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Wednesday, July 15, 2015

July 2015 | Back Home


At 287 Plymouth Road, fantails flitter from bamboo to banana leaves, chestnut shoots to cherimoya. They dance above mounds of horse poo and decomposing twigs, following a man in his mid-50's on his daily stroll.


Nonchalantly he wanders through spindly peach and hazelnut trees, sprawling wild kale and pumpkins, clambering raspberries, fiery pink sorghum and the hundreds of luminous droplets of the tamarillo tree.


Always a few centimetres out of reach in their ceaseless inquisition of the Homo sapiens, the hyperactive little bundles with tails the size of their bodies tip and tumble through the air.


Above the party, fat Kereru lurch from one spindly tagasaste branch to another, their massive wings whipping the salty air – 'whoosh, whoosh, whoosh'. Their beady eyes peer down at him past their plump bellies. (In the summertime, they are often drunk off juicy harakeke berries. One flew into the kitchen window once, off it's face. Shattered glass everywhere. Now, they are subdued, peaceful).


I follow the sun as it trails around the old house. It peers in through paint stained windows from rise to set. I shiver, realising the time isn’t yet 3pm and already it’s begun its descent down to the ocean floor.


(Or should I say, we're too rapidly spinning, tilting away from this magnificent source of light, life. Our star. How grateful I feel for the messy, gassy perfection of our universe.)


It was over nineteen years ago when we moved here as a nice family of a mummy and a daddy and three young children. While that was to all change dramatically just months after the move, the house has remained; the cobwebs strung up about the dusty toolshed, the dark hallway my remaining brother and I played dodgeball in, the matching floral couches and cushions that saved us from hot lava, the doors you have to shove your bodyweight behind to open for the neighbourhood cat, the now-retro plates I once found embarrassing, the eternally dripping kitchen tap.


In this six-metre-square room on the sunset side of the house the 2001 Dell computer is still humming, an old Yanomami paper-mache figurine I made at school when I was six peers down at me over the CD stack, 100% Millennium Hits, Bob Dylan, Pink Floyd, Lazy Sunday, the Black Seeds silently gathering layers of dust.


Nowhere on earth feels so familiar.


And I wonder, why do I not feel different? Why do I not feel something, when I sleep in the very room that once contained all my dreams, hopes, fears? Why am I not brought to my knees when I visit my now-overgrown 'secret spot' down by the river I would escape to and cry and write melancholic poetry? When I see the nasturtium-covered stump of my horse chestnut tree, whose beloved limbs are now scattered across this new permaculture-food-forest that's taken over? Have I not changed?
And why, despite being thrown between feelings of guilt for not being 'productive' for my 'real life' and relishing in waves of utter comfort do I have a tendency to want to hide out away from the world each time I'm here? Why do I not rush to contact a dear friend with whom I spent countless delightful days running across the neighbours farms, climbing trees, having midnight feasts and putting on fashion shows?


I moved away from 287 Plymouth Road when I was sixteen. Hardly spoke to my dad for the few years following. It was a difficult time in both of our lives, and the angst, blame and anger stained this place for me, made it ugly.


These days, as I meander through all the new growth that now envelops the property, I wonder if perhaps it is okay to be a hermit, to want to share special, quietly transformative moments with the place I've despised in, loved in, fought in, been sick in, learned in, cried in and grown in.


For when I look at my dad now, his quiet satisfaction as he potters around his garden - his sanctuary - replanting lavender and searching for tomatillos, I feel okay with the bit of hermit within me. At peace with it. For I see something we've always shared, that I've fought for a while now but am coming to embrace.


My dad is the most loving person I know. He may have never received a guidebook instructing how to handle an opinionated teenage daughter as a single father, but he's always cared, and always been searching for his own bliss. And his bliss has always been here - his place to tinker, create, and simply be - at home.



Check out my new website, Inside Lives, for stories and images that celebrate how us colourful human beings find refuge, joy and growth within our homes.


Tuesday, July 7, 2015

Growth has flipped!

Hello everyone! You are probably about to notice that Growth now begins... from the beginning.

As I'm moving on with other ventures, I figured we may as well have these posts tell the story of a healing journey, and chronological makes a lot more sense.

It's been an interesting experience going through these from the start, endeavouring to lightly edit the early brain-dumpings while keeping the original voice of them.

I hope you enjoy!

Love,
B

November 29, 2012 | New Growth


When I first met James he was writing a children's book. "New Growth" he planned to call it.

A seed was sprouting in the ground, growing through layers of forest in order to reach the sun. At each stage of his growth, the seed became friends with and came to know the creatures of the forest at that level - the leaves, the slugs, the ground dwellers, the vines and lizards. He became comfortable.

Yet as the rains continued to fall and the sun continued to shine above, a voice deep within his fibers told him he must keep growing. The tune, "I love you so, you gotta know, but you gotta know, it's time to grow," reverberated through the storms.

And so each time, he would have to leave his dear friends, his realm of comfort. Of course, they would still be there, and although growth would mean entering into the unknown, the seed had to trust that there was more to see, more to learn, further places to grow.

And with that summary, we welcome the newest growth in my life:



This growth sits in my right frontal lobe. Neurologists and Radiologists discovered it with a degree of certainty just yesterday. To say the least, the journey over the last couple of weeks to get to this point has been tumultuous and painful, and perhaps I will tell that story later.

But now, as we embark on the journey to kick this tumors ass, I want to write about growth. Because never before have I been so on my knees to the gift of life, so determined to live, and so grateful for the friends and family that are the essence of life. Once a cynic of love, I now live for it. And I so deeply want to laern from this experience, to transform it into something positive.

One of our favorite professors is a cancer survivor, and he often speaks of 'head knowledge' and 'heart knowledge'. There is no denying my life lies in the hands of medical professionals, whose practice has years and years and the dedicated research of millions backing it. Yet there is also no denying the knowledge of the heart that heals. Both can be powerful tools in this fight.

I may not have specific religious practices or herbal concoctions (sorry Aden, maybe I'll get around to those), yet I do believe that with love and a positive desire to live, the force of the heart and mind is equally as powerful as any treatment.

I can't thank everyone enough for the overwhelming support of friends and family. I'm so sorry I haven't been able to reply to everyone, but please do know that you are all in my heart and I am absolutely humbled.

