Five months since diagnosis.
Five months since diagnosis and treatment was started.
Five months since diagnosis, treatment started, and last week, Phase One completed.
Now, we start Phase Two.
Five months since diagnosis.
Five months since diagnosis and treatment was started.
Five months since diagnosis, treatment started, and last week, Phase One completed.
Now, we start Phase Two.
“There is a fundamental reason why we look at the sky with wonder and longing—for the same reason that we stand, hour after hour, gazing at the distant swell of the open ocean. There is something like an ancient wisdom, encoded and tucked away in our DNA, that knows its point of origin as surely as a salmon knows its creek. Intellectually, we may not want to return there, but the genes know, and long for their origins—their home in the salty depths. But if the seas are our immediate source, the penultimate source is certainly the heavens. The spectacular truth is—and this is something that your DNA has known all along—the very atoms of your body—the iron, calcium, phosphorus, carbon, nitrogen, oxygen, and on and on—were initially forged in long-dead stars. This is why, when you stand outside under a moonless, country sky, you feel some ineffable tugging at your innards. We are star stuff. Keep looking up.”
Neil deGrasse Tyson
I am six in my first memory of that sense of longing for the stars, the pull of belonging to the stars. Dad is driving us to Queensland to visit my grandparents and I am lying on a mattress in the back of the station wagon as the car winds its way northwards along the single lane highway. It is one, maybe two in the morning, and instead of sleeping, I am staring out the back window, the sensation that my home is somewhere out there rushing through my veins. And of course it’s in my blood; the very iron in my body was created in those stars.
The first birthday present G gave me was a night at the Sydney Observatory. It was September 2014 and he’d booked the place just for us with our own private astronomer to give us a tour of the Universe. One of the things we saw that night was Saturn, in all her ringed beauty.
So it’s only fitting, that it is Sleeping at Last’s “Saturn”, that reminds us…
How rare and beautiful it truly is that we exist
It was my birthday a few days ago. Birthdays in 2020 are something different, aren’t they? I am sheltering in place in a small apartment in the “covid capital” of Australia aka Melbourne. But thanks to our state Premier’s leadership, the Chief Health Officer’s medical expertise, and my fellow Victorians (largely) doing the right thing, our daily case numbers have reduced significantly from more than 700+ cases a day a few weeks ago, down to less than 50.
But this isn’t where I was supposed to be for my birthday. Earlier in the year, I booked annual leave for the next few weeks. I had planned to be in New England, traveling first before arriving in Maine for the Camden International Film Festival with a friend.
But 2020 looks nothing like the plan I made in January.
Instead, I spent my birthday here with G, before having to rush him back to the hospital when a pain in his hip prevented him from walking. Scans indicated another infection. The news of a temperature spike after a procedure to drain fluid from the infected joint whacked me back into mid-August when he developed sepsis after his first round of chemotherapy dictating that he spend weeks in ICU in a critical condition.
We lurch from crisis to crisis, barely recovering from the last before a new one begins, with the original cancer somehow just a low background hum. Tonight, his temperature has settled. He is being flooded with strong antibiotics. Fluid is being drained.
I knew the cancer treatment and chemotherapy was going to be intensive. But nobody told me that it was going to be this hard.
Nobody told you that it was going to be this hard
Something’s been building behind your eyes
You lost what you hold onto
You’re losing control
There ain’t any words in this world that are going to cure this pain
Sometimes it’s going to fall down on your shoulders
But you’re going to stand through it all
Here comes the river coming on strong
And you can’t keep your head above these troubled waters
Here comes the river over the flames
Sometimes you got to burn to keep the storm away
Today, there is also a bonus song; I played this song as part of a meditation last night to remind me to get up, always.
I have been writing to Love. Not my beloved, although I do write to him as well, but to the Great Love. The Love of the Universe. Collective Consciousness Love.
I have been talking to Love and praying to Love. Because there’s not much worth being here on Earth for, except Love.
And then I found this song. But before I’d even listened to it, the title punched me in the throat. I had been writing to Love in an effort to dispel Fear. But what if I wrote to Fear? What if I spoke to it softly? Soothed it with a song? What if I couldn’t dispel all my Fear by writing to Love, what if I needed to write to Fear as well?
