A Conversation

In The Solace of Wide Open Spaces, Gretel Ehrlich writes of hard won comfort after the death of a loved one, and of how her eventual peace is forged from the “absolute indifference” of a stark yet beautiful Wyoming landscape.  Paradoxically, given the title, she also writes that true solace is finding none, which is to say, it is everywhere.

Perhaps.  But for me, solace is not independent of place.  For as long as I can remember, both my equanimity and unbridled joy were most assured beneath the biggest of skies.  Psychology – pop and otherwise – likes to tell us that we are happiest when we can simply be ourselves.  And it is here that another Ehrlich quote resonates most:  Everything in nature invites us constantly to be what we are. We are often like rivers: careless and forceful, timid and dangerous, lucid and muddied, eddying, gleaming, still.

For the last six months – hell, for the last nearly three years – I have been that river.  I have also learned that I flow2618fcd1eb602ab1a81d3cbe931f4fbe best and clearest either when crisis is right before me, or when I am amidst the landscapes that have always burnished my rougher edges.  And so I ran her favorite trail today, amidst the scents of pine and sage and beneath russet slabs sent aloft nearly 300 million years past.  Along this trail, and in the town below, she is everywhere, so it is fitting that she lies right where they merge.  As I have done several times since last January, I ran to her.  In past visits, I found myself saying a few words, shedding a few tears, mostly just sitting with her.

IMG_6983Today, I talked at length.  Talked to her of life and love and of how she lives on in the hearts and minds and actions of so many.  Told her stories of things people have done since she passed, friends and family alike, that would fill her with joy and pride.  Told her of the recent horrors in the world too, of the hate and fear and violence, of how now more than ever the world needs people who live as she did.  Told her of the incredible poise and grace and courage at her service that emanated from her sister, her stepchildren, her close friends.  Of how she herself set the tone for that service by asking for the band that was so completely perfect. And of how her daughter, as she has done without fail for the last nearly three years, continues to lead the way for so many of us with the kind of joy, curiosity, resilience and generosity that defined her mother.  As I rambled on, I started to ask her the big questions that lie before me.  And then I began to feel her answering back.

Wait a minute, you’re now asking, what kind of mumbo jumbo séance BS is this?

Sorry to disappoint, but no paranormal tales to tell.   I simply did, in a small way, what flows throughout Ehrlich’s book:  put in a bit of physical effort amidst a wide open space, so that the cacophonies of daily life could fade away and the voices I want most to shape me could be heard.   And as I talked of my hopes and dreams and sorrows in a new reality I still cannot always grasp, I could hear her once again.  Hear her remind me to live boldly, generously, fully.  Remind me to pour my energies into what matters most, and to lift myself by lifting others first.  Remind me that there is no greater solace and joy than that which comes by being generous, by being endlessly curious, and by never being afraid to fail.  Remind me to listen to what’s deep inside, and to take the big chances before me, even if some of them crash and burn.  And remind me that all of this is best done with the kind of shit-eating grin she wore better than anyone.

I can’t match the grin.  But the rest?  It’s a map I can follow.

An Epigenetic Life

Years ago, Diana and I sat upon a high bluff in the northeast corner of Yellowstone Park, watching wolves. For a time, they and we were equally immobile, all of our breaths suspended visibly in the quietude of a subzero December day. We were cold, but the pack – eleven of them all told – was at ease. They formed a monochromatic arc across a snowbound hillslope, each black, gray or white dot brought into stunning detail by the spotting scope before us. Occasionally, one would arch a back or scratch an ear, but that was it.

Until a coyote showed up.

The intruder picked his way along a swale far below the pack, occasionally cocking his head and thrusting a muzzle into the snow, while twenty-two eyes tracked his every move. Eventually the insult became too great. Three of the wolves, two white, one gray, began a steady and purposeful trot down the hill. The coyote stood tall, marked their approach…and ran like hell. Apparently convinced his prospects were dim in the open riverlands, and blocked by the wolves on the valley’s southern slope, he sprinted straight for us, veering late to cross the Lamar highway in a mad dash for the lodgepoles above. He made it, but with the wolves close behind. When the three returned to the valley a few minutes later, they told no secrets of what had happened amidst the trees.