A few others may also post - everyone is welcome to, just send me a message. And I'll keep you posted on this growth in the head (yes, literally and figuratively) and of the heart.


Monday, July 6, 2015

November 30, 2012 | A message from mum


Like dear Bethany and James (and many others) I've been dropped in to a whole new 'world'. Not one I would have or could have imagined. Just so unimaginable.
My whole being feels torn and tattered...especially when I've watched my favourite girl go through so much pain and medical intervention already. And of course, there's so much more to come.
Inamongst these deep dark waters there's a lot of love. We're feeling it! We've felt it in the generosity of strangers and the words of distant friends. And we're together. Such a treat.Despite the situation, it's been a joy being with Bethany and James in Seattle. We can touch, smile, see new sights, laugh, cry, eat and drink. Stuff. The stuff of life. 
~ Melanie (Bethany's mum) x

Sunday, July 5, 2015

December 1, 2012 | Deserving


The word I write about today is the word “deserve”. 

It was James’ birthday on Thursday. Lacking the ability up until that day to really plan anything, the three of us spent the day perusing Seattle enjoying the gift of life. Along the way we bought him a wooden make-your-own dinosaur, a bunch of flowers, a hide journal, and of course, hot dogs. 

That I was up and able to walk, dance (in the bathroom in front of a mirror) and eat out was a gift in itself.

I’ve always known life is a gift but now, it’s undeniable. Yesterday, we spoke to the surgeon who will be cutting out a fist-sized chunk of my skull on Tuesday. I guess up until this point I’ve maintained some form of hope that it’s really just some swelling, that they’re going to tell me that it was just all some big mistake, or that it’s just benign and will all be gone and the ordeal will be a story to tell. 

But tumours aren’t like that. They keep growing. Yes, they’ll get out as much as they can, but it’s not the end. Chemotherapy and radiotherapy, those dreaded words that I always saw as the burden of an unfortunate few, are now real possibilities. With the surgery, I’m going to lose my hair either way. It’s all real, and all this stuff that all seemed so foreign and unimaginable actually applies to me.

I paused as I wrote to James in a little birthday card that he deserves everything. Yes, I believe that with all my heart. But I wonder, what do we really deserve? Do I deserve to have a brain tumor? Does everyone around me whose brains are free of tumors not deserve one? Is it simply coincidence, or is there more to it? 

I really don’t know anymore, if I ever did know. But I do know that when I look back upon my life I see so many times I didn’t really believe I was deserving. I didn’t really deserve to be loved, and when everything in life seemed to be going well deep down I often felt that surely, something had to give.

With a persistent awareness of inequality and the massive challenges faced by so many people throughout the world, it was my view of life as a balanced system that works for equilibrium that sometimes fed this belief that a bit of bad fortune must surely accompany good fortune. 

When I first knew something was wrong with me I was scared. I was terrified. I tried not to show it, plastered on a smile and pretended everything was okay. I remember lying in bed one night and almost hyperventilating with secret fear, knowing that the diagnosis of MS was wrong, knowing that there was something growing in my brain. 

My fear wasn’t of dying - I’m not afraid of death itself. But it was the fear of leaving those I love, of not being there for people, for not extending and sharing the hope that I want to share in this life. 

The fear was in imagining my eulogy, wondering if the reason I had done so much already in this life was because by some unknown force I knew my time was limited.

Do I deserve to die? Do I deserve to live? Our society doesn't really encourage us to ask these questions, and so we as a species have waltzed around with an attitude of entitlement. 

I lay in an ER last week next to an old man who told the nurses that he had no-one. No family left, no friends. I almost cried - for most of all, through all this, I have learned I am loved. And with that, I;ve come to feel that yes, I am deserving of love and yes, I am deserving of life.

Granted, I believe the brother of mine who passed away many years ago was also deserving of life. But I have a choice. I still believe, perhaps more than ever, that there is some form of intrinsic equilibrium to life, but I can choose whether to see it as good bringing bad, or to see it as the greatest challenges in life can bring the greatest rewards.

This is not some celestial punishment for being fortunate. It is another challenge in life that will have it's own rewards, rewards that I'm already beginning to experience.

Essentially, we're all choosing to live. We believe we deserve to live. Now faced with the concept of death, I see that we are all in the same situation - we all live each day with the knowledge that each day is one day closer to the end of our lives.

But perhaps more importantly than making the choices to put off our impending deaths for as long as possible, how would our lives be different if we decide to truly choose life? And I don't mean choose life in the way screaming hordes do in front of abortion clinics. I mean to live with utter gratitude that we have this chance to live a life, to seek the breadth of flavors and smells and colours available to us.

Are we living to die, or are we dying to live?

Saturday, July 4, 2015

December 3, 2012 | The Deep: An Essay





The Colorado River cuts through layers of the earth's surface to form the Grand Canyon, reaching what Norman MacLean has dubbed "the basement of time." Some of the earth's oldest rocks, thousands of feet thick, was lifted 300 million years ago by monumental geologic forces into a great range of mountains estimated six miles high, the height of the Himalayas. Over time, the mountains eroded into a plain. About one billion years ago that plain was raised into a second mountain range, also worn away by millions of years of rain, wind and frost. During later ages, the entire region sank beneath an inland sea, primitive shellfish fossilizing in sea bottoms eventually hardening to shale. Life was crystallized here, caught in time to be forever part of earth. Eons later the region rose again as a high plateau; the former sea bottom now on top and the ancient rocks below. What rises must eventually fall and what falls will rise. The Colorado River then carved the Canyon inch by inch over the millennia - down, down, down - reaching ancient rocks and exposing evidence of petrified life almost a mile below the surface.


