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Indescribable

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.

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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.

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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.

Divergence

Being here, in the same vacation spot we were last year when Rebecca fell ill, wasn’t as difficult as I thought it would be… until last Friday, August 15th, the first anniversary of her seizures and life flight to CHOP.

That night, the next day, and the days since were much more difficult for me, as we moved through the anniversaries of her first and second surgeries.  Today is the anniversary of the third, when they implanted the drainage tube that probably kept her functional and complete until the last few days of her life.

These days have been so difficult because I’ve been experiencing what I’ve come to refer to as “divergence stress”.  I feel as though last year’s August and this year’s are running in parallel, branching from this past Friday.  I am here, sitting in our rental, looking at the beach and the ocean waves, and feel as though another of me is up in Philadelphia, gaunt and teary-eyed in a dim intensive care ward and hoping against hope that our daughter will survive, while I sit in sunshine and luxury, wondering why I am not with my little girl who so desperately needs me right now, who I so desperately want to hold and talk with again.

Or worse, that another me isn’t up in Philadelphia, but Rebecca still is, lying unconscious and alone in the intensive care unit.  As though the loop has restarted, but I have stepped out of it, abandoning my baby to her cancer.

I know this isn’t the truth.  She is not there.  We are not there.  We are here, now, and she is not.

But someone else, right now, as you read this, is there.  Another family is assembling around a PICU bed, surrounding their child and hoping against hope and sick, choking fear that their beloved will survive.  Maybe they will.  Many do.

That family, and all the families still to come, need research to give their children a better chance to live.  Many of them will need a place to stay while their child endures weeks or months of surgeries and treatments, just as we did.

To that end, our friends Nancy Massey and Kimberly Blessing have launched a fundraiser with two aims.  The first is to support research into pediatric brain cancer.  The second is to sponsor a room at the Philadelphia Ronald McDonald House for a year.  The $10,000 fundraising goal will allow both.  Going beyond that goal will make it possible to support even more research.

It’s not much to make sure those other families have a welcoming place to stay and a better chance at continued life than we did.  If you can, please make a contribution.

One Year

Exactly one year ago, in the emergency department of Cape Regional Medical Center, Rebecca had the first of her seizures, and our nightmare began.

Now we are back in the same place for our annual family vacation.  The same resort, the same building, even the same floor, though not the same room.  We go to the beach, we swim in the pools, we play games on the boardwalk.  All the things Rebecca loved to do.  In fact, her first wish with Make-A-Wish was not to go to Disney World.  Her wish was that it be summer so she could come back to New Jersey and do all those things.  Disney was a distant runner-up, a sort of consolation prize for not being able to do what she really wanted to do.

Even as we organized for that Disney trip, Kat and I decided to bring the family to New Jersey for an early vacation, if Rebecca was well enough once June finally came.  And then to come again in August, unless Rebecca was still alive but too sick to make the journey.  Neither came to pass.

Instead, we’re here without her.  I had feared this would be too painful for us to bear, but it isn’t.  New memories are being made with our children, and if sometimes Kat and I are drawn up short by a specific memory, or a wish that Rebecca were here to enjoy the trip with us, or just having the instinct to count three heads before realizing that we only have to count two, it is usually a wistful sorrow rather than a sharp agony.  Usually.

Those newly-made memories, of jumping waves and digging holes in the sand and boardwalk ice cream and going to water parks, are the building blocks of healing.  Forming them in the place that Rebecca loved so much is, we hope, the mortar that will glue them together.  It helps that we love it here too, and that love is limned by the memory of her love.

It all still seems unreal.  Our lives were proceeding as lives do, and then, in the middle of our special family time away, we were suddenly confronted with the horror that our middle child, our five-year-old girl, had a tumor in the middle of her brain.

I remember all the shock and terror and anguish, but not like it was yesterday, because it wasn’t.  It was a year ago today.

Depression

I’m sad about Robin Williams.  I was also a little bit angry with him.  In much the same way, I was sad about and angry with Chloe Weil when news of her suicide reached me.

Yes.  Angry.  It took some time and help from a friend to work out why: because Kat and I just spent most of a year doing everything in our power to save our daughter’s life, and now here was someone just throwing that away.