It was a stark reminder of how the neighborhood had changed. Soon after the thumb_diana_elk_1024reintroduction of wolves to Yellowstone, elk and deer and coyotes who once did this…now had to do that. In turn, many plants and animals that for so long just couldn’t…well, now they could. Add it all up, and within only a few years the whole place was different. In the language of ecology, Yellowstone wolves are now an oft-cited example of a keystone species. When they are there, you get one thing. Take ‘em out, and pretty much everything changes.

This morning, as I took my first sips of coffee, I read an extraordinary facebook post from Scott Ferrenberg. It was one of those rare posts where a simple reply doesn’t cut it. Instead, I went for a run, mulled it over, and perhaps in an ode to Scott’s scientific brilliance, found three ecological concepts jostling for position in my mind. Keystone species was the first, for when you lose someone so fundamental in your life far before they should go, you cannot help but wonder if your entire ecosystem will cascade into something unrecognizable, devoid of a magic it once held.   Perhaps you know that their introduction to your life built that magic in the first place. Perhaps you know that it did so for countless others too. And so you ask: if she is now gone, how can the rest not follow suit?

But then I thought of a second concept, one that was brought into rather than born of ecology.  Resilience.  Herein lies the yang to keystone’s yin.   A truly resilient community can take the hit of losing any one of its members and keep on rollin’. Perhaps not without a dip in the road, perhaps not just as before, but fall apart? Nah. In ecology, as is our wont, debates are endless about what resilience truly means. It all reminds me of a moment years ago, when I sat amongst a group of ecologists while a prominent reporter from the New York times scolded us: too often, you scientists use details like a drunkard uses a lamppost – more for support than illumination.

Because the thing is, sit any one of us down and cut through those details, and we know what it means. Can you take a punch? Or not?

Diana’s physical resilience was both quantifiable and legendary. If you told her she couldn’t do something, you should bet on the over. The first time I ran with her, she sprained the hell out of her ankle, five muddy and rooty miles from home. She ran back. Then ran the same trail the next day, ankle taped and looking like an overripe cantaloupe. And I’ve already written here of an otherworldly strength from the day she was diagnosed to the day she passed.

Less obvious though (until perhaps this past year) was a mental resilience unlike any I have known. It wasn’t that she didn’t get down. It wasn’t that crappy stuff wouldn’t get to her. She didn’t pretend otherwise. But somehow, she imposed a brief time limit on any storm that came her way. She’d sit in their midst, feel their effects…and then usher them aside. For real, and for good.

Which brings me to the last concept. Nature vs. nurture is old school, something on all of our radar from adolescence, if not before. Amidst all that, we were taught that when it comes to our genes, you get what you get and the whole nurture thing has to work within those ground rules. Have brown eyes? The surroundings of your life will never make them blue. Topped out at five-foot-six but want to play in the NBA? Well, maybe you will (see Webb, Spud), but no person, place or thing can give you that extra foot.

Then along comes epigenetics to screw it all up for us.

Formally, environmental epigenetics refers to traits that not only get switched on at the genetic level because of something in the environment, they can be passed on to offspring once that switch is flipped. Think about that one too much and it will start to mess with you. But before you start yelling wait a damn minute, they told me in high school biology all that Lamarckian stuff was crap….well, for the most part, it is. Charlatans and soothsayers aside, if you suddenly develop a true inner peace you can’t genetically bake that into your kids’ DNA. Still, there’s a reason this is a burgeoning and fascinating scientific arena, for like the best of science, it’s tossing some traditional notions on collective heads and making us all rethink how heredity might work.