***
“She leaned down and looked at his lifeless face and Liesel kissed her best friend, Rudy Steiner, soft and true on his lips. He tasted dusty and sweet. He tasted like regret in the shadows of trees and in the glow of the anarchist's suit collection. She did not say goodbye. She was incapable, and after a few more minutes at his side, she was able to tear herself from the ground. It amazes me what humans can do, even when streams are flowing down their faces and they stagger on...” - Markus Zusak as Death, The Book Thief
***
We drove toward the Grand Canyon last week on a road trip. We were never made it. “Don’t worry, it’s nothing worth seeing,” Doctor Earl tells me. The eyes of the Flagstaff Medical Center’s physician were playful and intimidating, eating away at my last hope of seeing the massive crevice. It is four P.M. and the light outside is fading. Dr. Earl sports a shock of wiry gray hair and peers through thick rectangle frames of glass, without which I wonder if the bearded man would have quite the air of authority he does. “It’s just a hole in ground,” he gives a chuckle, disinfecting silver needles on a white plastic tray. “But I’ve heard it’s a pretty big hole,” I try to grin, attempting to keep up with his morose, doctor-like sense of humor. I am crouched across a sterile plastic table, an insipid green hospital gown falling at my sides to expose white flesh and the knobs of spine that jut up the center of my back in an emerging mountain range. “Think Halloween Cat,” he has told me, and I arch for all I am worth, hugging my knees to my chest. I’m aware that my pale breasts are exposed at the sides but don’t mind, as here I am a body, an object of skin and organs and blood in need of testing and fixing. “Okay, here comes the prick,” Dr. Earl pierces a needle between two vertebrae protruding at the base of my spine. James holds my hand as my nails pierce deeply into his flesh. A murmured “sorry” emerges from my quivering lips as tears begin to pool in my eyes. The needle keeps pushing, forcing, driving itself into the bone. Something is wrong. The “stop” that leaks my lips is the desperate cry of a child. I feel the needle inching out, wrenching itself loose. And again it enters in a new place, driving forward, splitting. “This isn’t working,” a fervent whisper is given from Dr. Earl to the physician’s assistant. “She has thick skin”. I want to laugh and cry out. Thick skin? I thought having thick skin was being able to handle a little prick. I thought thick skin was what I was supposed to have. “What else have we got?” The men pierce a larger needle into my back as my world begins to spin and black and red patches simmer inside my tightly crushed eyelids. I wish my body to fall away into a sleepy abyss, yet the needle persists deeper and deeper, jerking me from any solace I find in desperate fantasy.
Driving away from the Grand Canyon the next morning we made a promise to be back one day, and four days later I am lying flat in a bed at James’ grandfather’s house. It is the night after Thanksgiving. I urged James to leave tonight, to visit friends of his childhood in town. For days my head has been plundered with needles in any position other than lying dead flat, and I have relegated myself to bed, away from the world that blinds my eyes. “Everything is fine,” I have told my mum and her partner, Guy. It’s just a spinal headache: leaking spinal fluid. They’re common after a lumbar puncture. Yet Guy has just left a message on my phone. I clasp my legs that are beginning to sprout soft winter hairs as I rock side to side. “This is serious. I know it is heavy and this may be the most serious message you have ever received,” Guys’ voice echoes from a million miles away. “Bethany, you have two options. You can lie back and pretend nothing is wrong. You have one of the highest pain thresholds of anyone I’ve met and I know it is tempting to do so. Or, you can choose to fight. You can start banging on the tables. You can make this choice and only you alone can make it. Bethany I just don’t want you to finally see someone and they have to say, “I wish you had come in sooner”.” I know Guy is speaking on behalf of my mother and is speaking with love, yet my breathing hastens. “I know this is heavy but it is time,” he says. “It is time to start banging on the tables”. The room is cold and silent apart from my raspy breath. It’s just a headache, that’s all we know, just a headache. Yet why, I ask, was I just up a few minutes ago, secretly and furiously punching a will into a keyboard, making promises and prayers to a God I don’t believe in? Why do I fear for life and death in a way I have never felt before?
I am on my knees to life, I write. I promise I have more to give to this world. I promise I have more love to give. I promise I have a legacy of love to give. I’ve been thinking about it as I lie here in fear. If or when I make it through this, I need to have James’ child. I’ve been so afraid of that thought. I’ve avoided it like the plague. But I realize now the fragility of life. I’m not guaranteed. My mind is wandering. Imagine if I was gone and there were nothing left, no bastion of our love, no legacy of the dream we share? He deserves a part of me. I realize now that love truly is everything, love and family. Nothing else really matters. Tears rack my body and I begin to shiver. I’m trying to be strong but I’m scared. I’m really scared. I know something is wrong.
***
“A small fact:
You are going to die.... does this worry you?” (Zusak, 1)

