A Poem For Rebecca Meyer, 2008-2014

When I was one I had just begun
When I was two I was nearly new

When I was three I was hardly me
When I was four I was not much more

When I was five I was just alive
But now I am six, I’m as clever as clever;
So I think I’ll be six now for ever and ever.

– A. A. Milne, “Now We Are Six”

Rebecca Alison Meyer, who had been so sick she barely talked or moved, rallied last night to go to her birthday dinner at her favorite restaurant.  She ate her favorite Sasa Matsu fries and gorged on birthday cake frosting.
At 2:00 a.m., the rally faded and she began to die in earnest. We got the call at 6:00 a.m., and drove to her house just in time to hold her hand as she officially made it to her sixth birthday at 7:24 am this morning.  She was no longer “Becca,” she had informed us beforehand.  A big girl of six should be Rebecca.  Though she was always Rebecca to me, and she was always larger than her age in every way that counted.
Eleven and a half hours later, she died.  If love alone could have saved her, the caring in that room would have incinerated her disease, lifted her up, floated her away.  But it couldn’t.
Rebecca’s last words were to her best friend: “Goodbye Ruthie, I love you, mwah!”  Which, you know, not bad words to go out on.
She is six.  She made it to six.  She is six now, and she is Rebecca, and God oh Christ I will miss her for all my days.

 

Which Is Bigger: The Death Star, Or The Asteroid In Armageddon?

Armageddon is a terrible fucking movie.
Now, I know many of you enjoy it, and you are objectively wrong.  I won’t judge you for the terrible awful tastes you keep pent within your blackened hearts, but Gini watched it for the first time yesterday and was rightfully appalled at everything from the four-second average cut length to the ludicrous mangling of physics to the message that the government is incompetent at everything and we’d all be better off if these manly men who Do What They Gotta Do would just be left to build spaceships out of the purest goodness of their heart and then fly into space to nuclear bomb-drill ALL THE THREATS.
But I’m not here to discuss the quality of Armageddon.  I cannot.  That would involve it having some.
I’m here to discuss the Death Star.
For my wife and I were discussing the asteroid in Armageddon, which as we all know is “the size of Texas,” and whether the Death Star was bigger than that.  And I argued quite strenuously that the Death Star was bigger than Texas.  It’s a moon, for fuck’s sake!   It has to be bigger than Texas!
And I…
…was wrong.
The Death Star, at least according to Wookieepedia, was a mere 160 kilometers in diameter – about a hundred miles.  Which means the Proclaimers would have to mall-walk the Death Star five times before they would finish the first verse.  The second Death Star was 900 kilometers, about 550 miles, and what an interesting disappointment it was for me to realize that I could fit four supersized Death Stars into the Appalachian Trail.
Texas?  Texas remains big.  It is 660 miles wide and 790 miles long.  In fact, Texas whomps Death Star I by, well, a Texas-sized margin.
And yet…. the Death Star is a moon?  Well, then we start getting into minutiae, such as the fact that Han is not a trained astronomer, and the removal of Alderaan from the vicinity means that he had no comparison planet to give visual reference, and as Leons Petražickis points out, some asteroids (like Ceres, 950km in diameter, far larger than the Death Star) are bigger than some moons (like Styx, 25km diameter, which would roll around in the Death Star one like a billiard ball).
So alas.  On this one aspect, Armageddon is superior: their threat is larger than the Death Star.  Not as deadly, of course, as the Texas-sized asteroid would merely exterminate humanity and not the planet – although who knows?  With Armageddon’s bollixed take on physics, perhaps the Texas-sized asteroid would have sent the poor earth exploding to smithereens.  I mean, blowing apart a Texas-sized asteroid within the orbit of our moon was perfectly safe for some reason, despite the fact that it was stated in the movie that basketball-sized meteors could destroy buildings, so who the fuck knows what’s going on?
My wife, however, feels quite vindicated in besting me in this argument.  So yes, honey, you were right.  As you usually are.  About everything.
So when Gini tells you that Armageddon sucks, she is also correct.
 