Which brings me back to Scott’s post, and the juxtaposition of keystone and resilience. As I wrote recently, of late I feel a dose of resilience I couldn’t necessarily predict only weeks ago. Is it partly a product of what was in my genes from day one? Maybe. Does it also emerge from the sum total of miles already trodden in my fifty years? Certainly. But to the latter, I know the miles I spent with Diana flipped a switch into a capacity for resilience not previously there. That I can smile and look ahead most days now because of what she built, not only in me, but in so many.  That I can look to this weekend’s celebration of her life with peace and even moments of joy.  And I know it will all be passed on to my children in ways once not possible.

Almost certainly, there is nothing epigenetic in any of this. Boil it all down and it’s classic nurture.

Yet it feels as though she changed our DNA. And that’s enough.

 

 

 

Renewal

Look at a map of the Pacific Coast of the Americas, and near eight and a half degrees north you will find a protrusion of land that resembles my misshapen second toe.  This toe is the black sheep of digits, first jutting awkwardly to the center, then over-correcting itself to crowd the largest of its brethren, as though seeking an escape.  I am not of this, it evokes.  I belong to something else.

So too is this peninsula wondrously disconnected from its neighbors. The jungles atop its corrugated landscape are bigger, wilder, and share a closest ancestry with forests hundreds of miles to their southeast.  Beneath canopies at times two hundred feet in the air are beasts of lore and ones you never knew, none of them ever far from an ocean that wraps all but a narrow bridge of this land, nibbling at its margins, a siren beckoning a return to a saline womb.  Near the westernmost point of it all, a hundred feet above the waves, you can hitch a rope around the dappled and buttressed tree of your choice and rappel down cliffs pockmarked with the fossilized remnants of a long distant sea.

It is a land of rhythms.  The morning starts before you can detect a hint of light, the relative silence perforated by asthmatic roars of howler monkeys.  And then, just like that, a soft gray light is there and it is day but it is not yet hot and you are afloat in a maternal peace.

Screen Shot 2016-04-09 at 1.43.45 AMIt is fleeting.  An hour later you already feel the heat, and you must decide what your day is about.  If you are lucky, perhaps you will spend it in the forest, where the canopy will not only shade you but unleash a great unseen river from beneath your feet to the air above.  And as the sun heats the land, the river will rise ever higher into the sky, pulling air from off the sea in its wake.  You will know this has started when the canopy rustles and you begin to hope for those moments when the breeze reaches all the way down to the forest floor.

Eventually, the atmospheric river is dammed by its own exuberance, countless tiny droplets coalescing as the sky turns dark.  Soon enough, water that only hours ago rushed past you in timbered pipes will return, sometimes in impossible bucketfulls that make you feel vibrantly alive.  Again, the howler monkeys are prescient, announcing the rain’s arrival before you hear the first drops on the leaves far above.

This is not a land of gradual transitions.  One moment it is still light, the next dark, and soon will come a palpable stillness.  The diurnal tug-of-war between land and sea begins to reverse, locked in an hour or two of impasse before a gentle breeze flows from the distant hills.  Until it does, you sit and you sweat. When you inevitably grab a cold beer, you may hold the bottle against your forehead for a time before putting it to your lips.  If there’s trouble in your mind, it is the most fragile time of day, for in the stifling quietude your thoughts ring loud.

For the last three months, the fragile stillness of my own life has come in the hours between my daughter’s bedtime and my own.  It is then that our loss aggregates into something more sinister and tyrannical, when it takes a form that threatens to conquer and consume.  Some nights I push back with a few songs on the guitar or a call to a friend; others I seek out the pain, willingly entering a sauna of grief I can feel in my bones. Sometimes I wonder how I can emerge. But I do.  And of late, tendrils of peace have begun to infiltrate this nightly stillness, and I find myself reminded of a longer rhythm in the sweep of equatorial jungle that has shaped so much of my adult life.