And so I did.
I wrote a love letter – a lullaby – to Fear.
When the miles are much too hard
And roads are too long
If my face in your mind
Is an unfinished song
And you’re sure that the right
is all heading for wrong…
Won’t you write the fear a lullaby
Remind her it’s okay to cry
And find me in the folds of your desire
Tell the worries in your way
To try again another day
Shut up and love me til they all expire
Coz I’m not done with you yet
And this weight around my neck
Is nothing but a make-believe goodbye
So write the fear a lullaby
It’s so easy to forget how quickly it can all fall away. Perhaps we have to live this way, without knowing, with forgetting. Because the truth of our fragility is too exquisitely painful.
They say you can’t live in a permanent state of panic. But I’m proving them wrong.
I sleep with lights on
Always afraid of the dark
But I’ll follow you
Many years ago, I took my then-boyfriend to the zoo for his birthday. It wasn’t just the zoo though. It was Roar and Snore, an overnight behind-the-scenes zoo experience. The Sydney skyline twinkled on the other side of the bay. Our evening began with crocodiles and crudites, as we shared a few drinks with the rest of the group who’d also committed their night to glamping in the middle of winter, while zookeepers paraded a series of small reptiles around us.
There was a night safari tour of the nocturnal animals including the big cats but my favourite part of the weekend was the private giraffe feeding, early the next morning before the zoo opened. I lined up, took the carrot the zookeeper gave me, and waited my turn.
I was so excited it was all I could do not to squeal. I have loved giraffes for as long as I can remember; when I was seven, I wrote a story about having a pet giraffe named Joe. As I approached the stall, the giraffe stretched his neck down to where I stood and wound his long purple tongue around the carrot I was holding.
Wait, what? Purple?!
Well, blue-ish purple.
I was 32 when I learned that giraffes have purple tongues (and no-one really knows why), a fact which still brings me exquisite joy today.
And so when a friend shared this poem with me a few years ago, it went immediately into my list of favourites. Bryony Littlefair uses the imagery of a giraffe beautifully and beguilingly as a euphemism for happiness but I also know that true happiness is feeding a giraffe.
by Bryony Littlefair
When you feel better from this — and you will — it will be quiet and unremarkable, like walking into the next room. It might sting a little, like warmth leaking into cold-numbed hands. When you feel better, it will be the slow clearing of static from the radio. It will be a film set when the director yells cut! When you feel better, you will take: a plastic spoon for your coffee foam, free chocolates from the gleaming oak reception desk, the bus on sunny days, your own sweet time. When you feel better, it will be like walking barefoot on cool, smooth planks of wood, still damp from last night’s rain. It will be the holy silence when the tap stops dripping. The moment a map finally starts to make sense. When you feel better, you will still suffer, but your sadness will be graspable, roadworthy, have handlebars. When you feel better, you will not always be happy, but when happiness does come, it will be long-legged, sun-dappled: a giraffe.
He shivers, hunched in the underground walkway between Berlin Schönefeld Airport and the train station, holding up a sign, an A4 sheet of paper that has been folded and unfolded one too many times. A lower corner is making a bid for escape, only held in place by frayed paper threads. Large block letters scribbled on it in blue biro read: I’M LIKING A TICKET PLEASE.
“Home,” I hear him whisper in English as I pass, “please, I need to get home.”
Me too, I sigh, I’m liking a ticket, too.
At his feet, a shoebox contains a handful of scattered coins in different currencies. There’s not enough change in there for a meal much less a ticket. He babbles in a language I cannot make out. His words catch in the whine and whir of the nearby jet engines and run away on the wind.
The icy air weaves its way into my bones. I pull my hat down to my ears and squeeze my gloveless hands into little fists deep inside my pockets, the crook of my elbow hauling the wheelie suitcase along behind me. My boots scuff the concrete as I drag my feet towards the terminal. I don’t stop to ask where’s home. I have no money to help. But his words continue to haunt.
Home. I’m liking a ticket, please. I need to get home.