One Last Writing On Cancer, And I'm Done For A While

WARNING: Complicated feels ahead.  Step carefully. I tried to.
I have two daughters.  My elder daughter, Erin, lives nearby.  And she comes over some nights, and watches bad television with us (I don’t know how many wedding reality TV shows we’ve collectively watched), and we have drinks and discuss the world and it is glorious.  And I don’t discuss that joy with you folks because a) it’s not at all unusual, b) Erin has not asked to clamber upon the stage of my little blog-world here, and c) she is the star of my world, not yours.
Erin makes me proud every time I see her.  She is growing.  She is beautiful.  She is emerging from the confusion that everyone seems to stumble through in their mid-twenties to achieve some form of stability, and hearing about her triumphs and setbacks is one of the highlights of my life.
And I get far more happiness in one unblogged discussion with her than I do in tearfully chronicling Rebecca.
I do write about Rebecca, because her time on Earth here is short and her troubles great.  But there’s also Rebecca’s sister and her brother, both of whom are equally beautiful and beloved to me, neither of whom I have to write about because (as far as I know) they will be around to chronicle themselves.   It’s an honor to share Rebecca with you, but in a better world Rebecca would be the source of a few silly Tweets, maybe an anecdote blogged without her name to protect the privacy of a child, and I would have the privilege of racing around with this crazy kid and not sitting down at a keyboard sniffling back snot.
Maybe I’m sharing some of her magic with you.  That’s a consolation.  But it’s a very small one, as I would by far rather be greedy and keep all the Rebecca to myself.
Plus, if we’re listing the people who have done their best to capture the essence of Rebecca in words, I’m not even the best writer.  That honor would go, as it should, to her father Eric, who has written a beautiful fucking essay on what the cancer has done to her, called “The Thief Of Light.”  If you want to know what Rebecca is, then go and read it, because he sums her up far better than I could.
(And my wife wrote a very brilliant essay herself on fighting cancer, which summarizes my surprising reaction.)
I’m glad you’re responding to Rebecca.  I really am.  But there is a bittersweetness of that that sticks in the throat for me, because Rebecca is well-known in certain parts of the Internet now, and some will be heartbroken when she passes.  Which is much better than anonymity, I suppose, more than most terminally ill kids get, but it’s not as much as a Rebecca.
So what I’d far rather hear than “You immortalized her” (which I didn’t, and never wanted to) was, “I was so moved that I donated my time and/or money to try to stop this horrible disease.”  And I know not everyone can; you’re all busy, and have your own causes, and bills to pay.  But what would make me feel best about Rebecca would be to know that we found a reliable cure for, at least, this type of brain tumor, and that nobody will ever again go through what we had to go through.
Our pain is public.  And as Spider Robinson once wisely said, “Shared pain is lessened; shared joy, increased — thus do we refute entropy.”  And so I thank you for listening.
But once experienced, pain is always shared.  There’s a part of me that can never sleep, knowing that someone else is enduring this.  And I’ll do what I can to end that for them, and for Rebecca.  Because every child is special to those who love them.
Actually?  Every person is.

