Posts from June 2014

The Thief of Light

Published 10 years, 6 months past

When Rebecca was almost 17 months old, she had her first real Halloween — the year before hadn’t really counted, since she spent the whole evening sitting in her bouncy seat dressed as a chile pepper.  It was a big occasion.  We dressed her in her Tigger costume and sat on the front porch with the bowls of candy we’d prepared for all the trick-or-treaters to come.  She loved candy and was thrilled to be sitting with her big sister and all that sweet stuff, even if we did keep telling her not to eat it.

Right on schedule, the first group of trick-or-treaters came up the front walk.  Carolyn, who loves giving out candy far more than she does receiving it, deposited a few pieces in each bag.  Rebecca watched this whole process very intently.  She watched the kids walk away, and saw that another group was headed up the front walk.  She looked at Carolyn, then the approaching kids, then down at the candy bowl in her lap.  Back up at the kids, then back down at the bowl.

And then she leapt up and took her bowl of candy to a far corner of the porch, hunched over her candy, defying anyone to take it.

Now if you offer her candy, you might get a nod or just a shrug.  Taking it from her elicits no reaction at all.

While she was never a super-chatty child, Rebecca was verbal pretty early and always happy to express herself, especially in disagreement or, really, any other form of opposition.  She was never shy about speaking up, a trait we subtly encouraged even as we tried to direct it.  If she thought you were being silly, she’d say so.  “Well that’s just lame,” she’s become fond of saying in the last few months.  Always with a little smirk, unless she really was angry.  The Brits would say that she absolutely loved taking the piss out of everyone around her, and loved even more that she could get away with it by making her target laugh along with her.

She barely speaks now.  Early in the day, we’ll get a few short sentences in response to questions or observations, but she almost never speaks on her own initiative.  A lot of her spoken answers are a clipped “sure”, delivered in a flat, almost bored tone.  Most of her communication with us is in the form of head shakes, nods, and shrugs.  Toward the end of the day, they become so subtle that only Kat and I can be sure what she meant.

Rebecca was always athletic, running and throwing like a much older child.  Like a boy, we would have said in my unenlightened youth, but it was never really like that.  Like a gazelle, I once thought, knowing very little about actual gazelles.  She just threw hard and well, and ran hard and fast, and loved to do both.  I have pictures of her sitting on a trapeze bar, holding the ropes, and her posture looks like that of a seasoned circus performer, sinewy and controlled and poised to do great things.  She excelled in gymnastics, to the point that last summer they moved her up to an older class, placing her on track to join the competitive gymnastics team.

Now she can barely stand upright.  When she has enough energy to walk, she has the slow plodding gait of a clumsy toddler, weaving in unsteady curves from side to side.  When she reaches for something, always so slowly, her hands visibly tremble.  The most activity we see in her comes from obsessive, repetitive motions, pulling over and over at a loose thread or worrying the beads on a bracelet or picking tiny crumbs of food off a plate.

Rebecca delayed potty training mostly because she knew we wanted her out of diapers.  If we hadn’t encouraged it, she probably would have done it sooner.  But she put it off, and put it off, just because she could.  When she finally did, though, she was done.  There was no night-training period, and hardly an accident.  She just gave up diapers one day, on whatever impulse made her decide to do it, and never needed pull-ups after.

Until now, because she’s lost almost all control of her bladder and bowels.  At first she was mortified, but now the most she registers is a distant sort of anger at us when we change her.  We have to change her several times a day, and she just lies there, staring vacantly at the ceiling until we tell her we’re done.  Then, sometimes, she moves her eyes to look at us and wait for us to help her up.

She was full of energy, our Rebecca.  She was always dancing through life, Kat used to say, singing her favorite songs when there was no music to be heard and making a walk on the sidewalk into a skip-steppin’, butt-wigglin’ festival of joyful movement.

Now she sits inert for hours, staring off into space for long stretches of time.  We have to say her name loudly, and sometimes move her head to face us, before she suddenly snaps back.  Her eyes focus on us, the eyebrows raise a bit in query.  We ask her if she wants this or that, sometimes more than once, before she responds.  Sometimes, if she’s more with it, she’ll sit inert and look at one of us.  When I gave her a bath tonight, she sat up in the tub, but as the water rose, her legs floated upward with it, slowly tilting her body backwards until I had to put a hand on her back to keep her upright.  And the whole time, she stared half-vacantly at the chromed overflow drain cover.  At her reflection in it.  At the person there, who I cannot be certain she recognized as herself.

