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.)

How's This "Reading What You Want To Read" Thing Going?

At the beginning of the year, I posted an essay called “Shelf Awareness,” where I outlined a critical difference between “books I want to read” and “books I want to have read.”  And I vowed to only read books I was damn well excited to read.
I’ve been reading a lot more books lately, and loving more of the ones I do.  Which is awesome.
The interesting thing is how this decision has expanded my definition of “books I have little interest in reading, but will feel nobler if I manage to finish them.”  Because if you’d asked me before I started this, my “books I want to have read” would have included:

• That classic work of literature that I’d be Very Smart if I actually ever finished;
• The Very Deep author that all my friends love, but I’ve never really been able to get into;
• That well-reviewed book that’s a modernist take on faerie tales, even though I way prefer comic book mythologies to faerie tale ones and I won’t get half the references.

But since doing this, I’ve discovered that “books I want to have read, but am not actually that thrilled to read” include:

• That second book in a series, where I kinda-liked the first book that worked as a standalone, but don’t want to watch them enter Sequel Rehash territory;
• The second-tier book from an author I like, and even though everyone’s said it’s not that great I feel like I should read it anyway;
• That book I bought in a moment of weakness at a dealer’s table, and I feel like I should read it to get my $14.99 worth before I spent another $40 on books.

There were a lot of books I was reading out of obligation – because I felt, for some weird reason, that I’d read books #1 and #2, so I might as well read #3.  Or this book looked so shiny on the dealer’s shelf, but now that I’ve brought it home I should read it out of some weird penance, because dammit it’s wasted money otherwise.
And like the other “want to have read” books, reading those gave me a lot of false starts, where I’d get a third of the way through the book and drift off to another one that I sorta-wanted to finish, then get bored with that, and then there’d be a stack of books next to the tub because I didn’t want to put them back, that would be admitting failure, but I really wasn’t looking forward to picking them up either.
Now?  I order from Amazon at will (or at least as “at will” as a man with a $25-a-week entertainment budget can afford to).  I discard series wantonly.  I let my own excitement percolate, not allowing myself to value some form of “completion” over the satisfaction of having read.
I look forward to hopping in the tub and devouring a good book.  More books get thrown out, but maybe that’s the way it should have always been.

My West Coast Book Release Party: Borderlands Books, on October 11th!

Heya, folks!
If you’ve been living under a rock, you may have missed that a) I sold a novel, and b) that novel is coming out on September 30th.
But what you do not know is that I will be holding an official West Coast Release Party for Flex at Borderlands Books in San Francisco on October 11th!  I’m psyched, because the one time I went to this shop (which specializes in fantasy, sci-fi, and horror), I totally fell in love.  A love I expressed judiciously with my credit card and a bent back, staggering out of that store with an absurd load of books.  To get to do a reading/Q&A/signing there is totes exciting.
(I’ll also probably go out for drinks afterwards and invite you along, just to spend more time with y’all.  I like people.)
You may ask, “Ferrett, what about an East Coast Release Party?  Or, you know, a Cleveland one?”  And I’m still researching those.  Locally, I have some friends who need a bookstore that’s wheelchair-friendly, which rules out a surprising amount of local bookstores (as it wouldn’t be a party without those friends).  And if you know of a good New York-based bookstore that’d be amenable to a weasel, let me know.
You may also ask, “Ferrett, what about a Florida Release Party, or a Southern Release Party, or a European one?”  And the answer is that “Ferrett has a limited amount of vacation time, and family to visit on both coasts.  These Release Parties are tremendously exciting but also a net loss in cash, as there’s no way I’ll sell enough books at Borderlands to fund the airplane trip to San Francisco – so alas, this is not so much ‘a book tour’ as ‘Ferrett thinks this would be fun to visit his mother and throw this in.'”  While I’d love to visit your home town, I don’t have that kinda money to burn.  Three stops is the max.
But you can still order Flex from any number of bookstores in advance.  Which would be nice.  Authors live or die on preorders, so if you’re not gonna attend a release party but wanna celebrate, you can do a little dance when Flex arrives on your doorstep.

Maya Angelou Was A Sex Worker

One of America’s greatest poets was a prostitute at one point in her life.  She herself was unashamed by it.  I had not heard of that.
My hope is that, reading that, a lot of people will realize they have some pretty negative stereotypes about sex work.
My fear is that rather than reconsidering their opinions on prostitution, people will reflexively lower their opinion of Maya Angelou.  And that would be a goddamned shame.