Home, I scoff at the idea, what is that anyway? I’m more than 10,000 miles away from where I live but that isn’t home either. Not by any metric you’d normally use to gauge these things. ‘Home is where the heart is’ according to the adage but my heart is a restless wanderer. An aching nomad. Rootless.
My best friend from high school lived in the same house from the time she was born until after she graduated from university. If a house was supposed to be home, I had none. By the age of ten, I’d lived at seven different addresses. Mum and Dad renovated houses, doing almost all the work themselves to earn some extra money and just when one started to feel familiar, they’d sell it and buy another cheap dump in need of repair. At two in the morning, I’d find myself squinting into a dark kitchen with bleary eyes wondering where the toilet had gone before my sleepy head would register that we’d moved again. I’d bump into walls where there used to be doors. Do a double-take when I saw windows that used to be walls. Even after I moved out on my own, I couldn’t stop. Twenty-eight houses and three countries in thirty-one years. Each relocation a reorientation.
The first question you’re often asked when travelling is “where’s home?” My reply is always the same. “I don’t really have a one.” But always present, a feeling of searching, seeking, wanting, needing. The Germans have a word for it, the inconsolable longing for something unidentifiable; sehnsucht, they call it, the desire for a far familiar land one identifies as home. I’d felt it, sehnsucht, staring at the stars on a clear night. But my heart is an itinerant with no fixed address.
It is a warm sticky evening at the end of summer when the nights are beginning to cool. I am seven and a half years old, sitting on the back steps of the latest house my parents are renovating, with my dad and a pair of binoculars. We are looking for Halley’s Comet. In my memory, I see it clearly, a soft warm-white incandescent blob with a fuzzy tail alone in the black void of space. Without binoculars, it looks almost the same as all the other warm-white blinking blobs that surround it. Dad has borrowed the binoculars from a friend. We don’t have enough money to purchase our own. But he wants me to see it. “You’ll probably still be alive when it comes back,” he says, “I won’t.” I can’t imagine what seventy-five years means, to live ten times longer than I already have. I can’t imagine being an adult in my own home because every time I look at the warm-white glow from other people’s windows all I feel is sensucht.
The thin concrete path that runs from the laundry of the house to the clothes line is warm. The heat it’s absorbed during the day seeps into my skin as I lie on my back staring at the sky. More stars appear as I watch it fade from a deep midnight blue to black. It is almost summer and I’m in yet another house in another part of the country. They’re catching me; thirty-two houses, thirty-four years. And none of them home. I’m waiting for the warm-white of the shooting stars; every year in October, Earth passes through a stream of particles that Halley’s Comet dumped into our inner solar system on its last orbit to give us the Orionids meteor shower. Every time I look at the stars, I am reminded of my father. He instilled my love of the sky, incited my curiosity of the cosmos. And every time I look at the stars, I feel more at home than I do on this planet.
I am thirty-six when I move into my thirty-fifth house with G. A few years later, we stand together in a friend’s driveway in Angwin, California staring at the sky. We are at her family farm for her wedding. Howell Mountain rises in front of us, the oaks and conifers silhouetted against the deep blue. Silver pinpricks appear above the treeline.
“I don’t know which one is the North Star,” I say, scanning the skies, “do you know what it’s called?”
“Really?” he replies, squeezing me as he wraps his arms around me from behind.
I can’t see his face in the dark but I know his expression from the tone of his voice. His eyebrows will be raised wrinkling his forehead, a half-smile spreading across his lips, a small curl in the top one. I know all the lines on his face.
The night sky is different here. I recognise Mars, bright and orange-red but I pull out my phone, hoping for cell service and Google ‘What is the North star called?’
“We need to find Polaris,” I say.
“Yeah, sure,” he chuckles, “that makes it easier.”
As it turns out, we are staring right at it. “That one.” I point to a group of trees, “the one above the third tree from the left. On the end of the little dipper.”
He squeezes me again pulling me tighter, burying his face into my neck and for the first time while looking at the stars, instead of feeling sensucht, I feel safe.
Six months later, when the electrician replaces all the lights in our home prior to our wedding and asks what type of bulbs I want, I don’t need to think before answering warm white.