Everything we felt so fortunate to have kept, all her intact neurologic function and physical health and vitality, her ineffable sun-bright spark, have been leached away.  She is dying by slow millimeters, sinking further and further into a miasma of lethargy both physical and mental.  All her emotions crushed flat by the rising pressure in her head.

For all that, she is still Rebecca.  She shakes her head no when she knows we want her to nod yes, and if there’s no smirk to go with it, maybe we can see the faintest echo of a crinkle around her eyes.  When we verbally fence her to the point that no isn’t an option, she just looks at us as if she has all the time in the world to wait out our interest, her eyelids slid just a fraction shut to register her disdain for our feeble attempts to outwit her.

At bedtime, Kat read Rebecca “Madeline”, a favorite they’ve long shared.  Rebecca was so drained that she was basically asleep before we put her in bed, but as Kat started reading, Rebecca’s eyelids slid partly open, her eyes rolling a bit before the lids fell shut again.  Her eyes kept cycling through this, over and over, as Rebecca fought to stay awake enough to hear her mother read her a beloved bedtime story.  She kept fighting until the closing passge:

“Good night, little girls!
Thank the lord you are well!
And now go to sleep!”
said Miss Clavell.
And she turned out the light — 
and closed the door — 
and that’s all there is — 
there isn’t any more.

And as the last syllable passed Kat’s lips, Rebecca’s eyes stilled and she sank deep into sleep.

She lies sleeping on her back, her arms at her side as though not just asleep, but actually unconscious.  She has always been a side-sleeper, ever since the day she was born.  Now she lays inert, her head straight on her pillow, as if rehearsing for the casket she will never occupy.  But when a friend came in to give her kisses, she turned her head slightly, her brows drew together a bit in annoyance, and she folded defiant arms across her chest — still sleeping.

Her pulse is still strong and regular, and her breathing is slow and steady, the calm notes of a child at rest.  She relaxed her arms a while ago; they still lie across her chest, but separated a little bit.  Her jaw has stopped constantly working in her sleep, another new symptom we don’t know how to interpret.  Maybe she was dreaming of chewing gum, one of her favorite things in the whole world.  Maybe it was something very different, and much worse.  It still happens every now and again.

Earlier tonight, I was convinced by all these little clues, and a hundred more, that she would die tonight.  Now I’m not so sure.  The slow rhythm of her breathing gradually carried me from stupefied terror to a quiet reflection.  Now, as I stand guard over her sleeping body, I can look at her still, beautiful face without fear.  I can believe that she’ll wake tomorrow, no more herself than she was today, maybe even a little bit less so, but still going.

Still fighting to stay awake, stay alive, stay with us.

In Shock

Published 10 years, 6 months past

Today’s MRI showed that the CT scan two weeks ago was inaccurate.  The tumor has grown significantly, and two of the flare sites are larger.  We’re out of the p28 study.  There are no other studies we or our doctors know of that can help.  Surgery is off the table.

Rebecca has a few weeks left at best.

We’re starting steroids to reduce swelling in her head, in hopes of restoring her to something like her old self.  And we will make whatever time is left as fun and amazing as we can for Rebecca and Carolyn and Joshua.

I built a memorial page for my mother, eleven years ago.

I’m not ready to make one for my daughter.

Stress Fractures

Published 10 years, 6 months past

As word of Rebecca’s diagnosis spread throughout our network of friends and acquaintances, we are told, more than one person said, “That’s why she was placed with the Meyers.  If anyone can handle something like this, it’s them.”

It’s flattering, I suppose, to be thought of that way.  Certainly it’s better than having people say, “Oh crap, that’s about to be a Category 5 train wreck!”  But how many couples were thought of the same way we were, and ended up separating?  Do they get marked in the false-predictions column, a lesson that we don’t know other people as well as we think we do?  Probably not.  Selection bias runs strong, especially when it comes to our assessments of others.  When our guesses about other people are right, we take it as proof of our insight; when they’re wrong, we tend to shrug it off as “people change” and forget that we’re often wrong about other people, never mind ourselves.

