Above the cacophony and endless misrepresentation of how Earth’s climate works, there lie some basic truths. One is that a seemingly little thing can lead our planet down a very different path, for a very long time. A certain slice of the ocean gets just a bit less salty. A reservoir of frozen gas, trapped for eons, begins to leak. Or one of my favorites: this lovely and always askew home of ours tilts just a little bit less on its axis.

That tilt is not a sudden event, but part of a cycle that takes far longer than any one of us will ever witness. But tilt back and forth we do. Over thousands of years, sometimes Earth stands just a little straighter up; sometimes just a bit closer to lying down.

And that can mean everything.

As it turns out, the straighter we stand, the colder we get. It all starts because the cold parts of Earth get even less of the sun’s warmth whenever the planet decides to improve its posture. That means more snow and ice, which in turn bounces more heat back to space.  Next thing you know, we’re in an ice age, everyone standing around asking how the hell did that happen?

Such has been my last two years.   Right as I thought I was more upright than ever before, the avalanches began. They started with an MRI, twenty-six months ago. That one led to an eleven-hour brain surgery on a little girl seemingly too small and perfect to either need or withstand the assault.

1602031_10202281897280171_1065723234_oAnd yet she stood back up, as she always does. Exactly two years ago today, I watched her nearly lose that newly repaired mind in Disney-fueled rapture. Two months later, oh shit oh shit oh shit another MRI….but hey wow all is ok, the vestigial tumor not only stable but miraculously pulling away from the optic nerve and hypothalamus that demanded the ominous little bastard be left behind in the first place.

Another year passed. More scans, more good news, a move, new jobs, new people, life not as it was but yet wonderfully bathed in the promise and hope only a new chapter can bring.

Oh but then.

She of the brain tumor already known sat looking small and frail, shielded by a pair of oversized pink headphones, her eyes on the tablet’s movie but her jaw noticeably set. For this was not a normal night. Mom didn’t get MRI’s – she did. And yet there she sat, hopefully unable to hear, as the radiologist on call tried to hold Mom’s gaze and struggled to say the words large lesion in the left parietal lobe, and another one down near the brainstem. As we somehow walked back down the hall holding each of her little hands in one of ours, the radiology tech jogged to catch us from behind and hand her a My Little Pony doll. His eyes red and wet. She wondered why.

I goddamn well hate MRI’s by now. The one I hate most was a year ago last night. One year ago today, we broke the news to many of those we loved.   I’m not sure which day was worse.

Eleven months later,  and one month ago, Diana took her final breath.  But not before my-god-how-does-she-do-it living through one cruel hell after another. I watched this astounding woman shoulder unthinkable burdens, still try to take on the ones of those around her, and somehow keep standing straighter all the time, smiling that smile. Right to her final moments.

I also witnessed a nearly uncountable number of people stand up themselves, doing all they could to take on some her, my, Neva’s pain. They did, and they still do. Some are blocks away, some halfway around the world, all were and are right here beside us every day. Let me tell you what, if you haven’t been here – and I hope you never are – that matters.

Version 2And then there are my parents. My god, my parents. Apart more than 100 days, the 100 hardest days, so my father could be here with us. Him taking Diana’s only good arm again and again, guiding her wherever she could still manage to go, sitting patiently with her as she struggled to get out a single word. Forging a bond with his granddaughter that is now unbreakable.   And making it possible for me to somehow get up, stand up, get through each day. I don’t know a finer man. I don’t think I ever will. When he and my mother left today, going home somewhat against their wishes, a hole opened beneath my feet and I’m falling still.

I sometimes wonder if I will ever stand straight again. It’s a question I’ve asked myself for exactly a year now.   It seared unbearably in the early days, but then, amidst the denial and distraction and desperate hope, it faded into an ever-present but more manageable ache.

Especially the hope. You see, I really did think she’d be the one to beat this, at least for a very long time. I wasn’t alone. She was too tough, too healthy, too determined, too everything to not even hit glioblastoma’s median survival time. Sure, it would probably take her eventually, but not before she watched her daughter enter middle school, maybe high school, hell why not college? So as I watched her body unravel last fall, hand, then arm, then speech, then sight, then leg, then….well it just had to mean the experimental treatment was working right? That it was all immune-stimulated swelling in her brain and not tumor, right? Right?!

No. For as much of an outlier as she was, so too was her tumor, even for one of the worst classes of cancer going. In some terribly beautiful way, of course it was, because she never did a single thing half-assed. If she was going to get a tumor, she was going to get a barnburner.

And so here I find myself, 31 days into a disembodied existence.   I maintain a patina of who I was: I ride my bike, I smile with friends, I chuckle wryly at the arguments and disconnects of academia. And I somehow navigate moments of who I was not: probate, powers of attorney, selecting coffins, picking up death certificates. Through it all, it is as though I am floating above, watching a recognizable yet robotic version of myself. Only when that little girl is beside me in a quiet moment do I feel at once whole and fragile and maybe, just maybe, able to heal.

Tonight, in one of these interludes, I thought to myself: here’s the thing about Earth. After a few too many centuries in one of these tilt-induced ice ages, eventually it too decides to hell with this and starts to lie back down. As though it just can’t take it anymore. But when it does, the ice begins to melt away. Not overnight, and not without a slow and staccato climb back out. Still, the day eventually comes when countless miles of ground once frozen and dark are ablaze in spring flowers.

So I’ll lie down for a bit. But when I do, I’ll know I’m already starting to stand back up.



3 thoughts on “Obliquity

  1. Beth Holland

    pain, to get in touch with our own pain and provides the strands that weave us all into a community of love and support for you and Neva, and for ourselves. I am inspired by your journey every single day. Here’s hoping to give you and Neva a huge in person hug some day. I, we, love you and Neva all the loopy way around this tilting universe, Beth

  2. Sarah Crews

    Alan, your words are so achingly beautiful and tender. Thank you for sharing your journey with such eloquence, rawness and honesty. I love what Beth said about providing us with “strands that weave us all into a community of love and support for you and Neva”. I am grateful and humbled to be a part of that fabric.

  3. Vincent Denef

    Dear Alan,

    Thank you for sharing your beautiful heart and mind on these pages. I only just now learned about Diana’s death… I hosted her here at the University of Michigan for a seminar on November 6, 2014. We hosted her at our house for dinner, and in her incredible kindness, she brought two little Duke mascots for our 2 year old twins, and went to play with them, which relaxed them and made them laugh as they were silent and very shy as always when a group of strangers was around them. Little acts of kindness is what brings light in this world and I hope you and you daughter will be on the receiving end of such acts for the rest of your lives… While I have never met you, you will be in my thoughts from now on. We will hold a moment of silence for Diana on Thursday at the beginning of our joint lab meetings, all people she interacted with while she visited us in 2014.



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