There too spring is a time of renewal.  In this land that can receive fifteen, even twenty feet of rain every year, very little of it falls in winter.  The dry season is short enough that its effects are not dramatic – most trees keep their leaves – but walk into the forest and you’ll sense that things just aren’t quite as alive.  You can’t see it, but this is true even beneath your feet, where in every thimbleful of soil are more tiny creatures than all of the plants and animals on Earth put together.  They’re still there in the dry season, and they’re chugging along ok – chewing on each other and the dirt around them a bit – but like the animals above them, it’s a lazy time.

Ah but when the rains begin, all hell breaks loose.  Those uncountable bacteria and their microbial cousins feast upon rivers of tea, brewed from the passage of rain over every leaf, branch, trunk and particle of soil.  In so doing, they quite literally breathe more, chemical building blocks of life passing in and out of their unicellular bodies as they boom and bust with a profound fervor, feeding themselves and the jungle above.  It all begins in April, and by May the canopy is awash in a brilliant green hue that is the province of young leaves alone.  Here and there, the green is interrupted by blazing yellow flowers of the eponymous mayo tree.

Some years, the rains take a break in late June, a time known as the veranillo. By then, the forest is in full swing, and its as though the gods want to step back, take a breather and admire their handiwork.  It doesn’t last long, and as July falls away to August, there are hints of a great cleansing to come.  Rains intensify, sometimes lasting all day.  By fall, they can become biblical, with those of September and October better counted in feet than inches.  There are days when a foot or more of rain can fall in hours, scouring the landscape, reshaping arterial junctions between land and sea as it all turns the latter’s edge from aquamarine to a roiling coffee-and-cream mess. Everyone hunkers down and hangs on until the sun finally breaks through and you can go have a look at how the land has changed.  For changed it will be.

In my own life, last year’s rains brought devastating change, the ensuing dry season an unequaled stillness.   It’s too soon to know what this season will bring, or the ones to follow.

And yet lately, the first drops of a spring unlike any past are tinged with something providential. With a sense that like the trees in a tropical land I love, I can be forged of the past, but it is this very construction that allows new life to bloom.

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Obliquity

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.

glacialflowers

Not Your Ordinary Stardust

Diana Nemergut was born on June 26, 1974.  She passed away with peace and grace, me by her side, on December 31, 2015.  She is survived by, well, me, her daughter Neva, her stepchildren Kaelan and Lily, her niece Sophia, her mother Sue and father Bill, her sister Elene, her brother George, and a nearly incalculable broader community of family and friends.  But this doesn’t begin to tell her story.  I’m not sure anyone could.

A magical moment in the early days of my professional arc came when I learned that all of us – you, me, your dog, your house plants, even your crazy Aunt Edna – are sculpted from the dust of distant stars.

11875011_10153132977315835_5840960975006124590_oIn my world, that stardust is at times flattened into coldly clinical spreadsheets that list percentages from a periodic table. Those rows and columns can tell you a lot, much of it more full of wonder than you might guess. They would also tell you that people look a lot alike, certainly if you’re stacking us up against the house plants. But they can’t tell you something we already know: what the stardust that forms each one of us creates is far from the same.

I like to think that in a precious few, the dust arose from stars that burn hottest, shine brightest, send their light into unimaginable corners of our universe.

Diana was one of those few.

Some years ago, she took me to New Orleans, just a bit after Hurricane Katrina devastated the city she loved.   Eventually, we went to the Garden District, the French Quarter, the places tourists go. But first we headed east on St. Claude to the lower 9th Ward.   And here, sixteen months past the storm, we found house after house still branded with spray-painted X’s, many of them bearing numbers in one quadrant that let you know how many bodies were found inside.

Eventually, we reached a neighborhood that was quite literally gone. Diana walked slowly from the car, stood beside a ruined foundation, and said that during her AmeriCorps days, there had been a park across the now desolate street. A park she and her team had fixed up, a place for children to play.   She had to walk down the road a bit and check a battered street sign to be sure this was the spot. She was crying.