Uncle Tommy, My Patron Saint Of Sick Children

With Rebecca dying so quickly, I talk to dead people and wish they would respond.
Mostly, I talk to my Uncle Tommy.
Tommy would have understood.  Tommy had hemophilia, which meant that his blood clotted terribly slowly, which meant he could bleed to death from almost trivial wounds.
Back in the 1950s, hemophilia was pretty much a death sentence.  So Tommy spent literally a third of his life in hospitals – if he fell off his tricycle, he got sent straight to the Emergency Ward for transfusions.  He got so many needles stuck into him, and got so used to being on the children’s ward, that eventually the nurses brought him in when other kids got hysterical about the needles.  Tommy showed them it was no big deal, calmed them, this six-year-old kid with the big bruises everywhere.
When he got older, being something of a self-taught expert in phlebotomy, the nurses would actually let him give the other kids the shots.  This would never fly in these days of lawsuits, of course, but I’m told that the kids started requesting Tommy because even at eight, his hands were so certain and gentle that the shots never hurt.  And having had the privilege of Tommy’s hugs, I believe that.
And he was surrounded by dying children.
Tommy didn’t talk about it much.  Almost all the direct evidence I have of this is one drunken night with Tommy, when we went to New York on a weekend trip (as we often did) and got hammered, and Tommy talked about his childhood.  He didn’t consider it weird.  He had no other comparison, really.  He knew, objectively, that other kids didn’t spend ten days out of every month laid up in a hospital bed, but that was just like reading about kids in foreign lands.
And I remember him crying.  Tommy didn’t cry all that often, so it was a terrible thing, to see Tommy’s tears.  But he talked about his best friend on the ward, a kid he loved, who died.  I think it was leukemia that took his friend, but that could just be me filling in the details, and in the shadow of Rebecca that feels like a sickening gap.  Somewhere, in a hospital, there were two best friends and one of them died, and only Tommy lived to carry on this boy’s memory.  Then Tommy died.  And I don’t really know how I’d research that these days – the only person who might know is my mother, and she doesn’t recall – but Tommy’s best friend is lost in time, and even Tommy only survives, really, because he was lucky enough to have a writer-nephew who picked up his tale.
I think of that bobbing river of time, carrying us all like flotsam out to the sea, our memories sinking to the bottom of something dark and unseen.  Our lives, weighted and ultimately forgotten.  And I tremble.
And I think of how comforting it would be to talk to Tommy now, to ask what’s going through Rebecca’s head. Rebecca’s always been stubborn, slow to explain; you always got the idea she had a richly-imagined interior, but only allowed you tiny glimpses of it.  We thought we’d have time to work through that.  As it turns out, we won’t, and sometimes I just wish I knew what to say to Rebecca to help her, but I know that hammering on a kid until she shares is rarely helpful.
But Tommy would be my patron saint of sick children.  He’d know what dying children think.  He was one, once, and they were his companions.  He’d be able to tell me what he felt at five, knowing that he wouldn’t live until next year, how he processed it back then.
Tommy was forever warped by that experience.  Medicine caught up with him, every year brought a new life-saving technique that gave him another two years to live, and he surfed that all the way to his mid-fifties.  When transfusions and platelets became standard enough that Tommy could relax, he got HIV from a transfusion.  When he survived HIV for long enough that the first waves of good drugs finally hit, Tommy got hepatitis.  It was pancreatic cancer that finally took him down, and I’m still stunned that it did.  He seemed invulnerable – not untouchable, as he was frail and wheelchair-bound and groaned whenever he moved, but there was something implacable about his will to live.
But the time changed him.  He never really could make long-term plans.  Anything more than eighteen months out might as well not have existed to him.  That was glorious for a teenager, of course – he’d take me on shopping trips, pile music CDs and books in the cart, pay for it all with a credit card that he never thought he’d be around to pay off.  He focused on me in a way that a man with a future might not have, dropping everything to call in sick to work so we could go on surprise trips, bringing me into New York, and God how I loved him for that.
I look back on what he did with a man’s eyes, the eyes of someone who has a career and a mortgage and a job, and see how terribly irresponsible Tommy was.  But he was good for me.  He lived only for me, some times.  I was the last person he called before he died, literally an hour before he gave up the ghost, and we talked of books and how I was coming out there to stay with him until this was all over, and I suspect that part of the reason Tommy died that night is that he didn’t want me to go to all that trouble.
He died an hour later, in the hospital, alone.
But I was with him.
I know I was.
And I talk to Tommy, and I ask, So what’s Rebecca going through? and I don’t get a good answer.  My memories of Tommy didn’t hold that wisdom – he passed onto me everything he thought was valuable, but he didn’t think I’d ever need this and neither did I.  And hanging with my Tommy-ghost is still comforting, but with that the barrier between life and death is thick, cloying – Tommy could tell me, there’s advice he forgot to give, and what I wouldn’t give to sit by his couch one more time and help him set up his needles and watch Star Trek and ask, “So what happens when you’re young and know you’re about to die?”
I can picture him nodding.  I can picture him opening his mouth.  But I cannot picture the words he’d say, and I know he’d say something good, and it’s not there.
It’s not there like Rebecca won’t be there.
This world is gaps.  Full of empty spaces where we can’t quite connect to each other, which we bridge with assumptions and misunderstandings and forgivenesses, but there are still times when even my wife of fifteen years still does something and I have no idea why she did that.  I can ask her, of course, but it’s just a reminder that we never really truly know someone else – we know them in percentages, a little download bar filling up that never quite finishes.
Rebecca has an emptiness.  I want to ask her what she’s thinking.  But she was never a sharing child, and now she’s lethargic because the cancer is sapping her energy, and frankly dredging up those concepts would only help me and not her.  She’s already a kid in a fishbowl – you can see how she kind of misses the days when she was overlooked, when she could eat without a hundred nervous eyes watching her every move, searching for new symptoms – and pressing harder would be an unkindness.
But I could ask Tommy.
Oh, Tommy, I know I could ask you if only you were around, but you’re not, and so I ask you something else: please shelter her.  She will be alone and scared when she gets to Heaven, and yes she’ll have her grandparents, but she won’t have Uncle Ferrett and I’m egotistical enough to think that her Heaven won’t be quite complete without me.  You’ve been there, with all the other dead, and maybe this is a lie I tell myself to feel better like all religion is, but please.
When Rebecca gets to Heaven, take her hand.

