music monday

Music Monday | You Can’t Rush Your Healing – Trevor Hall

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Je travaille beaucoup. I work too much.

I have been thinking about how much I work. Why. And have come to the following conclusion.

Work is a safe space.

When I interviewed with my current employer, during the second interview I was asked:

What would you say your biggest weakness is?

I have been told never to answer this question in the personal, so I said that my weakness would be the limitations coming into the role being that it was not something I’d done before. My knowledge and skills would take time to build but that, having studied for a different technical role in the past, I didn’t feel it was out of my reach.

No, the interviewer (and manager-to-be) said, what is your biggest personal weakness?

‘I work too much,’ was the answer that immediately popped into my mind. Followed by ‘that is such a wanky thing to say, you can’t say that out loud.’ So instead, I said “I’m sorry, I can’t think of anything right now.”

Later, when I spoke to one of my referees, a former manager, he told me he’d answered that question by saying that I work too much; that I have a hard time saying no, that my work/life balance boundaries are non-existent and that they would need to watch me to make sure I do not burn myself out.

Fuck, I thought. That’s exactly what I had wanted to say—but who says, “I work too much,” and has the prospective employer both believe them and agree it’s a bad thing?

I am at work on overtime tonight.

Last week, I worked my two night shifts (12 hrs), one day shift (12hrs), and then attended a leadership training program in Melbourne for two more days; up at 4.45am, drove to the city (150km), participated in training, drove home, arrived approximately 7.45pm, ate dinner, walked the dog, and got ready to do it again. On the Friday, I had another additional eight-hour training day.

Which means in the last seven days I’ve worked 68 hours.

But other than the training, which is not in my comfort zone, I like being at work.

When I am there, I am surrounded by people who are largely like me. Most of us have specific, common traits that make us good at what we do, though perhaps not socially savvy. I am beginning to realise how sheltered I have been in this regard; protected in a way that I would not have, had I worked in a more relational role, or something that is front-facing with customers.

On Saturday, I completed the first of my autism assessment paperwork. There were nine documents to fill out in total. Plus, the standard consent and intake forms for the psychologist. On Thursday, I will have the first of several appointments to discuss my answers and undergo evaluation.

G is worried about how I will feel if the assessment is negative. It’s a valid concern. I am looking for something I can point to, something I can grab and show people and say “Look! Look at this here. This is why some things feel so impossible for me. Why certain supposed normal activities exhaust me. Why I have struggled so much.”

But as G observed today, I don’t look like I struggle. And that is the gap that I slide into—the crack I fall through—and have done, probably, for years. I have developed tools and strategies, whether maladaptive or not, to somehow maintain an appearance. And it is so goddamn exhausting. The struggle is almost entirely internal. And yet, it’s not. Because shortly after G said that I don’t appear to be any different to anyone else, he also admitted to adjusting his own behaviour and language to mitigate the impact of my behaviour on him, in particular circumstances. Which means my struggle with communication, my need for information and detail, does impact the people around me.

In Australia, and in Melbourne particularly, we experienced extended lockdowns during the early days of the pandemic before vaccinations were commonplace. Most people lamented being locked indoors with their families. Most people were ready to begin mixing in society again the moment they could. Most people were frustrated with the rules of when, where, and with whom you could leave your house.

Not me.

Despite the small issue of G undergoing cancer treatment during the worst of covid, I thrived. As someone who had previously believed they were an extravert, and needed people, I discovered a strange truth; that I’d rather be on my own. Or, at least, with very few people. And less frequently than I’d thought.

I learned I loved zoom because I could pretend to have eye contact without actually looking at someone. And, I could watch my own face to make sure it looked calm, relaxed, pleasant, happy. I found that I had been forcing myself to socialise in instances when I’d rather not because I believed it was what I was supposed to do. But I’d rather be at home, avoiding the world, and simply focusing on the things I found interesting. There are so many things I find interesting.