Like many humans, Death tries to find ways to give meaning to his work in The Book Thief, the favorite novel of my childhood. Death, the narrator, collects stories of courageous humans such as that of Liesel, our young and idealist main character. He searches for hope in the gathering, reading, and telling of human stories, saying it is, "to prove to myself that you, and your human existence is worth it." At the beginning of the novel Death says the most painful part of his job is seeing, "the survivors, the leftover humans…the ones who are left behind, crumbling among the jigsaw puzzle of realization, despair, and surprise. Unlike any ideas of grim reapers and sickles, Death tells us that if we want to see what he looks like, we should "find a mirror". All humans die, and so, he says, we all look like Death. In a way, we're all united with Death, and he's the thing that unites all of us. He is part of what makes us essentially human.
***
It was always a race to find my brother’s grave. My family would visit him twice a year at the Awanui cemetery. My other brother Aden and I would leap out of the car and begin to scamper through the crowded concrete rows, our small hearts beating and eyes darting across the sea of pillars. Our brother, Campbell, rested somewhere between five and seven rows back from where we would park, and about five segments inward. This is very loosely approximate: we were never able to keep count to any more definitive measure as the cemetery was designed like a racetrack. So it was that Aden and I never knew quite where to find him, as we never knew if we were parking in the same place. The asphalt strip encircled the graveyard in a perfect oval, cutting a neat path between the fake flowers and neatly trimmed gardens that separated the military and commoners, the older sections and the newly passed on. If you kept on driving you could drive around it forever.
***
 “The cemetery is an open space among the ruins, covered in winter with violets and daisies. It might make one in love with death, to think that one should be buried in so sweet a place,” said Percy Bysshe Shelley in Adonais. To one that had to visit a sibling twice a year, this proposition seems rather preposterous. Yet if you look at a cemetery without one’s own selfish fear of soon abiding in such a place I suppose it really is a rather beautiful place. There is not a place that brings people together in such a reverence for our fragile life, with its scattered flowers and wreaths, climbing with ivy and green mosses. In fact, the cemetery, in its tranquility and unity, could be rather heaven-like. "Since the soul of the deceased was thought to need provisions for various wants in post mortem existence,” John Heller writes in Burial Customs of the Romans. “The ground about the tomb was often laid out as a garden, where the spirit might wander and enjoy itself in its own bit of the Elysian Fields”. Life divides many, death brings us all together.
***
There was once a solitary tree in the Awanui cemetery. It stood deep within the asphalt oval, one row back and three sections beyond Campbell’s grave. I don’t remember what type of tree it was, but I do remember it being deciduous, unlike the native evergreen trees that grew in the area. On Campbell’s birthday, August the 25th, the tree would be stark naked, jutting up amongst a grey concrete sea under a grey sky. On January 6th, the day he died, acid green leaves were budding, cloaking it from head to toe with new life.
I realize now that we always visited the cemetery at two distinct times of year: the very middle of summer and the heart of winter. In my faded memory there was not a time in January that Campbell’s small patch of earth in the middle of the sea of concrete wasn’t bathed in sunlight. Meanwhile there was not a single time in August that I didn’t catch a glimpse of my mum pulling her coat tightly around her body as she stood on top of my brother under gathering rainclouds. There were never any birthday balloons. This realization seems contradictory, yet I can’t manage to wrap this thought into a profound metaphor. He should have been born in summer like Aden and I were, when the leaves were budding, and he should have died in winter, not the other way around. Some say death is “meant to be”, but to us, it always seemed unfair.
***
The word cemetery derives from Greek koimÄ“tÄ“rion, or 'dormitory', which comes from koiman, 'put to sleep'. “Like death warmed up” means to be tired or ill, and the Germanic word “Tod” is the root of ‘to die’ (here I think of Hot Toddies and sleepy winter nights). Indeed I found cemeteries to be strangely sleepy places – there was something dreadfully calming about sharing a field with thousands who have fallen into the deepest slumber. After Campbell’s death due to suffocation after rolling over in the night, sleep didn’t come to my mother for three years. I wondered if she too, feared dropping into that same eternal state. As for myself, a young girl at the time, I don’t remember ‘sadness’ yet do remember long nights lying awake, defying sleep in fear of not waking up. The concepts of sleep and death blurred over the post-mortem months. Perhaps sometimes it was the simple daze of life, passing along from day to day. Living without sentient consciousness didn’t seem too different from death (I still feel this in shopping malls sometimes).
***
The tree was our one point of reference. I arrived on a hot summer’s day after being away in the United States for two years. My mother waited in the car first as she always had, and I climbed out to begin the search. Aden, walking beside me, veered off at a row that I am sure is too early. I chuckled. Wandering aimlessly, I tried to find clues in the names I have scanned over for years, treading over the grass growing from their remains.
Here is the old man and his wife who died together, they always have red roses placed neatly above them in silver pots of water. Here is the boy who passed at Campbell’s age who has a giant powder blue teddy bear engraved on his headstone. Here is Sophia – she was seven. Here is Mr. Matthews, whose stone is cracked down the middle with moss growing in the crevice. My Poppa tried to clean it off for a time – it grew back every time and we soon gave up.
With frustration, I span around in search of Aden. Pacing a few rows ahead of me, his head was cocked to one side in concentration as he scanned the rows. My brother’s feet were steadfast, no longer running as he once did, but methodical in his quest to find his younger brother. His shoulders were now broad and hair darkened, his rounded cheeks of boyhood given way to chiseled cheekbones. It was a strange place to realize my brother was no longer a boy. “Any luck?” he yelled at me, his hands raised slightly in defeat. I shook my head and he began striding toward me. Only then as I watched him striding tall above the strewn graves I realized the tree was gone. My jaw fell. Aden now at my side, his gaze also reached the empty spot my eyes were locked onto. With a sharp inhalation, forgetting our quest, we wandered over to the tree while a certain sadness gripped my heart. I wondered if this is the tug of sadness one is supposed to feel in a field of the dead. A shiver ran down my spine. 
The stub jutted from the ground, its trunk beginning to crack apart and gather rainwater in its crevices. Aden reached it at the same time as I, and together we stood peering at the quiet passing of life. “I guess we took for granted it would always be here,” I said to my living brother, still staring at the wooden stump. Behind us, our mother had arrived at Campbell’s grave. Silently apologizing to her son in the ground beneath her for taking for granted that his breath would continue, she knelt to the ground.
***
“I am constantly overestimating and underestimating the human race - rarely do I simply estimate it. The same thing [can] be so ugly and so glorious, and its words and stories so damning and brilliant. I am haunted by Humans.” (Zusak, 550)
***
We are in a lavish hotel room - my mother, James and I. My headaches have departed and the three of us have walked out of our third hospital today arm in arm after three days spent as an inpatient. James and I have arrived back from dinner, a festivity my mum professed not be interested in, to find a half-empty bottle of wine. She wakes as we walk in. “Why are you back?” she asks, bewildered. Her blonde hair nests softly above her head and she blinks as we turn on the lights. “Aren’t you supposed to be gone? Where is Guy?” I walk over and stroke Mum’s forehead. “It’s okay mum, we’re back from dinner, that’s all”. I sit beside her on the couch. “Are you drunk?” I ask gently. “Oh, maybe,” she grins girlishly at me. “We brought some food for you mum, here, I’ll help you up”. And so the three of us sit around a polished hotel table high above Seattle, the city lights outside glimmering their winter lights, eating James’s birthday cake (it’s his 28th today). Around the table we talk about Campbell for the first time. My mum tells us of the unfairness of it all, how she wishes Aden had a brother to grow up with, and how she still thinks of him each day. My mother’s eyes lock onto mine. “Death isn’t fate. I always hated when people thought my son was supposed to die. He should have lived.” I stare at her. The room is silent. Death hangs in the air like an unwanted guest.
Death: the permanent end of someone or something. Today it was confirmed a brain tumor is spreading through my right frontal lobe. Today I lay in a hospital motionless, peed in a bedpan too small and felt the warm liquid run down my skin and soak the bed sheets beneath me. Today the tears of my family and I sitting in the stark room sprang like a mountain spring, and today I told my husband that I would always love him and that I’m not afraid of dying. We lie awake every night in the large hotel bed, as the lights outside glimmer and our tears become one, knowing we will always be together.
***
I’m not supposed to talk about death and I’m not supposed to write this. I’m not allowed to wonder if I’m dying. I’m not supposed to plan for death, or think of it, or look up the meaning or origin of it. Death is a dirty, soiled word. But death, it’s a fact we all live with. It’s a place we are all moving toward. On Tuesday I will have a portion of my brain removed. A week later I will find out what kind of tumor I have, dictating the course of my remaining life. I no longer pretend that it will be forever. Tumors, they have told us, don’t go away. They grow by invasion. The average life expectancy ranges from eighteen months to five years. Granted, I plan to live much longer than any estimate they lay upon my life, as my mother cannot lose a second child and James cannot lose his best friend, colleague and wife, not yet. Yes, my heart aches as I write, and the tears I have learned finally to spill pool beneath my eyes.
We will return to New Zealand soon. We will return as autumn approaches the Northern Hemisphere. This time on August the 25th I will kneel at the grave of my younger brother with a reverence for the impermanence of life never known to me before. Human to human, animal to animal, I will kneel at the base of the tree, forever now bare. The road around the cemetery will likely still be an unending asphalt path. And as usual, we won’t find my brother until passing the graves of many other fellow spirits who have fallen into their dormitories, from where they slumber eternally to sip their toddies, reminders of our lucid dream. Perhaps I’ll join my brother with these tired souls someday. Yet isn’t that the real key? Someday.
It’s a cliché a million times over, but it certainly stands. We are all going to die. By no means does my brother’s tombstone, or my brain’s tumor bode that I shall join the depths in an unnatural order. I do not resign my body. Not yet.
As for my spirit, the physical world may never take that. I’m told that energy cannot be created nor can it be destroyed. It can only change form. Does it not do that constantly, even in a lifetime? Mother’s lessons become truths, dreams become quests, journeys fulfill our metamorphoses, and new perspectives dictate our daily choices. In love and family my spirit, like all spirits, will continue shall I join my brother. I’m not supposed to write of death. But I cannot and perhaps should not run from the word. I am comforted that a garden awaits us: our body and our spirits. Cemeteries are indeed the Elysian Fields, the continuation of human life, the garden of our souls. It seems that the earth remains our eternal home, the most beautiful and sacred garden of all.  With that said, I still plan on returning to the Grand Canyon, whether it be in the near future or years down the road. For if I am to end in a hole in the ground, or ashes in the sea, why not take solace in the greatest grave of all? One that freezes time in fossils, in which ashes can breathe and rivers run eternally?
***
“At some point in time I will be standing over you, as genially as possible. Your soul will be in my arms. A color will be perched on my shoulder. I will carry you gently away.” (Zusak, 4)

