Posts from August 2014

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.

• Artisanal Bereavement Spam was published on Tuesday, August 26th, 2014.
• It was assigned to the Cancer, Personal, and Rants categories.
• There have been eleven replies.

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.

• Divergence was published on Wednesday, August 20th, 2014.
• It was assigned to the Cancer, General, and Rebecca categories.
• There have been two replies.

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.

• One Year was published on Friday, August 15th, 2014.
• It was assigned to the Cancer and Rebecca categories.
• There have been seven replies.

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.

• Depression was published on Monday, August 11th, 2014.
• It was assigned to the General and Personal categories.
• There have been ten replies.

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 Gift of Time was published on Monday, August 4th, 2014.
• It was assigned to the Observations and Personal categories.
• There have been seven replies.