Perhaps home is not the length of time in one place as much as it is knowing all the lines on someone’s face.
The stars belong in the deep night sky, and the moon belongs there too, and the winds belong in each place they blow by, and I belong here with you.
M H Clark
A few years ago, I sat down to write a book. And I did it. I wrote “the end” and everything. Now, I am editing that manuscript, my WIP. Which sounds like I’m close to finished. But a terrible truth in writing is that you can finish a draft (or several) and never be finished editing. I could probably drag it out for several more years if I wanted to.
The reason I’m not finished, though, is because the story has changed since I started. As it does. With understanding. Acceptance. Experience. Perspective.
But I’ve set my intentions for 2020. And while I won’t reveal all of them, one of them is to finish finish the book. Finish amending. Finish editing. Finish changing the story. Not because my memory of it won’t continue to shift but because it no longer belongs to me.
As we approach the end of the decade the customary comparisons are surfacing. The way I live my life is completely different. So is the way I love. But the deeper shadow parts of myself still lurk in dark corners, waiting for an opportunity. In 2010, my eating disorder had such a hold over me, the doctors didn’t think I’d see the end of the year, much less the decade. Yet here I am.
I once thought that if I wasn’t different at the end of all this, I wouldn’t be better. And while much has changed in the last ten years, plenty hasn’t. Who I am at my essence is entirely the same. Some days, I’m not sure what that makes me.
It’s impossible to tell by looking at someone how they are feeling. The picture on the left was taken in 2010, eight months into recovery. I had been re-feeding and gained quite a lot of weight, almost 25 pounds. The picture on the right…? March 2019. I weighed quite a bit more than I did in 2010 and had been back in treatment for three months. I’m still in treatment now. Perhaps this fight will always be a work in progress.
But the story of the last ten years no longer lives in me. And next year, ten years after I almost died, I will let it go entirely.
It’s late. Monday is almost over and I’m trying to squeeze this in before midnight. I’d planned to do it earlier in the day but I’ve been sick, procrastinating, hoping I’d improve instead of getting worse.
In the early 1990s when Beverly Hills 90210 was released, my parents deemed it “inappropriate” television for me. There was sex *gasp*, drugs *the horror*, and domestic violence. While all my high school friends were following the lives of Brenda, Brandon, Dylan, Kelly, Donna, David, Steve and Andrea, I could only watch it in secret at friends’ houses, or listen to the stories around the school lunch table and try to piece together the episodes.
It may have seemed like “just a tv show” to my parents but not being allowed to watch it excluded me from fundamental group bonding between the ages of 12-17. I missed out on popular tv culture that not only provided entertainment, but that also dealt with some serious adolescent issues. Date rape. Eating disorders. Racism. Teenage pregnancy. Suicide. They may have been trying to protect me from the world but the world insisted on making itself known to me through direct experience, even if I hadn’t seen the preview.
Later, when I was living on my own in my late teens/early 20s, a new teenage drama began. I started watching it the first night it aired, not because of the show itself — it was on by accident — but because of the opening theme. The show, Roswell, didn’t last long, a few seasons only; sci-fi teen drama isn’t really a popular genre. But the opening credits rolled with a style of music I’d not heard before. An eerie swooning song, it captured my attention from the first bars. When Dido sang the opening lines, “I didn’t hear you leave, I wonder how am I still here, I don’t want to move a thing, it might change my memory,” I was swallowed whole, into their world.
Roswell wasn’t renewed for a fourth season but my attention was drawn by another show that was starting — The OC. I was married now but Ryan, Seth, Marissa and Summer were living the type of teenage experiences I’d missed out on. Except for the sexual assault. To this day, I don’t know many women who’ve avoided it completely. I inhaled all these shows; the characters with their complicated angst and their ability to act out their emotions so assuredly. The theme song for The OC had an entirely different impact on me; I longed for the seemingly simple, nostalgic American teenage years.
It took me years to realise I was always trying to be somebody else; to escape my own life for something else, somewhere else.
And it’s taken many more to build a life I no longer want to escape from.