Posts in the Cancer Category

Indescribable

Published 9 years, 6 months past

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

Published 9 years, 6 months past

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

Published 9 years, 6 months past

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

Published 9 years, 7 months past

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.


The Light of Other Days

Published 9 years, 8 months past

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

Published 9 years, 8 months past

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.


What Not To Say to a Grieving Parent

Published 9 years, 8 months past

In the face of tragedy and grief, it’s hard to know what to say or do.  And one thing I’ve noticed is that some people — not most, maybe even not many, but more than enough — say and do what they think would help them, without really considering what might be helpful to the person who’s grieving.

I don’t really want to get into the doing side of things at this point, but I can definitely talk about the saying.  The most basic rule is:  don’t let your discomfort with tragedy and grief push you into saying whatever comes to mind.  A person’s grief is not a wall against which you should throw a spaghetti pot of nostrums, hoping that one of them will help.  Maybe one will, but the harm likely caused by the others will outweigh it.

The second most basic rule is:  don’t assume that a grieving person believes what you believe, or even that they believe what they believed before the tragedy.  They may surprise or even shock you.  The atheist may suddenly talk about an afterlife; the theist may angrily reject the existence of higher powers.  These may be temporary shifts, or not, but they are raw, honest expressions of grief.  Apply this rule in the exercise of the most basic rule, above.

Right now, I can only address this from the perspective of a grieving parent, so I will, though this all does apply to anyone who’s grieving — the child of a dead parent, the close friend of the recently deceased, and so on.  Let’s start out with things you should say to a grieving parent.

“I’m so sorry.”

You’ve let them know you feel sorrow for them, are thinking about them, and are generally there in support of them.  It seems like a lot for so little a sentence, but it’s all there.  I think this is just about the most universally acceptable thing you can say to a grieving parent, and it also has the benefit of being the most appropriate thing to say.

Be prepared for them to say “me too” or something like that; otherwise, they’ll probably thank you.  Do not tell them that no thanks are necessary.  Let them acknowledge your care and support in what is likely the only way they can manage, with the only words they can find.  Which leads us to the next thing you can fairly safely say.

“There are no words.”

Because after expressing your sorrow, there really aren’t.  There are no words that can explain it, no words that can make it better, no words that can take away their anguish.  I doubt there ever will be.

Beyond those two things, you can offer to help in some way — which is part of the doing that I said I wasn’t going to get into, but I’ll say here that you should only say this if you’re willing to do laundry or dishes or whatever else they request — or just sit quietly with them until they speak.  Then follow their lead in the conversation.  They may not speak at all, even if you sit with them for hours.  Be okay with this, or be somewhere else.


All right, so what do you not say to a grieving parent?  Honestly, we could be here all day with that, but I’ll skip over the ones that are obviously Just Wrong and address some of the most common ones that seem to pass by without comment.  And yes, I’ve had all of them said, tweeted, or Facebooked at me, or at least very near me.

Of course, all of these are dependent on the parent in question.  If they say their child is in a better place now, you can absolutely agree with them.  In fact, you should agree with them, or at least refrain from disagreement, regardless of whatever you personally believe.

Because that’s what you do if a grieving parent expresses a belief you don’t hold: You agree with them.  Now is not the time to be undermining whatever framework is holding them together; they have little enough of that as it is.  If you’re religious and a non-religious parent says that their loved one is gone forever, not existing at all, you go along with it.  If you’re non-religious and a grieving religious parent says their loved one is in a better place, in the arms of God, you go along with it.  This is about them, not you.  Adhere to the Ring Theory at all times.

That said, here we go.

“How are you doing?”

How do you think the parent of a dead child is doing?  Okay, I admit that this might be acceptable if you know them very well or if enough time has passed — though how could you know if enough time has passed? — and because it comes from a place of concern for their well-being, this might get half a pass.  Except what it usually does is force them to either lie conventionally (“I’m okay”) or tell the painful, probably swear-heavy truth.  Better would be “I’ve been thinking about you” or even “I’ve been worried about how you’re doing”, though not by very much.

It’s also very much the case that this has been culturally ingrained for many of us; it’s just a longer way of saying “hello”, fired off without thinking, and so it just slips out.  Grief creates an extraordinary circumstance, though, and you need to go into it challenging all of your preconceived notions about how to interact with other people.  Be aware of what you’re about to say and how it might affect the person in front of you.  (I mean, you should probably always do that anyway, but make sure you do it in this situation.)

“It’s all part of God’s plan.” / “God has a special plan for them.” / “Everything is in God’s hands.”

