Music Monday | The Art of Escape – Hein Cooper

When the only thing that’s sure is this unsteady ground

Hein Cooper

Listening to certain types of music often gives me the same strange sensation of yearning I have when I look at the stars. As if I belong somewhere else. Or perhaps, rather, am from somewhere else. When I was a child growing up in the church, I believed this was because I belonged in heaven–out there, in the stars somewhere. Now, though, I know it’s because all the elements in my body were forged in the heavens; hydrogen and helium during the big bang, while heavier elements were made by fusion in a star’s core.

My affinity for out there is also a way to dissociate from right here. Right now.

I am trying to remember that, as Rumi says, “You are not a drop in the ocean, you are the entire ocean in a drop.”

White Light

Standing at the side of the hospital bed, eyes closed, having rubbed my hands together the way we’d often done in yin yoga, I moved my palms towards and then away from each other, allowing the pressure and heat from the friction to grow into a sticky thread between them. In my mind’s eye, I imagined shaping this thread, forming a growing, glowing ball of white light between my palms. As G lay in the ICU, machines beeping and blinking all around him, I created ball after ball of white light and stuffed them into his comatose body. Later, I worried that I hadn’t been able to ask if he minded if I shoved basketball-sized shimmering lights into his organs. What is the requirement for consent to perform magic when someone is dying?

In reality, I don’t believe what I did healed him. That was done by a team of brilliant doctors. But it made me feel better to do it, and isn’t that what matters? I wasn’t hurting anyone. I suppose that is the purpose religion or prayer can serve, too. To make people feel better? I am not religious. Not in any recognised way. I do not subscribe to any of the world religions and while I grew up Christian, neither I, nor the Christians I still know would ever call me that now; the Bible is not the inerrant word of God. There may or may not have been a real, live Jesus. There is no such thing as sin, heaven, or hell; these are all constructs of control. But once, I used to be a fundamentalist. And the problem I now see with fundamentalism is that it does hurt people.

When he came out of the coma, he was awake and alive but not here. Not himself. He was on a train. He was in an ambulance. He was a 60-year-old school teacher from a neighbouring town. He needed a cigarette. God, he needed a cigarette. Hold on, he said, hold on, hold on, hold on as he tried to grab my arm with the only one of his that sort-of worked, his movements slow, stiff and erratic.

“How long has he been teaching?” a nurse asked me.

“He doesn’t,” I said. “He’s never been a teacher. He doesn’t smoke.”

Sentences were coming out of his mouth but they were just a word in front of a word in front of a word. Unrelated. Until he said “I need to learn another language!”

“You learned another language,” I said. “Remember when we went to Paris and I taught you French? Let’s practice!”

“Un,” I said, expecting him to repeat it.

“One,” he replied.

“Deux,” I said, trying to encourage him to repeat the French.

“Two,” he said.

“Trois.”

“Three.”

“Quatre.”

“Four.”

I counted to ten in French as he repeated the English number after me.

“That’s English,” I said, “not French.” And started counting again.

“Un.”

“One.”

Half way through the second count, I realised he understood. While his sentences made no sense, he knew exactly what was going on.

“Can you understand me?” I asked.

“Yes,” he said.

“Do you know I’m having trouble understanding you?”

“Yes.”

The speech pathologist who’d seen him earlier in the day popped her head into his room and asked if she could see me for a minute.

“I’ll be back,” I told him. “Just a few minutes.”

She asked if he’d ever had any issues like this before the coma; struggles to communicate, not making sense, difficulty with speech or memory. No, I said, never. And then I asked the question I didn’t want an answer to. Is this…going to be permanent?

“I don’t know,” she said.

I shook my head. “I don’t know what he’s talking about. He’s not 60, he’s never smoked, he’s not a teacher. None of what he’s saying is true. They’re sentences. But they make no sense.”

She nodded and bit her lip. “Ok,” she said, “thanks. Could you make something for him? When people start to have communication and memory issues like this, we ask their family to make a memory book. Put in info like work, family, life, etc. Sometimes, it helps their memory.”