Friday, July 3, 2015

December 4, 2012 | The Knife (from the other side)


“A stillness settles in my heart and is carried to my hand. It is the quietude of resolve layered over fear. And it is this resolve that lowers us, my knife and me, deeper and deeper into the person beneath. It is an entry into the body that is nothing like a caress; still, it is among the gentlest of acts. Then stroke and stroke again, and we are joined by other instruments, hemostats and forceps, until the wound blooms with strange flowers whose looped handles fall to the sides in steely array.” Richard Selzer, The Knife



It’s 3.20 in the morning and sleep is again failing me. The knife approaches with the ticking of each second, its blade is sharpened, poised, ready.


“Sickness” is a sallow word, one that this morning, I refuse to take on. I am not sick. I am not a victim of a shiny metal object that acts out its final will. Sometimes, I refuse to sit on the patients’ chair. I greet doctors with a firm handshake. With a newfound reverence for their profession, there is one thing that these men and women cannot forget despite its ease to do so. On the other side of the knife is life. It is entire families and memories and pains and joys. This could be you, your daughter, or your best friend. Remember this.

We were walking along the Western Seattle waterfront the other day, first grader Eve and I wandering a few paces behind collecting flowers, rocks and shells. Joy radiated from her young face as we discovered bright red berries that spurted dye and purple flowers that had already began to crust and dry as delicate paper petals. “Are you sick?” Eve suddenly asked me, he brown eyes staring up at me.

Eve may visit me in the hospital this week at the University of Washington Medical Center and I will look “sick”. My head will be shaved to the scalp and my skin flecked with lavender IV bruises and the blood that gathers in their sterile plastic tubes. I may even feel “sick,” mind spinning with anesthesia and sleep once again availing my body with hourly vitals checks to monitor that state of the life within me.

It could be easy to be a victim. Let me tell you, it is easy to walk through corridors and sit in buses and wonder, ‘why me?’. Why do I have a tumor growing in my head and you don’t? And he doesn’t, and she doesn’t? How can you laugh freely and carry on your life as if nothing is wrong? Now this – this is tempting. Yet I let my head hang and grasp onto the flecks of joy that remain in my own mind. Within me lies the hope of a contemplated future, the joy of love despite pain, the power of friends and family and an outpouring of love that only a flirtation with our own mortality can bring to the surface of our shared humanity. It’s the most powerful human force I have ever experienced.

“You cannot separate passion from pathology any more than you can separate a person's spirit from his body.” - Richard Selzer, Letters to a Young Doctor

So in saying that, and with just 15 minutes until I am expected to rise, disinfect my tired body, and catch a 4.45am cab to the Surgery Pavilion where I will be stripped into a gown, my hair shaved and my body again relegated to victimhood, I can confidently say that I am lucky. I have never felt so lucky. I spoke to a man doing vision field testing on me the other day in the Harborview hospital. We spoke of true humility that comes with realizing our own mortality – the humility that leaves you broken and open yet empowered as you realize the great power that comes from within and the power of human beings. I may not believe in a monotheistic or polytheistic god yet I’ve never so much believed in the intrinsic, loving, spiritual power of the human mind and the human body. Prayer and meditation allows us to enter into realms of power that are inaccessible simply as objects of flesh and bone. We are fighters.

The world still sleeps as I farewell another chapter in life. To be honest, I’m excited. I’m excited to smile as I fall asleep in the bed this morning and I’m excited for the crazy wigs to cover my bare head (of which we all have one) already shipping from the mighty amazon.com. I’m excited to wake and know most of the tumor is gone, excited for the crazy hippy teas I know my brother is going to make me drink as ‘treatment’ and excited to be once again able to move and run and dance with more joy and gratitude than ever before. This morning I choose to trust the knife and with honest dedication trust the power of the human soul. I choose not to be sick, and choose to remember the joy of the smallest flower and shell and spoken and unspoken word.

