let them run wild; if you do that and they grow up, you’ll just as surely have failed them, not to mention everyone who comes into contact with them.  The boundaries are still the same.  I just try my best to communicate them in a different way.

Even with the odds of death much higher than 5%, that’s how we treated Rebecca.  Partly it was because she might survive, and partly it was because she wasn’t an only child.  We had to treat her consistently with our other children for their sake, as well as for hers.  Even more for her siblings, perhaps, given the outcome.

But when I did put her in time out, or took away a privilege, I always did my utmost to do so quietly and with care, not in anger.  Not with a smile, which would have mocked her frustration; nor with raised voice, which would have escalated it.  Just calmly, implacably, maybe a little sadly.  I did my best every time, and not just with her.  With all three kids.  I continue to do it with our surviving children.

I don’t always succeed, but I always try.  And when I find myself losing control, a quick internal reminder of the stakes is usually sufficient to regain my course.  Usually.  I’m not perfect.  But I’ll keep trying.  That’s all anyone can do, is keep trying.


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.

Artisanal Bereavement Spam

On the last day of shiva, this past June, we got a letter in the mail.  Just by looking at the envelope, I could see that it was a note of condolence, and from a nearby address to boot—yet the name was entirely unfamiliar.  When I opened it, I discovered a handwritten note that started with a perfunctory condolence and then immediately turned to extended proselytizing.  Enclosed was a religious tract specifically about the afterlife.

From the actual text, it was clear the person who wrote it didn’t know us at all, didn’t know the first thing about us or what we had just gone through.  They had simply trawled that week’s obituaries to get our names and address, and proselytized by mail.

I wish I were making this up.  But no, someone really did decide that the occasion of our daughter’s death was the perfect time to thrust their religious recruitment efforts into our lives.  Artisanal bereavement spam, basically.

I tweeted about it, leaving out identifying information, but otherwise let it go.  An unfortunate one-off, I figured; someone with more fervor than sense, not to be taken as representative of the group as a whole.

Except it just happened again.  Different person, same religion, same basic approach.  This letter isn’t as glaringly obvious about the obituary trawling, no hollow claims of sympathy or condolence this round, but the handwritten emphasis on seeing dead loved ones again makes it pretty obvious that this is of a piece.


So, yes.  The Jehovah’s Witnesses apparently think it is a fine idea to vulturously circle the misery of others and then swoop in to deposit a load of tract on the dining room tables of grieving families.  And what’s more, to keep doing it.

I disagree.  I don’t even beg to differ, I simply disagree.  If there were an opt-out mechanism, I would most certainly make use of it.  In so doing, I would include a number of comments regarding their apparent need to hide their intent with misdirection and to prey on the extreme pain and emotional vulnerability of others.  Since no such mechanism appears to exist, this post will have to do.

Of course, just as I did the first time this happened, I handled the note, the tracts, and the envelope itself with every bit of the care and respect they deserved.


I Googled around a bit and only found two posts about this practice (“Are Jehovah Witness Members Trolling Obituaries for New Recruits?” (2009), “Letters from Jehovah’s Witnesses” (2013).  Well, here’s a third, this one backed up with visual evidence.

I’m posting this in case others experience the same thing and wonder if they caught a lone crazy.  I’m sorry, but no, they aren’t “lone”.  If you got one, you may well get more.  I very much wish it were otherwise.

November 2015