What concerns me is that this kind of thinking can easily lead to thinking that those who face crisis and stay together are strong, wise, noble — and that those who don’t, aren’t.  It makes a morality play of how people cope with events largely beyond their control, which is unfair no matter how things turn out.

After all, it’s not actually the stress of a crisis that drives people apart.  What breaks a relationship is how the people in it react to the stress, and (even more importantly) how they react to each other’s reactions.  Under stress, and particularly under extreme crisis, we are tested in entirely new ways, and our legitimate and honest reactions may or may not be acceptable to our partners.

To pick an example that didn’t happen, suppose that Kat and I had disagreed about where to take Rebecca for proton therapy.  One of our other choices was Bloomington, IN, about two hours closer to home than Philadelphia and definitely closer to several of my relatives.  Suppose I had decided that was where we should go, and Kat had decided that Philadelphia was best.

Already, that’s the seeds for a major conflict, because it is, in a very real sense, a life-or-death choice.  It’s not like arguing about where to go for dinner.  It’s a fundamental disagreement over a fundamentally critical choice.

Now, suppose that one or both of us reacted to other’s decision with outrage, panic, even scorn: “How could you think that way?  How could you endanger our daughter like that?”  And been met with outrage over the outrage, if you see what I mean.  Both of us being unable to understand how the other could act and react in such a way, when the right answer seemed so obvious.  That’s a fracture that will not easily heal.

Or, to pick another example that didn’t happen, suppose one of us had felt that they couldn’t stay in the PICU ward with Rebecca as she lay half-conscious, waiting for surgery after surgery.  Suppose one of us had stayed in a nearby hotel.  You might feel an instant, instinctual contempt for such an act, even knowing that it didn’t happen in our case.  We both stayed by her side non-stop, to the point that people started gently urging us to take some breaks away.  On rare occasion, we actually listened.

Come back to that contempt, though — how could a parent run away from a sick child?  Yet some parents do, and to judge them for that is contemptible in its own right.  Perhaps they know their anxiety, terror, and anguish would be so amplified by staying that they would do more harm than good.  Perhaps they know they would break down, become almost catatonic and unable to help anyone.  Perhaps they know they would go effectively crazy, and endanger their child and themselves.

Whatever the reasons, suppose one of us had stayed away.  How would the other have reacted to that?  With compassion?  Sympathy?  Feelings of betrayal?  Scorn?  Contempt?  Righteous anger?  All of the above?

Or more recently, when I cracked and had to set a limit for my own good, what if Kat had been unable to accept that limit?  What if what I needed was the exact opposite of what she needed, forcing us to choose which one of us didn’t get what they needed?  That sort of conflict can easily sow resentment, and resentment can easily become anger and contempt and worse.

It’s pretty easy to see how, no matter how deep their love, a couple might split up over such differences.  Maybe not in the throes of crisis, but sooner or later.

Had we had split up, people might have said, “Oh my, I guess they weren’t strong enough to handle it after all.”  That would sound true, but it would be a lie.  You could have the two strongest people in the world split up just because they can’t accept how the other deals with a crisis.

This really shouldn’t come as a surprise, even though it so often does.  It’s astonishing enough that any of us can find someone who’s sufficiently compatible to live with us full-time, with all our quirks and foibles and failings, someone who can accept the way we hang the toilet paper roll, squeeze the toothpaste tube, and load the dishwasher.  To have that same someone accept, let alone admire, the way we react to extreme crisis… that’s luck so incredible as to defy belief.

I’m not saying anything your local therapist or religious leader doesn’t already know.  They see this play out over and over, year upon year.  I just want to remind the rest of us that it isn’t strength that keeps a couple together in the face of crisis.  It’s having the luck to remain compatible under the most extreme pressures.  Like any complex interaction between two complex systems, the outcome is fundamentally unpredictable.  If an unresolvable incompatibility is uncovered, it doesn’t mean the people involved are weak or undeserving.  It just means they’re people.


(Just in case anyone takes this as some sort of veiled announcement, Kat and I are not getting nor plan to get nor have any expectation of getting a divorce.  We both hope it will stay that way — a point of compatibility all its own.)

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