You just told the parent of a dead child that God planned the death of their child.  That God meant for it to happen, wanted it to happen, and in fact arranged events so that it would be sure to happen.  This is not comforting.  It is very much like the opposite.

“God needed another angel in Heaven.”

You just told the parent of a dead child that their loved one is gone because an all-powerful deity took their child away from them, on purpose, for its needs, not caring what it did to them.  Also, if they don’t believe in God (or even a version of God sufficiently similar to yours), you just said the equivalent of “Santa needed another elf in his workshop.”  Would you say that to a dead child’s parent?  Then don’t say this either.

“Now they’re watching over you.”

You just reminded the parents of a dead child that for all their care and efforts, they could not protect their loved one from untimely death, which is pretty much the most basic responsibility a parent feels.  Furthermore, it is the job (some would say calling, others would say privilege) of parents to watch over and protect their children, not the other way around.  Telling them that this arrangement has now been inverted does not help.

“They’re in a better place now.” / “They’re where they belong.”

You just told the parent of a dead child that there is a place better for them than the home that sheltered them and the family that cherished them.  That the child truly belongs somewhere other than with the people who loved them most.  Don’t do that.

“Everything happens for a reason.”

You just implied that the child is dead because something their parents did resulted in the death.  That wasn’t the intent, but it’s still in there, easily picked up on by parents racked with overwhelming regret and, very possibly, guilt.  (Even parents who did everything they could in a no-win situation are likely to feel guilt that they didn’t do more or couldn’t find a way out.)

“Maybe it’s for the best.”

You just told the parent of a dead child that it’s better their child is dead than still alive.  No.  Just no.


The one I almost included was “I’m praying for you”, because you don’t always know what the other person thinks of prayer.  In general, though, I think most non-religious people (even grieving parents) will mentally translate it to “I’m thinking of you and care about you”.  Of course, if you know for a fact the grieving parent is non-religious, you should probably think hard about skipping this one.  You can still pray for the non-religious, obviously, but say that you’ve been thinking about them.

There are a bunch more that are borderline.  “At least they aren’t suffering any more” is very risky, for example, even if the child was in fact suffering greatly before they died.  It reminds the parent of their child’s suffering, for example, and they may feel guilt as well as grief about that (see above).

As a last note, be careful about what terminology you use regarding death.  Some parents won’t want to say or hear that word, preferring instead phrases like “passed away” or “passed on”.  Others actually find phrases like “passed away” or “lost” to be more painful.  Again, take your cues from the griever.  If possible, don’t use any death-related terminology until they do, and then use the words they do.

To sum up:  think hard about what will help them rather than what will soothe you; do not contradict expressions of grief even when they conflict with your beliefs; be sure to adhere to the Ring Theory; take your cues from the griever.  And be prepared for just about anything.


My thanks to Gini Judd, Kate Kikel, and TJ Luoma for their pre-publication feedback on this post.


I Have No Voice, and I Must Grieve

Published 9 years, 9 months past

In the hours since Rebecca’s funeral and inurnment, I find it increasingly hard to speak.  I can talk if I must, almost always in response to someone’s attempts to engage me in conversation, or to thank people for coming to Shiva.  I have no words of my own.  Only here, typing, can I find a few.  Even these are hard to produce.

People come to the house and tell me how sorry they are, and all I can say is “So am I.”  They tell me how remarkable Rebecca was, how much the service moved them, how we’re constantly in their thoughts, and all I can do is mumble “Thank you.”  They ask me how I’m doing and I don’t know how to answer.

I look at her pictures on the wall and on the mantle, sitting in front of the Shiva candle, and I try to feel something.  Anything.  Grief seems as absent as joy.  Tears rarely come, and only then in sympathy with the tears of others.  People tell me how incredibly strong I am, and I don’t know what they mean.

In my head, I tell myself that this is still shock, deep shock, and that grief will come.  In my heart, I ask myself how I could possibly feel — more accurately, not feel — this way, if I ever truly loved Rebecca.  Was the whole thing a long, involved dream?

The mourning candle burns on the mantle, and the pictures surround it.  Rebecca as a baby.  At Disney.  Laughing with her siblings.  Kissing a dolphin.  Smiling next to her mother.  It must have been real.  The house seems empty now, vast beyond need, filled with too many rooms and not enough use.  I miss her laugh, her footsteps, her arms around my neck, her energy.  It must have been real.  Yet I still sit, numb and passive, wondering if I will ever grieve my child’s death, and what it will say about me if I never do.


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