“You turn aside to wash your gloves. It is a ritual cleansing. One enters this temple doubly washed. Here is man as microcosm, representing in all his parts the earth, perhaps the universe.”

The knife patiently awaits and I am ready.


Thursday, July 2, 2015

December 6, 2012 | Godspeed: A Story From James


Hello all. It's been an interesting time, and I'm not sure I know quite what to make of it all yet. But I thought maybe I could share my reflections in the best way I know how. I've written a story for you.
James


Godspeed Good Godwit

There is only one thing I can promise you when the night stretches beyond limit. You are not alone.

Deep in the darkest and mirkiest blues, the moon shone through a speck of cloud. That very same moon who hovered above the earth for seemingly days on end. Beaming, shining, and glowing, the moon didn't move. Like never before, he just towered above the wilderness in an endless midnight kingdom.
The animals began to gather along the ocean shore to stare at the marvel, there up above gleaming in giant ripples across the ocean. They wondered at this spectacle. How could he just sit there? Why wasn't he driving steadfast across the sky chased by the sun? Would she never return?
When the sempiternal night clenches white knuckle tight, Good Godwit must go, its time for flight.
When the sun hides away, abandoning her northern stay, Good Godwit must go, to save the day.
Soon everyone was congregated in a bewildered horde, muscling back and forth, arguing amongst one another. Worried seagulls fluttered about the heads of walruses, aimlessly diving for minnows amongst the brilliant puddles sparkling on the beach. Dark black crescents crashed around frightened heads as a moose stepped with long lanky strides over seal pups, in search of her daughter. The wolf family crowded the flanks, singing haunted choruses as they corralled the chaos. Ptarmigans bumped blindly into foxes before beating away in the knick of time. Salmon huddled in a pool of silver moonbeams, confused by the enormous bodies of orca and bowheads who glided past into shallow shores. The great commotion was deafening as brothers called to sisters and mothers calmed children.
Desperate cries of hunger and cold, plagued the eyes of younger and old.
They began to see, something must be done. For it was clear to all, they needed the sun.
Desperate cries of hunger and cold, plagued the eyes of the scared and bold.
They began to see, they needed someone. Who could search the darkness to find the sun.
The crowd began to argue, escalating the chaos with accusations and bickering. The orca began to shout at the bowheads. He blamed them for not paying proper respects to the sun, they should have left earlier to meet her where the ice grows. A long bearded mountain goat stepped forward, berating the caribou. Then the fox snipped at the wolves, and the wolves growled at the looming ice bears who peered in from the foggy depths. Soon the entire mass clashed with foaming teeth, howls, and bellows, a whirl of splashes and wingbeats, and gnashing antlers. The rapacious assaults and raucous retaliations could barely be made out in the darkness, but escalating yips and grunts, followed by squawks and roars bore the most horrific cacophony one could imagine. Just at the point where the rolling stones, splashing waves, and stumbling boulders were deafened by the violent gathering a giant beast appeared. Barreling forward out of the darkness, as if incarnated by the fury to calm the wreck of shoving masses.
This does no good to hurt one another, stop this instant my sisters and brothers.
Don't you see, something must be done. For it's clear to us all, we need the sun.
Stop, do no more harm to each other, I'll climb the mountain to find our mother.
They began to see, what must be done. Brother bear would go retrieve the sun.
A little voice in the back protested, claiming Great Grizzly could not find the sun, only her, Good Godwit, the small flighty one. The godwit came forward, landing near the bear's trunk of a leg, standing barely above his paw. Her beak was long and slender, leading back to a chestnut plume, poised with graceful and confident posture. The animals, now more confused than before, stared blankly at this bold character who stood on the shore. The silence fell unanimously like the whisper of morning, only to be shattered by delayed laughter bursting into devilish uproar. How could this small beast possibly believe she was the one to save them. Her? She was the one to end the endless night? No, certainly not her! What could she possibly do that the others could not? Good Godwit could not fly as high as Eagle, and he had never touched the sun. She could not swim like Gray Whale, who never found the sun's resting spot across all of the depths of the ocean. Good Godwit could not run like Caribou, and she certainly never found the sun in all of her treks beyond the tundra. They shouted at her, and belittled her. Even if she could find it, she would never be able to bring it back, they said. She's too little, too weak, they said. The wolves howled, loons laughed, foxes yipped, wales sang, and moose snorted. They all laughed and laughed until finally Good Godwit bursted into a flustered and defiant flight. She yelled down to them, to stay in their misery, to fear and moan in the darkness, to have no faith, it mattered not, for she would return, and bring all of the warmth, hope and good grace of the sun upon her shoulders. Rolling in a tortuous tangle of laughter below her they scoffed, and sneered. They yelled sarcastically behind her, godspeed Good Godwit, godspeed! Interrupted by bursts of cackling madness, they screeched, do come back and save us! Godspeed! She quickly vanished into the horizon.
Godspeed Good Godwit, godspeed! You've got to believe Godwit, believe!
Full speed ahead Godwit, full speed! Yo've got to succeed Godwit, succeed!
Because of his strength, his wisdom and prowess, the animals agreed the bear was their champion. Following their disparaging farewell to Good Godwit, they laid all of their trust into the old chief. And with that settled he lumbered off through the willows. Great Grizzly travelled through the cascading streams, gurgling quietly in the still valleys. He marched up hillsides, through the northern yarrow and mountain heather, past the pines. Up and up, over and over, through the deep night he journeyed. His powerful paws carried him farther than he had ever been before, continually headed east, where she rises to bring a new day's hope. He came to the base of the Mighty Mountains. He peered into the dancing emeralds and sapphires that twirled above the ebony peaks. He began to climb, higher and higher, until the winds whipped his hide. Great Grizzly's massive coat stayed true. He fought through the banshee gales, past the ice caverns, and glacial tombs.
At last, long awaited and hard to climb, the mountain is conquered at this precipitous time.
Now fast, where's the sun you came to find, through valleys, hills, and over mountain side?
Finally, with ice clinging to his fur, crystals in his breath, and a view above the clouds, he surveyed the horizon. Even at this peak the only light came from Moon, who sat pridefully above the world with his troop of ballerinas. Searching far in the east, along the horizon, he looked for even a sliver of light. Anything beyond a moonbeam. But no, there was nothing but boundless blackness. He turned to the south, back to where he came from, to the north, nothing. This couldn't be. Darkness, eternal, stifling darkness was all that could be seen from the highest peaks of the Mighty Mountains. Great Grizzly returned to the shore with his head bowed in sorrow, bowed in shame.