The shock of it has been unnerving. And joyful. It took until lockdown number six for me to become overwhelmed but I have realised that was due to the constant changing of routine, not the fact that we were supposed to isolate again.

Everything points to an affirmative diagnosis. But whether or not I will be able to prove that what I experience has been present my entire life is what will potentially pause the process and invalidate the final result.

Right now, I’m not sure if seeking a formal diagnosis is the right thing but as I have told everyone, my purpose in pursuing it is to more easily engage targeted assistance and therapy for very particular challenges of communication. For the rest of it, I am fortunate that I have set my life up in a way that generally works for me on most other levels.

And so, I work, a lot. Because at work, I feel safe.

Music Monday | Anything Can Happen – Tors

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The metal clasp of the lead clinks in a familiar rhythm against the name tag attached to the dog’s collar as he trots along beside me. The streetlights blink themselves on as the evening light dims and it becomes difficult to avoid the snails on the pavement in the dark. The occasional crunch underfoot induces a cringe, my shoulders shudder, and I shake off the sensation of slime on my shoe.

The dog is twelve in a few months and has slowed down over summer. His enthusiasm hasn’t waned but his energy has. He pants in the warm air as summer, which arrived late, lingers.

Days, these days, consist of the everyday; get up, go to work, walk the dog, sleep. There is pleasure in simplicity when the previous years have focused on not just the pandemic but my partner’s cancer, treatment, and recovery during it.

Last week, we had his two-year post-treatment scans and blood tests. Every three months for the last two years, the blood tests have shown no improvement in his immune system. Immunoglobulins have been undetectable much less anywhere near the normal range. But this time, there was a very small increase in two of the three. They aren’t normal, or approaching normal, but they are detectable. And the MRI showed no evidence of lymphoma.

We are celebrating; not with any grand gestures. No parties or cakes. But by simply continuing to go about the everyday.

Anything can happen.

Music Monday | Tangled Up In Blue – The Whitlams (cover) of Bob Dylan

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If it is so difficult to begin, imagine what it will be to end—
Louise Glück

I am reading Geoff Dyer’s book of endings; The Last Days of Roger Federer. I have tried and failed before to read another book by Dyer that came highly recommended: Out of Sheer Rage. Perhaps, after listening to (because that’s how I read almost all books these days) The Last Days of Roger Federer, I will be able to return to it. I was attracted to this current book by its title and my adoration for Roger (as Dyer notes, it’s always just Roger despite not knowing him, only Roger), and also due to the fact that I’d failed to read his previous book. Although, it’s not his only previous book. Only the one I’d previously attempted to read. This new book starts in a fashion I particularly enjoy; short “chapters”. Though most people would probably refer to them only as paragraphs. Other authors whose work I appreciate for the same reason; Yiyun Li in Dear Friend, from My Life I Write to You in Your Life, and Lewis Hyde in A Primer for Forgetting. These short chapters are put together to form a whole picture based on seemingly small, dissimilar or unrelated snippets. They are the style of book I someday hope to write.

Dyer moves from an opening chapter on The Doors, to a second chapter about Bob Dylan and references his song Tangled Up in Blue.

I had forgotten this song. And, when duly reminded, had only the briefest inkling that it was originally written by Dylan (Dylan, not Bob—never Bob, unlike Roger). Instead, I was most familiar with a cover version by The Whitlams. The Whitlams formed in Sydney in 1992 and released their third album, Eternal Nightcap, (which really felt like their first) when I was in my early years of university. They toured university campuses with high energy but I preferred to listen to them at home, alone, in my bedroom with favoured songs on repeat. It is this album that boasts the cover of Tangled Up in Blue. It was my least favourite song on the album and I frequently skipped over it, preferring Buy Now Pay Later (Charlie No. 2), and No Aphrodisiac. But the reference Geoff Dyer made to a lyric from Tangled Up in Blue “We’ll meet again someday, on the avenue” reminded me of a different song by The Whitlams. It was on a later album, Little Cloud. And I used to play it incessantly on the piano when I lived in Queensland. It was called Keep the Light On.