I left the hospital after dinner and returned to the Leukaemia Foundation where I stayed up until 2am making “The Book of G” from the template the speech pathologist had emailed me. I filled it with info and pictures for the staff to read, and read to him, emailed it to the nurse-in-charge of his ward who printed it and stapled it together. “You can come in today from 9am,” she told me, when I called to check in that morning after shift handover. Covid restrictions were still in effect and hospitals only allowed visitors in very specific circumstances. A patient not being able to communicate was one of those circumstances.

When I arrived at his bedside at 9.05am after presenting at security for screening, temperature checks and confirmation I was allowed to visit, he was no longer a 60-year-old school teacher. He was himself, as if the person he had been yesterday never existed.

For the last four years, I’ve used a beautiful planner made by Magic of I. At the start of it, there is a yearly planning and intention-setting segment covering categories such as inspiration and creativity, work, health, relationships, spiritual, mental, social and wealth. Last week, when goal-setting for this year, I wrote: practise my French on Duolingo for a minimum of 10 minutes per day.

This afternoon after logging into the app for the first time in many years, I noticed a change. Ads. Ugh. And every time I completed a lesson, it launched into an ad to upgrade. I messaged a friend who is a Duolingo aficionado. He has a 1051 day streak. I’m only aiming for 30. My friend is in Brazil at the moment, practicing his Portuguese and Jiu Jitsu. I’m not sure he needs Duolingo when he’s in the thick of it. And yet, every day, he completes his lessons. I asked if the upgrade was worth it, because it said 60% off. But it didn’t say off what. After 15 minutes of the free version, though, the ads became obnoxious. That’s how they get you. So now I’m a super Duolingo user. I’m hoping the cost will compel my commitment. As I perused this new version of the app, I was astonished to discover you can now learn languages such as High Valyrian.

“Didn’t realise we could learn fake languages!” I texted.

“Why do you call it “fake”?” he replied.

“Because it’s not from a real country.”

“Not all languages are from countries…”

“Perhaps I should have said fictional language. That would have been better.”

It prompted a conversation of language. Languages. Fictional, engineered, and invented languages. Semantics. I asked if he had heard of the Pirahã tribe from Brazil, who have no words for colours, numbers, or past or future tense. Some linguists argue that it is the only language that does not subscribe to the theory of Universal Grammar as there is no recursion. Others argue it does contain recursion, albeit, tangentially. The Pirahã have also been described as the happiest people on earth because, without tense, there is no past or future. They live fully in the present. I scrolled through the Duolingo menu for the possible languages you can learn, and while you can learn Esperanto, you cannot learn Pirahã.

It is possible, perhaps likely, that I have PTSD from this time; from the time spent caring for G both while he was in active treatment, and then while he was in rehab and recovery for months afterwards. Because while my patient was (remarkably) ever-patient and compliant, and caring for him was comparatively easy, the anxiety I developed due to the uncertainty of the situation has not dissipated. At any shift of energy or fatigue, any new would-be symptom, my nervous system moves into uncomfortable overdrive. While he cruises along with a “whatever happens, happens” attitude, I remain hypervigilant to any changes in condition, absolutely not living fully in the present; trapped somewhere in the ether between the trauma of the past and anxiety for the future.

The last six months have seen me dedicate my time to pushing all the medical terminology and understanding of PCNSL out of my brain and replacing it with work again. Just before Christmas, I sat my simulator assessment for work and passed. I am now a fully qualified Unit Controller, in charge of a generating unit. When I began my traineeship, within our group was a former ICU nurse, which on the surface, seems like quite the shift. But as I explained to my mother the other week when I passed my test, it is different, but also the same.

Whenever a patient is intubated and ventilated in Australia, they are assigned a private nurse who is with them for 12 hours at a time. G was ventilated and on dialysis for almost two weeks and his nurses monitored the pumps and valves and machines and equipment, as well as all his bodily systems; blood test results, blood pressure, heart rate, and more, to determine what the next course of action would be, what steps may need to be taken. Any fluctuation of conditions requires an immediate response or their patient could die.

My new role involves me monitoring pumps, valves, equipment and systems of both a mechanical and electrical nature to ensure the unit operates efficiently and within set parameters and limits. It’s same same but different.