Here’s the thing: they did not throw their lives away.  Both of them were suffering from a disease: depression.  That disease made them feel unloved and worthless despite any and all evidence to the contrary.  And they each eventually, despite years of trying to treat and deal with it, died from that disease.

I know this because I have a milder form of that same disease, one that rises and falls in slow, multi-year-long cycles.  I have spent time on SSRIs.  There are times I have gone to counseling.  I have contemplated ending my own life, though only abstractly, never in a detailed or direct manner.  I’ve never in my adult life had suicidal ideation and a plan.  Robin and Chloe did.  They had a disease much, much stronger than I do.

But that’s where my anger really came from: my own depression.  The same lying impulses that sometimes, not often, but sometimes make me feel worthless and unlovable also pushed me to be angry at these people who had the same disease, and died of it.  It lied to me that they had failed.  And for a little while, I believed that lie.

That reaction made as much sense as being angry at Rebecca for having cancer, as thinking that she failed to fight hard enough to live.  It was not their fault.  I know this first-hand… and yet, I believed the lie.

This is another sign that I have it much milder than they did: I could eventually, with some self-inspection backed by decades of experience, recognize the lie for what it was, and dispose of it.  Not everyone has that ability, no matter how much self-inspection and experience they may have.  Not because they are weak or foolish, but because they literally cannot do it, any more than a cancer patient can verbally order the tumors to leave them alone.

I have been lucky.  The disease is mild enough in me that I am still here, and have only sometimes needed pharmacological and psychological help.  That is not because I am strong.  That is because my disease is not strong.  I have still needed and obtained that help, and I feel no shame for that.  If you need help, please get help.  There is no shame in it, no matter what the disease tells you.  If it tells you that seeking help is failure, it is lying.  If it tells you that being sad is weakness, it is lying.  If it tells you that death is preferable to life, it is lying.

It is not shameful to feel depressed.  It is not weak to feel like you want to give up.  It is not failure to ask for help.  There are resources in almost every city of every advanced country—not enough, to be sure, but they are there.  Please use them, especially if you already have a plan to end the pain.  In America, the National Suicide Prevention Lifeline is at (800) 273-8255, or (800) 273-TALK.  You will be connected with a skilled, trained counselor at a crisis center in your area, any hour of the day or night.

If you know of a similar resource in another country, or other resources in America, please leave a comment with the details.  It could help someone right when they need it most.


Update 11 Aug 14: here’s a list of suicide prevention services throughout the world from the International Association for Suicide Prevention.  If you know of one not on the list, the comments are still open (and you should also let the IASP know!).  And information about depression treatment services, not just suicide prevention, is also welcome.

The Gift of Time

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.

It really is the greatest possible gift.

The Light of Other Days

Every day or three, I upload another batch of photos to Flickr, trying to work my way through the backlog and get caught up with the present.  This is a habit I enforce inconsistently, because I’m bad at maintaining regular habits even at the best of times.  That halfway explains the backlog.  When I do enforce it, my habit is to upload no more than 10 or 15 photos at a time, so that I can properly tag and geolocate them without having to invest hours in the process.  That explains the other half of the backlog.  Right now, as I write this, I’m about six weeks behind.

Which means that yesterday, I uploaded the first half of the pictures from Rebecca’s sixth birthday party.  It’s been over five weeks now since she died, but in the Flickrverse, she still has six days to live.  She’s still tired but essentially herself, riding the Rocket Car and eating mini-donuts and chasing bubbles and hula hooping and blowing out the candles on her half of the enormous Frozen-themed cake shared with Ruth, her best friend in the whole world, the girl who shares her initials and whose birthday is only a few days apart from hers.

She still doesn’t know, none of us know, that the experimental medicine has failed and the tumor has been growing unchecked for weeks, compressing normal brain matter and now only days away from killing her.  Just two days after her birthday party, an MRI will reveal the horrible truth, but in the Flickrverse, that day has not yet come.