I do not cope well with endings. Even when I have instigated them.

It is impossible for me to turn off my care, compassion, and curiosity for people I’ve had a connection with—who are or have been friends—regardless of whether they’ve hurt me. Or, perhaps, especially if they’ve hurt me. (There are a couple of notable exceptions to this but I won’t be revealing who they are or my former relationship to them.) I don’t know if this is healthy. But I do know that I don’t know how to operate any other way. I always just want to know that they’re well.

Music Monday | Hands – Jewel

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Today is decompression day; I’ve worked my normal round (4×12 hour shifts on a night night day day roster) plus an additional day of overtime this last week–for a total of 60 hours from 7pm Tuesday night to 7pm Sunday night. On my first day off after work, I can barely summon the energy to read, much less write. So today’s Music Monday is short and I’ll be back tomorrow.

Because in the end, only kindness matters.

Music Monday | The Art of Escape – Hein Cooper

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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.”

Music Monday | Suspirium – Thom Yorke

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G says this music is boring. Running errands on the weekend, and listening to this album, he asked if we could change it–put something on that wouldn’t put him to sleep. I could not explain how multi-layered the lyrics were to me, how it was anything but boring. I didn’t change the album.

On Sunday, he went for the first bike ride outside since his illness. Before cancer, he used to cycle hundreds of kilometres per week. Ride for hours at a time. Race. The cancer (PCNSL) attached itself to his cerebellum; the part of the brain that is responsible for coordination, balance, language, attention, your nervous system. Damage to it can make it difficult to judge distances, spatial orientation, and can inhibit motor skills and speech. His balance was ok while he was on the bike, he reported, but he did fall off when he tried to stop.

In the first year after treatment, tapering off the steroids caused many of the typical adrenal problems associated with withdrawal; severe fatigue, weakness, body aches, and loss of appetite. The rehab program provided by the occupational therapist of approximately a half hour a day of both muscular resistance exercises and balance exercises left him exhausted. But in this last year, his endurance, stamina and exercise habits have increased. He’s been riding the bike trainer almost every day, walking every other day, and has been more diligent with his balance training. More of that will be required if he wants to remain upright on the bike. I worry that he will break his other hip, or something else, if he falls.

There are so many ways our bodies can betray us. And so many forms of recovery. It seems, we are all recovering from something. So here I am, thinking about our bodies. And what they mean for our salvation.

Music Monday | The Deepest Sighs, the Frankest Shadows – Gretta Ray (covers Gang of Youths)

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Lyrics

Cause not everything means something, honey
So say the unsayable
Say the most human of things
And if everything is temporary
I will bear the unbearable
Terrible triteness of being

Songwriters: David Immanuel Menachem Sasagi Leaupepe
The Deepest Sighs, the Frankest Shadows lyrics © Universal Music Publishing Pty. Ltd.

Virgo Season

It’s Virgo season, baby! And that means, it’s birthday month. Years ago, I started with birthday week–but I’ve now learned to stretch it out, long and slow, over the course of a month instead. Three days ago, my coffee machine died. It was just a small pod machine I purchased in Queensland from the store my ex worked at. It had done well to last nine years with the amount of use it received. But without coffee, I’m not that pleasant to be around. And since I’m off work for a few days and we are in lockdown number seven, G surprised me with one of my birthday presents; a barista machine. As much for his sanity as mine, I suspect. I’m going to have to get up half an hour earlier for work to make my coffee now, but even the almond milk I’ve converted to this year frothed nicely with the steam wand. Happy birthday to me!

What I’m Reading

Lately I’ve been ‘reading’ audiobooks. I started last year, when G was in hospital–there is something deeply comforting about having someone else read to you. In the last couple of weeks I’ve finished Sarah Krasnostein’s The Believer, Nardi Simpson’s Song of the Crocodile and now I’m working my way through Paige Clark’s She is Haunted.