I think of the electricity I generate as magic. White light. Invisible to the eye and critical to almost everything we love to do on this tiny blue and green ball, spinning around a dying star. I cannot say what happens when we die. I don’t believe we go to Jesus but I don’t know where we go. I used to think we went nowhere but after the last couple of years, I’m not so sure. Cosmic connections or events appear to exist whether we are aware of them or not, whether we respond to them or not, whether we believe in them or not; we do not understand enough about the butterfly effect, quantum entanglement, or the physics of subatomic particles. And until we do, sometimes, it’s just easier to call the things that happen magic.

Music Monday | Saturn – Sleeping At Last

“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

Music Monday | Here Comes The River – Patrick Watson

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.

Music Monday | Write The Fear A Lullaby – Ben Grace

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…
Hold on
Hold on

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

 

Music Monday | The Great Gig in the Sky – Pink Floyd

In the control room on the wall just visible above my computer screen is a photo of Graeme. Tomorrow marks the anniversary of the workplace incident in which he suffered fatal injuries. I said no to overtime. There will be a minute of silence at midday and even though I’ve chosen to be at work as much as I could since that day, being there tomorrow is not something I want to handle. Instead, I’ll be with a friend in a cafe, writing, and listening to this.

Vale, Graeme. You are missed.

Tribute

Warning: this post contains gratuitous Mary Oliver references and poems.

Wild Geese

You do not have to be good.
You do not have to walk on your knees
for a hundred miles through the desert repenting.
You only have to let the soft animal of your body
love what it loves.
Tell me about despair, yours, and I will tell you mine.
Meanwhile the world goes on.
Meanwhile the sun and the clear pebbles of the rain
are moving across the landscapes,
over the prairies and the deep trees,
the mountains and the rivers.
Meanwhile the wild geese, high in the clean blue air,
are heading home again.
Whoever you are, no matter how lonely,
the world offers itself to your imagination,
calls to you like the wild geese, harsh and exciting
over and over announcing your place
in the family of things.

Mary Oliver

Earlier this week, I posted two pictures on Instagram as part of the #10yearchallenge that is making its way around the interwebs. In the caption, I mentioned that I haven’t posted a selfie in a while because all I see are the same tired, empty eyes and the same strained smile as 10 years ago.

I had forgotten what it felt like to be this depressed. How nothing feels like anything and everything feels like nothing.

The difference, I said, between the two women was that one of them — thirty-year-old me — didn’t know she’d survive the depression she was in. And she didn’t want to. Forty-year-old me, on the other hand, knows that she can survive anything, and she will.

But I left something out. Something critical. There is also another major difference. Forty-year-old me has support that thirty-year-old me never had.

In late May 2014, I met G at a work conference. I flew out for the USA at the end of that week and, for the six weeks I was away, we somehow managed to find up to five hours a day to Skype. At one stage, while we were chatting, I was in a library, looking for a book of poetry.

“Poetry?” he repeated, as if I’d spoken another language (and perhaps I had).

“Yes,” I said. “Mary Oliver.”

I found what I was looking for and sent him a picture of the page. It was The Uses of Sorrow.

The Uses of Sorrow
(In my sleep I dreamed this poem)

Someone I loved once gave me
a box full of darkness.

It took me years to understand
that this, too, was a gift.

Mary Oliver

When I arrived back from my holiday, instead of going home to Sydney, I jumped on a flight to Melbourne. We needed to know if this thing we had developed and nurtured was Real. True. Lasting.

Picking me up at the airport, he gave me two gifts; a set of pens from my favourite stationery store, and a copy of Thirst by Mary Oliver, containing the poem I’d been searching for.

I Did Think, Let’s Go About This Slowly

I did think, let’s go about this slowly.
This is important. This should take
some really deep thought. We should take
small thoughtful steps.

But, bless us, we didn’t.

Mary Oliver

Mary Oliver died this week. She was 83. I cannot remember how I first came across her; which poem it was that struck me, in all the ways her poems have struck me since. But I have a number of her books, and read them when I need reminding how to be human.