All The Love In The World Is Useless. All The Anything In The World: Also Useless.

There is a little girl.  If she is lucky, she will hit six before the brain tumor in her head kills her.
It won’t just kill her, though.  “Her” is an abstract, a body hitting the floor.  Her is Rebecca, and Rebecca is my glorious little thug.  Rebecca the stubborn, who at one time when asked to say “Thank you” to get her favorite dessert from Aunt Gini, steadfastly refused to say anything despite half an hour of coaxing.  She didn’t get the dessert, but she gained a curious kind of respect from us all – maybe we didn’t understand why she refused, but the kid had made a decision and stood her ground, never throwing a tantrum, simply refusing to give in to this adult peer pressure.
Rebecca is my glorious companion in untruths.  I take it as a point of pride to lie, and lie flagrantly, to small children, just to introduce them to the idea that not all grown-ups tell the truth.  So I tell increasingly large and crazy whoppers until it all falls apart and they stare at me in half-horror, half-bemusement, saying, “Uncle Ferrett!  America was not founded by sentient otters!” and I say, “Show me where it says otherwise.”
Rebecca, however?  First time I tried that trick with her, she just gave me the stinkeye.  “Yeah, right,” she said, a liar able to spot one… but kept returning, asking me questions about things to hear my crazy lies with great interest.
Rebecca shows me her love not with words, but with little pokes and teases.  The Meyers are a very kind and loving and fair family.  They do not trade in insult.  But Rebecca longs to, and she knows I’ll give as good as I get, so she will come up to me and tell me, “Those are silly nails,” and then I will say, “No, they are glorious.  You are the one with ugly nails.”  And then she will say “They are purple!” and shove them in my face as if “purple” was the most wonderful thing in the world, and then I will say that mine aren’t chipped at the edges, and then she will be dead within the month.
That is not a lie.
Dead within a month, probably.  Hard to tell with cancer patients: anyone who gives you a firm deadline is trying to make it easy for you.  But the brain tumor nestled inside her skull has grown to twice its size, and she has already run low on energy – a little crazy fireball flinging herself around the lawn simply watches TV now, too tired to move – and oh, how her fingers tremble when she eats her string cheese.
She’s grown a couple of inches.  The rest of her body doesn’t know she is about to die, so it’s proceeding like everything is normal.  They had to buy her new clothes, if I recall.
Dead.
SHE
IS
FIVE
YEARS
OLD
She will probably cruise across the six mark next week, on her birthday on the 7th, but how much longer she’ll get?  Unsure.  Every chemotherapy we threw at her, every experimental treatment, has failed.  At this point, the only thing we can do is maybe cut into her brain and try to remove part of a tumor that refuses to stop swelling, a tumor entangled with all of her thought centers, and it is almost certain that this would terrible things to Rebecca’s remaining days.
And when we got that diagnosis, the one where the doctors gently all but said, “It’s over, go home and love her for the rest of her life,” the silence was a shriek.  It was a two-hour drive back from Pittsburgh – we left a little later because all the doctors came to hug Rebecca, who they loved, but realized they would never see again once we took her back to Cleveland – and that trip was deep-sea grieving, silent, pressurized; if we had let ourselves weaken in any way, we would have been crushed under an ocean of salt tears.
We cried in little luxuries, clenching our fists, scrubbing the tears from our cheeks like they were alien invaders, and Rebecca slept in the back because Rebecca, vibrant and feisty Rebecca, was tired.  So tired.  And not just brain-tired, though I’m sure the swelling intracranial pressure had a hand in it, but to shove a five-year-old in front of her mortality is a terrible thing.
You know what happens when a kid dies?  She worries about her parents.  She’s told Eric that she is terrified that her death will hurt Mommy and Daddy forever… and it will.  She’s cried because her younger brother, who is sunny and three and her best friend and mostly-unable to fathom what’s going on, will not remember her.  She was upset this morning, bitter at her sister and brother because they get to stay and she doesn’t.
All of those thoughts will vanish.  Deleted.  Like a virus-eaten file, everything that Rebecca is and could have been was gone, and fuck the heavens there are not words enough.