When he returned from whence he came, he bowed his head in perpetual shame.
The beasts spoke not a word of blame, not even to mention as much as his name.
The others said not, they knew what was found. All hope was forgot, there stirred not a sound.
The stillness of the mournful crowd was overbearing. After silence like glass the whales began to moan in agony, followed by the wolves. They cried up to the moon asking him to bring back the sun, together the families howled at the obstinate king of the night. The moose could muster not a single sound, petrified in worry of the future to come. The others wailed in their own ways. All of the animals huddled in tighter, forming a mass of solemn kinship against the bleak shoreline. They stared out into the ocean, each secretly asking, secretly hoping, but daring not to say a word. Their sullen faces longed to see Good Godwit return, to bring the sun upon her shoulders. Finally, Great Grizzly spoke.
All hope is not lost and we are not done, for we still have strength to find the sun.
You each have talents, unique unto you. Travel the darkness, follow through.
Those who swim, swim, and run, run, All of you like Good Godwit, find the sun.
You each have strengths, endowed unto you. Travel the darkness, may your hearts be true.
With that said they all took off. Each creature took to their own pathways. The orcas, bowheads, grays and other whales pushed out from the shore. The bison and caribou took to the arduous plains. The terns, eagles, and swans stormed the air in a flash of feathers. Mountain goats searched for the highest peak, as the vole looked for the deepest underground passageways. Everyone did their part. They bumped along through the darkness, forever they seemed to disperse. The birds flew farther than they ever had before, beyond their usual lakes, beyond the mountains, beyond the forests, where the weather was warmer, even hot and wet. It was of no use. Beaten and desperate the famished beasts returned. One by one, the hooves clattered back to that cobbled shore. The wings touched down, and paws padded over the logs and creeks. Each exhausted animal collapsed back into the huddled mass. The wolves smashed against the moose, the ptarmigans warming the fox. Not a beast even had the energy left to turn on another. Shrouded in the ink of the universe, with hides dowsed in sweat and ripped by wind, bleeding claws, hoofs, and talons, frozen coats, and sitting along the shore of deep and dark waters, the life of the world heaved from their failing lungs to gasp their remaining breaths. Afraid and weary, each began to retire. Each looked out unto the sea, each muttering their final words. They released their prideful desires with one last glance, finally unabashed, they whispered, godspeed Good Godwit, godspeed. Their oppressor stared down in flagrant apathy, beaming over the hope lost in his infinite kingdom, the joy that seeped into the darkness.
This is the end of the world. This is the end of all things. When shadows consume all hope, and joy is lost. Death is no evil, no looming cretin waiting to devour the hearts of all those that love, all those who pump fiery passion into the springs of life. Death is no monster, slashing and burning, casting lots into the ovens, cutting throats, and milling through the souls of those lost. All of the heartless and deranged misfortunes of an erratic and unstable universe, are mere vehicles. They are the deliveries, dumping bodies at the feet of eternity. They are not death. Death is deep, cold, hollow, and alone. Huddled in our masses of hope, we are slowly ripped away, one by one, by one. Death is eternal night and endless shade, it is the obstinate misgivings of an oppressive kingdom.
As the last beast closed his eyes, he felt the most intense joy he had ever dreamed, warm and calming. It stilled his massive heart and brought peace to the wounds and worries of an incredibly tired old bear. Great Grizzly felt the fire of life warming his coat as he drifted, further away into hidden memories, the best ones. Those special moments he saved for himself. His first salmon. The willow patch next to the two pronged log. The view of storms barraging the range. Those moments, the ones that remind him of how happy he is to have lived his life. As the memories stirred, so did his blood. The giant heart lurched piping blood through his veins as he felt himself floating into the warmest pools and brooks. He thought of his cubs with their mother, drifting through the meadows, splashing with the minnows. For the first time in his entire life, he realized how truly happy he was to have it. He did well.
Death is not a choice.
But time is. And this, my friends, is not that time.
As Great Grizzly drifted into the warm springs, the others experienced this sensation as well. Their eyelids warmed as they thought of the love and joy they knew, the happiness of arctic squalls crashing an ice bed from deep below, the spring flowers dotting an endless expanse, the pups, cubs, and kids. Life was more beautiful in their moment of death than they ever knew. The warmth spread, tingling throughout as they relived their individual worlds. This is the beginning of the world. The heat grew and grew into a raging wave of immense pleasure, until they opened their eyes to see the golden brim of the sun crowning over the sea, blasting rays of hope, disintegrating black to blue, to purple, with cascading oranges and yellows of a reborn meadow. The ocean radiated in scales of golden and silver embers, blinding the moon, and relegating him to a fleeting existence forever amongst his troop of twirling sisters. Eagle began to screech, look there! Look there! All eyes awake, all in awe, the animals stared in amazement, as Good Godwit pulled ahead. Starting a speck, just a silhouette, dashing ahead of the incredible chariot, she came streaming towards them, sun on her back. Brought to their feet, cheering, barking, and screaming, the animals strained into the sun to see their hero. The livelier pulled the weaker, the big helped the small, all working together, renewed with hope and faith in the world. She did it. She truly did it! That brave and beautiful little bird did it!
Godspeed Good Godwit, godspeed! You've believed Godwit, and succeeded!
Full speed ahead Godwit, full speed! You've found the sun Godwit, and retrieved!
The creatures were ecstatic, jumping and splashing, diving and dashing, and running all about. She truly pulled it off. They were saved. That is, all except one. The great bear still lay where he rested, smiling and thinking of fresh flowers in the glen, cubs, and salmon. For Great Grizzly was ready, he had been to the mountain and back. He had grown old, and seen his cubs. He was ready. For Godwit however, she needed to know that there was still a world full of love and beauty. She had more to see, more to do. She had a choice. She knew it was worth fighting for, traveling to the ends of the earth for. Good Godwit flew nonstop to the ends of the world, to pluck the sun from its hiding place. Her graceful wings carried her with confidence, despite the fears and doubts of others. She was unbeatable and courageous, gorgeous and passionate. She launched herself through an endless night to find the one she loved. She needed the sun.
Godspeed Good Godwit, Carry on!
Godspeed Good Godwit, be strong!