The Believer is a narrative non-fiction of six separate tales expertly woven together through Sarah’s curiosity, non-judgement and her own life. In it she shares how her own beliefs (or lack of) intertwine with these six vastly different people and how we have more similarities than differences even if some people believe in ghosts, UFOs, heaven, and hell. It is a work of compassion and empathy, and, as the back of the book says, The Believer looks at the stories we tell ourselves to deal with the distance between the world as it is, and the world as we’d like it to be. How they can stunt us – or save us.

Song of the Crocodile was both heartbreaking and beautifully written. Nardi’s artful description and incredible story-telling contrasted sharply with the story itself and the pain of race relations between Indigenous and settler/coloniser families in this novel. I don’t read a lot of fiction but this was a stunning debut novel.

She is Haunted is the debut collection of short stories by Paige Clark and while I am only half way in, I’m hooked. Paige’s characters have compelling voices, and the collection features themes of transnational Asian identity, mother-daughter relationships, grief and intergenerational trauma. I will finish this book tomorrow; less than 48 hours from when I started–an extremely rare occurrence for me.

Music Monday | Hero – Mariah Carey

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We are still in Lockdown 5.0 in Victoria. I’m not sure how many weeks it’s been now. Two? No. Three? Like I said, I don’t know. So, I’ve reverted to spending hours consuming what I call “wholesome content” to keep me sane: Mostly YouTube–which is as close to a time machine as we have–and Mariah Carey, whose song Hero was released at the end of my sophomore year in high school.

I’ve also been reading, and have just finished The Believers by Sarah Krasnostein, and am now devouring Song of the Crocodile by Nardi Simpson. I’m still reluctant to call it reading, because I’m mostly listening on Audible; I don’t have the ability to sit still to read with so much anxiety coursing through my veins. But I’ve “read” more this year via Audible than in the last three years together, so that’s something.

And for anyone else who also needs a little lockdown pick-me-up, last year, the Phillip Island Penguin Parade was livestreamed during our 112 days of hard lockdown in Melbourne–and they are bringing it back from tomorrow night. The Speed Cubers on Netflix is a documentary about friendship and the fastest rubik’s cubers out there. And added recently to my rabbit-hole (and not on YouTube) is an Irish dancing group called Cairde. Apparently they have a TikTok, but I don’t, so I watch them on Instagram.

We are hoping some of the lockdown restrictions will be eased tomorrow. I’m hoping I’ll get the results of my 7th covid test that I had this afternoon. And, more than anything, I’m hoping they’ll be negative.

Music Monday | Grateful – Rita Ora

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Anniversary season is hitting differently than I expected–in a good way. Yes, it is overwhelming to be revisiting all the dates of medical procedures and big information, but overwhelming gratitude has been the predominant feeling.

Today is the one-year anniversary of the day I took G back to hospital to begin the staging scans and assessments prior to treatment. By now, he’d had multiple CT and PET scans, an MRI, and a brain biopsy–which is as risky as it sounds. He had been diagnosed with primary CNS lymphoma, all within ten days of me taking him to the hospital, but it was this week coming that they performed further scans–lumbar punctures, ultrasounds, ocular exams and more PET scans–to confirm with certainty that the cancer was only in his brain and not anywhere else in his body (which would have made it secondary CNS lymphoma).

We are four days out from the anniversary of the commencement of his treatment, fifteen days away from the anniversary of him being placed into a coma, and sixteen days from the night they called me to say his organs were failing.

And yet, here we are. One year later. He is outside, pacing, as he speaks to someone from work on the phone. This is typical; he always preferred to stand and move when having conversations in the before times, and nothing has changed. He is working. Not a lot, just a few hours per week, but working nonetheless. This time last year, we assumed treatment would be a linear process. He would go to hospital, have chemo, it would work (or it wouldn’t) and he’d come home. We did not expect nor account for any of the complications he experienced. By the middle of September last year, we weren’t sure he’d ever work–or walk–again.

And yet, here we are. Grateful is an understatement.