We drove block after block of the 9th and beyond, me nervous about the dangerous reputation of this city as our bright blue rental car drew the occasional cold stare, her simply mourning the loss of neighborhoods she once knew. Neighborhoods nothing like those of her youth but into which she still poured her heart and soul.

That night, we walked from the Marigny to the edge of the Quarter, retracing routes and haunts of her 19th year. On one dimly lit corner, a man approached, black, poor, a little unsteady. I began to steer us away, but she broke off and walked up to him, asked how he was. He gave her a radiant and toothless smile and said I’m awright, I’m awright, could use a little help, get somethin’ to eat. She handed him twenty bucks, asked if he was doing ok after the storm, joked a bit about where we should go to find some music. Then he gave her a bear hug and walked off with a y’all have a wunnerful evenin’ while I stood shamed but also awed by the extraordinary woman beside me.

Because this was Diana. She didn’t care what you looked like or where you came from. Check that, she did: if you had a bigger hill to climb, she wanted to give you a boost. If you were adrift, your confidence shot, your bearings uncertain, your bestowed advantages not those of others, she sought you out, picked you up, provided the fuel that could power your launch. The less you thought you fit, the more devoted she was to changing your mind.

And then there was her work. In its intended form, science should be driven by boundless curiosity, assessed by the data alone, never constrained or misdirected by the human frailties of ego or bias or deceit.   In its very best manifestation, these principles somehow fuse with the beautiful human trait of generosity so that others are lifted, their own spark of curiosity lit, such that science and its practitioners alike reach a higher plane. I know a few remarkable people who achieve this alchemy pretty often.   But only one seemed to have it define her every single professional day. Diana. And from that arose the most creative and generous scientist I’ve known.

Strength. It’s a word I’ve heard a lot in the last year, sometimes applied to me. Bah. I’m just scratching to get through each day. You want to find true strength? Look at the life she led.   Think about what it really meant to be a young girl who had scarcely left rural NY, who endured an unspeakable hardship in her early college days….yet who responded to that by choosing to go to the heart of a southern city she had never seen, and then once there decide to throw herself into its poorest neighborhoods, just hoping to help those most in need. Think about vomiting literally every day of your pregnancy past the eight week mark yet running all but three of those days, even the one on which your daughter was born. Think about the strength it takes to be unfailingly generous,  unafraid to be wrong. Think about getting a death sentence and meeting that by going home to dance to Rebirth with your daughter. About running or cycling every single day of a grueling radiation and chemo treatment. About not only entering but winning races while chock full of drugs and a growing tumor and so dizzy you can hardly see. And about always choosing to lift the burden off everyone else, right to the very end, even as cancer was taking you down.

The closest thing I know to her strength sits beside me right now, a mini-Diana if there ever was one, the two of us climbing through 35,000 feet.   This is a little girl who has endured staggering hardships of her own, yet seems to meet each one with the same grace and care for others that defined her mother. On Christmas, her mom confined to bed, she wanted to take Diana her stocking and gifts before opening her own. On learning of her mother’s passing, she wanted to know how everyone else was doing.

Because Diana was her mother, one who brought the same grace and resolve and generous spirit to motherhood that she did to every other part of her life. Who showed that one could be at once an extraordinary mom and scientist and make the whole damn thing remarkably devoid of stress, even when circumstances screamed otherwise. Who took trains, planes and automobiles to a German conference on her daughter’s cancer after essentially forcing her way onto the agenda, simply so that she could make the best possible decisions on what Neva might need. Who would stop at nothing to give her daughter not the modern trappings of material success but rather the foundation of a healthy, happy, connected life.

In essence, Neva began at the base of the mountain that became her namesake, Diana and I in camp chairs, lost in wonder beneath a Perseid-lit sky. Years later, we found ourselves in the same spot, only to depart minutes later as Neva announced her imminent arrival.