Wednesday, July 1, 2015

December 8, 2012 | Today's to do list


Don’t vomit
Poop
Walk up 3 flights of stairs
Reply to 3 emails
Take all my medicine. 
Journal
Find some sunshine 
Let everyone know I’m okay
Talk to dad
Well wishes to Poppa
Laugh 
Start spelling words wright=  practice.
Read the news
Eat chocolate 
Shower
Right(that’s wrong) a list of things I am thankful for
Celebrate being alive
Seriously, B, poop already. 


(Sorry for these not being nice inspirational goals)

December 8, 2012 | A Little Off The Top: James



Today I got a haircut, I think it's the finest I've ever had. Here's to you B.
I'll try not to bore you with my musings on life, but perhaps I can share a short insight. There seem to be a million theologies, philosophies, and ideologies for where we come from, what we're doing here, and where we'll end up. Whether we meet in the sweet by and by, are reincarnated through transforming energy, or become Gods of our own device, there seems to be proselytizers for any who will have them. Does it matter which one we choose? Not to me. However, just as I choose not to window shop for afterlives, I also have no interest in condemning others' beliefs. It makes little difference to me whether my neighbors attend the Native American Church, or the tabernacle. That is, as long as they possess a sense of dignity and loving respect for the world around them. While I do not believe in atheists, I find this to be a fitting time to share my personal observations as an agnostic.
Bethany's condition comes as a grave indicator to me of the incredible beauty in the world. I suppose in times like these it would be simple enough to shake my fists and cry into the heavens, God Damn you! Perhaps I could wallow in despair, break my knuckles in anger, or drown myself in ecstasy to escape the absurdity of such a situation. I suppose it's also a fitting time for a 'come to Jesus moment' as well, bowing lowly and begging forgiveness, asking that my transgressions be relieved, and asking to be taken back into faithful service. Cliches come easy in times like these, “It's so unfair” or “how could this happen to such a wonderful person?” Yet I find little reward in these circles, and refuse to stagnate in bitterness. I cannot be afraid, and I cannot retreat. It makes little sense to do so, and although I can't quite find the logic in all of this yet, I'll keep trying.
One line of reasoning does occur to me in these sifting hours. Suppose we take the most cold approach to this entire conundrum, and view life as nothing but straightforward. Say for argument's sake, we take away the archangels, sacred cows, and origin stories. Let's assume for just a moment that there is nothing after we die, no one cares what sins we commit, and that our inclinations to hang tooth and nail to every scrap of life are simply genetic programmings passed from millions upon millions of years of organisms with a will to live outcompeting their more complacent counterparts. Remove the symbolism, remove the glass panes, and just view this thing in the moment. Sure brain cancer changes some of our plans. Of course I don't like to think about the labyrinth of possibilities. But what's really happening? Here. Now. Simple. I'm in love. I've found the person who makes the most sense to me in the entire world, and she's alive. We're alive, right now. Even more so, there are things to celebrate every single day. And I don't mean in a stale, glass half full kind of way. I mean really celebrate.
Today started with Bethany vomiting her breakfast in her lap, sitting cross-legged on the bed. She was not smiling, nor was she happy to take pills, sit up, eat, sleep, talk, or do much of anything else. Not a great start, but it left a hell of a lot of room for improvement. We thought we might travel back to Moscow today. That was a bit presumptuous. Instead we extended our stay and focused on healing. We cleaned Bethany, the bed, the clothes, and the dishes. Then we focused on tidying the room, organizing her personal pharmacy, and settling into some simple goals and priorities for the day. A few hours later, with another attempt at medication and food, Bethany once again heaved our efforts into the toilet. That's a start right there. It may seem simple, but having someone vomit into the bowl is a lot nicer than on herself. Furthermore, we had a place to start. With patience and love, we steadily made it through the day finishing Bethany's pill regiment, holding down food, and getting some good sleep. We also were able to start exercising, making multiple trips scooting up and down the flights of stairs. To top things off we were able to start carrying conversation, and smiling once again. I played secretary while she napped, filing through the incredible lengths of loving support that people all over the entire world send this miracle of a woman. And lastly, we laughed. All of us, together, in pure joy and overwhelming love. Those were all moments worthy of celebration.
When you watch the other half of your inner being dramatically shift into an opiate zombie, paralyzed with pain and drowsiness, bedridden and fragile, a part of you comes alive that you didn't realize existed before. Whether it's a soul, a heart, synapses firing in the right spot, or a natural inclination to fend for your family, this thing inside of you shudders in breathtaking awe and compassion for the beauty before you. The tough, hungry little girl with a swollen face and scars running a zigzagged railroad across her shaved head, suddenly becomes more beautiful than any starlet to grace a magazine cover ever dared to be. And when she laughs, you want to cry, those salty tears that come when you feel Atlas' burden beginning to lift. I'd say that's worth celebrating. I'd say staring into the mirror as the barber gives you your solidarity cut, and the man in the neighboring chair covers your bill when he overhears the motivation for the haircut, that's worth celebrating.
If for no other reason, is not the simple beauty and mystery of every day compelling enough to live for? Regardless of whether we live with divine direction or not. Is the love of life not reason enough?
Whether one believes in God has no bearing, we all live by some form of dogma or another. It matters not whether it's bestowed upon us from an elderly virgin in a golden throne, or the enculturation processes of life. We all have our codes. For me, I believe in God. I just don't call her the same name as others. My God doesn't carry a staff or have a flowing beard, sitting on clouds to judge the quick and the dead. My God reaches peaks through suffocating cloud cover, is made of the deepest greens and the bluest blues. She is enormous, and incomprehensible. She is simple and sweet with tranquility that flows and ebbs, and vile with tempests that rage in furious horror. My God is absolutely, unfathomably gorgeous, and worth celebrating.
Furthermore, I am a reverent man. If ever there is something a god would like for us in our magnificent days, it would be to appreciate the living artwork and beauty present in every single moment, of every day. I cannot weep anymore, and pity serves no one. The love of my life loves life, and so shall I.