Flickr and my laptop combine to become a digital slow glass, bathing me in the light of days past.  I look at those pictures, tag them, adorn them with metadata, sort some into albums, and all the while I remember how we felt that day.  We were worried, Kat and I, but we still had hope.  Everyone there still hoped that she’d find a way to survive, and that hope was not unreasonable.

And so the party was not a wake for a still-living child, but a joyful celebration of her life and the simple fact that she’d lived long enough and well enough to enjoy the party.  There had been times in the previous few weeks that we’d thought she wouldn’t make it that far.  Had we held the party six days later, on her actual birthday, as originally planned, she wouldn’t have.

We didn’t know that then, but I know that now.  As I witness those days past, trying to taste some trace of what life was like then, I also have the horrible foreknowledge of what will happen in the days to come.  I know without question that the MRI will happen, that the news will be dire.  That she will sink into herself and lose so much of what we fought so hard to preserve, and that it will be lost quickly, in the span of a few days.  That we will believe she is leaving us the day before she actually does, and be surprised when she wakes and has a semi-normal evening, believing when that happens that she has a week or two left.  That the next day, the week will end with her actual birthday, the day that shatters us, the day she dies.

Today or tomorrow, I’ll upload the second half of the party photos, and her birthday party will once more be over and that final week will once more begin.  I could stop there, just walk away from uploading forever, and a large part of me cries out to do exactly that—but doing so would arrest more than just the glacially slow expansion of my Flickr account.  If I allow myself to stop there, arrested in the days when we could still feel hope, it will be that much harder to reconcile the past and present.  Without that reconciliation, it is very likely I will never feel hope again.

For myself and my future, the future we were unable to bring her into but must inhabit anyway, I have to keep going.  I have to upload the photos of that last week, relive the horror and anguish, the moments I captured as well as the moments I didn’t but will never be able to forget.  I have to let her go again.

And so the light keeps coming through the slow glass we’ve built, emerging from distributed panes aglow with the light of other days, pushing closer and closer to the unwelcome present.

One Month

One month ago today, just thirty days past, Kat and I held our daughter as she took her last breaths.

I still have trouble accepting this.  We both still have trouble.

Kat says that she often feels like none of this is really happening, that she’s stuck in a nightmare about Rebecca, who is alive and fine and never had cancer.  Sometimes she thinks that Rebecca’s just spending the day with a friend, and we’ll see her for dinner.  She knows this is untrue, but that knowledge doesn’t change the feeling.

I have the opposite problem.  Sometimes I feel like she never really existed, that we’ve only ever had two children and I just had an involved dream about a little girl who lived between our daughter and son.  As if she were a sprite who let us see what our lives would have been like with three children instead of two, and then vanished with the sunrise.  Sometimes I expect to look at the family photos on the living room wall and not see her in them.

But of course she was real.  Imprints of her life are built into the very structure of our lives.  The expansion of the house itself, undertaken to accommodate the three children we realized we wanted instead of the two we always thought we’d have.  Five coat cubbies in the back hallway, instead of four.  Five bar stools at the kitchen island.  The bedroom adorned with castles and clouds and rainbows and fancy princess dresses, a pink painted sky above purple painted hills, a purple fairy canopy over the bed and a cross-stiched birth announcement on the wall, the bedroom where she died, its door now an unadorned white and almost always closed, at least for a while.

A lot of the grief I have yet to really deal with is bound up in her last day, her sixth birthday.  I remember so many things about that day that I wish I could erase, and those are the things I need to deal with.  There are three things in particular that are particularly painful, most of all the moments her body gave out and she physically died.  Twice.  Even though she was gone well before either of those moments, they are still, to me, the moments of her death, and I still can’t shake that impression.

The other two things I’m not ready to allude to, let alone describe, even to myself.  I’ll know I’ve made some progress when I’m ready to write a chronicle of that day.  I may never show it to anyone but me, but I have to write it, have to create a structure where I can store some of my sorrow and receive some measure of peace.

Some day.  Not today.

Today it’s been a month since she died.  One month.  Measured by the weight of my grief, it feels like it’s been a lifetime or more; but measured by the progress I’ve made in dealing with my grief, it feels like it’s been no time at all.

(If you care, there's even an archive of previous thoughts...)

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