Two hours from now, this plane will bring that mountain into view once more, a few days before some of the brightest stardust ever to assemble is laid to rest in its shadow. But that stardust won’t be gone. One only need look up on a cloudless night to know it burns as brightly as ever.

Thanks to Bill Bowman for the beautiful photo of the Perseid meteor shower.

A Beautiful Life

As I thought possible last winter, if not probable, I’ve stayed away from writing about the past year, without question the hardest of my life.  But as Diana transitions to hospice care,  I felt the need to return.  We cannot begin to express how much the love and support from so many of you has meant – this week, this year, and beyond.  Also, this does not necessarily mean she has only days or even weeks left with us – while we don’t know for sure, the doctors expect that with a little good fortune, she may still see the flowers of another spring.

Cancer is responsible for the worst days in my life.  But none yet like the one about to come.

Sometime in the next few days, on the cusp of her seventh Christmas, I’ll tell my daughter that her mother will soon die. I’ll tell her because while Diana will be sitting beside me, for the most part, she can no longer speak.

I’ll tell my daughter because as unimaginably cruel as it all feels, she deserves to know.   Because when she looks back in the years to come, the serrations of her heartache will be softened just a bit by knowing she was a part of saying goodbye. And because somewhere in a remarkable soul that has always seemed far older than its pint-sized body, she already seems to know that goodbye is near.

I’ll have to find a way to tell her that the tumor in her mother’s extraordinary brain cannot be fixed, that some day far too soon she will simply not wake up. And then, perhaps immediately, I will have to reassure her that the tumor in her own still-forming brain, homonymous though the label may be, will not callously strip away her ability to speak and read and run and play and….live.

To find the strength to do the unimaginable, I’ll need to look beside me to forty-one years of a beautiful life. To a woman who has chosen to live the final phase of that life with the same grace and power and utter selflessness that defined every chapter of a story at once too short and yet as rich and lasting as any I know. I will look to this woman I would call singular except for the tinier version of her before us, and I will know it is not truly goodbye.

And that is how I will begin to climb out.

I will talk to our daughter of her mother’s bravery and love, shining as brightly now as ever. I will talk to her of the family and friends behind and beside us, of the fact that there are so many of these extraordinary people because of who her mother is, of how she will live on in every one of them. Of how most of all, she will live on in us.

I will do these things all the while knowing that the coming weeks will bring anguish beyond what either of us have ever known.   Knowing that in January, amidst all this agony, a still tiny six-year-old girl will once again have to climb into an MRI machine, the rest of us beseeching and praying that please this time universe just give us a goddamn break. Knowing that the fractures in our hearts will never fully mend.

But as an old friend said today, scar tissue can be strong. So as the weeks and months and eventually years pass, I will look to that little girl to lead me as much as I her…and I will know that she can.   For she already has.

And as those years pass, I will tell her the stories of the woman she evokes. Stories that at times will make her eyes wide, at times full of tears, at times dance with laughter. Stories of a woman who did not care what you looked like or where you came from but simply who you were. Stories of a woman whose determination and creativity and joy and thirst for pure knowledge were as unmatched as her smile, the whole lot somehow exceeded by her love for others, and for her daughter most of all.

When I hope the time is right, I’ll tell her how her mother was genuinely excited to be awake for a brain surgery certain not to cure her. How she exercised every day of a grueling six-week regimen of radiation and chemotherapy, begun nearly on the heels of that surgery. How she not only entered but won the last two races she ran, handicapped in each by a tumor making her so dizzy she could barely see straight.

And eventually, I’ll tell her that when the doctors walked in the room one fateful Tuesday in December and said the tumor was far worse and there was now little of consequence they could do, the first word she said was “Neva” as her eyes filled just a little with tears. And of how that first word had everything to do with the choice she then made to be home with those she loved instead of attached to yet one more IV.

I will tell her the stories of a beautiful life. I hope you will too.