And minutes after the diagnosis, after Gini and I had offered to leave the room so Eric and Kat could tell Rebecca that the medicine hadn’t worked and she was going to die – imagine having that talk with a kid in a stroller – I was very good.  I did not punch walls.  I did not throw chairs through windows.  Mostly because it wasn’t the hospital’s fault.  They had done everything they could, assisted by Kat’s able medical knowledge (Kat is a doctor, and the conversations she had with doctors in my presence spiralled rapidly out of my casual comprehension).
But I thought of taking a bullet to my head.
I had never really understood the concept of dying for another human being.  I mean, I knew people did it, but I never knew anyone in serious enough trouble that it was an option.  My grandmother and grandfather were senile, yes, but they’d lived good long lives; my Uncle Tommy, my sainted Uncle Tommy, had survived hemophilia, HIV, and hepatitis, so I always thought he was invincible until pancreatic cancer took him.
But Rebecca.  I would clasp the barrel to my head, if the person pulling the trigger could guarantee her life.  I imagined saying apologies to Gini as I did so, but Gini?
Gini would have also been there for the bullet.
And Eric and Kat might well have been shoving me out of line.
I knew of at least four people who would give their lives for this child, this darling truculent stubborn-ass snarky girl with the wild hair, and there was no one to take the offer.  We stood in the great hallways of the place with the most power in the world to do this, all the might of American medical research aimed straight at this child’s brain, all our technologies marshalled to save her, and the time was short and this tumor wants to kill her inasmuch as it mindlessly “wants” anything, and…
…I slumped next to a Batman playhouse meant for other children.  I didn’t know how many dead children played with that Batman playhouse, but I knew the number?  Was nonzero.
This was where society did everything they could, and society failed.
There is no force on Earth that can save Rebecca.  That is a cold thought.  That is a thought that drains the water from you.  Whenever we hear, “There’s no force on earth that could,” we’re trained by movies to think the superhero will be coming, the brilliant scientist will be coming, the miracle will be coming, but no.
We have scoured everything on Earth, and the Earth is insufficient.
And so everything we love about Rebecca will fade to photos.  And we will go on cancer walks, walking with the photo-ghosts of other children, raising our dead high to marshal funds in the hopes that maybe future children can be saved.
Yet the only way we can save future children is to rearrange, discover, and build things that have not yet been built.  It’s some comfort to think that we’ve raised tens of thousands of dollars to help future children, and maybe some of that money will pay the salary of a smart woman who cracks the code on the anaplastic astrocytoma, and then there will be no Rebecca.
Yet there is nothing now – no love, no science, no willing God – that can save her.  We join the ranks of millions of other humans who have watched helpessly as disease ravaged their child.  It’s an old war, perhaps the oldest, and in one sense Rebecca is just another casualty.
But she is ours.
And there will be love.  We will care for her.  We will bring her ice-pops, and carry her when she is too tired to walk, and brush her hair, a huge pyramidal stack of love – the Meyers support Rebecca, we support the Meyers, and last night I had at least twenty people who didn’t know the Meyers supporting me.  This is the beauty of mankind, and don’t you dare tell me that humanity is not kind; yes, we have moments of savagery, but I watched the faces of the doctors in the children’s oncology ward yesterday, the cost of it engraved in their faces, and yet they showed up time and time again to battle diseases that they often lost, just in the hopes that one of them won.
I grabbed the man who told us that Rebecca would die, and thanked him for doing it.  Not for the message.  But because someone had to tell us, and I knew what toll that must take on him, relentlessly informing parents that there was no force on Earth.
And yes.  Love is wonderful.  Love will make this better.  Love will ensure that we get through this, as when it is all done we will cling to each other like survivors on a wrecked boat, reaching hand to hand, seeking warmth, trying to repair whatever wreckage is nearby into survival skills.  We may, in time, rebuild.
But all the love in the world cannot save Rebecca.  All the medicine cannot.
My darling goddaughter, my special little girl, will pass, and you’ll forgive me for being a little bitter about that.
(EDIT: If you want to help, then feel free to donate to the CureSearch for Children’s Cancer.  I’ve given them $500 of my own money, at a minimum; we may not save Rebecca, but that’s no excuse to leave other potential children behind.)