Poets, I find, know this intrinsically. And I am still learning – how to be a poet, and how to be a human. Because being human; being gentle, kind, loving, compassionate, and patient in this world is hard. Knowing death comes for us all is hard. Feeling dark things is hard.

When Death Comes

When death comes like the hungry bear in autumn;
when death comes and takes all the bright coins from his purse to buy me,
and snaps the purse shut;
when death comes like the measle-pox
when death comes like an iceberg between the shoulder blades,
I want to step through the door full of curiosity, wondering:
what is it going to be like, that cottage of darkness?
And therefore I look upon everything
as a brotherhood and a sisterhood,
and I look upon time as no more than an idea,
and I consider eternity as another possibility,
and I think of each life as a flower, as common
as a field daisy, and as singular,
and each name a comfortable music in the mouth,
tending, as all music does, toward silence,
and each body a lion of courage, and something
precious to the earth.
When it’s over, I want to say all my life
I was a bride married to amazement.
I was the bridegroom, taking the world into my arms.
When it’s over, I don’t want to wonder
if I have made of my life something particular, and real.
I don’t want to find myself sighing and frightened,
or full of argument.
I don’t want to end up simply having visited this world.

Mary Oliver

Although Mary Oliver won the Pulitzer Prize for poetry in 1984, the National Book Award in 1995, wrote 15 books of poetry and essays and was described by the New York times as America’s best-selling poet, she was still largely criticised as being too simplistic, too accessible with her plain verse and lack of typographical gimmicks.

As if that’s a thing.

Where most people find poetry confusing and convoluted, never fully grasping what the poet is trying to say, Mary Oliver used the natural world, interior revelations and small, daily observances to reach the reader. In a radio interview, she said that “poetry wishes for a community”. She wanted her words to find us.

Tonight, G found me struggling with anxiety. It was a state I’d hoped he’d never see me in. Not there. Not like that. And while it must have been a shock for him, his compassion and gentleness in the face of it made all the difference. He doesn’t yet know how much he helped.

There are things other people can do for me right now, and there are things only I can do for myself.

The Journey

One day you finally knew
what you had to do, and began,
though the voices around you
kept shouting
their bad advice–
though the whole house
began to tremble
and you felt the old tug
at your ankles.
“Mend my life!”
each voice cried.
But you didn’t stop.
You knew what you had to do,
though the wind pried
with its stiff fingers
at the very foundations,
though their melancholy
was terrible.
It was already late
enough, and a wild night,
and the road full of fallen
branches and stones.
But little by little,
as you left their voices behind,
the stars began to burn
through the sheets of clouds,
and there was a new voice
which you slowly
recognized as your own,
that kept you company
as you strode deeper and deeper
into the world,
determined to do
the only thing you could do–
determined to save
the only life you could save.

Mary Oliver

It is fair to say that Mary Oliver, much like Leonard Cohen, has shown me how to live. Her words speak to you directly, straightforwardly, kindly and earnestly.

In sixty-nine days, G and I will stand in front of our friends, say some lovely words to each other and commit to continue to nurture this incredible relationship. We both know what it is to be betrayed and it makes us all the more grateful for second chances, love, and joy.

Don’t Hesitate

If you suddenly and unexpectedly feel joy, don’t hesitate. Give in to it. There are plenty of lives and whole towns destroyed or about to be. We are not wise, and not very often kind. And much can never be redeemed. Still life has some possibility left. Perhaps this is its way of fighting back, that sometimes something happened better than all the riches or power in the world. It could be anything, but very likely you notice it in the instant when love begins. Anyway, that’s often the case. Anyway, whatever it is, don’t be afraid of its plenty. Joy is not made to be a crumb.

Mary Oliver

tell me, what is it you plan to dowith your(1)

 

 

Musicless

Many Mondays have passed without music. As have all the Tuesdays, Wednesdays, Thursdays, Fridays, Saturdays and Sundays. There is little solace and much grief. I’m trapped inside a free-falling elevator plummeting to the bottom of the shaft and I don’t know when it is going to stop.

The heat of the day has been swept away by the storm. Light rain is spattering on the roof. And I am going to bed, again, to not sleep.