 

 

 

Laissez les Bon Temps Roulez

Once again she has been taken from me for more scans, while I am asked to sit in a room we already know too well.  The light is soft, the paintings watercolor or blended oils.  Perhaps the attempt is deliberate to blur the hard edges faced by those who wait here.

Some enter with hollow eyes and a skeletal gait, while others arrive with tangible purpose and vitality.  But most are here as though part of the paintings themselves: not obviously different than people you might see anywhere, but for a slight beclouding of their normal borders and range.  I suspect we are all adrift, pathfinding in a landscape we would prefer not to know.

I catch myself wondering how many here are blessed with our abundance of loving family and friends.   I rewind three weeks or fifteen months and try to imagine those days passing without the tsunamis of support that have repeatedly born us away from dark moments to take another step forward…and sometimes even laugh while doing it.  I try to picture facing these challenges alone and find it unthinkable.

For those here who share our good fortune, they will learn that their supporters are also occasionally unmoored, wanting desperately to help but not always certain how.   The people who matter in their lives will want to make it go away, to take on some of the pain, to spark a moment of relief or remembrance or joy.  The real difficulty lies in the fact that they will do all of these things…except the first.

So how to help?  For us – for now anyway – we’re starting to learn that the answer is so simple and true that it is immortalized in a million greeting cards and memes and clichés all of which are some variant of the title above.  (Yes, Mardi Gras gets a lot of play in our house…).

Or a variant of Neva’s latest favorite song.

OK, sure, easy to say, but don’t we need to worry about stuff?  Don’t you?  Well…yes, and no.  Worry is inevitable, and informed decisions must be made. But we have the extraordinary luxury of living ten minutes from the best brain tumor center in the world, of working in the same university as that center, of having the professional training ourselves to understand the science behind what must be done.

We also have the luxury of who Diana is.  She eats a diet so healthy it is the source of frequent ridicule (another kale salad anyone?).   She has a resting heart rate of 40, ho-hum in the rarified athletic air of Boulder but startling enough around here to catalyze both digital and human alarm every time she’s hooked up to an EKG.  She is a woman of extraordinary discipline and drive, a woman who is quick to laugh, a woman whose mind is constantly working.

All of these things increase the chances she will be on Steven Jay Gould’s “right side of the curve”. (Seriously, go read his wonderful essay on cancer.)  They also give us the freedom to trust our medical team, to trust the remarkable attributes of the person receiving their care, and to focus on the positives.

And they give you the freedom to do the same.

By this I mean that if you want to help, as so many of you already have beyond compare, please trust that we and our medical team are making well-informed treatment decisions, and that Diana is getting the best care possible.  Please also refrain from asking questions about the treatment details as they evolve, or from sending treatment suggestions.

Those last requests are tough ones, I know.  When you love someone, you want the details, and you want to fix it, for anxiety and pain and stress flourish in landscapes of uncertainty.  But here’s the rub.  Those three little bastards are also parasitic, somehow finding ways to feed off every discussion of a treatment detail, off every consideration of some alternate path.  The best way to starve them out, we have found, is to focus everyone’s energy on the other elemental forces any cancer patient needs.

Hope. Joy. Laughter. Peace.

Whether you prefer your explanations to be rooted in biology or faith, or whether (like us) you do not find those to be mutually exclusive realms, these are powerful forces indeed.  It’s no aberration of statistics that those who continue to engage in life, those who emphasize the positive, those who truly cultivate hope from within are more likely to thrive – no matter what challenge they face.

It helps, of course, if you have legitimate reasons for hope and joy.  And we do.  Some of those reasons are medical.  Some are internal.  But some are the emergent properties of a staggeringly generous and diverse and loving and quirky and funny and all kinds of wonderful community in which we somehow have the great fortune and privilege to reside.  Whether you are across the street, town, country or world, we feel you out there.  Every day.

Never has that mattered more.

Post_surgery_mardigras