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

These Things You Cannot Take

My wife Diana was recently diagnosed with a brain tumor, the second brain tumor to hit our family in fifteen months. They are unconnected events – lightning striking twice unimaginably.  For the first one, still very much a part of our young daughter’s life, we shared a great deal here.  We may do the same for this latest challenge, or we may not.  It’s a bridge we have not yet crossed.  But on World Cancer Day, here are a few words.

I’ve had a recurrent dream since last Friday.  I am afloat on an equatorial sea, a sweep of beach to my back.  Before me, lines of aquamarine rise from the depths in metronomic intervals as though the sea itself is but the rippling skin of some unseen leviathan.

The waves begin to build, each one just a touch higher than the last, and in the crystalline walls appear the faces of those I love.  Five decades shuffled in varied combinations beneath gently foaming crests, friends and family alike displacing the occasional school of fish, coming towards me, around me, beneath me. It is beyond odd, and yet it is strangely calming.

And then, and then, and then.  The sky begins to darken, the waves’ translucence begins to fade.  The faces are still there, but with each passing they become more obscured by metastatic colonies of red and yellow and gunmetal gray.   I paddle furiously to get over the advancing walls as one by one the faces are overcome and sink slowly from sight before I am finally and inevitably hurled down into a lymphatic bedlam from which I never emerge but to which I cannot also succumb.

And then I wake, sweating, shaking and utterly adrift.

At some point when you are young, if you have so far escaped cancer’s direct clutches, you still become aware of its foreboding presence.  A little girl on the street, no hair on her head, a certain look in her eye.  The passing of a classmate’s uncle.  Maybe a hushed adult conversation on which you intrude, eyes tellingly moist as they assure you everything is fine.  Still, if you keep cancer outside your own meaningful circumferences it remains another formless threat – perhaps there, occasionally frightening, yet no more concrete than the mythical monsters beneath your childhood bed.

But unless you are very lucky indeed, someday it will come.

***

First you came for my grandmother, a woman of extraordinary spirit.   You were partially forgiven because by then she had lived a life in full, doing so even as she faced you down.

Then you came for my mother and father.   A Christmas drive from Colorado to Montana, the windswept Wyoming plains never seeming longer or more lonely as terms like biopsy and lymph node rattled ominously around my head.  My parents somber and struggling in previously unseen ways.  Years later, the same trip in a stifling August heat to a valley now obscured in the smoke of a dozen forest fires, the hospital furiously filtering the bad air, my father gowned and awaiting anesthesia.  But they each fought you off.

Then you came for our favorite dog, taking her before her time, taking her away from a toddling young girl whose love for that dog and its return were unreserved.  There were tears and anger and the dent you made was real and lasting but did not ultimately redirect the trajectory of our lives.

Then you came for the girl herself.  That’s when the shit got real.  She too has pushed you back because she is above all infused with a substance I have seen only once before. In her mother.

So of course, you have now come for her too.

You cannot have her.

You may beg to differ, countering with the daunting facts of a glioblastoma, one of your more insidious and awful manifestations.  But you would be wrong.  Because here is what you cannot take.

You cannot take that only hours after your diagnosis she came home and danced to the Rebirth Brass Band with her daughter, a brain tumor ballet of sorts, laughing right in your face.

You cannot take that the next morning, she went right back to discussing the joys of scientific discovery, before then cracking up the world’s most accomplished neurosurgeon with jokes about Bayesian statistics and an unsuppressed excitement that she gets to be awake when he removes all of you that he can.

You cannot take that what hurts her most in all of this is what it means not for her, but for everyone else.

You cannot take the magic she has brought to the lives of countless people all over the globe.  You cannot take the way she has transformed so many of those people into better souls, people who see the best in others, who reach out, who connect, who love and support and laugh and create a bit more every day because they saw her do the same from the very essence of her core.   Newtonian law says that for every action there must be an equal and opposite reaction, but Newton neglected to describe the instance in which that response is slowly built over a lifetime of daily action, such that the reaction manifests in a sudden and amplified tidal wave of support that threatens to drown you right the hell out.

You cannot take the fact that only five days since you announced yourself with this latest horror, our dread and fear is already being displaced by love and peace and resilience and hope.

***

Last night, the dream came on again.  Only this time, the advancing walls remained translucent, the faces intact.  This time I slide willingly from the board and join them.  I am enveloped, I am carried, I am gently deposited in the shallows while the disembodied faces become corporeal and sit around me.  Last to emerge from the shimmering sea are the two you have most recently sought to take, but here they are, closest to my side, whole and smiling and incandescent.

(February 11 Quick Update: Diana is home and recovering well from the surgery, which was performed by Dr. Allan Friedman at Duke, and as ever for him, was done exceptionally well. For now she just needs to rest and heal, before beginning the next phases of her treatment – those will start in a couple of weeks.  We are getting wonderful care from the Tisch Brain Tumor Center at Duke, as have so many other patients over the years. Unlike with Neva, we are not likely to chronicle every step of the way here for a number of reasons, but we will still share some more general thoughts now and then.  We have learned that sharing those thoughts can provide comfort to others, and that in turn provides comfort to us as well.  Our deepest gratitude to so very many of you our there for your support – it has been extraordinary.)

A Commentary on Doctor-Patient Communication

Just looking for the journal paper?  It’s here:  Nemergut_Townsend_JPEM 
More explanation below…

A great deal has happened since we last provided any updates on Neva and her craniopharyngioma.  We have changed jobs, changed states, and she has changed schools (twice).  We have gone through the wrenching stress of a rushed MRI for the fear of new tumor activity, and felt the flood of relief when it came back all clear.  We have begun the routine of giving a nightly growth hormone injection to a five year old.  And we have watched our incredible daughter handle it all with balance and humor and staggering toughness.  She’s doing great.  Soon we’ll write more about all of this.

But for now, we want to share one outcome of Diana’s April 2014 trip to attend the Kraniopharyngeom meeting Dr. Hermann Mueller organizes in Germany every few years.  The meeting is connected to the largest, longest-running study of craniopharyngiomas, and brings together experts in the disease from all around the world.  We cannot begin to express how grateful we are to Dr. Mueller for his kindness and help to us throughout the past fourteen months.  Diana’s joke to him was that if we ever had another child, regardless of gender, that child would be named Hermann!

Hermann’s kindness included an invitation to Diana to participate in the conference – a priceless gift as we tried to sift through so many threads of information to make the best decisions possible for Neva. That participation was quite real:  she was allowed to give a talk about our experiences as parents of a child with a cranio, allowed to be part of all sessions and discussions, and then invited to write a paper for the conference special issue that was drawn from her presentation.  We share that paper via the link at the top of this post, published recently in the Journal for Pediatric Endocrinology and Metabolism.   We’re posting it here in case it helps any other parents just starting to confront the long, complicated and at times frustrating journey of helping a child with a cranio, or with any other complex medical condition in which multiple specialities must be involved.

A Difficult Goodbye

It all began, inauspiciously, in a March snowstorm now twenty years distant.

Deposited by an airport shuttle at the wrong hotel, my faculty interview at CU-Boulder started with a call to the search committee chair at 12:30 AM. The call followed twenty minutes of parking-lot-pacing anguish: I’m at the wrong hotel….I don’t know the right one…I’m supposed to meet the search chair for breakfast in seven hours….I REALLY want this job….what the hell should I do?? Devoid of other options and now damp with a layer of spring snow, I returned to the hotel lobby and asked the surly attendant to borrow a phone. (Riggghhhht….back in the antediluvian no-cell-phone era…)

The search chair was awake – because only two days prior, he returned home from the hospital with his newborn son. Not exactly how you want to start the interview for your dream job.

But he was kind and unflappable, my initial hint of what suffuses the extraordinary place that would become my professional home for nearly two decades. A tropical ecologist at heart, I’d never even heard of the Institute of Arctic and Alpine Research before my interview, and prior to my arrival I worried about fitting in.

Those were unfounded fears. I discovered it to be a place full of ideas and energy, a place where people worked all over the globe, a place distinctly lacking in ego. A place where a wide-eyed new professor was never unfairly judged, unsupported, or unwelcome. That was true at INSTAAR, my physical home, and in Ecology and Evolutionary Biology and the Environmental Studies Program, my companion academic departments. They were places where you could do your job as you saw fit, where you could take a chance and not be afraid to fail, where you could see and feel and know that your colleagues had your back.

It became a place that launched a career, collaboratively built as can be. A place where exceptional student after exceptional student passed through my lab, each one blending hard work and the joy of scientific discovery with some pure adventure and fun. A place where I could grow into some academic leadership roles of my own and in them find far more support than B.S, far more collaboration than conflict.

It became the place where extraordinary friendships were forged. The place where I would meet and marry the love of my life, the wedding officiated by one of those friends, attended by so many more, everyone overlooking CU and Boulder from a Flatirons perch as we exchanged our vows. The place where our daughter Neva would be born…and where a community would rise up in extraordinary and heart-melting ways to support our family as she confronted a cruel twist of fate in her still young life.

In short, a tough place to leave.

Yet this summer, that’s what we will do. We always knew it would take extraordinary circumstances to pull us away from Boulder, but those circumstances have aligned and soon our family will start a new chapter in North Carolina. Neva will enter kindergarten not in the shadow of the Flatirons, but in a land of azaleas and long-leaf pines. Diana will join the faculty of the Department of Biology at Duke University. And I will begin a term as Dean of Duke’s Nicholas School of the Environment. We are excited, and we are humbled, by the chance to launch these next phases of our careers.

But we are also a bit heartbroken. The University of Colorado has been more than just a place to work. It has been home. We are profoundly grateful for all the university has given us, for all that Boulder has given us. We will miss those dazzling blue mornings where the Flatirons are coated in fresh snow. Those runs and rides on endless miles of trails that wind amidst ponderosas and flame-red paintbrush and 300 million-year-old rocks that burst to life in the setting sun. Those days or weeks when you pile in the car and get lost in the unmatched grandeur of the West. The West that defined my childhood, that runs through my blood, that I never thought I would leave.

But above all we will miss a dilapidated yet loveable workplace, not for its asbestos-laden ceilings, but for the people who work below them. We will miss the field work and bike rides and impromptu dinners with friends so dear I find it hard to even finish typing this line.

We will miss the people who have made this home.